Author: Alexis Moberger

Terri Ann’s Recurring Stage 1 Lung Cancer Story

Post author By Alexis Moberger
Post date June 7, 2023
No Comments on Terri Ann’s Recurring Stage 1 Lung Cancer Story

Terri Ann DiJulio’s Recurring Stage 1 Lung Cancer Story

June 7, 2023

Terri Ann DiJulio has been diagnosed with lung cancer three times. In her family, six members have been diagnosed with the same cancer.

One of the most interesting parts of her story is that she never had any symptoms. Her lung cancer was discovered through an incidental pulmonary nodule found when she went to the emergency room due to feeling pressure in her chest.

With her survivorship comes a profound sense of responsibility to do something, to make a difference so that it can help other people. She believes she’s here for a reason and wants to do something meaningful with this gift of life.

In addition to Terri Ann’s narrative, The Patient Story offers a diverse collection of lung cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Terri Ann D.
Diagnosis:
- Lung Cancer
Staging:
- 1
Initial Symptoms:
- None; incidental lung nodule finding
Treatment:
- Lobectomy
- Stereotactic body radiation therapy (SBRT)
- Wedge resection

I’ve been diagnosed three times over many years of being stable so now, it’s always in the back of my mind.

Table of Contents

I never had symptoms. My lung cancer was discovered through an incidental pulmonary nodule found in the emergency room.

Interviewed by:

Alexis Moberger

Introduction

I’m an avid cyclist. I actually use cycling as a fundraising tool for [the] lung cancer community.

I’m an artist. I have an art studio in my home. I had a 35-ish-year career in event planning and just dissolved my company to move into the next chapter.

I do a little bit of everything. I was considered a master craftsman in jewelry design and metalsmithing. But, unfortunately, that is a little bit toxic so after my second lung cancer diagnosis, I gave that up.

Right now, I’m working in encaustics, which is working with warm wax, and I’m also working with alcohol inks.

I like to write, read, art, and cycle.

First lung cancer diagnosis

No initial symptoms

The most interesting part is I never had symptoms. My lung cancer was discovered through an incidental pulmonary nodule found in the emergency room. Because it was early stage, my lung cancer had no symptoms whatsoever.

My primary care physician urged [me to go] to the emergency room because I was feeling pressure in my chest. My heart turned out absolutely fine. I was just a little stressed at work. Turned out to be anxiety. It was a blessing that I had a very stressful job and ended up in the emergency room.

They found a nodule in my right lung. They watched it every six months for a couple of years. It was a follow-up program now more formally called an IPN (incidental pulmonary nodule) management program that a lot of hospitals have.

When it changed, I was sent to a thoracic surgeon who was going to biopsy it while it was on the table. It was malignant [so] they removed the lower right lobe of my lung during surgery.

I was 42 when it was found and 44 when it was diagnosed. We watched it for two full years.

I knew nothing about lung cancer then. Everybody kept saying, “We think it’s something you were born with.” It hadn’t changed. Every time I went, it was stable so I actually didn’t think about it during those two years.

Since then, I’ve been diagnosed three times over many years of being stable so now, it’s always in the back of my mind.

A year after my first diagnosis, my mother was diagnosed with lung cancer [in] the exact same way.

Removing the lower lobe of the right lung

The following year, they found something in my upper right lung so back to surgery I went. The good news is that turned out to be scar tissue from the first surgery. I was watched every six months for five years and then annually from then on.

I was no evidence of disease for 11 years between my first and second lung cancer diagnoses. Typically, at around the 10-year mark, you’re in the clear. But I wasn’t.

A year after my first diagnosis, my mother was diagnosed with lung cancer [in] the exact same way. She went to the emergency room thinking she was having a heart attack and it turns out that she had stage 3 lung cancer.

I’ve had lung cancer three times. I was the very first one in my family diagnosed. Six of us have been diagnosed with lung cancer. Two of us were diagnosed early. Two of us survived the disease.

We’ve never been able to participate in studies. When everybody was first diagnosed, they weren’t doing that so we don’t know. We did find out the mutations of one family member who died two years ago.

Find out your risk for hereditary cancer »

Based on where it was located, the surgeon told me the only surgical option was to remove my entire lung.

Second lung cancer diagnosis

Because I was in a management program, we also discovered the second early. My pulmonologist left clinical medicine [so] I had to find a new pulmonologist. We are lucky to have Penn Medicine in our backyard. My uncle was going to a pulmonologist there so I went [to] his pulmonologist.

I was on annual X-rays at that point and he said, “I can’t really see anything on an X-ray. Go get a CAT scan, come back, and we’ll probably just do annual screenings.” I got a CAT scan, went in for my appointment, and that’s when he told me I had lung cancer for the second time.

It was in my right lung. I’ve already had two surgeries [on] my right lung. It was small but based on where it was located, the surgeon told me the only surgical option was to remove my entire lung. The tumor was pretty small so we didn’t want that.

I met with radiation oncology and they were able to treat me with SBRT (stereotactic body radiation therapy), which is like targeted radiation. It pretty much obliterated the nodule.

When I was first diagnosed, that treatment was not available to me or my mother because they weren’t doing SBRT on a moving organ. You could have targeted radiation on your brain, but you couldn’t have targeted radiation on your lungs. But since the advances in treatment, I was able to have that.

I suffered an embolic stroke. Nobody really knows why other than it could have been related to my cancer diagnosis.

Differences in treatment options

My first surgeries were so difficult. I was in the hospital for over a week each time — very painful chest tubes, months of recovery, [and] thoracotomies. It was hard.

[With] radiation, [on] my third day of treatment, I went for a 20-mile bike ride. Ten days after my treatment, I was exhausted and spent about two days in bed. That was the only side effect I had from radiation.

I’ve been so lucky because my first one was diagnosed early. We’ve been watching it so every diagnosis I have has been at an early stage.

Follow-up protocol

After about six months, they found a cloudy spot on one of the vertebrae in my spine. At that point, I was following up with my pulmonologist. They sent me to medical oncology because we weren’t sure if it was damage or metastasis.

I’m happy to say it wasn’t metastasis. It was from radiation.

[In January 2018], I suffered an embolic stroke. Nobody really knows why other than it could have been related to my cancer diagnosis because a blood clot shut down my internal right carotid artery. It took me probably eight months to recover.

From then, I was stable, [had] no evidence of disease, and followed up every six months for two and a half years. Then they discovered something else and I was switched to every three months until my third lung cancer diagnosis.

‘If I go with radiation, is it possible that that will hinder treatment down the road should I have a fourth diagnosis?’

Third lung cancer diagnosis

They found a tumor in my left lung, which was my good lung.

I was getting low-dose CT scans every three months. When they discover something they’re unsure of, I get a PET/CT to see if anything lights up.

They saw something suspicious; a solid nodule that wasn’t there before. We wanted to watch it until it comes to the point [that] we’re pretty sure this needs attention. Sometimes the treatment or the biopsy is harder on your body.

It got to the point [where] it’s changed. It’s grown. It needs attention. I met with a thoracic surgeon and all the different doctors. Then I came back to my pulmonologist to make the final decision.

Quite frankly, I didn’t want surgery. I had an awful experience with my first two surgeries. I wanted radiation.

My radiation oncologist said, “You’re strong and healthy. Surgery really is your best option. But if you want me to radiate this, I can get it. It’s your choice.”

I asked him one question that changed my mind. “If I go with radiation, is it possible that that will hinder treatment down the road should I have a fourth diagnosis?”

He said, “It’s possible that if you go with radiation, you won’t be able to have surgery down the road because of the damage radiation will do to your lung,” and that is all I needed to hear.

The surgeon felt confident that he could get it and that the surgery would be easier. I chose surgery.

‘A second tumor glowed that didn’t show up on any of your scans.’
Terri Ann’s surgeon

Participating in a clinical trial to study TumorGlow

When I asked how he was going to find the tumor, he said, “My fingers are small. We’re going to make the incision and then we feel around for it.” I said, “That’s what they were doing all those years ago.”

My surgeon was a principal investigator in a study [for] TumorGlow. He said, “I don’t know [if] it will really help you, but you can be in the study.” It was a randomized phase 3 trial for an imaging agent. They inject you with a fluorescent dye the night before your surgery.

He said, “We don’t know if you’ll get it or not. I locate the tumor in the operating room. They open the envelope and if you get the study, we can use the special camera that allows the tumor to glow and we cut it out.” I said, “I’m in. Please sign me up.”

I’m a total lung cancer science geek now because of all the advocacy work I’ve done so I wanted to do it. I qualify.

I woke up from surgery and said, “Did I get the special envelope?” They said, “Not only did you get the special envelope, a second tumor glowed that didn’t show up on any of your scans.”

Find out more about clinical trials »

Both tumors were in my left lung. They’re really pretty close to each other.

Terri Ann D. Beauty and the Beast artwork

Finding a second tumor

Both tumors were malignant. Because my doctor knows who I am and how active I am, he took out as little lung as he needed to with clean margins. I went right back into my world after I recovered from my surgery. I’m still able to cycle, be active, and do all the things that I love to do.

That imaging agent was just FDA-approved for lung cancer in December 2022 so it felt amazing to participate in that, that it helped me personally, and that now it can help all these other patients.

I have a picture of my glowing tumors. My best friend knows how much I love beautiful things. I sent her that image and she sent back these altered images of that surrounding it. We titled it “Beauty and the Beast” and I now have it as a piece of artwork.

Both tumors were in my left lung. They’re really pretty close to each other so he was able to get them both out in the same wedge. He checked my entire lung. At the time, these were the only tumors in my left lung.

I like to know how things are going to work. It’s just the type of patient I am. I don’t like surprises.

Participating in treatment decision-making

I wanted assurance that it wasn’t going to be the same. I also like to know how things work. I like to understand. I remember the first time asking my doctor, “Walk me through it,” and that’s when I learned.

He said, “We collapse your lung.” I said, “How do I survive surgery if you collapse my lung?” Your other lung does all the work. When he was describing a thoracotomy, he said, “Then we cut and use a rib spreader.” I actually looked at him and said, “Okay, now I think I’ve asked one too many questions.”

I like to know how things are going to work. It’s just the type of patient I am. I don’t like surprises.

I’ve been blindsided a couple of times [when] I walked in thinking everything was going to be fine just to find out it’s not.

Reaction to a third lung cancer diagnosis

I always knew in the back of my mind that this is just part of my life, but it’s still really stressful. Even with early-stage lung cancer, knowing they can cut it out, radiate it, treat it, and you can still live, it’s still very stressful and weary, quite honestly.

It’s always in the back of my mind. It never leaves. In the cancer community, we fondly refer to it as scanxiety. You get your scan then you have to wait to find the results. Typically, I’m fine, but I’ve been blindsided a couple of times [when] I walked in thinking everything was going to be fine just to find out it’s not. That never leaves you.

Managing scanxiety

What I try and focus on is that there is nothing I can do. Until I know there is something that needs action, I’m not going to waste the precious time I have worrying about it. It can be in the back of my mind and I can acknowledge it, but I don’t have to allow it to be all-consuming.

I can continue to live my happy, beautiful, blessed life and worry about it when I have something to worry about. Otherwise, I try and put it in the back of my mind.

Exercise helps me clear my head. With everything that has happened in my family, I’ve done a lot of work on being present. I’ve done a lot of internal work. I’ve done a lot of reading. Being present and trying to bring myself into the present moment is what helps me when I’m dealing with uncertainty.

What am I doing right here [at] this moment? All I know is what’s happening [at] this very moment. Learning techniques to keep me in the present moment helps tremendously with scanxiety.

Advice from cancer patients on how to cope with scanxiety »

We desperately need advances in the lung cancer space. If I can do something to help those advances, then I’m happy to do it.

Preparing for the clinical trial

There were a ton of documents I had to sign. Quite frankly, for being such an informed patient, I didn’t read every word. You have to go through a book — all the things that can happen, all the things that might not happen. I just signed the papers.

The prep wasn’t that bad. I went the day before [and] was injected with the fluorescent dye, which took about half my day because I had to be monitored, then I got to go home. The next day, I came back for my surgery.

Deciding to participate in a clinical trial

This was an easy decision for me. It was enhancing a treatment that we felt confident was going to be successful.

I really didn’t think there would be any benefit to me other than assisting the surgeon. In this particular situation, not only did it benefit me but the fact that it could help other patients is what was most appealing to me. It was taking science to another level.

I imagine it’s scary for later-stage patients going into clinical studies where they’re hopeful it is going to work to slow down the progression of their cancer.

There are so many components to being involved in a clinical study. Putting my good result aside, the most appealing to me is that we desperately need advances in the lung cancer space. If I can do something to help those advances, then I’m happy to do it.

Thirty days after surgery, I went on a 30-mile bike ride to celebrate. I could never have done that 18 years ago.

Recovering after lung surgery

This surgery was so different than my first surgery. I was only in the hospital [for] three days. I came home, took it easy, and gradually worked my way up.

I started with walking. But 30 days after surgery, I went on a 30-mile bike ride to celebrate. I could never have done that 18 years ago. I was still in pain 30 days after surgery. I wasn’t cleared. That was pretty miraculous and something to be celebrated.

Follow-up protocol

I had COVID in August 2022 and had some lung damage so [I] was put back onto a three-month follow-up because we weren’t exactly sure what was going on.

I was just released back to a six-month follow-up and we’ll probably stay there for a couple of years as long as everything stays stable. I’m considered no evidence of disease right now.

Every once in a while, I get a text or an email from one of my doctors saying they have a patient that’s interested in advocacy.

Being a patient advocate

I’m a pretty outspoken advocate for our community. I get really involved in fundraising and legislative policy.

I tell them all the things I’m involved with and that our community would welcome other patients. If any of their patients want to get involved, [they’re] free to pass along my information. Every once in a while, I get a text or an email from one of my doctors saying they have a patient that’s interested in advocacy.

I end up working with fellow patients of my doctors, telling them all the ways that they can get involved if they’re interested. I tell my doctors who I am, what’s important, how I can help, and how I want to help.

Cancer patients share how they advocated for themselves »

We go to Washington as a community and ask our representatives to support an increase in the lung cancer research program.

Terri Ann D. lung cancer advocates outside Capitol Hill

Legislative work for lung cancer support

Some of the legislative work we’re doing is asking for an increase in federal funding.

Lung cancer kills more people than any other cancer, period. As women, we have a greater chance of dying from lung cancer than from breast cancer. Lung cancer receives a lower amount of federal funding than other cancers.

We go to Washington as a community and ask our representatives to support an increase in the lung cancer research program. The lung cancer research program is through the CDMRP (Congressionally Directed Medical Research Programs) through the Department of Defense because the military has a greater risk of lung cancer from all the chemicals and everything the military has to go through.

We asked for an increase. We got $25 million. We’ve gone in and asked for $60 million. That’s some of the legislative policy work that we’re involved with.

I’m also a consumer reviewer for the Lung Cancer Research Program. I get to see firsthand all the great research that’s coming through, but all the great research that has to be turned away, too, because we don’t have enough funding so that’s why we need more funding.

I’m here for a reason. I want to do something meaningful with this gift of my life.

Educating people on lung cancer

I try and get out and speak as much as possible. Through my lung cancer journey, I personally have found my calling. I will speak to anybody who will listen about the risks and facts about lung cancer so that we can spread the word.

If I tell you and you tell someone else and you’re in a conversation at a cocktail party and you mention this conversation, it’ll trickle down the lane. Maybe that person will say, “Oh, I’ve got risk factors. I’ll go get screened.”

We need to educate each other. We need to treat lung cancer patients with dignity [and] kindness, not ask them the smoking question, the elephant in the room. Move forward with getting people screened, finding the disease early, and advancing research treatment options.

With my survivorship comes a profound sense of responsibility to do something, to make a difference, to do something with my family’s journey so that it can help other people, potentially the next generation of my family. They’re not here, but I am and I’m here for a reason. I want to do something meaningful with this gift of my life. And I found it through this.

Learn about lung cancer from first symptoms to navigating life with cancer »

No one is going to be more invested in your lungs than you are.

Words of advice

Taking extra steps

I have an amazing medical team. My medical team consists of an interventional pulmonologist, a medical oncologist, a thoracic surgeon, and a radiation oncologist. Because of my family history, I’m not a typical early-stage patient because my body seems to keep producing malignant tumors in my lungs.

I go to my pulmonologist and when something is discovered, we talk about treatment options. Even though I’m followed by my medical oncologist, when we discover something, I usually meet with my interventional pulmonologist because he helps me weigh out the best treatment option. Is it radiation? Is it surgery?

I’m the type of patient that likes to really understand what’s going on. I ask a lot of questions. I want to understand the treatment options so I can make an educated decision.

I encourage other patients to ask as many questions as they want to make sure they understand. No one is going to be more invested in your lungs than you are. They can be the most amazing doctors, but it’s still your body.

I’ve been blessed with doctors who understand that I’m not questioning them. I’m trying to understand and educate myself.

Being an involved patient & a self-advocate

I don’t know that I was as committed to the process in the beginning as I am now.

My very first pulmonologist would hold my scans up on the screen and patiently answer all of my questions. He would point out everything so I understood it. By my second diagnosis, I was used to looking at my scans and understanding what my lungs look like.

I’ve been blessed with doctors who understand that I’m not questioning them. I’m trying to understand and educate myself.

I learned so much more going through my mother’s lung cancer journey and my aunt’s lung cancer journey because they had different stages of lung cancer. I’m a pretty well-rounded patient now. I understand not only my cancer, but I understand later-stage cancers, too.

Terri Ann D. lung cancer advocates White Ribbon Project

Knowing can save your life. Not knowing can make the journey so much harder.

Following the doctor’s orders

I did what I was told, which I don’t always do, but I follow up. I take follow-up very seriously.

I encourage other patients: if the doctor tells you to follow up, follow up. Take it into your own hands. Make those appointments and make sure that you follow the schedule.

Early-stage lung cancer can look like riding your bike 400 miles over five days for a charity ride. Early detection saves lives.

People get busy, but people get scared, too — afraid of the unknown or not wanting to think about it. Knowing can save your life. Not knowing can make the journey so much harder. Break through that fear, follow up, and stay on top of it.

Make sure doctors know who you are. It’s just as important as what your disease is if not more.

Make your needs known

I make sure my doctors know who I am. They all know I’m an avid cyclist. They all know I’m fairly athletic. They all know my personality, that I’m optimistic [and] that I protect the joyful things in my life. I think that benefits me because then when they’re treating me, they know better what my goals are.

For example, I met with one doctor on the tumor board because we were looking at ablation. I decided against ablation, but when I met with this doctor, he said, “Oh, right, you’re that patient that cycles all over the country. Okay, let’s see what we can do here.”

When the doctors know you, I feel like they’re a little more invested when they understand your priorities. I do encourage everybody to make sure doctors know who you are. It’s just as important as what your disease is if not more.

I’m a direct communicator so I just tell them who I am and I tell them my goals. I told my surgeon, “How long do you think until I can ride my bike? Because that’s really important to me.” I asked those questions before surgery was even scheduled so I could understand.

If you can find out if it has a mutation, there might be a better first-line treatment for your particular type of lung cancer.

Terri Ann D. lung cancer advocates at Senator Patrick Toomey's office

Learning about genetic mutations & the importance of biomarker testing

Something that was surprising to me is I thought it was automatically done. I asked for it.

If you’re at a point where you’re going to have a tumor or nodule biopsied, make sure you ask, “Are you taking enough tissue to do biomarker testing?” If you can find out if it has a mutation, there might be a better first-line treatment for your particular type of lung cancer.

I made an assumption that all facilities were just automatically doing this testing and they’re not. I would definitely suggest that all patients ask and actually demand it because it could be life-changing if you have a particular marker that can be treated a certain way.

Every cancer can be different. My first, second, and third lung cancer could have all had different mutations. It’s not guaranteed that it’s always the same cancer so it’s really very important to do biomarker testing.

Find out the latest in genetic testing »

I encourage patients to find other patients to speak with to help mentor them through the process.

Finding support as a lung cancer patient

For newly diagnosed patients, it can be really overwhelming. I didn’t know what I know now when I was first diagnosed. I went on the Internet and, even though I was [at] an early stage, anything about lung cancer was really pretty discouraging.

We have a lot of advocacy groups. We have lung cancer advocacy groups [and] groups geared towards certain mutations.

I’ve spoken to a lot of newly diagnosed patients and connected them with other patients in a similar situation. I’m also in a buddy program through GO2 for Lung Cancer.

I find that it’s really helpful to talk to other people who have gone through what you are going through or about to go through. That can offer hope, offer information, [and] guidance on how to conduct your meetings with your doctors. I encourage patients to find other patients to speak with to help mentor them through the process.

Thank you to The Patient Story for all you’re doing for our community and for patients everywhere, for helping spread that word to our community and to the cancer community as a whole. We need patients to know they’re not alone. There are resources out there.

Terri Ann D. GO2 Foundation for Lung Cancer

Thank you for sharing your story, Terri Ann!

Inspired by Terri Ann's story?

Share your story, too!

Nicole’s Hodgkin’s Lymphoma Story

Post author By Alexis Moberger
Post date June 3, 2023
No Comments on Nicole’s Hodgkin’s Lymphoma Story

September 11, 2023

Nicole’s Hodgkin’s Lymphoma Story

Interviewed by:

Alexis Moberger

Nicole, wife and mother of three, was diagnosed with classical Hodgkin’s lymphoma in November 2022.

She only experienced general malaise and had a rash appear randomly throughout a six-month period. Desperate for answers and without any discernible symptoms, she turned to a functional medicine doctor who decided to give her a multi-cancer early-detection test.

Testing positive for cancer through a Galleri test got the ball rolling and got her started on her journey. Throughout her experience, Nicole faced challenges, including the mislabeling of her symptoms as anxiety and the need to advocate for herself with each doctor she encountered. To feel less alone, Nicole sought out online support groups and found comfort in The Leukemia & Lymphoma Society.

In addition to Nicole’s narrative, The Patient Story offers a diverse collection of Hodgkin’s lymphoma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Nicole D.
Diagnosis:
- Hodgkin’s Lymphoma
Initial Symptoms:
- Fatigue
- Random rash
Treatment:
- Chemotherapy: ABVD (doxorubicin, bleomycin, vinblastine, dacarbazine)

Introduction

I’m married. I’m a mom of three. I live in New Hampshire.

I love gardening. I love arranging flowers. I don’t own a business but would like to, in my dreams.

I’ve done digital marketing for 20 years.

I love my friends, hanging out, and the idea of going back and doing that all.

Pre-diagnosis

Initial symptoms

After my last baby in 2021, I didn’t come back the way I [did with] my other babies. But I was over 40 [and] had thyroid issues. Everything I was feeling could be attributed to my thyroid. I was trying to see [an] endocrinologist. It was around COVID so it was impossible to get in.

I had a weird rash on my arm. It goes away [and] comes back. I couldn’t figure it out. Did I have wine? Did I have cheese? Did I have bread? What’s happening? Did I get too much sun? I had no idea. Other than that, I was pooped.

They wouldn’t see me for six months. My physician kept attributing it to lack of sleep, thyroid, anxiety, and random things I knew weren’t right.

I knew something was wrong. I didn’t have the B symptoms, night sweats, itching, and temperatures. I was checking everything. I was looking for anything because the minute I had something, I could be seen by someone else. At that point, my cycles were off and I was feeling so shot and really sad, frustrated, and lost.

I [went] to see a functional medicine doctor. She’s my neighbor so I walked across the street and said, “My thyroid is busted. I can’t get in until December.” This is in the middle of the summer. I’m sweating. I can’t leave my house. I have a baby, the kids, everything. She said, “I’ll take your blood work.”

She started seeing me as a patient. She fixed my thyroid, by the way. It was off the charts. That wasn’t the problem, but my thyroid was to blame for some of these things.

I spent a couple of months with her going through everything and trying to make changes in my diet, my sleep, [and] my lifestyle.

Everyone always puts “anxious” on my chart. It’s [been] on every chart ever since I started seeing doctors. Generalized anxiety disorder, I think

She said, “I know you’re really anxious. I had a pharmaceutical person come in for something called Galleri. It screens for 50-some-odd cancers. Why not do it? It’s for 50 & older, but I’m your physician so I can get it approved. This will ease your anxiety. You think something’s wrong with you. I don’t see anything wrong with you. Your labs are perfect. We’re working on your thyroid. We’re getting your weight down.”

I thought I was feeling better, but I was pushing so hard to change everything so some of it was psychosomatic.

Putting the blame on anxiety

I’ve spent a lot of time with different doctors. I’ve been able to speak to or change doctors because of how I relate to them. I explain that I know about my anxiety. I’m very, forthcoming about my anxiety and it’s very specific to [my] health.

But I also have [my] gut and I haven’t been wrong a lot in my life. I’ve had things happen. [With] my third child, I had HELLP (hemolysis, elevated liver enzymes, and low platelets). I just felt weird. My baby and I wouldn’t be here if I didn’t say something.

I preface a lot of my first appointments with, “I understand that this might appear as anxiety or that I’m tightly wound.” I idle high. They either get it or they don’t and I explain that I know it.

In this process of lymphoma, I’ve told every single doctor, “I know I’m not your only patient and I get that. I’m not minimizing myself, but I’m also aware that you’re running around. But you have to understand, I’m here with you now.”

I started being very forthcoming [with] doctors [at] around [age] 20 or so. Along the way, I learned how to talk to them and if it doesn’t work, it doesn’t work.

Getting a blood test that screens for different cancers

I was ready for any test. My functional medicine doctor said, “It’s a blood test. It screens for certain cancers. It has a ton of false positives so be aware of that.”

I believed that this would change my anxiety. When people take your blood, you start to feel better because everyone always banks on blood.

It’s not cheap so I had to find the funds and dive right in.

I read my little pamphlet. I went to the site, but it was all very new. I read as much as I could about it.

I hadn’t seen my PCP in a while. I haven’t fired her because I need her for my insurance because a functional medicine doctor isn’t covered; it’s an extra.

I waited for two weeks. Every time I went to her or any specialist, everyone kept asking, “Are you going to finally be satisfied when you find out you don’t have cancer?”

I wasn’t sure it was cancer. I don’t have the words to explain what I know. I kept thinking to myself, I don’t know where everyone’s going here, but I haven’t got my results yet.

Getting the results of the cancer detection test

It came to her in the mail. They called me to schedule an appointment and I said, “I know why you’re calling me. Can we just get on the phone? We’re not going to wait till next week.”

I tested positive for a cancer marker. There [are] false positives so everyone went to the false positive conversation. Now we have to prove that it’s real.

Getting a CT scan

I wanted to know what was next. Like every other process, you have to prove you need certain tests. No one felt anything. I still don’t feel anything.

I had to go through all the steps of going to a PCP, showing this test, asking for a CT scan, getting that approved, and pushing it through insurance. I had to work with my employer, my PCP, my functional medicine doctor, and Galleri. I had to make sure I had everything.

This is where you learn self-advocacy and the fight. I don’t mean to be pessimistic, but it is a fight. You have to go all in with everything and push, push, push.

I finally got in to get a CT scan. Of course, it wasn’t covered because of all these things. They picked an area and there was a piece where they thought they saw something.

I had to go back, but I had to ask for all of those things again to get the rest of my area. They found a mass behind my chest. There’s no way anyone was poking anywhere. There were a few “friends” around it, but nowhere palpable.

Finally, I have the thing that I need to go somewhere.

Diagnosis

Reaction to finding a mass

This isn’t the one I expected because I didn’t know you could have something and not feel it.

I was also scared. All I thought about was my kids. Where do you go from here?

Now I’m really in the dark. You can say to anyone, “Don’t Google.” I’m in marketing. I’m a researcher. That was my reaction.

I knew I had a long road. I knew that because getting to that point took two and a half, three months.

Feeling something was off & no one was listening

I actually said to my doctor, “I told you so,” but she knows me well enough to laugh. I told my husband, “I told you so.” I wish I was wrong.

Ultimately, I was glad I was right, mad I was right, but I knew I had a road ahead of me. I didn’t know what that meant and neither did my functional medicine doctor.

Getting the mass biopsied

It turns out the CT wasn’t proof enough to get into a cancer center or a professional oncologist.

I found a thoracic oncologist. He had to reach out to a bunch of people because it was mediastinal, meaning it’s behind my chest near my heart. I got that done before Christmas and they had to send it out. I had to wait, of course.

I told my surgeon, “When you go in there, I open myself up to infection.” Sure enough, I got the flu. Then all of the symptoms came. I lost my voice, I got sick, I got [a] fever — all the things happened.

I lost my voice for months. That mass was starting to press on my vocal cords. Everything started triggering my immune system. They started moving me along fast. Everything started getting worse. Honestly, I felt worse after the biopsy than I did before.

Waiting for the biopsy results

While waiting, I had to get things approved, like the surgery, then I had to wait for the biopsy results. It was Christmas time so I had to get my head in the game.

Everyone thinks that it comes back quickly. Everyone will always say waiting is the worst. You expect it to happen fast. It doesn’t.

When my biopsy results came back two weeks later, it wasn’t conclusive.

They said some of it was crush biopsy and they had to send it out to another institution for another person to look at. I lost my mind. More time? Is it growing? Is it spreading everywhere? Where is it going?

Getting the biopsy results

I finally got [a] cancer consultation because I had proof on paper. [The] results of my biopsy came in through my portal, but no one called me.

The surgeon actually called me and apologized. There [are] so many things that go on that you just have to do all your work. You’re also pooped out and sick.

Even though I finally had an answer, I was still losing my mind. It was the loneliest feeling. I thought I was just being emotional.

Getting the official diagnosis

When I got my biopsy from Utah, it was diagnosed as Hodgkin’s.

I’m in a small segment. There [are] only 8,500 diagnoses of classical Hodgkin’s lymphoma a year in the United States. I’m in a different age range and it’s a smaller subset of people. As a mom, I felt extra lonely in a weird way because I couldn’t find anyone. I also didn’t know if I was overreacting.

I chose to go to Dana-Farber.

I didn’t get a PET until after my consultation and after they started planning my chemo. I had my chemo and my port dates before I even had my PET date.

Treatment

I got my port in then started chemo four days later. After my PET, they said it was between stages 2 and 3. They wanted to start pumping me with chemo to see what would work and what wouldn’t.

With lymphoma in general, staging is not nearly as important. Blood cancer staging is different. Nothing is more annoying than someone saying, “I’m sorry you have cancer. What stage is it?” It’s the third question everyone asks before, “How are you?”

ABVD chemotherapy

My treatment plan was ABVD for six cycles, which is 12 rounds.

Side effects of ABVD chemotherapy

In the first infusion, my side effects almost were all psychosomatic in terms of it was obviously anxiety. I asked for fluid so I’d be extra hydrated. It’s important to hydrate the day before.

I tried to go in as a good student. You meet with the nurse the day before and but I felt I almost knew as much as she shared in terms of what to buy, what to do, and what to expect. I had so much time. Why not prep? That’s my nature. I knew what was coming.

My first side effects were straight-up anxiety. They gave me three different anti-nausea prescriptions, but it was all anticipatory and panic. During and after my first infusion, my body was fair, my brain was not.

Over time, the side effects are dehydration [and] constipation from the anti-nausea meds.

I felt like I was in a chemo coma like someone was laying on top of me. It’s like the worst flu. I wanted to get up and do things, but I knew to lay there because the more I rested, the better I would bounce back.

My appetite was quite good. I was eating all my favorite, terrible foods. I know so many people go into health mode, eat really well, and do everything by the book. I admire them. I thought, I’ll eat because I’m hungry and I’m scared that one day I might not want to.

I took a lot of Epsom salt and baking soda baths. I drank a ton of water and liquid IVs. You feel crinkly and tight. I knew the more I could get out, the more I could start moving.

As you go on, it weighs on you heavier. I have a harder time bouncing back. I would say my third or fourth day is [when] I get really frustrated and force myself to really dive in. I know it’s not necessarily the best idea, but it does help in that what chemo does to your body. You start to get a little looser. You’re moving and doing things.

I’m so dizzy sometimes [that] I don’t even know what to do with myself. Sometimes I feel it coming. I’ve never passed out before, but I feel like that’s what happens.

My appetite is getting worse. I’m not as hungry for my favorites. I can’t eat as much. I still eat mac and cheese. Why not? I already have cancer. Let me have mac and cheese. I used to be able to eat the bowl, but now I’m slowing down.

People imagine what they see in the movies. You’re going to be puking and basically hugging the toilet. I look very, very frail and unable to eat. This may happen [to] some people.

Hair loss from cancer treatment

Prior to starting chemo, I already cut my hair shorter because it was falling out. I did that in anticipation. I was working my way up. I already felt less feminine. I hate to say it, but I did. My son said, “Mommy, you look like a boy from the back.” Ugh, but it’s fine. It was just funny.

The day after my second treatment, I leaned over the sink and had a hot flash. I said to my husband, “Kevin, get the buzzers.” All the kids shaved and Kevin helped. Everyone got a turn.

I was trying not to cry. He was shaving my head, saying, “You’re pretty. You’re pretty. You’re pretty.” I had to make it quick. I wanted the kids involved because I don’t want them to be shocked when they saw me again. I was just getting a haircut and it’d be fun.

I hardly wear a hat. I get hot. Now my perspective is a little different. I’m totally fine with it. I’m shocked every now and then.

My eyebrows and my eyelashes [fell] out.

Mid-treatment scan

I’m trying not to look at it as an endpoint.

I had another PET scan. My ABVD is working on the “friends” and slowly on the big mass. I’m staying with ABVD. My body is receptive.

The point of the next PET scan was: is this cocktail working for your body? There are people that just are resistant to it.

There are many first and second lines of lymphoma cocktails. I wasn’t nearly as anxious as I thought I would be going into the PET scan.

The Leukemia & Lymphoma Society is a great resource for learning. It’s good to know there are other lines of treatment, even for the subsets of non-Hodgkin. They didn’t know which one I had when they sent it out to Utah so I was looking around.

Finding support

Feeling alone

I felt different before and after. Before, no one was listening. Even my own family is used to me saying, “I feel like something’s wrong.” Not hypochondria but they probably view me that way now.

You work hard just to be heard. I was feeling very alone because no one was listening. Then when everyone had reason to listen, I felt alone because the minute I finally had the diagnosis, I didn’t fit in. When I looked up what I had, I didn’t fall into the early or late diagnosis.

That made me wonder: What does that mean for how I’m treated? What does that mean for how my life is? Are you going to treat me the same way you would treat a 20-year-old? I don’t think I can take it. I remember being 22. I had more energy.

I even posted [on] social media. Are there any people between the ages of 35 and 45? Looking for cases similar to mine, maybe just a little. That’s where that loneliness fell into play.

My oncologist helped point me in the direction of The Leukemia & Lymphoma Society and social workers. I had my therapist.

The more I reached out to others, it helped, even though they could be in another country. Simple advice of MiraLAX the day before or this lotion because of rashes. The loneliness subsides a little bit when you know that you can reach out or get advice.

I’m not sure how I got through that loneliness before I was diagnosed because no one was listening until I got the results. I had to get the results to prove it was time to actually do something about it. I really had to fight the first portion of the loneliness.

This portion that I’m in now is like the world is happening without me and the whole world is living. It comes day to day, person by person, or connection by connection. Having a regular conversation will carry me through the next few days.

My therapist is hardcore. She does not like crying. “What if it doesn’t work?” She doesn’t like any of that stuff. Pick your therapist how you want, but I needed a drill sergeant because I could go down a rabbit hole.

Joining support groups

I’m on Hodgkin’s and non-Hodgkin’s Facebook groups. I’m also on refractory/re-occurrence because they have great advice in regard to [the] post-first line of treatment.

I’m proactively reaching out to moms who are in a panic. No one understands. Your sleep schedule’s off and you’re panic writing just to write back or have someone write back to you.

I didn’t even go on Reddit because I thought it was for the young folk, but there is a huge lymphoma community there. They are very supportive considering the vast age range. I can’t believe the number of 70- and 80-year-olds on there.

There are a lot of moms saying, “I don’t even know what to do. I’m going to lose my mind,” so I reach out. People really do keep cancer private, which is interesting. There could be a million reasons why, but I want to be very, very out there about it.

I was very, very self-conscious about the hair. I look pretty sick. Someone tried to help me with my bags at the grocery store. She was 70 and I just had that moment of I’m not sure if I’m grateful or, “Oh my, I’m that person.”

I put myself out there because I know that I might be triggering some moms. I see moms looking at me with their kids. I see the slow down when [they] see me.

I went to get my hair cut before it was shaved. There were moms in the barbershop with their kids. I was so scared I was going to trigger these moms like, “Whoa! That could be me. She’s my age. She’s got a kid. She’s got a kid younger than me.”

It’s not me against chemo and cancer. It’s me and chemo against cancer.

I’ve reached out to moms and other women because I see them saying, “How do you do this when you have a three-year-old?” I have one, four, and seven. If you’re married or you have a partner, they can help as much as they can, but you want to be part of everything.

People imagine the worst. They’ll never pick up their baby. They’ll never be able to breastfeed. Some women get diagnosed while they’re pregnant. Some women receive ABVD while they’re pregnant. It’s a testament to the strength of women.

When I reach out, it feels better. I don’t know anything, but I do know what my experience was. It does help even if it’s not the same.

One woman had all these stomach issues and it’s because she was taking stool softeners in pill form. They sit in your system, as I’ve learned, and they don’t go through your system like regular liquid. The pain is unbelievable.

You feel lonely and even though you might not have the same side effects, it’s better to know that there are other people and you can talk to them. That’s why I was all over The Patient Story even with people with different cancers because I was so desperate to not feel alone.

Words of advice

I highly recommend chewing ice during the A portion of your ABVD. Use baking soda and salt water as a mouthwash when you start and when you go through it.

When I was going through the beginning of my journey, I came upon The Patient Story and wanted to speak out about being your own advocate and speaking to the professionals with confidence and strength.

If you don’t trust someone, move on. Use your voice. Talk to professionals. Go to The Leukemia & Lymphoma Society. Reach out to whoever you trust.

Don’t lose hope. You’re not alone. I was an outlier in terms of the Hodgkin’s, my age, being a woman, a mom, and all that. That’s why I wanted to reach out to moms. You feel alone and you have a lot on your plate. You’re not alone.

While you have the time, breathe and do your homework. Look at it as the biggest project of your life. Put all of your effort into how you are going to handle it. You’re your biggest project.

The minute I knew something was up, I got a therapist that has cancer patients. I highly recommend that.

Not everyone could afford to do what I did and I don’t even really know if I should have done what I did. I hope one day Galleri won’t have to be out of pocket.

The earlier you get ahead of anything, you’re in control a little bit more. When you’re sick, you feel out of control and I think that that’s a huge thing.

You have those days where you just sit in bed and the whole world is outside. I can’t even tell you how many times I hear everyone outside, it’s a beautiful day, and I couldn’t even move. I was a wreck.

Change your overall environment. Instead of rotting in my room, I try to move to the porch for a little while so I can see or talk to people. I don’t like when people come up to me when I’m feeling really sick.

I don’t want to feel left out of the world because you do feel left out of the living world. As much as I want to say that it gets better, I don’t know if it will if I don’t proactively do something about it.

I have three kids and a husband and sometimes, I feel very, very alone in this house. They have to do things. They have to be happy. They have to live.

Remember that it’s up to you to reach out. Have a conversation. Find someone that has something similar. I haven’t done any in-person support groups, but I have loved The Leukemia & Lymphoma Society and its online boards. I can’t believe how many older people are on there giving really wise advice.

Loneliness is really tough when you’re sick because you don’t have the energy and you have to push yourself to solve it. Your brain can do some crazy stuff, especially if you sit on a computer or your phone.

You can drive yourself crazy and you can drive yourself sick. There is a mind-gut connection. People need to be a little aware of what they’re doing to their bodies when they are so sad or lonely.

I keep saying the word lonely, but it’s not necessarily lonely. You’re no longer part of the world you were. You will never be the same again, no matter what. You’ll never have the same life. I think that’s a really tough thing to get your head around.

It’s great to talk about it instead of pretending it doesn’t exist. If I didn’t talk, I wouldn’t be okay. Even though ABVD is currently working the guys in there, if I didn’t use my voice to help me fight it — find it, fight it, and then help solve it — I would be a mess.

You need to speak. Educate yourself. Always push a little further. Trust your gut.

Thank you for sharing your story, Nicole!

Inspired by Nicole's story?

Share your story, too!

More Hodgkin’s Lymphoma Stories

Madi J., Hodgkin's, Stage 1B

Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms: Shortness of breath
Treatment: 3 rounds (6 infusions) of ABVD chemo

Danielle D., Hodgkin's, Stage 2

Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)

Lani S., Hodgkin's, Stage 2

Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles

Jason F., Hodgkin's, Stage 2A

Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions

Logan A., Hodgkin's, Stage 2A

Cancer details: Diagnosed at age 15
1st Symptoms: Lump in neck & fatigue
Treatment: 4 cycles of ABVE-PC chemo

Helicon K., Hodgkin's, Stage 2A

Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)

Lauren C., Hodgkin's, Stage 2A

Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse

Wade W., Hodgkin's, Stage 2A

Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)

Moe C., Hodgkin's, 2B, Relapse

Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant

Fabiola L., Hodgkin's, Stage 2BX

Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab

Stephanie O., Hodgkin's, Stage 2B

Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)

Chelsea B., Hodgkin's, Stage 2B

Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy

Katee P., Hodgkin, Stage 2B

Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: AAVD chemo, clinical trial w/brentuximab (Adcetris) + nivolumab (Opdivo) immunotherapy

Mara T., Stage 2BX (Bulky)

1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health

Jade B., Hodgkin, Stage 2X

Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)

Tylere P., Hodgkin, Stage 3

Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT

Kayla T., Hodgkin's, Stage 3A

Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant

Erica H., Hodgkin's, Stage 3B

Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)

Nicole M., Hodgkin's, Stage 4

Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)

CC W., Hodgkin's, Stage 4

Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)

Lia S., Nodular Sclerosis, Stage 4A

Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms: Extreme lower back pain
Treatment: ABVD chemotherapy

Ava O., Stage 4B

1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go

Delishea A., Hodgkin's, Stage 4B

1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, immunotherapy (Adcetris)
Topics: Finding community & support, self-advocacy

Emmanuel S., Relapsed Hodgkin’s

Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: ABVD, ICE; autologous stem cell transplant; Targeted therapy: Brentuximab

Kelsey R., Hodgkin’s, Stage 2A

Symptoms: Bad leg itching with no rash, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation

Manda M., Relapsed Hodgkin’s, Stage 2B

Symptoms: Loss of menstrual cycles, iron deficiency, itching, night sweats, tiredness, night terrors, trouble breathing, difficulty concentrating, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation, ICE chemotherapy, bone marrow transplant

Samantha S., Relapsed Hodgkin’s

Symptoms: Fatigue, cough, enlarged lymph node
Treatment: ABVD chemotherapy (later changed to AVD), Brentuximab, Cyclophosphamide, BEAM chemotherapy, autologous bone marrow transplant

Nicole D., Hodgkin’s

Initial Symptom: Fatigue, random rash
Treatment: Chemotherapy (ABVD)

Patrick C., Hodgkin’s Lymphoma, Stage 2B

Initial Symptom: Dry cough, difficulty breathing
Treatment: Chemotherapy (ABVD)

Danielle D., Classical Hodgkin's Lymphoma, Stage 1 Diagnosis: Stage 1 Classical Hodgkin's Lymphoma Symptoms: NoneTreatment: Chemo, ABVD, Immunotherapy, Nivolumab, Brentuximab, Bone Marrow Transplant

Stephenie P., Classical Hodgkin's Lymphoma Diagnosis: Classical Hodgkin's Lymphoma Symptoms: Bumps along the neck, Night sweats, 25-pound weight lossTreatment: Chemo, ABVD, ICE, Brentuximab, Radiation, Stem Cell Transplants

Cancers Chemotherapy Colon Colorectal ileostomy Patient Stories

Jason’s Stage 4 Colorectal Cancer Story

Post author By Alexis Moberger
Post date June 1, 2023
No Comments on Jason’s Stage 4 Colorectal Cancer Story

Jason Randall, A Stage 4 Colorectal Cancer Survivor

June 1, 2023

Jason’s Stage 4 Colorectal Cancer Story

Jason’s cancer journey began in 2005, in the middle of his Navy service. He began experiencing stomach issues and was diagnosed with GERD. Much later, in 2018, he was seen by his doctor when he developed severe abdominal pain and infrequent bowel movements. A scan revealed 80% of his liver was covered with metastatic disease, which led to a stage 4 colorectal cancer diagnosis.

After years of fighting Veterans Affairs to prove his cancer was connected to exposure to cancer-causing chemicals during his Navy service, restitution was granted through the Pact Act – an Act that grants better healthcare and funding to veterans exposed to toxic chemicals.

Jason shares his cancer journey, his work with COLONTO WN – a colorectal cancer support network, and how he overcame liver surgery and chemo after doctors said it couldn’t be done.

Just this year, Jason and his wife launched Kohala House of Healing, a cancer retreat in Hawaii. The lush hideaway is designed for those affected by cancer to find hope, healing, and renewed purpose.

At the Patient Story, we feature the real voices of cancer patients to empower and offer hope. Explore more Colorectal Cancer Stories for further inspiration.

Jason Randall shares his stage 4 colorectal cancer story

Name: Jason R.
Diagnosis (DX):
- Colorectal Cancer
  - Primary mass in the sigmoid
Staging: 4
Symptoms:
- GERD
- Abdominal pain
- Infrequent bowel movements/ constipation
- Belly button discharge
Age at DX: 35
Treatment:
- Surgery
  - Hepatectomy, cholecystectomy, lower anterior resection, lung ablation, port placement, fistulotomy
- Chemotherapy
  - Oxaliplatin (OX), Irinotecan (IRI), 5FU (FOLF)
- Radiation
- 2 Y-90 radioembolizations

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Interviewed by:

Alexis Moberger

Table Of Contents

Symptoms & Diagnosis
Treatment
Getting an Ostomy
Post-Treatment Tests & Scans
Reflections

Symptoms & Diagnosis

Tell us about yourself

My name is Jason Randall. I live in Eudora, Kansas with my wife and 3 children. We live on a hobby farm. I was in the Navy for 5 years from 2003 to 2008. After that, I went to school.

My wife and I were best friends in high school. After the Navy and college, we reconnected. When I came back from Hawaii for a semester at the University of Kansas, we started dating. My wife has our daughter from a previous relationship, who I’ve adopted.

We’ve lived on this hobby farm for 10 years. I’m a cartographer by profession. Technically, a GIS analyst. We like to fish as a family. We go to the gym and swim quite a bit.

When did you first notice something wasn’t right?

In about 2005, right in the middle of my Navy service, I had some stomach issues that they tested. They came to the conclusion that I had GERD reflux disease, so they put me on omeprazole and Zantac-type medications. It was fine for years after that.

Receiving a diagnosis

About 2018, I was diagnosed with stage 4 colorectal cancer. It blindsided us. I say us as in my family because I always include caregi vers. They are often overlooked in this process.

They saw that about 80% of my liver was covered in what appeared to be metastatic lesions…It started me in this world of advanced-stage colorectal cancer.

Jason and his family were blindsided by his cancer diagnosis

Jason's scans revealed 80% of his liver was covered in metastatic disease

Two weeks before, I had some severe abdominal pain that I’d never had before and 2 weeks before that, I’d noticed that I wasn’t going to the bathroom at a regular frequency. Then it just stopped and I started getting abdominal pain. That’s when I thought something was wrong. I need to go get this checked out.

My mom had diverticulitis quite a bit over the last couple of decades and they said, “It’s probably that. Let’s get a CT scan just to make sure so we can put you on antibiotics for it.”

I had that scan on July 16th. They saw that about 80% of my liver was covered in what appeared to be metastatic lesions. That prompted a PET scan on the 17th which confirmed it. My liver, the large majority of it, was covered in metastatic disease. It started me in this world of advanced-stage or stage 4 colorectal cancer.

Was there any connection between your GERD and colorectal cancer?

I brought that up along the way many times after I was diagnosed. The doctors never put them together because they generally think, anything in the upper esophagus or upper GI tract is Barrett’s disease or esophageal cancer instead of colorectal cancer.

Jason's doctors believe his advanced cancer stage means he began developing cancer 10-15 years prior to his diagnosis

My colon, where we found the tumor was at the sigmoid part of my colon, right before the rectum. So there really wasn’t a tie to it.

Ironically, after I had surgery to remove 30 cm of my colon, my GERD completely went away. It cued me to ask, what’s going on here?

If you look at the history all the way back to 2005, I was on ranitidine, which is Zantac. Then when I got out of the military into the Veteran Affairs (VA) system, I was on omeprazole for 10 years. My doctor mentioned that the advanced stage of my disease and the extent of it [means] it had been in me for about 10 to 15 years at a minimum. That squarely placed it right in my military service.

Did the VA take responsibility for your diagnosis after your exposure to cancer-causing chemicals?

Not definitively. Presumptively, yes. I was fighting the VA for about 3 years, trying to tell them that everything lines up with the exposures I had while I was in the Newport News Shipyard.

After I got out of my basic and my school training, I reported to the USS Eisenhower in 2004, in what they call an RCOH overhaul, where they take an aircraft carrier in the middle of its life and completely redo everything. They take it down to bare steel. They replace the reactor rods. I was in that environment for about 2 years.

The Pact Act led the VA to take responsibility for Jason's cancer

Jason fought Veteran's Affairs for years before the Pact Act

We had all sorts of chemical and toxic exposures. You can use PPE and try to protect yourself, but you still inhale it once you take the equipment off. I was also within the burn pit zones in the Persian Gulf from 2006 to 2007.

Finding help through the Pact Act

They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types.

The Pact Act relieved a large financial burden from medical bills

Jon Stewart was one of the biggest promoters of this law called the Pact Act for Toxic Exposures and Burn Pits. It finally connected my service to my cancer diagnosis.

Because of the way the laws were written before, the burden of proof was on the person having cancer. They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types, like prostate, breast cancer, colorectal cancer, and all sorts of different things.

The law was really good to help veterans who have been struggling to get this care and to have the military take responsibility for that within their service.

Did you have any other symptoms before your stage 4 colorectal cancer diagnosis?

The only other symptom was, before diagnosis, I had something in my belly button that would appear every 4 to 5 months. By the time I could get in [to the doctor’s office], it would go away. They’d say, come back when you can. By the time I could get scheduled, it would go away.

It only lasted for a couple of days and it was like a little bit of discharge from my belly button and a little bit of hair follicles. It seemed like there were hair follicles that would come out. It’s hard to explain, but something wasn’t right.

It turns out that’s right where my primary tumor was, along the sigmoid colon. It was like, this could be a correlation to that.

What happens, happens but I wish I could have got in when they could have examined that a little bit better.

Did you have bleeding?

They say the number one symptom of colorectal cancer is no symptoms at all.

You hear a lot of people with colorectal cancer say they had blood in their stool. I think I’ve only had it at one point and it’s because I ended up having an emergency stent placed shortly after diagnosis because of the situation at hand. Even then, it was a couple of times.

They say the number one symptom of colorectal cancer is no symptoms at all.

How did you react to receiving your stage 4 colorectal cancer diagnosis?

Like many, Jason was unprepared for a cancer diagnosis

No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it.

It’s very vivid, even though in July, it’ll be 5 years now on this journey. I was diagnosed on July 17th, 2018. It was 2 days after my son’s second birthday, and my wife was pregnant with our third child.

I remember walking into the doctor’s office after the CT scan. They called about 15 minutes later and said, we need to see you tomorrow first thing. I go in and the doctor casually says, “I don’t know another way to put this, but you’ve got cancer and it spread to your liver.” I said, okay, took a minute, and then as soon as I walked through the doors leaving the place, it was like a rush of holy crap. I’m a dead man.

No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it. I thought I was dead.

I come from a large breast cancer family. I carry a BRCA1 germline mutation. The women in my family, if they’re a carrier, they’re almost guaranteed to get breast cancer. It’s not as prominent in men. My mom had cancer, and her mother passed from cancer. I have had exposure to this, but it was emotionally devastating.

»MORE: Patients share how they processed a cancer diagnosis

How did your wife react to your diagnosis?

Jason's wife reacts to his cancer diagnosis

My wife was at the bowling alley with the kids and a friend. When I called her, she completely lost it. It was a bad, very dark time. We ended up coming home that night, my wife and I. We had my parents watch the kids, and we just held each other thinking, how much time do I have?

With 80% of my liver covered, that’s not a good situation. And I had a fully blocked sigmoid colon so they couldn’t go in and remove the primary tumor. I had to have that stent open me up before I could pass stool. Everything from there was a whirlwind getting into doctors, and getting the stent placed. It was emotionally devastating.

Treatment

What were the next steps in your treatment?

That’s a little more vague to me. I do remember [the doctor] saying, we’re going to have to get you in for a PET scan, which happened the next day to confirm it was stage 4 colorectal cancer. After that, I was at my local hospital system near Lawrence.

Getting a second opinion led to new treatment options

If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.

Luckily, I have a doctor cousin who took me with his training. We called him and asked, “Do you have any advice?” He said, “I want you to go see Dr. Miranda at KU Medical Center,” which is the National Cancer Institute (NCI) here in the Kansas City area. It’s the only one in the Kansas City area.

He came with me to the appointment. That was a very pivotal moment in this. Going to one of the top centers in the area with that NCI rating, it’s important to have.

I work in the colorectal cancer support community and advocacy, and I heard the average time for people going from symptoms to starting chemotherapy is above 200 days, which is insane. I got in within 2 weeks. I was diagnosed on July 17th and I had my first chemo on August 1st, about 2 weeks later. I’m very blessed to have that team move that quickly.

A lot of it is very vague. It was just, go see this doctor, see this, get this scope. If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.

I’m very grateful my oncologist never told me an expiration date. They did say, “You have a terminal prognosis of chemo for life and are inoperable due to your extended disease. You’ll never get off chemo and you’ll never be operated on for a curative intent. Palliative reasons, possibly, but we’ll do everything we can to extend your life.” That was a big pill to swallow

How did you come to terms with a terminal prognosis?

I don’t know if I ever fully digested it. I never believed I had cancer. It was all very surreal. I thought, is this happening? Did I get phase-shifted into some weird parallel universe? This has to be a bad dream. When am I going to wake up?

It was a lot to process. Every time I heard it, I would sigh and griff and say, “No, I don’t want to hear this. This is not my fate. I don’t foresee this being me.” It was really hard to swallow, especially every time my oncologist said, “We’ll do everything we can to extend your life, but you will be on this forever.”

»MORE: A colorectal cancer oncologist shares guidance to patients

What treatments were you on?

I was put on what they call FOLFIRINOX. Sometimes they call it FOLFOXIRI. It’s basically how the drug is administered. With colorectal cancer, if you’re not a candidate for immunotherapy, irinotecan, and oxaliplatin are the 2 big drugs [that are given], and 5-FU which has been a standard since the 70s.

I had what’s called the kitchen sink. It was a combo of those 3 drugs. I started on August 1st and I started with what would have been the first of 30 initial cycles. I did 9 of the FOLFIRINOX, then we paused to do Y-90, which is Yttrium-90. It’s a radioactive isotope of the element yttrium.

They go through your hepatic vein and your groin and they send a catheter up into your liver. It’s a liver-directed therapy where they drop millions of radioactive resin beads right into your liver where the tumors generally form based on where the blood flows. I had 2 of those in November and December 2018, then I resumed 11 more treatments of what they call FOLFOX, which is the previous one, minus the irinotecan. They wanted to drop down the irinotecan because of the 2 Y-90. It’s a lot to take on with the radiation.

It’s targeted radiation, so I ended up having 6 of the 5-FU, largely driven by blood numbers – whether my white blood cells were up or my platelets were high enough. My big issue was low platelets, something I still suffer from today, from all those treatments.

Switching treatments due to lung spots

In September of 2019, I had some lung spots show up so we switched the drug oxaliplatin. A lot of the time, oxaliplatin causes severe neuropathy. Luckily, I never had too bad of that and I ended up taking 20 cycles with that in the mix, which is a lot. Some people dip out after 4. Usually, it’s between 8 and 12 of those.

Then I started back on the irinotecan drug through a combo called FOLFIRI. We added a biological drug called Vectibix or panitumumab, an epidural growth factor inhibitor that prevents blood vessels from growing. I did 4 more treatments through December 2019, and then I stopped to break for Christmas.

Getting a second opinion led to new treatment options

Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life.

My story started to change through CO LONTOWN, an online colorectal cancer support community. I learned about Dr. Fong who’s a liver specialist and surgical oncologist. He doesn’t do just the liver, he does a lot of stuff in the abdomen area minus the colon itself.

People kept saying, you need to go see him. I had scans in December at my local center. Even though I had a really good response to chemo, they told me, you’re going to be on chemo for life and inoperable. They were scared that if I did have liver surgery, the liver would grow back. It’s the only organ that does that and the disease would progress with that regrowth.

Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life. It led to a surgery that was 12 hours long in February 2020.

They removed my entire right side and a right hepatectomy and then a lower anterior resection (LAR). They removed 30 cm of colon and a quarter of my rectum with curative intent and also took my gallbladder. I had 5 ablations on my left side at the time. I had lost 110 pounds prior to that surgery.

What inspired you to get a second opinion?

It was the support group COLONTOWN. People kept mentioning it. I was holding out on hope at my current NCI center. I still actually see them to this day, but I was hoping that with that next set of scans, they’d say, we’re going to try. They never did.

Ultimately it was my wife who said, “You need to go do this. Let’s go out to California. What is the worst they’re going to say? No, and you’re still the same?” I said okay, let’s rule it out. If one of the top people in the world says no, then it’s my fate. Thankfully it wasn’t.

Cancer recurrence and COVID caused changes to treatment

Cancer reoccurrence and COVID caused changes to treatment

That’s not where the treatments ended. I stopped chemo after that because I had 30 cycles and 2 liver embolizations and they said my body needed a break. About 6 months later it returned, but not in my liver or colon. It returned in my tailbone in October 2020.

I started back on the FOLFIRI with the Vectibix for 4 more cycles. On my very last cycle, my 34th chemo, 2 days later I tested positive for COVID. That was a crazy week. COVID delayed my radiation treatment.

In February and March of 2021, I had 28 full pelvic radiation sessions to the entire pelvic region, which destroyed my rectum. For 3 months, it was pretty rough. I was sitting on the toilet for 3-plus hours a day, not really living life, just stuck.

Finding hope after his son’s birth

Throughout January and February 2019, I was on a lot of treatments. My son was still in my wife’s belly at the time. I caught him about 2 hours after my eighth round of heavy chemo. That gave me a lot of motivation, wanting to see my kids grow older.

It’s a very powerful moment in my life. Seeing my son born and being able to catch him. Both my sons were born at this house. My wife did a home birth, bless her soul. I didn’t think it would work out, but it did and it really changed me. It gave me a little bit more hope in October 2018 when that happened.

Then it got dark again. I had surgery in January 2019 because the chemo destroyed my anus and caused a fistula to bore through. It caused a lot of pain.

»MORE: Parents share how they talked to their kids about cancer

Integrative medicine in cancer care

In early February, I found an integrative medicine doctor through my dentist of all people. I went to see him and he joined my team. That was one of the biggest moments of my stage 4 colorectal cancer experience. Not just diet and exercise, which are important, but he also helped mitigate the side effects, which helped get through it and process it.

I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life.

One of the biggest things [he taught me] was the mind-body connection and meditation called Psychosomatic Wellness, which has a lot of science behind it. I wasn’t big into that kind of stuff. I thought, “This is heebie jeebie. This isn’t going to work.”

About a month into it, I connected to it. I went somewhere. I still don’t know what to call it. Some people may call it universal energy, God, chi, soul. Whatever you want to call it, I went somewhere and connected with something. It really helped me process things.

I was able to accept life, death, purpose, and what all this means. I was grateful for whatever was to come. I carried that into this second opinion. I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life. What do I have to lose? I went out to California and sure enough, it happened and here I am still.

Jason remained hopeful despite being told he would be on chemo for life

Getting an Ostomy

Describe getting an ostomy bag

Back during the big February 2020 surgery, I had a temporary ileostomy placed which is where the small bowel dumps into a bag with a stoma. That was reversed in May 2020.

Fast forward to the radiation. In June 2021, I had an abdominal perineal resection (APR). It’s a surgery that’s known as Ken or Barbie butt. Imagine a Ken doll or a Barbie doll. They just have a straight stitch on the backside. They took my anus, my rectum, and in my case, my tailbone and part of my sacrum to get clear margins. It was successful, and it left me with a permanent colostomy bag but it’s been a blessing in disguise.

Having it removed has been great for me. I don’t sit on the toilet for 3 hours a day. I spend 60-90 seconds messing with bowel function now. I still swim 3 to 4 times a day. I get to play with my kids. I lost 110 pounds and I wasn’t sure if I’d ever gain it back, and now I’m on the other end of it. It’s been so good to me that now I need to lose a few pounds.

Jason swims 3-4 times a day with his colostomy bag

Jason is able to play with his kids with his colostomy bag

Jason lost 110 pounds during his cancer diagnosis, which he gained back in time

What types of ostomy bags are there and which do you use?

There are several types of ostomy:

The ostomy that comes off your small bowel and avoids your large intestine.
A colostomy, which can be placed along your transverse colon all the way down to your sigmoid.
One-piece open bags which have a little cut-off valve that you can drain as needed.
Two-piece drainable bags.
Two-piece closed systems in one-piece closed systems.

Jason's had success with both colostomy and ileostomy bags

I had a temporary ileostomy. At first, they tend to be more of a liquid output. They’re always on because the way the bowel works is your ileo dumps into your cecum and that’s when your stool starts to form. Before that, it’s all liquid as your small intestine absorbs nutrients. [Ileostomy is] common when people have a large surgery over a colostomy.

If you’re removing the lower part, you tend to get a stoma. That’s the medical name for the exit point. The stools tend to be more formed, it’s more predictable. I find that [colostomy] systems are a lot easier to use than the ileostomy systems.

Considerations when choosing an ostomy bag

Any closed system is not a good idea if you have an ileostomy, because you’d be changing it all day long. Whereas with a colostomy, it’s a little more predictable. It’s easier to manage. People tend to go with closed systems for convenience.

I used to be a 2-piece ostomy person for both my ileostomy and my colostomy. I’ve had about 2 years of colostomy and 3 months of ileostomy. With the colostomy, I’ve gone down to a 1-piece system.

There’s usually, a flange that adheres to your stomach. Once that gets on, a lot of people use either pastes, barriers, or protective rings to help hold that on to prevent leaking.

Leaking is the #1 thing that gets people flustered. It’s like crapping your pants and no one wants to crap their pants. It’s one of the big anxiety drivers with an ostomy. Am I going to leak? How am I going to manage this?

Also when you have a peristomal hernia. The creation of a stoma is a hernia in itself. That can cause more herniations so you want to be very careful with your abdominal wall and building your core back. When you get a herniation, you can feel it. It can lead to blockages.

With an ileostomy, you have to watch your diet a lot more than with a colostomy. Things tend to get blocked more with the ileostomy. From my experience and hearing from others’ experiences with a colostomy, people can still get it.

Leaking is the #1 thing that gets people flustered…It’s one of the big anxiety drivers with an ostomy.

If you have an ostomy, make sure you have a good hernia belt. I’ve got several. I have several Stealth belts. I also have one called a Stomaplex, which is like a stoma guard for impact. You don’t want things to hit it because it can bleed. Some people also use a Nu-Hope binder. It’s like a taller binder that goes around with a hole in it to support that and push your abdominal wall together so that you don’t herniate as often.

Special belts are recommended to support and prevent hernias

Jason uses Stomaplex to guard his stoma against impact

Jason has several Stealth belts for hernias

Is colostomy irrigation an option for some?

You cannot do it with an ileostomy, but with a colostomy, not many people are aware you can do irrigation. Instead of having to worry about having a bag going throughout the day and finding a frequency, people that are more active tend to go the irrigation route.

Imagine an enema but for your stoma. It goes all the way up your bowel track and basically gets behind the stool and you force water through it and then drain it over the next 30 minutes to an hour after that. When it drains, your bowel is empty and you can put a stoma cap on it. A lot of people are able to go hiking for 24 to 48 hours at a time [after irrigation].

Has your ostomy experience always been good?

Jason recommends trying different ostomy bags to find what works for you

Go out there and explore, call, get samples if you can, and find the system that works for you.

I’ve had a very good experience with my colostomy and my ileostomy. A lot of people do have struggles though, so if someone’s out there and they’re asking, “Why does this guy have such a good experience?” You’re not alone.

I struggled the first couple of months with mine before I found a nice rhythm and system. Don’t be afraid to call the 3 big companies – Hollister, Convatec, and Coloplast – and request samples. It can be very good to talk to one of their reps to find out what system works for you.

Having an option between a flat bag and a convex bag can be a game changer. A lot of people get stuck and say, “This is what the hospital gave me. How do I deal with this?” Go out there and explore, call, get samples if you can, and find the system that works for you. Because what works well for me may not work well for you.

Post-Treatment Tests & Scans

A circulation tumor DNA (ctDNA) test helped catch cancer recurrence

In June when I had the APR, I got the colostomy, and my Ken butt, I had about a year’s worth of no evidence of disease (NED). Then I had a recurrence in my lung. A spot that had been on CT scans since diagnosis, which they thought was scar tissue, initially never responded to any other thing. After all the chemo I went through, it decided to grow in May 2022.

A Signatera ctDNA test detected cancer reoccurrence in Jason's tailbone

I didn’t go on treatment because we caught it very early. I’m on a circulating tumor DNA test (ctDNA) called Signatera. Another company, Guardant, has one called the Reveal. It’s the same test, different companies. They sequence the biology of your tumor, specific to the person and no one else. The signature will never pop up in anyone else.

It can detect circulating tumor DNA in your body. It’s not cancer itself, it’s just junk DNA our body puts off, but it has that signature of your disease and they can detect if you have a recurrence. My tailbone recurrence was caught by September or October 2020.

After I went through the radiation, the chemo and more radiation, and the second major surgery, I was about a year clear. Then I had that Signatera test which detected an extremely low amount.

Is a ctDNA test for everybody?

It’s still in the testing phase. Not everyone responds the same. Their bodies aren’t as sensitive to the test.

There are also different areas of the body that put off more ctDNA like the liver, whereas the perineal may not. It’s still in flux, but it can be another tool because the normal marker for me was never above. It was always within range and it still is. It’s never varied more than a point, so it was never really a good indicator. The Signatera test has been really important for that.

COVID delayed a necessary treatment

In May 2022 when I had a spot come back in my lung that grew, COVID struck again. When I went in to get it ablated, I’d had COVID 3 weeks prior. Even though I felt better, my lungs still had some junk in them covering up the spot and they can’t ablate what they can’t see.

Then in August 2022, I had a biopsy that confirmed it was colorectal cancer in my lung and I had an ablation the same day. I was in at 6 a.m. and I was out by noon, working at 12:30. It was the least invasive. It allowed me to skip treatments by detecting them so early.

As of Monday, I had a negative Signatera test come back and I had my CT scans showing that I’m 9 months no evidence of disease and I’ve been off chemo for 2.5 years.

How does it feel to be done with chemo?

Surreal. They told me I’d never get off of it, and here I am. 2.5 years off of chemo.

How often do you have scans?

Right now it’s every 3 months until I hit 2 years. Then it should jump up to every 6 months. In 3 to 5 years, they’ll jump it up to either none at all or every year.

I plan on setting records. I’m going to be the longest person NED ever. At least that’s the way I’m setting my mind up for it.

Reflections

Describe the work you’ve done since being diagnosed

Jason and friends standing in support of Man Up To Cancer

Man Up To Cancer encourages men to not isolate after a cancer diagnosis

Jason carries the banner for Man Up To Cancer

I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.

I do a lot of work within the colorectal cancer support space. I’ve worked for COLONTOWN since July 2020, after I had my Dr. Fong surgery. Dr. Kaiser was my colorectal surgeon.

PALTOWN, which is the nonprofit for COLONTOWN, asked me to be on their leadership cabinet. They were forming a new leadership cabinet, a new model. There are 7 of us. I’ve been there ever since.

I do a lot of support work. I reach out to a lot of people. I do work for Man Up to Can cer. A primary goal is keeping men from isolating during a diagnosis.

I also do early-onset colorectal cancer awareness through the Colon Club. Through that group, I was in their 2023 O n the Rise magazine. It lays out where we’re at and our story to raise early-onset awareness. It came with a photo shoot. I never thought I’d become a model but here I am.

Jason modeling for On The Rise, a Colon Club magazine

Jason shares his story in On The Rise magazine

Jason poses with his ostomy bag for On The Rise magazine

I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.

The importance of expressing your emotions

Meditation, I went somewhere with it and that was my first foray into the emotional side of [my diagnosis]. I learned to accept that it’s okay to be emotional. And we should be emotional because if you push it down, it does nothing but hurt your mental health. Other people are going through this, and at this point in the game, if you have cancer, who cares?

Jason encourages cancer patients to express themselves

It’s so much easier said than done, but you need to talk. Tell everyone how you feel. Some people are quieter than others. If you need to join a group and listen to other people do it, you don’t have to be active in those communities. Seeing what other people are going through can help your mental and emotional health more than anything. Some of us happen to be a little more vocal about it, but it helps to get people out of that bubble, that survival mode that we get stuck in.

A trip to Hawaii led to new revelations

In 2021, my family was gifted a vacation. During this trip, we realized that we weren’t living. We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.

A family trip to Hawaii changed Jason's projectory

Jason was inspired to create a cancer retreat center

Jason and his wife began planning to start a cancer retreat center

It woke something up in us. We asked, what have we been doing? I’m doing all this support work, but we’re just going through the motions. We’re not really living our own lives.

We came up with the idea of going back to the Big Island of Hawaii. Then we said, we should move back there.

We came back [home], I looked at my wife and said, “I have this crazy idea. Would you ever move back, get a secondary house and host people to experience what we did?” I was thinking she was going to say, “You’re nuts, Jason. No.” And she said, “Yeah. I think that would be great.” So we started developing this plan.

I went to school for a semester on Oahu at the University of Hawaii Manoa studying anthropology and geography. It’s a beautiful place. If you’ve never been, I highly suggest going.

Jason's family realized on a trip to Hawaii that they were in survival mode rather than living to the fullest

We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.

Connecting with a cancer retreat center

About 6 months into [developing this plan], I was looking for health care on the Big Island or through the VA because I’ll always need to go see doctors. I found this cancer retreat on the north side of Hawaii on the Kohala Crater. We said, “Holy crap. These people are doing what we thought of, except it’s a whole retreat center.” We reached out to them and they agreed to become our mentors.

Life gets busy with 3 kids and I was still worrying about that lung recurrence. Two days before or after my lung ablation, I finally had my VA claim accepted which lifted a huge medical burden off of my back because they’ll cover all my medical expenses. That freed up some resources.

My wife and I flew out in December to visit them as a patient and a caregiver to see what they had to offer. We really bonded with the couple. We shared our story with them. She was a cancer survivor. Her husband was on chemo for 12 years before she got with her current husband. He was a disabled veteran as well, and we really bonded.

Jason connected with a cancer retreat center in Hawaii

Jason and his wife are close to accomplishing their dream of owning the cancer retreat center they visited in Hawaii

Jason and his wife have plans of living on-site in Hawaii

We told them our dream and they offered to sell us the place. I went back for 5 weeks in April and March of this year to see what they meant by that, get more details, figure it out, and work on the farm. It’s also a sustainable farm that teaches food as medicine, and it has a temple that aligns with the integrative practices that I was doing, which was so beneficial to me.

After that trip ended, we came back and we now have a purchase agreement with a timeline to make that happen. We’ve got a little more money to raise and we have a timeline to do that.

My wife and I want to move our family out there, live on-site, and host cancer patients. Ultimately, it would be if we can find enough funding where it’s no cost to other people, but we’ll see how it goes once we get the next steps in place. That’s pretty active right now. We’ve formed an LLC and our nonprofit to make that happen.

>>>See Kohola House of Healing

What’s helped you stay hopeful throughout your cancer journey?

It’s hard to think in terms of hope when you are told you have stage 4 colorectal cancer, you’re not going to have any other options or it’s a grave diagnosis. Sometimes it’s hard to remove yourself from thinking way into the future. You have to just take it day by day. Take every day, even if it’s minute by minute, hour by hour. Do what you can to help yourself get through the day. Join support groups. That’s been such a big, thing.

The first thing you need to do is never look at Dr. Google. It’ll send you down a rabbit hole of despair. I had my first mental breakdown ever because I was looking at Google and looking at different statistics, then I started thinking about my kids. Avoid that.

Jason encourages cancer patients to take it day by day

Find your people. Find people that will lift you up and support you. A lot of people lose their support networks, especially once they’re out of treatment. Everyone thinks, I’m cured or thinks, you’re done. You’re never really done. Whether the physical stuff is over and the treatments are over, there’s going to be mental and emotional damage. Don’t dwell on that. Everyone goes through this with a cancer diagnosis. It’s okay to not be okay.

What advice do you have for someone recently diagnosed with cancer?

If I have any advice for anyone starting a diagnosis is, once you get diagnosed, it’s going to be rough at first. But once you get through that initial despair and anxiety, start setting goals. Future goals.

Something my integrative medicine doctor told me and it’s been my mantra ever since, he said, “Jason, set a goal and reach it. And once you reach that goal, set another one. Always keep your eye on the prize.”

Keith’s Multiple Myeloma Story

Post author By Alexis Moberger
Post date May 30, 2023
No Comments on Keith’s Multiple Myeloma Story

Keith Guernsey’s Multiple Myeloma Story

June 5, 2023

Keith Guernsey, a retired sales executive turned author, shares his personal cancer journey, including his diagnoses of prostate cancer, multiple myeloma, and melanoma. He and his wife, Susan, reside in Gainesville, Georgia, enjoying their retirement in an active adult community. Despite facing various health challenges, Keith remains optimistic and determined to live a long and fulfilling life.

Keith’s journey began with a diagnosis of prostate cancer in 2018, followed by successful robotic surgery. However, his medical journey took another turn when high levels of protein were detected in his blood, leading to a diagnosis of multiple myeloma, a rare blood cancer. Keith highlights the importance of having a strong support system, crediting his wife as his source of strength and motivation throughout his treatment.

Keith underwent treatments, including RVd infusions and a stem cell transplant, at Northside Hospital’s blood marrow transplant group. He praises the doctors, nurses, and staff for their exceptional care and expresses gratitude for their support. Despite experiencing side effects such as orthostatic hypertension, Keith remained committed to his recovery.

With the conclusion of his myeloma treatment, Keith reflects on the emotional moment when he received a certificate of congratulations from the BMT offices. He attributes his ability to recover quickly to his previous years of regular exercise and determination. Keith focuses on finding the right treatment and maintaining a positive outlook.

At The Patient Story, we chronicle real-life cancer experiences directly from patients. Read more multiple myeloma patient stories.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Keith G.
1st Diagnosis:
- Prostate cancer
Initial Symptoms:
- Enlarged prostate (noticed by PCP at annual checkup)
Treatment:
- Surgery: prostatectomy (prostate removal)

2nd Diagnosis:
- Multiple myeloma
Initial Symptoms:
- High levels of protein (seen in post-op follow-up blood work)
Treatment:
- RVd (Revlimid, Velcade, dexamethasone)
- Stem cell transplant
Maintenance:
- Revlimid
- IV infusion
- Xgeva

3rd Diagnosis:
- Melanoma
Initial Symptoms:
- Lump on the back and right clavicle
Treatment:
- Surgery
- Opdivo

Table of Contents

Introduction
- How did you meet your wife?
Pre-diagnosis
- What led you to visit the doctor?
First cancer diagnosis: prostate cancer
Second cancer diagnosis: multiple myeloma
Third cancer diagnosis: melanoma
Living life after 3 cancer diagnoses
Words of advice

Interviewed by:

Alexis Moberger

Introduction

We live on Lake Lanier in Gainesville, Georgia. I’m originally from Lexington, Massachusetts. I was diagnosed with prostate cancer in 2018, multiple myeloma in 2019, and melanoma in 2021.

I am 70 years young although, today, I feel like I’m 30. I am a retired sales executive turned author. I am incredibly fortunate to be married to the lovely and talented Susan.

We’re in an active adult community. We’ve been retired and here for close to a decade and we love it. This is our base of operations.

We love to travel, usually with our spoiled little doggy in tow. We go to St. Simons Island a lot. The only exception is when we get on a plane to go see [our] son, daughter-in-law, and two grandkids back in Boston.

Before cancer hit, I was diagnosed with a benign brain tumor called an acoustic neuroma. I had 10 hours of successful surgery back in 1995.

How did you meet your wife?

I made the most important decision of my life [in] 1996. I know it’s going to sound strange to hear that, but just going to the corner store and buying a newspaper was the most important thing I’ve ever done.

I had been alone for 15 years and I was getting bored, lonely, and in a rut. [I] opened up the personals and one caught my eye. It said, “WWWF.” I had no idea what that meant, but it stood out. I was curious.

I took a chance and dialed the number. A nice young lady answered the phone. We had a very pleasant hour-long conversation [and] talked about who we were, what we did, etc.

I finally got up the courage to ask what WWWF was and she said, “Widowed, white female.” I said, “What about the third W?” She said, “Well, it must be a typo.” Later I would learn that it was for “wonderful.”

Unfortunately, I’ve had to put her through a lot. When I say, “You are the strongest person I’ve ever known,” she kind of gets a look on her face like, “I’m not really.”

We met in ’96. About six months after we met, the first gift I gave her was to have to sit through 12 hours of excruciating brain surgery because my tumor came back. Then we had 20 uninterrupted years of wonderful times [and] lots of travel.

Then [in] March 2018, I was diagnosed with prostate cancer. I had to wait six months for the robotic equipment to be available. For me, waiting six minutes is hard, [what more] six months.

The phone rang. I don’t know why, but I had a premonition that something might be amiss.

Pre-diagnosis

What led you to visit the doctor?

[I was getting my] yearly prostate checkup. My primary care physician noticed I had an enlarged prostate. He sent me to the urologist. I wasn’t concerned, but it turned out I should have been.

I was diagnosed with prostate cancer [and] had successful robotic surgery in September. I even remember dancing out the door. If you’ve never seen an uncoordinated old guy dance, it’s a sight to behold.

First cancer diagnosis: prostate cancer

Getting the official diagnosis

It wasn’t pleasant. We were sitting down to lunch and the phone rang. I don’t know why, but I had a premonition that something might be amiss because very few people call us at lunchtime. [From] the expression on my face, Susan was just about ready to take the phone away from me.

I got my composure back. He said, “You have prostate cancer. You need to come [into] the office and we’ll discuss the options.” They talked about radiation, seeds, and all that stuff. I said, “No, I want it out of me.”

He scheduled the surgery. But again, it was six months from the time he diagnosed me to he performed [the] surgery.

Susan’s been my sole caregiver through this entire journey. God bless her. She’s just been phenomenal.

Waiting for the prostatectomy (prostate removal surgery)

It was not easy. I wasn’t pacing the floors but, short of that, we had all kinds of activities.

I’m always writing so that took up a lot of my time. That takes me away mentally from worrying about cancer.

I tend to take my cue from my doctors. I’ve been very fortunate. My doctors are the best of the best. If they express deep concern, I get really concerned. I try not to because you pass that concern along to Susan and then she’s concerned.

In addition to writing and reading, I try to do activities and keep busy. I really didn’t have a choice. You just do what you can to keep busy. Then September rolls around and you’re ready. Sort of.

Susan’s been my sole caregiver through this entire journey. God bless her. She’s just been phenomenal. She hasn’t had to call back to Boston for reinforcements of other family members, but we came close once or twice.

It’s not in my nature to be super patient, but I’m really trying hard to be at least a little better.

Real high levels of protein in my blood. Now, I don’t know what that meant, but the expression on my urologist’s face meant it wasn’t good.

Post-surgery

I missed the Braves game that night but, hey, sacrifices have to be made. But [the surgery] went fine. I felt great. Came home a couple of days later, jogged out of the hospital, and everything was wonderful until a follow-up lab work two or three months later.

I was ready to start the last third of my life, healthy and happy with my lovely wife at my side. We’re going to travel the world and life was so good. Then reality intruded.

Real high levels of protein in my blood. Now, I don’t know what that meant, but the expression on my urologist’s face meant it wasn’t good. He referred me to a hematologist.

I promised Susan that no matter what happened, medically speaking, I would live to be 95 so that we could dance at our 50th wedding anniversary.

Second cancer diagnosis: multiple myeloma

The hematologist was right across the hall, which is nice. Not only was she right across the hall but she was, in my opinion, the best of the best. She was really phenomenal.

We went in on March 27th for our initial discussion. Susan and I were fortunate to be accompanied by a very dear friend of ours — 40 years in nursing [and] 20 years as the assistant director of oncology at our local hospital. She was a rock and able to translate all of Dr. Nadella’s medical terminology into layman’s terms for us.

Dr. Nadella said, “You have multiple myeloma, which is a rare blood cancer.” I didn’t know until we walked into her office. You just deal with it.

Going into a fog of denial

I did [go into a fog of denial], especially when she said, “At this time, there is no cure.”

She’s a straight shooter and I really admire that about her because there’s no beating around the bush with her and I appreciate that. I’d rather have it that way. I’d rather have honesty.

She went on to say, “With proper treatment, you can still live a long, healthy, and productive life.” I promised Susan that no matter what happened, medically speaking, I would live to be 95 so that we could dance at our 50th wedding anniversary.

Importance of having a support system

We’re a team and we do this all together. It made all the difference in the world. I get my strength from her. Hopefully, she gets a little from me.

We were both in shock. We went home and mapped out our strategy to deal with it, which is day by day.

We follow the facts and we follow the doctor’s instructions. Once you’ve found what you consider the best, listen to her. She steered me on this path and I feel great.

If you go on the Internet and you say, “How long can you live with multiple myeloma,” it’s like five years. I talked to a woman recently. She’s been living with myeloma for 31 years.

If I get 31 years, I will have accomplished my goal, which is to be one of the few three-time cancer survivors to live to be 100.

Treatment for myeloma

It was every three weeks or so for the RVd infusions, but those are mostly things that can be taken at home. I was very fortunate that my system accepted those three drugs readily and I really didn’t have any problems.

I had one fall. I put my elbow through the wall. But beyond that, nothing.

After about three months, she said, “We’re going to send you down to Atlanta, to the BMT group,” which was part of Northside Hospital blood marrow transplant group, “to make sure that you are a viable candidate for stem cell transplant.” Fortunately, I was.

This is in June. Since then, I went home, [received] more treatments, packed up [our] bags mid-August to come back for nine weeks of more treatments, more IV infusions daily, and then the stem cell transplant.

The doctors, the nurses, and the staff that I have had the pleasure of working with have been phenomenal.

Preparing for stem cell transplant

He didn’t say a lot. Dr. Sohl, [whom] I was seeing, was the resident expert. He’s another great, great doctor. He did a phenomenal job.

Very, very, very easy process [of] collecting the blood and then putting it back in me. Very smooth transition.

Northside is very large. It’s not a community hospital, certainly, but it is, along with Emory, one of the two de facto standard cancer hospitals in the Atlanta area.

They treated me so well. I have been very fortunate. The doctors, the nurses, and the staff that I have had the pleasure of working with have been phenomenal. I got a chance to thank them publicly [on] the local news.

Side effects from RVd

It was such an easy process. However, there was one glitch in my treatment: orthostatic hypertension.

Your blood pressure is within normal range when you’re lying down [and] when you’re sitting up, [but] when you stand up, your blood pressure drops [to] dangerously low levels so you need to sit right back down.

It can cause dizzy spells and falls. One night, I fell six times trying to get up. I’ve been very fortunate to be a former football and hockey player who actually learned to fall gracefully if that’s even a thing — not hit my head, not panic, that type of thing.

I would caution anyone. Take your standing blood pressure or have someone take it for you. That was the real only problem.

The stem cell transplant went fine. I had a little problem after that with the medication they were giving me. They thought I was having a stroke. I couldn’t get out a word or a sentence. But it turns out, it was the mix of medications they gave me.

A doctor came in and said, “Once you sleep it off, once it wears off in the morning, you’ll be fine.” That was four years ago and I haven’t stopped talking since.

Once they tell you cancer, there’s not a lot you can do about it except get good treatment.

End of myeloma treatment

On November 1, 2019, we walked into the BMT offices for the last time. They handed me this certificate. It says, “Congratulations.”

I was trying as best I could to maintain calm so I wouldn’t worry myself and I wouldn’t worry Susan so much. Because once they tell you cancer, there’s not a lot you can do about it except get good treatment. I remained fairly calm for both of us.

We drove home and it was euphoric. We pulled into the driveway and this banner that says, “Welcome home, Keith!” was stretched across our garage door, signed by neighbors and friends. I lost it. I started crying like a baby. Susan joined me, got the walker out of the car, [and] went into the house.

After weeping like babies, we cultivated a plan to get me back to my current strength. I’m convinced that my ability to get better faster was in large part due to my six previous years in the gym — every morning for an hour — and that helped me out.

Started walking with a walker, then a cane and I was holding Susan, and I started walking on my own back to the gym, [and] running on the treadmill.

How did you feel seeing that welcome home banner?

We were done with that portion of the treatment. More than that, we had so many caring, loving friends and family members all over the country.

Emotion just swept over me. It’s often hard for me to describe but after I was all cried out and pulled it together, we sat down and started talking [about] what we needed to do to get me back to where I am today.

Nutrition and exercise were two of the largest components of that plan.

Maintenance treatment post-stem cell transplant

I was on a maintenance Revlimid, which is basically a pill a day, and I would go about every month for an IV infusion and Xgeva shot.

One of [the] problem areas of multiple myeloma is it can weaken your bones. Fortunately, I didn’t have any of that. I think a lot of that is due to the good care that Dr. Nadella and her team did.

You rely on your resources, like your medical team, and just realize that you can live as normal a life as possible with multiple myeloma or other forms of cancer.

Follow-up protocol with hematologist-oncologist

I go in either once a month or once every couple of months. I’m still in what she calls very good remission. She’s always told me that remission is almost a vague term [and] that if you ask six hematologists, you get six different versions of what remission is. It’s a moving target, so to speak.

[I had] my last treatment and I’m feeling wonderful.

I’ve talked to a number of myeloma patients who have lived a very, very long time. I know I’m under the best medical care. I have an ace in the hole.

Even with myeloma in remission, if I get 31 more years, if I get 21 more years, I’ll be thrilled. I don’t know if Susan will be able to put up with me that long, but I guess we’ll find out. But you take it one day at a time.

You do the best you can to cultivate and maintain a positive attitude. You rely on your resources, like your medical team, and just realize that you can live as normal a life as possible with multiple myeloma or other forms of cancer. You want to make sure you’re not letting it beat you. You want to make every effort to beat it.

Keith G. rings victory bell at Northside

Third cancer diagnosis: melanoma

What led to this diagnosis?

I had a lump on the back of my neck. I think I’m too old to have a pimple so I know it wasn’t that.

I had it checked and they found out that [it] was [a] malignant melanoma. I also had it in my right clavicle.

I was diagnosed in October 2021. I found the best melanoma specialist in the world, Dr. Nicole Kounalakis, and she took it all out in a six-hour operation in North Side. Again, I was able to bounce back pretty quickly because she did such a great job.

Getting the official diagnosis

It’s interesting because three different people gave me three different answers about what stage I was at.

Dr. Kounalakis’ PA said stage 2, Dr. Kounalakis said stage 3, and Dr. Nadella said stage 4 so it’s a toss-up. As long as I’m having fairly regular CAT scans and PET scans and as long as I don’t see the words metastatic or terminal, I don’t worry about it.

I’ve been told it can be sneaky. It can come back. I talked to Kounalakis and said, “If it comes back, will I need more surgery?” She said, “Yeah, you might,” and she said it confidently that if she’s not worried, I’m not worried.

Treatment for melanoma

I was on Opdivo, which is [an] immunotherapy, and I was on it for a year. That worked because, [on] October 28th, Dr. Nadella said, “This will be your final treatment,” and that’s been it.

No treatment and feeling phenomenal. It may not always be that way, but I mentally prepared myself for whatever comes next.

It’s one of those things where you don’t [have] to love it, you just got to do it.

Living life after 3 cancer diagnoses

It wasn’t bad because it gives me a chance to get out and actually see people. The medical professionals I’ve seen are phenomenal, efficient, helpful, professional, [and] friendly.

When I was a kid, [I] hated going to doctors. Now I actually enjoy it. I get out of the house. I get to meet some very nice people. They do what needs to be done and I come home.

It’s one of those things where you don’t [have] to love it, you just got to do it.

What’s been the biggest surprise after going through all this?

I’m surprised [at] how good I feel. I look at my driver’s license and it says I’m 70, but I don’t feel 70. I feel about half that [almost] every day.

There are moments [when] maybe I didn’t sleep well the night before. I would have you where I’m not quite 100%. But by and large, I’m pleasantly surprised by how great I feel.

That’s why I want to give back to my fellow cancer patients, whether it be [through] the American Cancer Society or as a myeloma coach.

Were there any moments when you felt, “Why me?”

I really haven’t because I feel like God called on me because I’m strong and with the help of family and friends, I would get through this, and I have.

Susan has a book. The cover says, “God doesn’t give you anything that you cannot handle,” and I feel that’s the case for me.

There’s always a moment of that type of thing, but I try not to dwell on it. I move past it and move on with my life. From time to time, you have your doubts. Everyone does. If I didn’t, I wouldn’t be human. But I try to minimize them, if at all possible.

Sometimes when I’m alone, I think about why did He do it to me three times. The answer I always come back to because He knew I was strong enough to handle [it].

It’s a delicate balance between keeping it moving and getting back in good physical shape and going too fast.

Words of advice

I developed a nine-point plan, which I call, “Living Well with Cancer,” which has helped me and a lot of my fellow cancer patients. I’m a myeloma coach and an Imerman Angel, so I speak a lot to new cancer patients or less experienced cancer patients.

It talks about things like nutrition, exercise, hydrating properly, [and] getting a good night’s sleep. I’ve sent it to dozens of cancer patients. They’ve all said it’s worked well for them and it’s been inspirational.

It’s not easy. I have a friend who’s a retired cardiologist who told me this. It’s easier if you cultivate and maintain a positive attitude. It goes a long way to help you beat cancer and get better every day.

You can be upbeat or you can be downbeat. It’s not easy but with the help of Susan, our little doggy, and my family and friends back in Boston, I have been able to maintain and cultivate a positive mental attitude. I’m convinced that has helped me so much.

Be patient. Get up slowly and go slow. With everything you do, be patient. Pay attention to the metrics with orthostatic hypertension.

Just be careful. Move slowly. It’s a delicate balance between keeping it moving and getting back in good physical shape and going too fast — that’s when you could hurt yourself.

Be careful. Get the best medical care you can. Keep moving, but do it slowly.

We have a finite amount of time on this planet. Do your very best to enjoy every moment, every day to the max. I know it’s not all that easy, but you have to do the best you can.

Thank you for sharing your story, Keith!

Inspired by Keith's story?

Share your story, too!

Multiple Myeloma Stories

Clay D.

Diagnosis: Multiple myeloma
1st Symptoms: Persistent kidney issues, nausea
Treatment: chemo, radiation, stem cell transplant
...

Melissa V.

Diagnosis: Multiple myeloma, stage 3
1st Symptoms: Frequent infections
Treatment: IVF treatment & Chemotherapy (RVD) for 7 rounds
...

Elise D.

Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...

Marti P.

Diagnosis: Multiple myeloma, stage 3

1st Symptoms: Dizziness, confusion, fatigue, vomiting, hives

Treatment: Chemotherapy (Bortezomib/Velcade), Daratumumab/ Darzalex, Lenalidomide, Revlimid) and stem cell transplant
...

Ray H.

1st signs: Hemorrhoids, low red blood cell count
Treatment: Immunotherapy, Chemotherapy, Stem Cell Transplant
...

Valarie T.

Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...

Jenny A.

Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...

Keith G.

Symptoms: High levels of protein
Treatment: Chemotherapy, stem cell transplant
...

Julie C.

Symptoms: Queasiness, food aversions, lack of appetite, fatigue
Treatment: Stem cell transplant, chemotherapy (D+PD), bispecific antibodies (talquetamab & cevostamab)
...

Erin H.

Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...

Gregory P.

Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...

Laura E.

Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies
...

CAPOX (capecitabine, oxaliplatin) Chemotherapy Colon Colorectal Hemicolectomy Patient Stories Surgery Xeloda (capecitabine)

Amanda’s Stage 2A Colon Cancer Story

Post author By Alexis Moberger
Post date May 16, 2023
No Comments on Amanda’s Stage 2A Colon Cancer Story

Amanda’s Stage 2A Colon Cancer Story

Amanda G., Colon Cancer, Stage 2A

Symptoms: Gurgly stomach, blood in stool, chronic constipation
Treatment: Surgery (hemicolectomy), chemotherapy (CAPOX), Zarxio

Amanda was experiencing gastrointestinal symptoms, including bloody stools, which worsened and persisted for almost a year before she finally got a colonoscopy.

She was then diagnosed with stage 2A colon cancer.

She talks about the frustration of not feeling listened to and taken seriously, how important it is to fight for answers and advocate for yourself, and why you should be on top of your health care.

Initial symptoms of colon cancer

In August/September 2019, I started getting weird but very light IBS symptoms, like something as simple as a gurgly stomach when I was hungry. But it would be so consistent. It would be every day, something I had never dealt with before.

I thought, “That’s weird. Is it my diet?” My mind didn’t go to the worst. Those were my early, early symptoms.

Then about a month later, I started seeing blood. That was alarming because, of course, it’s blood. But again, you don’t want to freak out. I gave it a couple of weeks and I thought, “Maybe it’s hemorrhoid. Let’s see if this is consistent and persistent,” and it was.

I didn’t have insurance at the time so I went to my local urgent care where I was told it was probably just hemorrhoids, probably a fissure.

I laughed in the office and said, “I don’t want to have like colon cancer or something,” and the doctor reassured me, “I don’t think you have cancer. I think that’s a little outlandish even to assume that. I think you’re fine.”

I asked how long I could expect to have it. She said, “It depends.” She gave me a really loose-ended answer. “Typically, [in] a couple [of] weeks, it’ll heal up. But if it’s a fissure, like a tear, if you don’t change your diet and eat more fiber, that could be chronic and you could just see blood for months.”

Just keep an eye on it. No solid answer. I wasn’t super thrilled with it. There was no exam done, no blood testing. I took her for her word.

Still dealing with the gurgly stomach but very minor and the bleeding. I just assumed it was a fissure or hemorrhoids. I thought, “Okay, let’s ride this out and see how long this lasts.”

Physical symptoms of grief

In February 2019, I lost my mom suddenly. I wasn’t there. She died of a heart attack 3,000 miles away.

A lot of people who are grieving deal with similar symptoms. Anything you’re going through will manifest itself through your gut. I had a lot of people tell me this was grief.

It wasn’t until I actually saw my first doctor [that] he said, “You’ve been through a lot. I wouldn’t worry about this. I truly think it’s just grief.”

My primary care told me I needed psychological intervention because I was panicked at that point. When I got my health insurance in January, I was excited. I got to see a doctor [and] get blood work and all these tests done. He ran the blood work and it all comes back normal, which was a relief for me. That was all he decided he needed to know that I was probably just grieving.

With these symptoms came anxiety. I was never a hypochondriac. It wasn’t until I had these symptoms that I thought, “Something’s wrong,” which I think is your body telling you something’s wrong. There’s no reason for me to doubt that.

This was January 2020. The doctor told me, “There’s nothing wrong with you. You have no family history of colon cancer. You’re so young. This would be very outlandish.”

Possibility of colon cancer

I mentioned it multiple times. I mentioned it at the urgent care. It’s the first thing I thought of when I saw blood. I’m very smart. I’d like to consider that I am very in touch with my body. I understand these things.

When I was growing up, my mom was very ill and I was in and out of hospitals with her. I was comfortable with it [and] I had a head start on maybe what other people wouldn’t.

I thought, “This is a symptom of colon cancer.” I know I’m 29, but I kept bringing it up to the doctors. Their response was, “Oh, that’s silly. There’s no way that would be colon cancer.”

I, of course, Googled my symptoms. At the height of my anxiety and my symptoms, I was on Google almost every night before bed, just trying to find someone else who maybe had gone through this. I would be on YouTube, searching [for] these symptoms.

Symptoms persisted & intensified

I went on this amazing trip for my 30th birthday in March 2020, weeks before everything shut down. I went to Hawaii and Australia. I booked it because it’s a big birthday. I was going to process my mom’s death on this trip. It was going to be really a beautiful trip for me to say goodbye to this really crazy decade and start my new one.

It was wonderful. I had the best time [and] met a lot of great people, but my symptoms just intensified. It was almost like my body was saying, “Now’s the time. This isn’t going away.”

At this point, I’d been bleeding since September. It’s now March. I was chronically constipated. I couldn’t go to the bathroom and when I could, it was just blood. There was no pain. I was pretty bloated a lot of the time.

I just remember feeling like I couldn’t really enjoy my trip because there was something in the back of my mind saying something was wrong. That was when I thought, “When I get back from Australia, I’m going to insist on getting a gastroenterologist and get this ball rolling because something is seriously wrong.” At this point, I need to fight for it.

Initial appointment with primary care physician

I get back home to L.A. right as everything’s shutting down. Doctors are not seeing patients in person anymore unless it’s considered urgent. Trying to get a hold of any doctor is seemingly impossible. Every appointment is over FaceTime or Zoom.

I got an appointment with my primary care. I said, “These symptoms aren’t going away. In fact, everything seems to be getting worse. I’m really concerned.” He said, “You don’t look sick. If you had cancer, Amanda, you would be losing weight at a rapid pace. Your face would be sunken in.” I just couldn’t believe he said that to me.

I said, “Yeah, if it were bad, if it were end-stage cancer, of course. I’m telling you what I think is happening and you are dismissing everything and not even offering a solution.” Finally, he said, “Your blood work is fine. If it were cancer, you would have anemia.”

My red blood cell count was low and normal. My mind went to, Maybe I’m not anemic now but give it a couple of months, that red blood cell count will go lower if it is a tumor. I’m thinking all this and I thought, “I can’t go to the bathroom without aid from a pill. I’m seeing blood. Clearly, there’s something blocking everything moving.”

Getting initial testing done

He said, “If you’re really this stressed about it, I will order a stool sample test for you.” This was the, “Aha!” I know this is going to come back abnormal. If anything, this will get things moving. This is how he worded it, “Just to ease your mind, we’ll get you a stool sample test,” and I said, “Perfect. That’s all I want. Let’s just get some proper testing done.”

I get the stool sample test done and that following week, he called me. “We got your results back and it came back positive for blood,” which I knew it would. He goes, “I’m going to refer you to a gastroenterologist,” which is all I wanted in the first place. That should have been done in January.

Because of COVID and everything being slow-moving, I didn’t get a virtual appointment with my gastroenterologist until May. [At] this time, my symptoms are so bad.

In early May 2020, the Black Lives Matter protests and marches were happening and I wanted to go out and support. I had been cooped up for a few months now so we donned our masks, went to Burbank, and protested. It was a hot day and I remember feeling really dizzy and really faint. At one point, we all got down on the ground and I couldn’t get back up. My vision went blank.

I looked at my friends. They know what I was dealing with and what I was going through. I was very vocal with them. They asked, “Are you okay?” I said, “I’m very dizzy and my vision just blacked out. I need to sit for a second.”

My friend’s husband sat with me while they went on. I found the energy to get up and start walking. My friend was giving me snacks. She said, “Do you need food? Are you dehydrated?” If you’re dealing with these other symptoms, I would have thought I was dehydrated. I would have thought it was hot. We’re in masks. We’re walking. Maybe that’s it.

But I just knew. I remember looking at her and I was like, “I think it’s connected to these symptoms here. I know it’s related.” Even more, I was just ready to see the gastro.

I saw my gastroenterologist and he echoed what my primary care said. “You’re young. You’re a healthy girl. You have no history of colon cancer in your family. These symptoms are very common, Amanda.

“We’ll test you for ulcerative colitis. We’ll test you for Crohn’s,” both very serious chronic diseases that you want to be taken seriously. He said, “But the odds of colon cancer are so slim so don’t let your mind go there.”

How can it not? The symptoms are not getting any better. They are consistent and persistent. He said, “We’ll get you in for a colonoscopy.”

I said, “How fast can we get that?” He said, “We have to get your insurance to approve it.” Trying to get a colonoscopy approved for a 29-year-old girl with no pre-existing anything is seemingly impossible.

Waiting for the colonoscopy to get approved

The referral went in and then it’s almost like it got lost in limbo. I didn’t hear back from my insurance. I never got the authorization in the mail.

I called them and I was going back and forth. They said, “Hey, we’re super busy with COVID. Sorry about the delays.” I was on hold for so long.

I remember calling them every single day. “Do you have a referral from this doctor? I need this.” They said, “Oh, well, he didn’t say it was urgent. We’re just taking urgent authorizations. We’re getting through these as fast as we can.”

I’m as patient as I can be and [in] the midst of all of this, anxiety is at an all-time high. I’ve never dealt with anxiety. I’ve never dealt with panic attacks. I sympathize with anyone who deals with it all the time because it is the worst thing that you could deal with.

Feeling like no one was listening & not being taken seriously

It’s hard. You feel all those feelings and associate those thoughts with anxiety. I wanted to turn it off because I thought, “That’s the anxiety talking.” But, at the same time, my body was telling me something completely different.

I would message my friends at 1 a.m. after going to the bathroom and seeing blood. They asked, “Are you in pain?” I said, “I’m not in pain, but I don’t feel right. I just feel like the longer this goes, the worse it’s going to get. I feel like my body, from the inside, is failing and giving up,” especially after that spell in Burbank when we were protesting.

I’m really grateful to have this information to share with people. I have a lot of women, especially in my DMs on Instagram, with concerning symptoms. In one way or another, they found out about my story and reached out to me.

Trying to get a colonoscopy approved for a 29-year-old girl with no pre-existing anything is seemingly impossible.

Amanda G. Tweet

Colonoscopy prep & procedure

The colonoscopy was an interesting experience. I’ve never had one before.

You have to be on an all-liquid diet. You can’t eat any food the day before so you’re hungry. You’re given this prep that you have to drink the day before your procedure. It cleans you out.

It’s not ideal. I wouldn’t say it’s terrible. I don’t want people to fear that. I don’t want people to not get a colonoscopy because they’re afraid of the prep. It’s doable. Have some candies that you can suck on after or even lemonade to chase it.

You’re going to the bathroom all night. You are clearing everything out and you know it’s working. The clearer your bowels, the better the procedure is going to go, and the more accurate it will go. They were said, “You don’t want to come in for your colonoscopy and have it be an incomplete colonoscopy and you have to do this again.”

You go in for your colonoscopy and I was asleep during. I know some people are awake, just groggy. I was completely sedated, but I know that’s not the case for everybody.

The procedure itself was so easy and so quick; in and out in a couple [of] hours. No pain after. You go and can finally eat.

The prep is the worst part and even that I wouldn’t say is bad enough to the point where you shouldn’t go. There are preps that come in pill form. See if your gastroenterologist will prescribe that.

I get one almost every year. [For] the past two years, I’ve gotten them every year and now, they’re going to move me to every three years. Not fun but not the worst thing.

Amanda G. getting staples from stomach removed

Finding a large tumor during the colonoscopy

The doctor came in. I know doctors are very clinical and to the point, but he said, “We found a large tumor in your sigmoid colon. I biopsied it. Call me tomorrow for the results.”

I’m high as a kite on these drugs. You couldn’t have told me at a better time because [at] that moment, I thought, “Whatever. Tumors can be benign, right? Great. I have my answer.” I’m looking around at the nurses and thought, “Hey, it’s probably benign. At least I have my answer.”

Then you start coming off the drugs. One of my nurses was lovely. He wheeled me out when my friend came to pick me up and I asked, “What happens now with the tumor in my colon?” He goes, “This happened to my friend and they’ll just cut the tumor out and you’re going to be golden. You’re going to be fine.”

On the drive home, I was telling my friends and they were super supportive. “You’ve got this. You’ve got your answer, on to the next.” This whole time, I’m rationalizing in my brain. Tumors can be benign and they often are. Maybe it’s just a benign tumor.

It was a large tumor. We didn’t know how large until my surgery, which is crazy. It had grown in my colon. I remember thinking, “I have to wait for these results,” and luckily it was just the next day.

Finally getting a colonoscopy

I go for my colonoscopy in July and, of course, there [are] hoops and hurdles to get there. It finally gets approved.

We’re [at] the height of COVID. Now come COVID tests and all those preliminary appointments you have to get.

I remember thinking, “Okay, I’ve gotten this far. We’re now almost a year of symptoms and I’m at the homestretch. I’m going to get my answers.” Waiting for my friend to pick me up to take me to the hospital, I thought, “I’m going to get my answer today.” This has been months and months of absolute mental and physical torture.

I go to the hospital and have my colonoscopy. I deal with things with humor. “Hey, am I the youngest patient you’ve ever had?” All the nurses were lovely. They were so kind and super reassuring.

Once they hook up the drugs to you and you’re loopy, you’re golden. I expected the worst but also don’t think I was prepared to hear it because you hope for the best. You know in the back of your mind, but you never expect what you’re going to hear.

When I woke up from the colonoscopy, I remember looking around the room. The nurses were there and they were just quiet. “Good morning, Amanda. You’re all done.” I’m groggy. I didn’t know what questions to ask.

Diagnosis

Getting the results of the colonoscopy

I was in bed, my head just spinning. I’d already called my family back in Massachusetts and told them what was going on. They said, “Keep us posted. Tumors are often benign. We have all the faith you’re going to be okay.” I said, “Yeah, I think I’m going to be okay but at least I know I have a tumor.”

My doctor called and he goes, “Pathology came back and it is cancer. Please come to my office right away for the next steps.”

You are never prepared to hear that, but in the same sense, I knew. This whole time I knew. I had been saying colon cancer since September. It wasn’t new information. Everything checks out.

I was laying down when I got the phone call. I sat up immediately and said, “Okay, do I come now?” He was sad, “Yeah, come now.”

Follow-up appointment with the gastroenterologist

Immediately call my friend and told him it’s cancer. He was like family to me out here. I love him to death. He asked, “What are we doing?” I said, “I need to go to the doctor.”

He picked me up and brought me to the office. That was an interesting car ride and visit. I was just very quiet and shocked.

Things just start going in your mind. How long did I let this go? Did I not fight hard enough for myself? My symptoms have been going on since September of last year. Surely, it’s all over my body by now.

We get into the office and he gives me all my paperwork. He gives me the next steps. He goes, “I’m going to refer you to a surgeon. If the cancer has spread, you will need chemo. If it’s localized, it’ll just be surgery.” It was a lot of information all at once, the same day I heard the diagnosis.

I remember being looked at by everyone in the office as I was leaving. Just diagnosed with cancer and I’m just like, “Okay, bye!” Then you get a lot of, “We’re praying for you.” As nice as that is, I thought, “Oh, this is going to be a whole thing. This is scary”

Treatment

Surgery

My surgery was another hurdle. I had to keep on my insurance company to approve the surgery. I finally got my surgery a month after my colonoscopy, which in hindsight is about right. It just felt like forever.

They didn’t scan me prior to surgery. I didn’t find out my stage until after surgery when I met with my oncologist.

The surgeon took out the tumor, said it was a large tumor, told me he poked around in there, [and] said there was no visible evidence of metastasis. He said the liver looked good. Everything else looked clear.

He said, “I think you caught this early, but obviously, you have to have a scan and meet with an oncologist to be sure.” He said my lymph nodes were clear, which was a huge relief. He tested 28 lymph nodes. All great news.

Hemicolectomy procedure

I had a hemicolectomy; I just say a colon resection. They removed my sigmoid colon. You have your large intestine, your small intestine, and the sigmoid colon connects to your rectum so it’s right down there.

They went in laparoscopically. It was all done through two little incisions. They went in and took out that part of the colon and resected it.

My surgeon warned me I might need a colostomy bag temporarily. He said, “You might have to have a colostomy bag when you wake up from surgery. If you feel one, don’t freak out. It will be reversed. We’re going to do our best to help make this a clean resection for you.”

All I’m thinking [about] is my pride. I’m 30 years old. I can’t live my life with an ostomy bag. After researching and meeting people, you can have one permanently, live a full life, and be fine. It’s not a big deal. You would much rather have one than not be here from cancer.

It sounded like I’d have to say goodbye to my social life. It’s such a lifestyle change.

He came in and said, “The resection was clean. Everything went well. The tumor was much bigger than anticipated. The colonoscopy picture showed that it was large. It wasn’t until I went in there that it was really large.”

I was really lucky. I had a great surgeon. I had the chief surgeon of the hospital perform my surgery. He was an amazing surgeon. Everything healed up nicely.

This whole experience, I’ve been very, very, very lucky because I know every case is unique, but my case could have been so much worse in so many different areas.

Initial appointment with the oncologist

I was recovering at my friend’s place. A couple of weeks later, I met with my oncologist at Cedars and he was lovely. Dr. Gong was the best doctor that I’d had up to this point. The most caring, the most understanding, and empathetic. He’s amazing. He’s the one who staged me.

He goes over my pathology report. I’m there with my friend and I’m terrified. You just don’t want to hear the worst, like terminal, stage 4, not curable. You don’t want to hear those words, but you have to prepare yourself for those words. You have to brace yourself.

First, he said, “Before I say anything, I’m really sorry this happened to you. This should have never happened to you,” and I just started sobbing. I just felt like this doctor cares and is taking me seriously. It was overwhelming and I really felt it. I thought, “This is the person who should be a doctor. This guy cares.”

Discussing the pathology report

He said, “I looked at your pathology report and, Amanda, it looks really, really good. You got it in time.” I started crying. He went over everything. He showed me the pathology report. He told me what everything meant.

He said, “We don’t know until you get scanned, but where I would stage you right now is stage 2A.” Staging for colon cancer starts at stage 0, then goes 1, 2, 3, 4, and then substages A, B, [and] C for every stage. I was [in] early stage two.

The staging goes by how much of the colon wall the tumor chewed through. On my pathology report, my tumor had chewed through the first layer, which makes it stage 2A as opposed to stage 1C. It was just starting to chew through and it was very large.

The sizing is the T so on a pathology, it would be T3 and that can go up to 4. The sizing of the tumor and the stage of the tumor is different. It was T3, but stage 2.

I thought, “Great. I caught this in time.” It was very emotional. I was with my friend. I was so happy, so relieved. The surgery was done. It was out of me.

Lymphovascular invasion (LVI)

He goes, “You have something called lymphovascular invasion. They didn’t find cancer in your lymph nodes, but they found the DNA of cancer in blood vessels surrounding the tumor and the tissue, which means you’re at higher risk for this returning.”

I asked, “Okay, what do we do?” He said, “There’s no real evidence of your cancer anywhere in your body, but you have the option to proceed with chemo if you want.

“Obviously, it’s your choice. You don’t have to do chemo. But I highly recommend that you do to reduce the odds of this coming back.” That’s all I needed to hear.

I said, “Of course, I’m going to do chemo.” Again, I don’t think I was really ready for what that meant, but I thought, “Whatever lowers my chances. I don’t want to ever deal with this again so if I have to be sick for a little bit…”

Mind you, being sick for a little bit isn’t just being sick. It’s the worst thing you can put your body through, but I was just so ready to go and get that moving.

CAPOX chemotherapy for colon cancer

I told my oncologist I wanted to start chemo and that was in September. I had to jump through hurdles with my insurance company again.

I’m feeling great at this point. I’m recovered from my surgery. I feel back to myself. I’m not bleeding anymore. I feel great. This is now October/November.

I felt crazy because I’m fighting for chemo and I feel like I don’t need it. My scan was clear in October. I need to keep this from returning, but I haven’t felt this good in so long.

Finally, it got approved. My course of treatment was CAPOX, which is oxaliplatin, the IV chemo, and then Xeloda, which is the pill form of chemo.

My oncologist wanted to do the combo. He’s said, “This is very common. This is one of the most effective routes for colon cancer to keep this from recurring.” He also told me it was one of the most toxic on the body and it’s not fun.

I started in December. I got my port placed the day before chemo, which was the easiest thing. When I got it removed, my doctor let me keep it so I have it as a souvenir. I told him, “I want this. I paid for it. It got me through chemo. That’s mine.”

My anxiety about that was more than chemo. I was freaking out. I joined a colon cancer group on Facebook. I remember putting a post up that said, “I’m so scared to have this port placed because it goes under your skin, on your chest. That seems insane to me.”

Everyone said, “Oh, yeah, it’s an easy procedure. You’re awake for it.” I thought that sounded like a nightmare.

If anyone is in the early stages of their cancer battle and is afraid of getting a port, let me put your mind at ease. You feel nothing. You’re loopy. It’s done in 20 minutes. These doctors do a bunch of them a day. It’s so easy and you’ll be grateful for it. It will save your veins. Trust me.

I was doing chemo every other week for six months. I would go in every other Tuesday. I would do three pills in the morning and three pills at night. I would start my chemo, take my three pills, have my chemo, go home, take my pills at night, [and] go to sleep.

The day after chemo, I would go back to the oncologist’s office and get a shot called Zarxio to boost my white blood cells. Chemo kills your white blood cells so they want to make sure you don’t get sick. They want to make sure that you can come back for chemo the following week and be good.

That shot made me feel so bad, so ill. It would make my body ache. I don’t know what it is about that shot, but my entire body would feel like it got hit by a truck.

I would go in for that shot then they would hook me up to hydration so I’d be at chemo on Wednesday just for the hydration drip through your port. Then after that, you’re good for two weeks.

Side effects CAPOX chemotherapy for colon cancer

The five days following chemo are the worst and it’s cumulative.

The first week I went, I remember thinking, This isn’t so bad. This is 2020-2021. We couldn’t have visitors. We couldn’t have people sit with us, which is fine. I was asleep anyway for the most part, on my phone, or listening to music.

I remember leaving the cancer center that first time thinking, “That wasn’t bad at all. I actually feel fine.” I went home and that’s when it started coming.

I couldn’t even lift up my arms. The nausea was terrible. There’s neuropathy. They warned me beforehand of all the potential side effects of these drugs. They talked about neuropathy and said, “Don’t touch anything cold.” You listen to them, but you don’t really rationalize it.

I went into my fridge, grabbed juice, and it felt a singe. When you touch something cold, it feels like a singe almost. Think of when you get shocked but like a permanent shock and it’s like singeing the tips of your fingers. It would go away when you stop touching something cold. That was the first few cycles.

As the weeks went on and I had more treatments, it became something completely different. My feet and my legs were starting to get numb. I would compare your feet and legs to when your foot falls asleep and you go up to walk — that sensation, that’s what it feels like. Almost like a dead leg.

My fingertips felt completely different. They felt numb and tingly. I didn’t have any pain with it. I know a lot of people have severe neuropathy pain and have to take gabapentin for it.

Again, this is why I say I’m very lucky in all these little aspects of my journey compared to others. I never had pain and I still don’t have pain and I’m really grateful for that because I did 12 rounds. I did it for six months. I got out pretty unscathed.

Neuropathy

I still have some numbness in my feet, but my fingertips are back to normal. My oncologist told me, “We don’t know. Neuropathy can be permanent. It can get worse. It can get better. You can try acupuncture for it,” but my hands are fine and my feet are pretty okay. There’s no pain so I’m fine.

The side effects were cumulative. This is the part of cancer where unless they’ve gone through it themselves or seen someone go through it, people don’t really know how awful it is.

This is the pandemic so no one was really seeing each other. I was talking to my friends through FaceTime. I’d be on my bed, be on the pillow, and would just look terrible. My voice would be so soft.

I’d realize, “I ate a potato today.” It’s all I could manage to get down. Your appetite is gone and you’re so sick, but you can’t actually throw anything up because you’re not eating anything. It’s terrible.

That journey made me understand why people who are on chemo for life [want to] stop because it’s not a quality of life. I get it and I would never judge someone for that decision.

Before, I might have been thought, “Why would you stop fighting? That makes no sense. There’s this treatment out there that can prolong your life.” You get a taste of it and think, “Well, what kind of life is that?” You would rather have a quality of life.

It was quite the journey. A week after chemo, I would start feeling better. I would start feeling like myself. I would always take that week to be outside, have lots of yummy food, and be with my friends to the capacity that I could.

I’m trying not to get COVID because COVID meant I couldn’t have chemo. I would also be putting everyone else in that cancer center at risk so I took it very seriously. I didn’t want to get sick not just for me. I knew I would be okay, but there are a lot of people much older than me, much sicker than me who couldn’t afford to get COVID.

I kept quite a distance from friends, spent a lot of time outside, and would go to the beach a lot with my friends. That felt like a safe place to be — outside, away from people — and that became our little sanctuary. It was just nice to feel normal again. I think that’s what you just want to feel is normal.

I keep my stickers on the wall of every treatment that I had. Every time you go in, you get a new sticker. I would put them around my calendar and count them. Those stickers were a visual for me. When I was in bed feeling my worst, I thought, “Okay, you’ve got six stickers, you just need six more. You’re halfway there.”

My nurse practitioner would check on me in my chemo chair. I was four or five chemos in at that point. I remember asking, “Do I have to do all of this? My scans are good. My blood work’s good. My cancer markers are all good. Do I have to do this? Do I have to go the whole way? Can I just do six?” Because some people just do six.

She put her hand on my leg and said, “Amanda, you are going to be so grateful once this is done. But yes, you have to finish your full treatment. You will be better off for it.” It’s almost like when you’re begging your mom to stay home from school when you’re sick. She was like, “You’re going to be fine. I know this is hard, but you’re going to be fine.

Celebrating the last week of chemotherapy

A week before my last treatment, my friend and I went up to Big Bear. It was this celebratory trip to celebrate my last week of chemo the following Tuesday. It was so much fun.

I wanted to go on this hike and told him, “It has to be a really easy hike. I can’t do much.” He was said, “It’ll be like a chill hike. Don’t even worry about it.”

We go on this hike and it turned into this really strenuous hike. Every five minutes, I would take a 10-minute break just to catch my breath and regain my strength.

When I got to the top of that mountain, I thought, “Wow. Here I am, actively on chemo, I just hiked up, and here I am with these beautiful views. I’m good.”

You can’t believe what you’re capable of. It just felt really good. I went into my last round of chemo with that and said, “Oh, we’re golden. This is good.”

Follow-up protocol

Every six months, I get a CAT scan. I feel like they always find little things in your scan. They found a fibroid in my breast so I have to go in for mammograms and ultrasounds to monitor that. I feel lucky that I’m being watched so carefully and closely because they’ll catch anything.

I go for a colonoscopy every three years. I have one coming up that I requested because they found a polyp in my last one. I want to do one just to make sure I don’t have polyps growing at a rapid rate.

I see my oncologist every three months for blood work and that’s always been good. They’re looking at your cancer biomarkers. Luckily, all my biomarkers have been in the normal range.

They did a lot of genetic testing and they did find out that I do have some mutations that involve colon cancer. There’s a mutation for kidney cancer and skin cancer so they’re keeping an eye on my kidney function, taking a look at my kidneys on scans, making sure I’m going to a dermatologist, [and] getting skin lesions, freckles, and moles checked out.

They’re really keeping a close eye on me. It’s a pain in the butt and not a normal life by any means, but I would rather have that than the alternative. I am monitored very frequently and I’m also on top of it

Dealing with scanxiety

It used to be really bad in the beginning, the first few scans after chemo, because it’s scary. You’re fearing the worst. Is this going to be the day the shoe drops and it comes back? Because it happens.

The fact of the matter is you’ll get a clean scan, but there will likely be something that pops up but doesn’t necessarily mean it’s cancer. I had a spot on my liver show up and I’m thinking, Did it go to my liver? But it was just a cyst. That entails going to get an MRI of your liver done then it resolves itself and it’s no longer there. It was just a cyst.

You remind yourself that our bodies have a bunch of things going on in them at all times and you’re being watched constantly. You’re probably going to see something on a scan.

“There’s a mass in your breast. We’re going to go get an ultrasound of that. Go get a mammogram done. It’s probably nothing,” and it is. It’s just a fibroid. It’s not growing. It’s very common for young women to have them, but because women our age aren’t constantly being scanned, we don’t know that.

I go into scans now with, “Whatever they find, it’s likely nothing. Your biomarkers for every three months are normal.” The biggest thing that I look at [are] my blood work, my labs, and how I’m feeling.

Let’s say something were to come back. Even if they do find something, it’s caught early enough [that] we can do something about it. Nothing will ever be as bad as that first time, in my opinion, because you’re so scared of the unknown.

At this point, scanxiety is real. You don’t ever want to find something, but I’m just like, “Even if they did, it would be caught so early, hopefully, that we could do something about it.”

Importance of advocating for yourself

Doctors went to medical school and so many women and men will take their word to heart and think, “Oh, well, then I’m fine.” Who are they to disagree?

I’m really lucky because my mom’s death — what they said caused my anxiety — lit a fire under my butt even more. This entire time, I just heard her voice in my head like, What are you doing? Go. Get it done. Get it checked out. What would she have wanted me to do?

You’re telling me I’m grieving and that these symptoms are because of grief but in reality, I’m fighting so hard for this because my mom would not want to see me go through anything that she had to go through. I used it as fuel to get it going.

A lot of people don’t even know where to start with self-advocacy. They’re having these symptoms and they don’t even know that a colonoscopy or an endoscopy is what they need. They don’t even know these procedures. They don’t even know a gastroenterologist is a doctor they need to ask for.

Ask for a gastroenterologist. Blood is the main tick-off that something’s wrong. If you’re that concerned, fight for yourself. Tell them you’re having these symptoms because the only way to know is to actually get tested. You can’t go to urgent care and have someone look at your butt and be like, “You’re fine.” You just can’t.

Words of advice

The best thing you can do for yourself is [to] demand answers. Once you get that answer, even if it’s the worst thing, even if it’s cancer, you will feel so much better because the question is gone and they’re going to start taking you seriously.

Demand those answers. Forget about the anxiety of what it is for a second. Forget about the what-ifs. Assume it’s cancer. You’re going to have a plan in place and they’re going to take care of you. Things are going to get moving. You’re going to assimilate to this new life and it’s going to be so much better once you find out. Everything changed after my diagnosis.

It gets better. If you are going through this, there is a light at the end of the tunnel. Everyone’s journey is different, but there is beauty in this awful disease and it opens your eyes to a lot of amazing things.

My patience has grown. My empathy has grown toward people. Be patient with each other. Be patient with yourself.

Listen to your body. Get checked. Stay on top of your health. Don’t think it can’t happen to you because it can. I am a walking example of that. Take care of yourself.

Share This Post

More To Explore

Non-Hodgkin Lymphoma

Understanding New Options for Non-Hodgkin Lymphoma

Accessing the Best Care for You or a Loved One: Understanding New Options for Non-Hodgkin Lymphoma

Dr. Kulsum Bano, Dr. Nilanjan Ghosh, and Dr. Justin Favaro discuss the latest advances with 3-time DLBCL survivor and patient advocate Dr. Robyn Stacy-Humphries.

Katrina Villareal April 22, 2024

Brachytherapy

Cara’s Stage 2C Cervical Cancer Story

Cara R. Diagnosis: Stage 2C Cervical CancerSymptoms: Lower back pain, abdominal pain, bloatingTreatment: Chemo, Radiotherapy, Brachytherapy, hormone therapy

Bella Martinez April 17, 2024

Amanda’s Stage 2A Colon Cancer Story

Amanda was experiencing gastrointestinal symptoms, including bloody stools, which worsened and persisted for almost a year before she finally got a colonoscopy.

She was then diagnosed with stage 2A colon cancer.

She talks about the frustration of not feeling listened to and taken seriously, how important it is to fight for answers and advocate for yourself, and why you should be on top of your health care.

Name: Amanda G.
Diagnosis:
- Colon cancer
- Lymphovascular invasion (LVI)
Staging: 2A
Initial Symptoms:
- Gurgly stomach
- Blood in stool
- Chronic constipation
Treatment:
- Surgery: hemicolectomy
- Chemotherapy: CAPOX (capecitabine & oxaliplatin)
- Zarxio

Once you get that answer, even if it’s the worst thing, even if it’s cancer, you will feel so much better because the question is gone and they’re going to start taking you seriously…

Everything changed after my diagnosis.

Introduction

I’m 33 years old. I live in L.A.

I love to go to the movies. I love to go to the beach. I’m a huge sports fan.

I work in entertainment. I’m a model. I also work in events and hospitality.

I love having a good time. I love going out and having adventures. I love to travel.

Pre-diagnosis

Initial symptoms of colon cancer

I thought, “That’s weird. Is it my diet?” My mind didn’t go to the worst. Those were my early, early symptoms.

I didn’t have insurance at the time so I went to my local urgent care where I was told it was probably just hemorrhoids, probably a fissure.

Just keep an eye on it. No solid answer. I wasn’t super thrilled with it. There was no exam done, no blood testing. I took her for her word.

Still dealing with the gurgly stomach but very minor and the bleeding. I just assumed it was a fissure or hemorrhoids. I thought, “Okay, let’s ride this out and see how long this lasts.”

Physical symptoms of grief

In February 2019, I lost my mom suddenly. I wasn’t there. She died of a heart attack 3,000 miles away.

A lot of people who are grieving deal with similar symptoms. Anything you’re going through will manifest itself through your gut. I had a lot of people tell me this was grief.

It wasn’t until I actually saw my first doctor [that] he was like, “You’ve been through a lot. I wouldn’t worry about this. I truly think it’s just grief.”

My primary care told me I needed psychological intervention because I was panicked at that point.

When I got my health insurance in January, I was excited. I got to see a doctor [and] get blood work and all these tests done. He ran the blood work and it all comes back normal, which was a relief for me. That was all he decided he needed to know that I was probably just grieving.

This was January 2020. The doctor told me, “There’s nothing wrong with you. You have no family history of colon cancer. You’re so young. This would be very outlandish.”

Possibility of colon cancer

When I was growing up, my mom was very ill and I was in and out of hospitals with her. I was comfortable with it [and] I had a head start on maybe what other people wouldn’t.

One of the first few things after Crohn’s disease and ulcerative colitis was colon cancer. I thought, “This isn’t crazy to think.”

The doctor told me, “We can run some tests, like an H. pylori breath test, to see if you have bacteria.” In my mind, it doesn’t make sense what they’re doing, but I’m just going to go through the motions. Let’s tick it off.

Symptoms persisted & intensified

It was wonderful. I had the best time [and] met a lot of great people, but my symptoms just intensified. It was almost like my body was saying, “Now’s the time. This isn’t going away.”

Initial appointment with primary care physician

My red blood cell count was low normal. My mind went to, Maybe I’m not anemic now but give it a couple of months, that red blood cell count will go lower if it is a tumor. I’m thinking all this and I’m just like, “I can’t go to the bathroom without aid from a pill. I’m seeing blood. Clearly, there’s something blocking everything moving.”

Getting initial testing done

Initial appointment with a gastroenterologist

Because of COVID and everything being slow-moving, I didn’t get a virtual appointment with my gastroenterologist until May. [At] this time, my symptoms are so bad.

But I just knew. I remember looking at her and I was like, “I think it’s connected to these symptoms here. I know it’s related.” Even more, I was just ready to see the gastro.

How can it not? The symptoms are not getting any better. They are consistent and persistent. He said, “We’ll get you in for a colonoscopy.”

Waiting for the colonoscopy to get approved

The referral went in and then it’s almost like it got lost in limbo. I didn’t hear back from my insurance. I never got the authorization in the mail.

I called them and I was going back and forth. They’re like, “Hey, we’re super busy with COVID. Sorry about the delays.” I was on hold for so long.

I felt so alone, lost, and confused. I was like, “I feel like I’m going to die and no one’s listening to me.”

I finally got the colonoscopy scheduled in July. This was May so I had to go two more months.

Feeling like no one was listening & not being taken seriously

Colonoscopy prep & procedure

The colonoscopy was an interesting experience. I’ve never had one before.

You have to be on an all-liquid diet. You can’t eat any food the day before so you’re hungry. You’re given this prep that you have to drink the day before your procedure. It cleans you out.

You’re going to the bathroom all night. You are clearing everything out and you know it’s working. The clearer your bowels, the better the procedure is going to go, and the more accurate it will go. They were like, “You don’t want to come in for your colonoscopy and have it be an incomplete colonoscopy and you have to do this again.”

You go in for your colonoscopy and I was asleep during. I know some people are awake, just groggy. I was completely sedated, but I know that’s not the case for everybody.

The procedure itself was so easy and so quick; in and out in a couple [of] hours. No pain after. You go and can finally eat.

I get one almost every year. [For] the past two years, I’ve gotten them every year and now, they’re going to move me to every three years. Not fun but not the worst thing.

Finally getting a colonoscopy

I go for my colonoscopy in July and, of course, there [are] hoops and hurdles to get there. It finally gets approved.

We’re [at] the height of COVID. Now come COVID tests and all those preliminary appointments you have to get.

I remember being like, “Okay, I’ve gotten this far. We’re now almost a year of symptoms and I’m at the homestretch. I’m going to get my answers.” Waiting for my friend to pick me up to take me to the hospital, I was like, “I’m going to get my answer today.” This has been months and months of absolute mental and physical torture.

Once they hook up the drugs to you and you’re loopy, you’re golden. I’m like, “Let’s just get this going. I’ve been waiting for this.”

I expected the worst but also don’t think I was prepared to hear it because you hope for the best. You know in the back of your mind, but you never expect what you’re going to hear.

When I woke up from the colonoscopy, I remember looking around the room. The nurses were there and they were just quiet. “Good morning, Amanda. You’re all done.” I’m groggy. I don’t even know what questions to ask. I’m just like, “Great. Awesome. Cool.”

Finding a large tumor during the colonoscopy

The doctor comes in. I know doctors are very clinical and to the point, but it was just like, “We found a large tumor in your sigmoid colon. I biopsied it. Call me tomorrow for the results.”

I’m high as a kite on these drugs. You couldn’t have told me at a better time because [at] that moment, I was like, “Whatever. Tumors can be benign, right? Great. I have my answer.” I’m looking around at the nurses and like, “Hey, it’s probably benign. At least I have my answer.”

Then you start coming off the drugs. One of my nurses was lovely. He wheeled me out when my friend came to pick me up and I was like, “What happens now with the tumor in my colon?” He goes, “This happened to my friend and they’ll just cut the tumor out, resect you, and you’re going to be golden. You’re going to be fine.”

On the drive home, I was telling my friends and they were super supportive. “You’ve got this. You’ve got your answer, on to the next.” This whole time, I’m rationalizing in my brain. Tumors can be benign and they often are. Maybe it’s just a benign tumor.

It was a large tumor. We didn’t know how large until my surgery, which is crazy. It had grown in my colon. I remember being like, “I have to wait for these results,” and luckily it was just the next day.

Diagnosis

Getting the results of the colonoscopy

I remember being in bed, my head just spinning. I’d already called my family back in Massachusetts and told them what was going on. They were like, “Keep us posted. Tumors are often benign. We have all the faith you’re going to be okay.” I was like, “Yeah, I think I’m going to be okay but at least I know I have a tumor.”

My doctor called and he goes, “Pathology came back and it is cancer. Please come to my office right away for the next steps.”

You are never prepared to hear that, but in the same sense, I knew. This whole time I knew. I had been saying colon cancer since September. It wasn’t new information. Everything checks out.

I was laying down when I got the phone call. I sat up immediately and was like, “Okay, do I come now?” He was like, “Yeah, come now.”

Follow-up appointment with the gastroenterologist

Immediately call my friend and told him it’s cancer. He was like family to me out here. I love him to death. He was like, “What are we doing?” I said, “I need to go to the doctor.”

He picked me up and brought me to the office. That was an interesting car ride and visit. I was just very quiet and shocked.

Things just start going in your mind. How long did I let this go? Did I not fight hard enough for myself? My symptoms have been going on since September of last year. Surely, it’s all over my body by now.

I remember being looked at by everyone in the office as I was leaving. Just diagnosed with cancer and I’m just like, “Okay, bye!” Then you get a lot of, “We’re praying for you.” As nice as that is, you’re like, “Oh, this is going to be a whole thing. This is scary.”

Treatment

Surgery

They didn’t scan me prior to surgery. I didn’t find out my stage until after surgery when I met with my oncologist.

He was like, “I think you caught this early, but obviously, you have to have a scan and meet with an oncologist to be sure.” He said my lymph nodes were clear, which was a huge relief. He tested 28 lymph nodes. All great news.

Hemicolectomy procedure

They went in laparoscopically. It was all done through two little incisions. They went in and took out that part of the colon and resected it.

My surgeon warned me I might need a colostomy bag temporarily. He was like, “You might have to have a colostomy bag when you wake up from surgery. If you feel one, don’t freak out. It will be reversed. We’re going to do our best to help make this a clean resection for you.”

All I’m thinking [about] is my pride. I’m 30 years old. I can’t live my life with an ostomy bag. After researching and meeting people, you can have one permanently, live a full life, and be fine. It’s not a big deal. You would much rather have one than not be here from cancer.

But in my head, it just sounded like, Oh my gosh, say goodbye to my social life. It’s such a lifestyle change. It’s the first thing I felt for when I woke up, but I didn’t have one.

He came in and was like, “The resection was clean. Everything went well. The tumor was much bigger than anticipated. The colonoscopy picture showed that it was large. It wasn’t until I went in there that it was really large.”

I was really lucky. I had a great surgeon. I had the chief surgeon of the hospital perform my surgery. He was an amazing surgeon. Everything healed up nicely.

This whole experience, I’ve been very, very, very lucky because I know every case is unique, but my case could have been so much worse in so many different areas.

Initial appointment with the oncologist

First, he said, “Before I say anything, I’m really sorry this happened to you. This should have never happened to you,” and I just started sobbing. I just felt like this doctor cares and is taking me seriously. It was overwhelming and I really felt it. I’m like, “This is the person who should be a doctor. This guy cares.”

Discussing the pathology report

He was like, “I looked at your pathology report and, Amanda, it looks really, really good. You got it in time.” I started crying. He went over everything. He showed me the pathology report. He told me what everything meant.

He was like, “We don’t know until you get scanned, but where I would stage you right now is stage 2A.” Staging for colon cancer starts at stage 0, then goes 1, 2, 3, 4, and then substages A, B, [and] C for every stage. I was [in] early stage two.

The sizing is the T so on a pathology, it would be T3 and that can go up to 4. The sizing of the tumor and the stage of the tumor is different. It was T3, but stage 2.

I remember being like, “Great. I caught this in time.” It was very emotional. I was with my friend. I was so happy, so relieved. The surgery was done. It was out of me.

Lymphovascular invasion (LVI)

I was like, “Okay, what do we do?” He was like, “There’s no real evidence of your cancer anywhere in your body, but you have the option to proceed with chemo if you want.

“Obviously, it’s your choice. You don’t have to do chemo. But I highly recommend that you do to reduce the odds of this coming back.” That’s all I needed to hear.

I was like, “Of course, I’m going to do chemo.” Again, I don’t think I was really ready for what that meant, but I was just like, “Sure, whatever lowers my chances. I don’t want to ever deal with this again so if I have to be sick for a little bit…”

Mind you, being sick for a little bit isn’t just being sick. It’s the worst thing you can put your body through, but I was just so ready to go and get that moving.

Chemotherapy

CAPOX chemotherapy for colon cancer

I told my oncologist I wanted to start chemo and that was in September. I’m jumping through hurdles with my insurance company again.

I’m feeling great at this point. I’m recovered from my surgery. I feel back to myself. I’m not bleeding anymore. I feel great. This is now October/November.

I felt crazy because I’m fighting for chemo and I feel like I don’t need it. My scan was clear in October. I need to keep this from returning, but I haven’t felt this good in so long.

Finally, it got approved. My course of treatment was CAPOX, which is oxaliplatin, the IV chemo, and then Xeloda, which is the pill form of chemo.

My oncologist wanted to do the combo. He’s like, “This is very common. This is one of the most effective routes for colon cancer to keep this from recurring.” He also told me it was one of the most toxic on the body and it’s not fun.

I started in December. I got my port placed the day before chemo, which was the easiest thing. When I got it removed, my doctor let me keep it so I have it as a souvenir. I’m like, “I want this. I paid for it. It got me through chemo. That’s mine.”

My anxiety about that was more than chemo. I was freaking out. I joined a colon cancer group on Facebook. I remember putting a post up and was like, “I’m so scared to have this port placed because it goes under your skin, on your chest. That seems insane to me.”

Everyone was like, “Oh, yeah, it’s an easy procedure. You’re awake for it.” I was like, “Oh, that sounds like a nightmare. I don’t know that I can do that.” They’re like, “Think of all you’ve dealt with up to this point. This is nothing,” and it really was.

That shot made me feel so bad, so ill. It would make my body ache. I don’t know what it is about that shot, but my entire body would feel like it got hit by a truck.

I would go in for that shot then they would hook me up to hydration so I’d be at chemo on Wednesday just for the hydration drip through your port. Then after that, you’re good for two weeks.

Side effects from CAPOX chemotherapy

The five days following chemo are the worst and it’s cumulative.

The first week I went, I remember thinking, This isn’t so bad. This is 2020-2021. We couldn’t have visitors. We couldn’t have people sit with us, which is fine. I was asleep anyway for the most part, on my phone, or listening to music.

I remember leaving the cancer center that first time being like, “That wasn’t bad at all. I actually feel fine.” They’re like, “Just go home and rest.” I went home and that’s when it starts coming.

You can’t even lift up your arms. The nausea is terrible. There’s neuropathy. They warned me beforehand of all the potential side effects of these drugs. They talked about neuropathy and were like, “Don’t touch anything cold.” You listen to them, but you don’t really rationalize it.

I went into my fridge, grabbed juice, and it felt like a singe. When you touch something cold, it feels like a singe almost. Think of when you get shocked but like a permanent shock and it’s like singeing the tips of your fingers. It would go away when you stop touching something cold. That was the first few cycles.

As the weeks went on and I had more treatments, it became something completely different. My feet and my legs are starting to get numb. I would compare your feet and legs to when your foot falls asleep and you go up to walk — that sensation, that’s what it feels like. Almost like a dead leg.

My fingertips felt completely different. They felt numb and tingly. I didn’t have any pain with it. I know a lot of people have severe neuropathy pain and have to take gabapentin for it.

The side effects were cumulative. This is the part of cancer where unless they’ve gone through it themselves or seen someone go through it, people don’t really know how awful it is.

I’d be like, “I ate a potato today.” It’s all I could manage to get down. Your appetite is gone and you’re so sick, but you can’t actually throw anything up because you’re not eating anything. It’s terrible.

That journey made me understand why people who are on chemo for life [want to] stop because it’s not a quality of life. I get it and I would never judge someone for that decision.

Before, I might have been like, “Why would you stop fighting? That makes no sense. There’s this treatment out there that can prolong your life.” You get a taste of it and it’s like, “Oh, well, what kind of life is that?” You would rather have a quality of life.

I’m trying not to get COVID because COVID meant I couldn’t have chemo. I would also be putting everyone else in that cancer center at risk so I took it very seriously. I didn’t want to get sick not just for me. I knew I would likely be okay, but there are a lot of people much older than me, much sicker than me who couldn’t afford to get COVID.

I keep my stickers on the wall of every treatment that I had. Every time you go in, you get a new sticker. I would put them around my calendar and count them. Those stickers were a visual for me. When I was in bed feeling my worst, I was like, “Okay, you’ve got six stickers, you just need six more. You’re halfway there.”

She put her hand on my leg and was like, “Amanda, you are going to be so grateful once this is done. But yes, you have to finish your full treatment. You will be better off for it.” It’s almost like when you’re begging your mom to stay home from school when you’re sick. She was like, “You’re going to be fine. I know this is hard, but you’re going to be fine.”

Celebrating the last week of chemotherapy

A week before my last treatment, my friend and I went up to Big Bear. It was this celebratory trip to celebrate my last week of chemo the following Tuesday. It was so much fun.

I wanted to go on this hike and I was like, “It has to be a really easy hike. I can’t do much.” He was like, “It’ll be like a chill hike. Don’t even worry about it.”

We go on this hike and it turned into this really strenuous hike. Every five minutes, I would take a 10-minute break just to catch my breath and regain my strength.

When I got to the top of that mountain, I was just like, “Wow. Here I am, actively on chemo, I just hiked up, and here I am with these beautiful views. I’m good.”

You can’t believe what you’re capable of. It just felt really good. I went into my last round of chemo with that and I was like, “Oh, we’re golden. This is good.”

Follow-up protocol

I see my oncologist every three months for blood work and that’s always been good. They’re looking at your cancer biomarkers. Luckily, all my biomarkers have been in the normal range.

Dealing with scanxiety

It used to be really bad in the beginning, the first few scans after chemo, because it’s scary. You’re fearing the worst. Is this going to be the day the shoe drops and it comes back? Because it happens.

The fact of the matter is you’ll get a clean scan, but there will likely be something that pops up but doesn’t necessarily mean it’s cancer. I had a spot on my liver show up and I’m thinking, Did it go to my liver? But it was just a cyst. That entails going to get an MRI of your liver done then it resolves itself and it’s no longer there. It was just a cyst.

You remind yourself that our bodies have a bunch of things going on in them at all times and you’re being watched constantly. You’re probably going to see something on a scan.

I’m like, “You’re feeling fine. You have no symptoms of anything. You were just scanned six months ago. You just had blood work three months ago. Everything was fine. Everything was normal. There’s nothing out of whack here so there’s no reason for you to go into this scan thinking anything.

“Let’s say something were to come back. Even if they do find something, it’s caught early enough [that] we can do something about it. You’ve done this before.” Nothing will ever be as bad as that first time, in my opinion, because you’re so scared of the unknown.

At this point, scanxiety is real. You don’t ever want to find something, but I’m just like, “Even if they did, it would be caught so early, hopefully, that we could do something about it.”

Importance of advocating for yourself

Doctors went to medical school and so many women and men will take their word to heart and be like, “Oh, well, then I’m fine.” Who are they to disagree?

I’m really lucky because my mom’s death — what they said caused my anxiety — lit a fire under my butt even more. This entire time, I just heard her voice in my head like, What are you doing? Go. Get it done. Get it checked out. What would she have wanted me to do?

Words of advice

My patience has grown. My empathy has grown toward people. Be patient with each other. Be patient with yourself.

Listen to your body. Get checked. Stay on top of your health. Don’t think it can’t happen to you because it can. I am a walking example of that. Take care of yourself.

Thank you for sharing your story, Amanda!

Inspired by Amanda’s story?

Share your story, too!

Colon Cancer Patient Stories

Shannon M., Colon Cancer, Stage 1

Cancer Details: Found the cancer as a result of her Lynch Syndrome
1st Symptoms: Routine colonoscopy found polyp
Treatment: Partial colectomy

Hugo T., Colon Cancer, Stage 1

Cancer Details: Diagnosed 2 weeks after 5 years remission from testicular cancer
1st Symptoms: Inflamed bowel
Treatment: Subtotal colectomy, immunotherapy

Shannon C., Colon Cancer, Stage 2A

Cancer Details: Diagnosed at 29, tested positive for Lynch Syndrome
1st Symptoms: Severe pains after eating
Treatment: Partial colectomy

Haley P., Colon Cancer, Stage 3C

Symptoms: Constipation, fatigue, shortness of breath
Treatment: Surgery, chemotherapy

Amanda G., Colon Cancer, Stage 2A

Symptoms: Gurgly stomach, blood in stool, chronic constipation
Treatment: Surgery (hemicolectomy), chemotherapy (CAPOX), Zarxio

Jason Randall describes his colon cancer journey

Jason R., Colorectal Cancer, Stage 4 Diagnosis: Colorectal Cancer Symptoms: Abdominal pain, constipation, belly button discharge Treatment: Liver surgery, chemotherapy, radiation

Angelica A., Bowel Cancer, Stage 3

Symptoms: Fatigue, anemia, irregular bowel movements, loss of appetite, heavy periods Treatment: Laparoscopy, chemotherapy, partial hysterectomy

Danielle shares her stage 4 metastatic colon cancer

Danielle A., Colorectal Cancer, Metastatic Stage 3 Diagnosis: Stage 3 Colorectal Cancer Symptoms: Abdominal pain, constipationTreatment: Surgery, Chemo

Keith shares his stage 4 colorectal cancer story

Keith H., Colorectal Cancer, Stage 4 Diagnosis: Stage 4 Colorectal Cancer Symptoms: Abdominal painTreatment: Surgery, Chemo

Sherrie shares her stage 4 metastatic breast cancer story

Stephanie K., Colon Cancer, Stage 3

Symptoms: Very bad cramps, bloating, indigestion, burping
Treatment: Surgery, chemotherapy (CAPOX)

Kelly B. Diagnosis: Stage 3 Colon CancerSymptoms: Blood in stool, cramping, bloating Treatment: Chemo, surgery

Courtney shares her colorectal cancer story

Courtney H. Diagnosis: Stage 1 Colorectal CancerSymptoms: Blood in stool, fatigue Treatment: Chemo, oxaliplatin, capecitabine, surgery

Zykeisha shares her stage 4 colon cancer story

Zykeisha L. Diagnosis: Stage 4 Colon CancerSymptoms: Anemia, stool changes, blood in urine, back painTreatment: Chemo, Avastin, FOLFOX, FOLFIRI, surgery, Neupogen shots

Lung Cancer Lung resection Patient Stories Surgery

Christine’s Stage 2A Lung Cancer Story

Post author By Alexis Moberger
Post date May 15, 2023
No Comments on Christine’s Stage 2A Lung Cancer Story

Christine’s Stage 2A Lung Cancer Story

May 23, 2023

Christine’s journey began with a stage 3 triple-positive breast cancer diagnosis, which unexpectedly led to the discovery of her 2A lung cancer. Despite experiencing no symptoms related to lung cancer, it was detected during the testing process for her breast cancer. Although initially dismissed as insignificant, Christine’s persistence and intuition compelled her to advocate for further investigation. She insisted on a biopsy, which revealed that the lung nodule was not a benign or insignificant finding. The subsequent CT scan showed the nodule shrinking during chemotherapy, raising further alarms.

Empowered by her cancer journey, Christine tapped into her assertiveness and communicated her needs. She pushed for additional tests such as a PET scan and a biopsy, seeking alternative opinions when the initial results were inconclusive. Trusting her intuition proved crucial in navigating her medical care and making informed decisions. Following a lower lung resection, Christine faced complications during her recovery but gradually healed and focused on rebuilding her lung capacity and overall strength through physiotherapy. Weeks later, she received the surprising confirmation that the nodule was cancerous, an entirely separate primary cancer.

Investigation into her childhood home revealed high levels of radon gas, indicating a potential environmental cause for lung cancer. Christine emphasizes the significance of trusting one’s intuition and speaking up when something feels amiss, particularly for women. Her experience has propelled her to empower and support others facing cancer.

At The Patient Story, our lung cancer stories provide a glimpse into the experiences, emotions, and triumphs to offer support, encouragement, and a sense of community to people who are going through similar journeys.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Christine E.
Diagnosis:
- Lung Cancer
Staging: 2A
Initial Symptoms:
- None; saw a lung nodule in the CT scan
Treatment:
- Surgery (lung resection)

Table of Contents

Introduction
Pre-diagnosis
Lung resection
Post-surgery plan
Words of advice

Introduction

Interviewed by:

Alexis Moberger

I’m a survivor of both breast cancer and lung cancer in the primary stage.

While going through my breast cancer staging and getting everything done, we were doing secondary testing in CT form. During that time, we noticed there was a nodule on my lung.

It was quite scary for a long time because I understood that this could very well be stage 4 breast cancer. I really had to advocate for myself as we went through the process to find out what this nodule really was.

From the time that I was diagnosed with any type of cancer to when I was in complete remission from both cancers was about a year’s time.

Pre-diagnosis

I don’t believe that I felt any symptoms in regard to lung cancer. I truly believe that I wouldn’t have found it either without the first primary cancer. Lung cancer is one of those scary things that once you start feeling symptoms tends to be a little bit advanced.

In a way, I was quite fortunate that breast cancer led to more testing. During that process, we found another cancer that may not have been found for many years.

Two months into my breast cancer journey, we did the CT scan. I was so far along in my breast cancer journey that they wanted to test other areas of my body to see if it had migrated. We tested the liver, brain, chest, abdomen, pelvis, and reproductive organs.

In all of those tests, everything came back negative except for this lung nodule that popped up. At first, the doctor said it could be a fatty tissue deposit, it could be an air tissue deposit, it could be all kinds of things that are really standard and normal, and not to worry.

However, I was not at all comfortable with it. My breast cancer was on my left side and it was in the lower lobe of my lung on the left side, which was directly behind the breast.

I spent a good five months really thinking that I have stage 4 breast cancer. I don’t know what this is going to be like. I had to push a bit to get it biopsied because they really said, “We’re just going to watch it. It’s nothing.”

They redid a CT scan in preparation for my surgery. We realized that it got smaller during my chemotherapy so that was a clear indicator that it’s changing. It’s not just a fat deposit or an air deposit.

What was crazy about all of this is that in the process of trying to deal with breast cancer, they forgot that they gave me a CT scan and didn’t check it. I was all prepared for my surgery and no one knew except me, who checked my own health records, that this was changing.

I literally called my oncologist on the cell phone and was like, “Have you seen the CT scan?” He was like, “The what?” I’m like, “The CT scan that I made you give me?” He then went in, read it, and was like, “Oh. I gotta make some phone calls.” It was wild. I started falling through the cracks.

They were so busy with the process of my breast cancer that they just didn’t think to check it. They had forgotten that they gave it to me.

I was just frustrated one night [so] I checked it and I realized it changed. That’s when I started making phone calls and setting off alarms.

The original scan done two months into my breast cancer journey showed 1.4 cm in size. When we went in for surgery, we realized that it had changed to 1.1 so it got smaller in five months of chemotherapy.

Advocating for yourself

In my past life, I was a very strong people-pleaser. If the guy in the white coat told me not to worry, I would just listen.

When this all happened and I started checking my own scans, I really pulled out a version of me that [lay] dormant for a long time. I got really, really unapologetic about who I was and what I wanted.

I called my oncologist and said, “Hey, I don’t know how I got your phone number, but I need to talk to you.” I really found it quite empowering at that time to say, “I want a PET scan. I want that done. I want a biopsy. We’re doing this.” Really brought out a version of me that I didn’t know prior to this.

Pushing for testing

In a very short period of time, I got a call from a lung oncologist saying, “We want to give you a biopsy, get that PET scan that you asked for, and all of these things.” It really kicked into high gear because we were really, truly running out of time in a lot of ways. We had my breast surgery scheduled so we needed to really hit this hard.

I did a bunch of testing in a short period of time. The lung biopsy, which was very uncomfortable, came back inconclusive. They weren’t able to get it because of where it was and what it was attached to. They weren’t able to get around the rib in order to test it.

At first, they said, “It’s probably still nothing.” I was like, “Nope. Who am I talking to next? Who else do you have in your arsenal? Because I’m not accepting that.” They said, “Who else do you need to speak to?” A surgeon would be the next natural step.

I got in contact with the surgeon and his bedside manner wasn’t the best. He was like, “People your age, it’s probably a fat deposit or an air pocket. It could have changed in size because of the scan itself. I don’t feel that it’s really anything. But if you want, for your peace of mind, to remove it, I’ll do that for you.”

When I spoke to the surgeon, it was right in this period of time [when] we were really hitting the stage 3 breast cancer hard.

Being in tune with your body

I think that we all have [the] ability to be intuitive about our own bodies. I can’t speak for men, but I know that women truly know what’s going on. We know what’s going on in our relationships. We know what’s going on in our friendships. We know what’s going on in our bodies.

There’s a part of us that, from a young age, was told don’t make a scene, be the good girl that everyone wants [us] to be, and don’t speak up so we don’t. We push it down.

Cancer gave me the ability to hear that small little voice that says, “Hey, there’s something wrong here,” and communicate it.

Lung resection

He decided that he was going to remove it for “peace of mind,” as he said. Because of its proximity to the breast, I was still in this place where it could very well be stage 4 breast cancer and I just was not comfortable with that.

My PET also came back inconclusive. There was really no reason at all to take this nodule out other than an intuitive inclination that I’m not okay with leaving it there.

Within two or three weeks, I was scheduled for a lower lung resection. It was about a month’s time from my breast surgery to my lung surgery. Very quick turnaround. They did a laparoscopic surgery in my lung to remove this nodule.

Trauma from the surgery

Everything that I went through was so difficult. But the trauma that I don’t know that I’ve really dealt with was this surgery. I feel it deeply when I speak about it.

When I woke up from that surgery, which was supposed to be quite smooth, I had a reaction of some kind. I don’t recall what the medical term is but it’s a spasming of the lung [where] the patient can’t breathe in deeply.

You wake up drugged, confused, and can’t breathe. The most natural thing to do as a human is to breathe. The scariest thing to lose is breath and it was a very scary time.

It was pretty crazy. It was 45 minutes of me not knowing. They spoke to me, but I don’t know what they said. I know that they said things like, “This will pass,” or “You’ll be okay,” but I don’t recall them saying that. I just remember sipping for air and it’s difficult to remember it.

It’s like the lights would get bright then dim then bright then dim. I remember thrashing, panicking, and not really knowing what was happening.

My husband wasn’t allowed in the hospital because of COVID. He didn’t know what was wrong with me and if I was okay. No one would give anyone any answers. It was awful. It was scary.

Healing from the lung resection

I stayed an extra night in the hospital than they had expected me to based on that reaction. That spasming did a lot of inflammatory damage just from that tensing.

Once I started to heal from the resection, I was able to go home and start working on my lung capacity as well as trying to get my arm strength and my upper chest capacity up. I was doing all kinds of physio all at the same time.

After about two to three weeks, I got a call from the surgeon and he said, “Have you ever smoked?” I said, “No, I haven’t. Why?” He goes, “Well, it was cancer. You were right. It was cancer.” I was like, “Mm-hmm.” And he said, “I’m shocked. I didn’t expect it to be.”

I said, “So what does this mean? Do I have stage 4 breast cancer?” He said, “No, it’s wild because it’s actually second cancer that you had at the same time as your breast cancer in its own primary way.”

Post-surgery plan

I was very fortunate to catch it very early. They’ve never given me an official staging, but from what I understand from my oncologist, he believes it was a 2A, which tends to be completely asymptomatic.

I was really fortunate to have it removed with clear borders right away. There was no treatment plan because we were already following with left-side radiation for my breast and the lung tumor was directly behind my breast on the left side. The radiation took care of what they would have done.

After asking if I had smoked, the surgeon also asked me if I’d ever heard of radon gas. Never heard of it. He said that they’ve tested it for genetic markers and there is none. They said this has got to be environmental.

They asked if I have any way of testing my childhood home for radon gas so that’s what I did. I got connected with the lung association in my province. We tested my childhood home and it came back high.

We believe that the reason that this cancer [was] expressed is because I was already in a breast cancer state so it allowed another cancer to come through that was lying dormant, that we believe is caused by radon gas.

Words of advice

It’s so important to listen to your intuition, to whatever version of speaking that’s coming through to you that says, “Hey, there’s something wrong here.”

We, as women, get ourselves into so much trouble pushing that down because we want to be the good girl and it’s just not serving you. It’s not serving anyone around you.

Speak your mind. Speak your truth. If something says this isn’t right in whatever capacity that is, especially in cancer, stand up and say no. Learn to be the powerful person that you are.

In my life, I’ve always wanted to do some things that I thought, Someday I’ll do them, and one of them is coaching. I always wanted to be in mentorship. I wanted to be in psychology. I wanted to help people, but I felt too small. Who am I to be this?

When I had my breast cancer save me from lung cancer, I just said, “There’s a reason I’m here. There is a reason that I am put on this earth. I’m one of the lucky ones. I got to keep my life.” For that reason, I just live every part of life [to] its absolute fullest.

I launched my career. I now help women going through cancer and I don’t apologize for any of it.

I travel the world. If someone said, “Hey, let’s skydive,” I’d say yes. At this point, there’s nothing in this life that I’m willing to wait for. Because whatever this was that allowed my breast cancer to catch my lung cancer, it was heaven-sent.

Bad things happen to everyone. Sometimes it’s cancer, sometimes it’s divorce, and sometimes it’s [the] loss of somebody you love. So many things that it could be.

Every single time, there is a way to take that pain and alchemize it. There is a way to turn that pain into power. I invite you to do that, to not fall victim to the situation that happened to you, but instead to transmute what you went through into the version of you that you’ve always wanted to be.

I’m so excited to help people. That’s really all I’ve ever wanted to do. Now I’m living my purpose and connecting with people and I’m really grateful.

When she was 31, Christine found a lump in her left breast and was then diagnosed with stage 3 triple-positive breast cancer. She shares the story of how her cancer journey began.

Read Christine’s stage 3 breast cancer story here »

Thank you for sharing your story, Christine!

Inspired by Christine's story?

Share your story, too!

Lung Cancer Patient Stories

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Amy G., Non-Small Cell Squamous, MET, Stage 4

1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)

Dan W., Non-Small Cell, ALK+, Stage 4

1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)

Tiffany J., Non-Small Cell Adenocarcinoma

1st Symptoms: Pain in right side, breathlessness
Treatment: Clinical trial of Tagrisso and Cyramza

AC-T Adriamycin (doxorubicin) Breast Cancer Cancers Chemotherapy Cytoxan (cyclophosphamide) Lumpectomy Radiation Therapy Surgery Taxol (paclitaxel)

Christine’s Stage 3 Triple-Positive Breast Cancer Story

Post author By Alexis Moberger
Post date May 15, 2023
No Comments on Christine’s Stage 3 Triple-Positive Breast Cancer Story

Christine’s Stage 3 Triple-Positive Breast Cancer Story

May 19, 2023

Interviewed by:

Alexis Moberger

While in her early 30s, Christine discovered a lump under her left arm and breast area, eventually leading to a stage 3 triple-positive breast cancer diagnosis. Committed to her healing journey, she embarked on a comprehensive treatment plan that included chemotherapy, radiation therapy, and a lumpectomy procedure.

Throughout her breast cancer experience, Christine faced challenging decisions regarding family planning, seeking guidance from her dedicated healthcare team. She drew strength from the support of her loved ones, finding comfort in their presence and encouragement.

Christine faced the difficult decision of preserving her fertility before starting cancer treatment. Learning that chemotherapy could potentially render her infertile, she opted for embryo freezing to safeguard her chances of having children in the future.

Despite the emotional challenges and time constraints, Christine underwent the fertility treatment process and successfully obtained two healthy embryos. She insisted on completing the embryo transfers before starting chemotherapy, balancing the urgency of her cancer treatment. Within a month, she underwent fertility treatments and began chemotherapy, demonstrating remarkable resilience and determination.

Transitioning from fertility preservation to treatment, Christine embarked on a five-month journey to combat her breast cancer. Her treatment plan consisted of AC-T chemotherapy followed by paclitaxel. Initially hesitant about chemotherapy, she underwent a powerful shift in perspective, viewing it as essential for her survival.

In parallel with conventional treatment, Christine also incorporated integrative therapy for additional support. Despite the challenges of hair loss and physical side effects, she showed remarkable resilience, facing the mental and emotional struggle of redefining her identity and embracing her new path toward healing.

In addition to Christine’s narrative, The Patient Story offers a diverse collection of breast cancer stories. These empowering stories provide real-life experiences valuable insights and perspectives on symptoms, diagnosis, and treatment options for cancer.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Christine E.
Diagnosis:
- Breast Cancer
Staging: 3
Initial Symptoms:
- Lump in her left breast
Treatment:
- Chemotherapy: AC-T (doxorubicin, cyclophosphamide, paclitaxel)
- Lumpectomy
- Radiation

As difficult and ugly as cancer was, there was still so much beauty. And what that beauty was is that I’ve become 100% present in my life.

Introduction

I’m married to a wonderful man. We don’t have children yet. We live in a small town just outside of our largest city in Saskatchewan. It’s very peaceful here.

We love to walk. We love to get together with friends. We’re really social.

The rest of the time, I’m working. I work at home. I’m currently working with cancer survivors.

Pre-diagnosis

Initial symptoms

I was feeling quite tired, stressed, [and] pale. I was told by quite a few people that I looked quite pale. I just chalked it up to the stress of COVID and being at home. I didn’t really think much of it, to be honest. But I did find my anxiety was rising and didn’t feel very well overall.

When I was laying on my side, I noticed that the tissue in my breast had been pulled straight while the rest of the tissue was falling to the side. That was really [the] only major tip-off that told me that there was something wrong.

You could see a very distinct divot in that spot. Instantly, I felt my breast and realized that there was a very large, very hard, very stationary lump.

I wasn’t doing self-breast checks. Of course, we should be doing them, but I was so young that I thought, There was no reason for me to do this.

Reaction to feeling a lump on the breast

As soon as I felt the lump, I knew that it wasn’t benign. It was too large. It was too hard. It was too stationary. I knew nothing about cancer because of my age. I had never researched it or thought about it, but I just knew that it was cancer.

I’m up all night trying not to worry my husband. I’m staring at the ceiling, crying, and just thinking, What’s my husband’s life going to be like without me? How am I going to say goodbye to my parents? What’s going to happen here? These dark thoughts really intruded my mind for eight hours. I didn’t sleep a wink.

Family history of cancer

There [are] varying degrees of cancer in my family. We had one with stomach cancer. My great-great aunt had breast cancer. Nothing to really tip us off that a 31-year-old should be watching for it.

Appointment with the family doctor

The next morning, I got to work right away. I got a hold of my family doctor and said, “Something isn’t right.” She was able to get me in just a few days later.

She really put my mind at ease. She said, “This probably is just a cyst with your age. It’s probably nothing,” so I felt okay, but she said, “We’ll give you an ultrasound and a mammogram just in case.”

Breast ultrasound and mammogram

Two days later, I was there for the mammogram and ultrasound. The tech started off with the ultrasound and said, “We need to do a mammogram.”

We did the mammogram. The tech came in and in a very somber voice, he said, “This isn’t benign,” and that’s really all he could say.

I remember the whole room zoning in on his mouth. I could see him speaking. Everything went fuzzy. I felt out of [my] body at that moment. I don’t recall what he said after, “It isn’t benign.”

I’m grateful that she decided to go forward with these tests. I really was very fortunate.

Diagnosis

Biopsy

After that, I was sent for a biopsy. I met with the breast health center very quickly. We decided to do a needle biopsy of the axilla as well as the breast. They took samples from each spot.

I met with the surgeon and my husband came with me. However, because of COVID, he wasn’t allowed in so that was heartbreaking. He was sitting in the car.

I’m being told by the surgeon that this biopsy is truly just for protocol purposes, that we can discuss my treatment plan, [and] how long I’ll be in chemo without having any MRIs or biopsies coming back. He knows for certain that this is cancer because of [its] size.

He wasn’t able to give me an exact staging, but he did say, “I do not believe this is an early stage.” I, of course, burst into tears. I’m by myself and I’m told that this isn’t early.

Next, I asked, “How long do I have?” You don’t know how cancer works until you’re faced with it. He stopped and said, “Oh, breast cancer is curable. You’re going to be fine.” I was like, “Oh my God, really? Oh, thank God.” That was really a positive moment.

I was very fortunate. I had a very kind surgeon who really was trying his best for us and for our family.

Getting the test results

The biopsy was taken with an MRI the next day. The MRI took about two weeks to come in and the biopsy took about three/four weeks so you can imagine that period of time was absolute torture.

We’ve got all these blood tests, MRIs, biopsies, waiting, unsureness, and everything. Telling your family that you don’t really know what’s wrong, but something’s bad.

The MRI results came back as a stage 3 breast cancer tumor coming in at nearly 8 cm with at least two lymph nodes involved from what they could see from the scan, [with a] suspicion of four.

Reaction to the test results

I was unaware of what all of that meant. I spent a disgusting amount of time on Google learning what BI-RADS means, what stage 3 means, do people survive that, and all these types of things.

I did feel somewhat left in the dark in that way. The doctors were doing their best. They were moving as quickly as they could, but they were forgetting to tell me what it means.

Fertility preservation before cancer treatment

He mentioned fertility [and] the potential loss of both breasts or the nipple. Those things were really traumatic, but he just kept saying, “Let’s wait and see. Let’s see what we can do for you. We’re going to do our very best.” I was really grateful for that kindness and humanness.

We needed to do treatment. But like many 31-year-olds, I waited and intended to have children at about 31. We were in the beginning stages of trying. My husband and I were unsuccessful. Looking back, thank goodness that we were unsuccessful at that point.

When this came up, he asked, “Do you have [the] intention of having children?” I said, “Yes, I do. We were, in fact, actively trying.” He said, “Okay, chemotherapy often renders you infertile.” That was probably the biggest blow.

My husband and I were meant for children. We put all of our time in our 20s traveling, experiencing, and being with friends. We were finally ready so that was a big blow.

I asked, “What are my options?” He said that a lot of people will do embryo freezing so they’ll take your current eggs, freeze them in the embryonic state, and then should you survive this and should there be no further damage, you should be able to have those babies in the future. That would be the eggs of a 31-year-old.

Because it takes time to be able to try again, we launched straight into that.

Talking about fertility preservation options with your spouse

We were very comfortable [doing] that right away. It was a do-or-die sort of situation. We knew that we had a choice. Do we want to try to have our own babies? The answer was yes.

I was a little leery of the process because there’s estrogen involved. I had estrogen-positive cancer, but nothing was going to stand between me and my future babies. The decision was made and we decided to move forward with it.

Talking with my husband was difficult. We both really wanted to just live normally. We didn’t want to be facing cancer. We wanted to be having babies with our friends and with our families.

My friends and families are living their lives. They’re starting their careers. They’re having babies. And I’m facing this. It did feel unfair to both of us. It was a difficult conversation.

Fertility treatment process

There [are] daily medications, daily needles, lots of blood work, which I’m historically quite scared of because I have really difficult veins so that wasn’t fun, and lots and lots of appointments.

It’s a very heavy-duty time when you’re going through fertility treatments and you add in the stress of [a] stage 3 diagnosis.

It feels like a distant memory thinking back to it now because it was just so full-on for two weeks that I don’t know how I hacked that.

We have extraordinary strength inside of us that gets pulled out in periods like this. I don’t know how I got through, but we did, one step at a time.

We got to the point where I had lots of eggs. They were strained and I assume it’s because of stress. We were able to combine them and successfully come out with two healthy embryos.

One of the advantages of having later-stage cancer is that things happen quickly. A few doctors pushed back on me going through the fertility treatments. They said, “You need to get in now.”

I was so firm that I was going to finish these embryo transfers before I begin so it postponed the whole process by two and a half weeks. A few doctors were quite concerned about that, but the moment I was ready, they were ready and we moved forward.

From the time I was officially diagnosed to the time that I started chemotherapy was approximately a month’s time. That was getting the doctors in place, getting the oncologists in place, doing all of the fertility treatments, and then actually entering into the chemotherapy stage of my treatment.

Treatment

AC-T chemotherapy

I did two months of heavy-duty chemo called AC-T, which is doxorubicin and cyclophosphamide. We did that for four rounds and then we did 12 rounds of paclitaxel every week. Altogether, it was a five-month treatment plan.

Reframing personal view of chemotherapy

It was difficult for me to wrap my brain around [it]. You don’t know until you’re faced with it.

I truly believed if I was diagnosed [with] cancer, I would never touch poison with a 10-foot pole. I would leave, go someplace where I never ate sugar again, live with the monks, and heal myself. That’s what I believed that I would do.

Now you’re facing this diagnosis and the doctor says to you, “If you do what I tell you, you’ll live. But if you don’t, you’ll die.” That was such a paradigm shift for me.

I had a difficult time feeling that this was the best way. I tried my very best to reframe what I had previously said was poison. I tried to reframe it as medicine. I did lots of meditation because that spoke to me and that’s really who I am as a person.

Integrative therapy in conjunction with chemotherapy

I decided to do integrative therapy. I did a naturopathic version of cancer care in conjunction with my cancer therapies because, for me, that was how I could see this as something valuable.

Whether or not it’s for anyone is up to them. But I spoke with my oncology team and we decided that because of the way that I feel as a naturalistic person, this was going to be the best way for my mental health.

The first conversation I had with my naturopath was saying, “I hate chemo. I don’t want anything to do with it. I just want to do naturopathic, but I’m scared.”

Because it was COVID, we had to talk on the phone. It was beautiful because, on the other side of the conversation, she said that their clinic believes in an integrative approach. They believe that you should throw everything at it and they are not against chemotherapy.

Hearing that from a naturalistic doctor was so encouraging. I really think it’s what transferred me from a non-believer of chemotherapy to a believer because someone who I respected said, “Hey, this is a good thing.”

The experience of going through chemotherapy

Undergoing chemo was difficult, but there were breaks and I really appreciated that. You’d go in, have this really difficult experience for days, and then have a little bit of a break and a piece of normalcy. That really helped me a lot.

Between chemo, radiation, and surgery, the most difficult part of my journey was chemotherapy. The combination of losing your hair, puffing up because of steroids, [and] gaining weight because of the steroids really robs you of this femininity that we as females attach to.

Side effects of chemotherapy

One of the more difficult parts of my journey was [the] loss of hair, which is crazy but also not crazy because [as] women, we identify with that. I would say it felt lonely, it felt difficult at times, and no one could truly understand how hard this was for me mentally.

They could see that I was physically ill, nauseous, and tired. They could see that I looked pale. No one could truly tell what was more difficult, which was breaking down paradigms — fear of poison, fear of losing my hair, fear of long-term side effects, and who I really was now. That was probably the harder part.

Mental health support

Some really big things for me were my naturopathic appointments. I loved speaking to an oncological naturopath. Those 45-minute sessions where they explained everything back to front really helped me to understand what these were.

The doctors just don’t have time. They’re overrun, especially in Canada. They have 15-minute appointments and they have to get to the next thing.

When I was able to have those 45-minute appointments where they would speak to me about every nook and cranny, that really empowered me. That really made a big, big difference during that process.

Surgery

We finished chemotherapy after five months and then we took a one-month break in preparation for a lumpectomy.

I had a very extraordinary result; that was the term my oncologist used. My tumor shrunk from nearly 8 cm down to 1.2 cm so we were thrilled. We were so pumped.

We were able to make the decision for [a] lumpectomy as opposed to a mastectomy because that is what I wanted.

I had done a lot of research on the differences between mastectomy and lumpectomy, whether or not it is more helpful, and the grief stage that a lot of women go through in the loss of their breasts.

I already lost my hair and body size, and I knew the grief that that was giving me so I opted for a lumpectomy because I wasn’t willing to add that on.

Lumpectomy vs. mastectomy

A mastectomy, whether unilateral or bilateral, is where you remove one or both of your breasts. All of the tissue is removed. Some people get reconstruction. They’ll have expanders. There [are] different ways that people can re-enhance their chest again.

The difficult part is no nipples present unless they opt for that surgery. There can also be a loss of sensation, loss of equilibrium, [and] things like that.

It’s up to the woman what feels right for her. I don’t discourage a mastectomy [from] anybody who decides that that’s what’s right for them. But I opted for the lumpectomy because the lumpectomy was removing just the tumor.

In my case, I was lucky. I didn’t have to nick or disturb the nipples in any way. I was able to just remove the tumor. Because it was only 1.2 cm, I was left with a very small divot, which filled in with fat over [the] years. I have a very large scar, but I still have my breasts exactly as they are.

Preparing for the lumpectomy

Because of my naturopath, I had lots of preparation. I did lots of protein before. There [were] lots of supplements that were meant to help with pain, with not disturbing the cancer cells and having them spread to different parts of the body.

I also did a lot of meditations to help calm my nervous system and to help [me] believe that this was going to be a smooth transition. Of course, I had my fantastic surgeon who just had the most wonderful bedside manner and was so nurturing. I was feeling quite confident going into that surgery.

Survivorship

I do feel that there are times I’m still processing and this is three years from my diagnosis.

I had a difficult time with burns from my radiation [and] scarring from my surgeries, but the really difficult thing was the weight gain. That was so hard. It really felt like salt in the wound.

A lot of trauma around how quick the whole process was. The very definition of trauma is too much, too fast and that’s really what happened. I believe that I sustained post-traumatic stress from all that happened.

It was interesting. While I was in the process, I felt like, “I can do this.” I felt almost invigorated in a lot of ways and very positive.

But afterward, in the survivorship role, I found myself very low, very disconnected from myself and my body. I felt depressed really in a lot of ways. All of that trauma came flooding back. I didn’t expect it, but mentally, the survivorship stage was more difficult than the journey itself mentally.

Words of advice

When you’re choosing your treatment path, it truly is a difficult road. You need to be able to persevere from what you feel is right for you because it’s going to be hard.

If you align your treatment plan in a way that speaks to you, you can always draw from that and say, “I’m doing my best with what I know.” On those difficult moments, you have something to look back on and say, “I was true to me.”

Cancer teaches you a few things. It teaches you how to be self-compassionate because you have to be. It teaches you how to ask and allow people to help you because you have to.

It can be the beginning of something beautiful. I know that, for me, as difficult and ugly as cancer was, there was still so much beauty. And what that beauty was is that I’ve become 100% present in my life.

I don’t fear anything anymore because I know what fear really looks like. I’ve become completely unapologetic about who I am and what I need.

Cancer is not inherently a blessing, but I believe that you can make a choice to make this trauma mean something to you and bring you into the type of person that you’ve always wanted to be.

While still very much in her cancer journey, Christine was shocked to get diagnosed with a second cancer. She shares her story of finding out she had stage 2 lung cancer.

Read Christine’s stage 2 lung cancer story here »

Thank you for sharing your story, Christine!

Inspired by Christine's story?

Share your story, too!

Josh’s Stage 4B Hodgkin’s Lymphoma Story

Post author By Alexis Moberger
Post date May 3, 2023
No Comments on Josh’s Stage 4B Hodgkin’s Lymphoma Story

Josh’s Stage 4B Hodgkin’s Lymphoma Story

May 3, 2023

Interviewed by:

Alexis Moberger

Josh was only 26 years old when he was diagnosed with 4B Hodgkin’s lymphoma.

After experiencing night sweats, fatigue, and an enlarged lymph node in his neck, Josh went to the Emergency Room. A lymph node biopsy and PET scan determined he had stage 4 Hodgkin’s lymphoma, with a subtype of nodular sclerosis.

Josh shares his journey, including processing the diagnosis, undergoing chemotherapy, and leaning on his support system.

Have your support system on standby at all times. There’s no way I could have done this by myself. Be educated; ask questions.

Name: Josh G.
Diagnosis (DX):
- Hodgkin’s lymphoma
- Nodular sclerosis
Staging: 4B
Age at DX: 26
1st Symptoms:
- Night sweats
- Fatigue
- Anemia
- Yellow skin (high bilirubin)
- Fever
- Weight loss
Tests & Scans:
- Lymph node biopsy
- Pulmonary function test
- PET scan
- Echocardiogram
- Bone marrow biopsy
Treatment:
- AAVD chemotherapy
  - Adcetris (brentuximab vedotin)
  - Adriamycin (doxorubicin)
  - Vinblastine
  - Dacarbazine
  - 12 rounds, once every 22 weeks

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table Of Contents

Pre-Diagnosis
The Diagnosis
Treatment
Remission and Recovery
Chemo Brain
Reflections

Pre-Diagnosis

Introduction to Josh

I’m from Maryland, and I’m a huge Orioles fan [and] Ravens fan. I love sports. It was one of the driving things that helped me go through the journey that I went through.

I cook in a restaurant, and I’m very passionate about cooking. I never thought when I was younger that I would be a cook of any sort. I really didn’t really think about anything like that.

I actually wanted to be a journalist basically my whole life, but that didn’t work out, so I just kind of stuck to cooking.

I play video games. I’m just like the normal dude that just likes to hang out with friends, sports, hang out with my wife, and all that type of stuff. So not too crazy. But, you know, I have a crazy story, so I figured I’d share it.

1st symptoms of Hodgkin’s lymphoma

On St. Patrick’s Day of last year, I woke up. I felt like I had a fever. I felt out of it. I didn’t feel very good. I felt just blah. I’ve had them plenty of times. Honestly, I thought I had COVID for a little bit.

I went to work, and then I took some medicine. A few hours later, I didn’t feel any better. Around that time, my wife — girlfriend at the time, my wife now — touched my shoulder and where I had my lymph node at, and she said, “What is that?”

I said, “I have no idea.” Obviously, I didn’t really think anything of it. It didn’t hurt. It didn’t cause any pain. But little did I know, my body was fighting something.

Night sweats were ridiculous. I was sweating through my shirt in the middle of the night, waking up drenched. The sheets were drenched. I had fevers that would top out at 100.4. Wouldn’t get any hotter than that, and then it would just move on.

Escalating symptoms

Then my anemia started. I would be ridiculously cold for a really long period of time. It was around 55 degrees outside, and I was like frozen solid.

I had to sit in front of a space heater, and I was still freezing. I was like, “Something’s just not right.” I kind of just put it under stress, and I thought I was anemic. I recently bought my girlfriend an engagement ring. So I thought it was stress.

I chalked it up to that, as probably most men do because they’re scared to face the reality that something’s wrong. They think they’re all mighty. I did. I thought I would be invincible at 26. I didn’t think it was cancer.

All those things kind of boiled up. We were at a party, and I have a few friends that were nurses. They realized that I was a little yellow. That was because my bilirubin was so high. My liver was affected by this as well.

I thought I would be invincible at 26. I didn’t think it was cancer.

How long did you have the swollen lymph node?

I would say it was probably close to a month. It sounds crazy now thinking about it, but I just didn’t think it was anything. I really didn’t. I only didn’t think that because it didn’t hurt. The symptoms of lymphoma were so subtle, and they weren’t very telling.

I mean, I [have] sweat at night my whole life. I just get hot at night. I didn’t think anything of it. My dog sleeps right next to me. He’s like a furnace. So I just thought it was nothing out of the ordinary. I just thought it was stress.

Then days leading up to finding out, I started to feel pretty good. I didn’t think anything of it. I just started sleeping better. I tried to take care of myself better.

I had a lymph node pushing on my trachea. Any time I did exertion of any sort, I would have to take a step back. I honestly thought I was developing asthma or something. I [was] just making excuses after excuses.

I would have to catch my [breath]. I thought, “Something’s just not right.”

The Diagnosis

Finding out it was Hodgkin’s lymphoma

My girlfriend saw a TikTok of a guy that had a lymph node in his neck. It scared her because I had all the symptoms he had.

On Easter, I saw my sister [who is a nurse]. She recommended that I come up to her hospital, Hartford Memorial. I got blood tests [and] a CT scan. I had a feeling they knew something was up, but they couldn’t tell me.

CT scans showed that I had a lymph node in my neck, and in my chest, and my spleen was enlarged greatly. The ER doctor said it was a huge possibility that I had lymphoma.

He didn’t specify whether it was Hodgkin’s or non-Hodgkin’s because I didn’t have a biopsy done. I just had a blood test and a CT scan. From that point on, we kind of hit the ground running and didn’t look back.

How did you react to the diagnosis?

When I was fully diagnosed, I had an inclination that this was a possibility. I wasn’t shocked. When I first was told, my first questions were, “I have cancer?” That was it. I didn’t think anything of it other than, “Holy hell.”

Then I saw my girlfriend. She put her head in her hands [and] started crying. I thought to myself, “That can’t happen again.” I tried to be strong and make sure that she never felt like that.

It’s a crazy story because my nurse — my sister was my nurse, too. When she got in the room, I knew something was up. There was no reason why she would walk into the room with the ER doctor and have that look on her face. It spoke a thousand words.

The day after we hit up all these different oncologists. I’m very thankful that my in-laws work for Mercy Hospital in Maryland, and they helped me tremendously, getting me in the right places and the right doctors and meeting the doctor that did my biopsy not even a week later.

Focusing on getting healthy

On May 5th, I met with my oncologist, and he told me that I had nodular sclerosis, Hodgkin’s lymphoma.

I didn’t really have time to process anything. Everything was moving so fast, and you really only have one job. [Your job] is just to survive and just hope that every single chemo treatment goes well and you don’t have any complications.

You just put your foot forward, and you just put your head down. You get to work. Really, that’s all I thought about. Nothing mattered other than just trying to get healthy.

[Your job] is just to survive and just hope that every single chemo treatment goes well.

Have you processed your cancer journey now?

I would definitely say the process is still going on. [I’m] just thinking, “Man, I had cancer. That’s crazy.” I’m a pretty even-keeled, happy-go-lucky person.

I make jokes about what I went through. People call me bald. I don’t really care. I’m just that type of person.

I’m not a cancer or oncology patient first. I’m Josh. That’s who I am. I just went through a really tough thing.

I think a lot of people would say the same thing, that they’re not that. I don’t think they want to be remembered as that. I don’t want to speak for other people, but personally, I’m just me.

Appreciating the relationships that grew from the experience

If I had never been diagnosed with cancer, I don’t think I would have the relationships I have. Don’t get me wrong, I don’t wish I ever had it, but the silver lining in all of it is the relationship and the trust I have with people. There’s nothing else that I can get from that.

The bond I have with my wife now. We had to get married. Well, we were going to get engaged very prior to that. I don’t have the best insurance, so we had to get married pretty quickly.

That would never have happened that quickly, and my bond with her is something that will never be matched by anyone in this world forever. I think of all the good things that came of it instead of the bad things.

Treatment

What was your treatment plan?

The PET scan just determined I was stage 4. It was everywhere, really. My chest, my stomach, my neck, my liver, my spleen. It was in my bone marrow. It was in a lot of places, so I had to start pretty quickly after they got the PET scan results.

I [wasn’t] able to freeze my sperm. That was something they really wanted to do because chemo really destroys your sperm. I didn’t even have time to do that. I got the results on a Tuesday, and Thursday I was in chemo.

My regimen was AAVD. I know a lot of people get ABVD. My lungs weren’t affected by anything, so my oncologist didn’t feel like bleomycin was necessary. I know a lot of people would drop that halfway through after the PET scan.

I had the Red Devil, which was the worst thing ever. I hear about it, and I did some research and had no idea what was to come of it. That’s why I’m still a little bald.

»MORE: Read patient experiences with doxorubicin (Adriamycin) chemo

May 19th was the first day of my treatment, and it was scary. I was going into a chemo ward and was the youngest person in there by 50 years. There are not many people my age that are diagnosed with cancer, and I didn’t really know where to begin when I walked in there.

You have your oncology nurse, you get your blood tested, and then you have to wait a few hours, and they hit you with a bunch of different drugs and medicine like that. You don’t really know what to expect.

I didn’t really have anyone to talk to going into this because I don’t really know anyone that had cancer, let alone Hodgkin’s lymphoma, because all different cancers and treatments are different. I really didn’t know what to do.

1st chemotherapy treatment

The first treatment was phenomenal. That was kind of like the telltale sign that things were going to look up. They tested my blood every single time I went, and they made sure I came back the next day just to make sure I didn’t develop anything else.

[I] went to check my iron levels and all that stuff because I was white as a ghost when I left the first treatment because it destroyed me. I had a good feeling that everything was going to work out pretty early because I saw my blood balancing out.

There are LDH tests that show how chemo is working. It was so incredibly high, and then it was basically cut in half after the first two treatments. I was very fortunate to have very quick results fast, and it helped me power through for the rest of the time.

What side effects did you have?

I definitely was nauseous a few days after. I was also given a Neulasta shot that would improve my white blood cells, which was insane bone pain.

I definitely developed neuropathy in my fingers and toes. My toes and my hands, I still deal with that. But, you know, if there’s one trade-off, I guess I’ll deal with a little bit of tingling.

Then I lost my hair after the second treatment. As I was leaving the parking garage, I rubbed my hand around across my face, and I was already losing facial hair. It was that quick.

I was very tired, very bleh. After 9 to 10 days, I was starting to feel better. I was like, okay, chemo was really insane, but you just got to power through it, and you’ll be better.

You’ll have your good days, and when you have your good days, you do stuff. You just try to get out, take walks, drink a lot of water, [and] make sure you’re hydrated. Towards the end was really, really difficult. Even picking my head up was hard.

I couldn’t get out of bed sometimes. I never wanted to do anything. My energy levels were low. I would just say the energy levels and the nausea were really the main concern for me, other than the hair loss and the Neulasta shot that I was given.

»MORE: Cancer patients share their treatment side effects

What helped with the side effects?

I was actually given Claritin to help with bone pain. When I tell people that, they look at me like I have three heads. ‘Allergy medicine helps with bone pain?’ Yeah, it does. I have no idea why, and I don’t think anyone really questions it.

Medical marijuana in my state is legal, and I used that a lot to help with some of the pain and nausea. It would help me eat. I did drop a lot of weight, around 30 or 40 pounds. At least I’d just nibble on some stuff [and] drink some water.

I was fortunate enough that I had a lot of pain meds [and] nausea meds. From chemotherapy, I don’t think I ever puked. I think it was maybe self-induced maybe. Constipation would be the worst thing I can really remember I went through.

Having little energy toward the end of treatment

Other than the side effects, I was very fortunate in the beginning. As I said, towards the end, it was very difficult to almost do anything. I was in bed by 8 p.m. My wife would help me up and down the stairs. She would bathe me and clothe me.

I remember there was a time I was taking a walk, I saw my house, and I just stood there for 10 minutes because I couldn’t walk anymore. I was like, “I don’t care. I’ll stand right here. I don’t care. I just don’t have the energy to move or do anything.” So I sat there on the curb, and when I got the energy, I moved on.

The only thing I wanted to do is get better.

Adjusting to life with cancer treatment side effects

Everyone was understanding. I never felt pressure to do anything I didn’t want to or couldn’t do.

I had so much help. Everyone was willing to do anything for me, and I’m forever grateful for that. I would never feel bad for missing out on things. I was going through the worst time of my life.

I was in [one of my best friend’s] wedding. It was a day after one of my last chemo treatments, and all my friends did everything they could do for me. [I have] a picture [of] them basically putting a tie on me, and it was a beautiful picture that they caught. I just was forever grateful for that.

It was easy to do stuff on the good days because that’s all I wanted to do — get out and hang out with people.

Being in the same four walls every day for the last six months was annoying, but it is what it is. I didn’t have FOMO, fear of missing out on stuff. The only thing I wanted to do is get better.

Needing support

Getting around was very easy. I have a group of friends and family that were willing to do anything at the drop of a hat for me.

I don’t really remember much of the days because I was on so many pain medicines and drugs, but I knew I was there. All I kept telling them was, “Just get me there, and I’ll be there.”

Put a chair there [and] have someone stand next to me just in case. My balance wasn’t always great; it was the neuropathy and all that stuff. So I was like, “Just get me there. That’s all I need you to do, and I’ll figure it out. I always tend to.” That was just the thing I was thinking about.

What was your reaction to the treatment going well?

I was told this was a very curable disease from the get-go. That was embedded in my mind. Hodgkin’s lymphoma is a blood cancer. My oncology nurse told me that when the chemo is injected in my port, it goes right into my bloodstream and basically hits the cancer cells head-on and eliminates them almost immediately.

Hodgkin’s is very curable. Unfortunately, there’s not a lot like this. The percentage rates are very high, even in stage 4. My oncologist said, “Stage 4 Hodgkin’s isn’t stage 4 lung cancer.” It’s just not even comparable.

I had that mindset that it was very curable at the get-go, so I was ready to fight immediately with all the confidence in me. When I started to see it work — I loosened up, but I kept my gates up because I just didn’t know what could happen.

Finishing cancer treatment

You never know. You [could] become refractory towards it. It could stop working.

It fueled me just to finish this out. Twelve rounds of chemotherapy was awful. It was every two weeks. But I knew at the end of the tunnel, it was going to be worth it

I knew everything I worked for was going to be worth it, and I just wanted to get back to what I was doing before I was diagnosed with Hodgkin’s. I just wanted to keep fighting. I read success stories. That’s why I wanted to share my story.

I would read The Patient Story, and I would see these amazing stories of these people. After I found out I was 4B, I read the stage 4s because I couldn’t really relate to the stage 2s because it was in a different spot.

I didn’t know anything about Hodgkin’s. I was pretty far behind everyone else. So I was like, “Okay, how crazy is this going to be?”

Remission and Recovery

What it was like to reach remission

The treatments worked, and by August I was in remission. They just couldn’t tell me that because God forbid something happened and it came back as I was getting treatment. So I just had to keep going, and I didn’t have any metabolic activity in my body.

Telling everyone that was awesome. They were so happy, and it was cool. I was ecstatic to find out that it was working, but I always knew you can’t stop. You’ve got to keep going. You got to put your head down and just finish strong.

My wife made sure I was drinking water, eating what I had to. You can’t get lackadaisical because it will take you. It will take you.

I would read The Patient Story, and I would see these amazing stories of these people.

Do you experience scanxiety?

Yeah, for sure. I’m in the process of getting scanned every few months now for the first year, or the next two years and three or five years.

I have a scan coming up in a month, and my oncologist was telling me, “Hey, don’t live around the scan. Just live your life, do what you need to do, and then figure that out when that day comes because there’s nothing you can do.”

Even if there was anything, there are still a lot of different tests that you have to go through. Having an oncology appointment is scary no matter when it is and what it’s about.

»MORE: Patients describe dealing with scanxiety and waiting for results

But I’ve been very fortunate to have some of the best doctors ever, and Maryland is known to have great doctors. We have great hospitals here.

I definitely will have scanxiety. I know it’s going to come like a week before. I know it’s going to happen. So I try to take Ativan [to] help calm me down. It helps stop my thoughts from racing and comprehend everything.

You can’t help anything. You just got to be there. Scanxiety, for sure, is going to be a thing for me six months to a year to two years. It’s already kind of happened.

Feeling confident for the future

I have the best doctors, and if anything was to happen, I know I would be able to beat it again. I feel very confident and I would feel even better if nothing ever happened. I would be even more ecstatic.

You can’t help it. I couldn’t stop myself from getting cancer. I don’t know if I can stop myself from getting it again, but I put my foot forward and do what I’m asked.

What was it like telling your family and friends that you went into remission?

It was euphoric. It was better to tell them than when I was told. I got a scan on Wednesday, and the next day — because it takes a few days for the radiologist to read it — I was on the phone with [them], and I put it on speaker.

My wife was in the room and she started crying, and I started crying. Then I just told everybody. I texted everybody, and I called my dad and my mom. They were happy. They were ecstatic. They were so happy for me.

My father just wanted a good scan. He didn’t think it was going to be the greatest scan. He was excited, and he calls me his hero. Hearing those things about how I inspire people, it’s really nice to hear because I wouldn’t be able to do those things without them.

When I got the final call in November that I was in remission, everyone was so happy. Looking back on it, having all the help from those people, I knew how sincere it was.

What has it been like to get back to your life after cancer?

I would say I’m shocked myself because from where I was back in October when I finished, I would never think I’m here now in February, working five days a week, exercising, and doing what I was doing before. I feel healthy. I feel great. I don’t have many setbacks.

My energy levels are pretty good for the most part, I would say. When I first started to get back to work, I couldn’t really finish a shift. I work in a restaurant, so I’m on my feet very, very often. But now I’m ready to go. I feel great.

I try to live in the moment because I know the next day might be a little bit more tiring because that’s how I felt when I was going through treatment. I wouldn’t get tired doing a task. It would be the next day. I would be like, “Wow, I’m just exhausted.”

I look at that, and I’m feeling pretty good. I don’t overdo it. I don’t really try to do anything crazy on my days off. I hang out at my house and recuperate and try to regroup because I know [the] next five days I probably have to work.

I feel very great. I feel healthy. Very fortunate of how everything worked out and transpired because I was told that it would take a year for me to get back to where I was.

Not pushing yourself to progress faster

I’m not a very pushy person. I think if I was younger, I would for sure think, “Wow, I’m missing out on so many things. I need to make this a fast track. This is just annoying and bogus.”

I’ve tried to stay calm and allow the process to play out. I’m not going anywhere, so I don’t have to really push myself. I don’t have to prove anything to anybody because what I just went through is enough in my eyes.

When I get tired, I lay down. I don’t care. I’m not going to push myself. I want to relax. I felt like one of the things I took seriously is listening to myself. You have no reason to push yourself because you’ve already pushed yourself to the limits.

Going through treatment — honestly, 10, 11, 12, the last three treatments were awful because I knew I was good. Doing those things just made me into a person that [realizes] no one’s going to do it for me. I didn’t have a choice.

I was only 26. I can’t let this take me, and I just put my head down. When I get tired or I get exhausted, I think about how tired I was back then, and it doesn’t compare to it. I allow my thoughts to process and everything to play out before I make any decisions.

Chemo Brain

What is chemo brain?

Chemo brain is for sure a thing. It’s cloudiness. One of the very first moments I remember having chemo brain, my buddy was over with his girlfriend.

We were eating dinner. We were talking, and I looked right at him and couldn’t think of his name. And I’ve said his name a million times, and it’s like, “I know who you are, but I just can’t say your name.”

The fogginess of chemo brain and being able to remember things and process things a lot slower than people. Trying to think of the right word to say, too.

Thinking of what to say quickly and respond quickly is difficult sometimes. It’s definitely something that you have to deal with.

When you’re going through treatment, you kind of have to play those mind games. You have to do word puzzles to get your mind going. You can’t stay stagnant because you’re just going to kind of rot.

I was always told [to] do crossword puzzles or write things down. It makes you so cloudy and foggy, and you just forget things very quickly. I have my wife just remember, like, “Hey, what did I do? What did I say?”

Cognitive changes after chemotherapy

It gets better, but it’s definitely something that you have to deal with. You’re kind of embarrassed because you don’t want to seem stupid. You don’t want to seem dumb. You forget things to say or the right word to say.

For example, I cook in a restaurant. When I look at a line of tickets, it’s kind of hard to process everything that’s going on. The bullets are flying, but it’s kind of hard to be like, “I got to do this.” Then you kind of forget about it, and you kind of keep looking.

It takes just longer to process things. Keep on your toes when you’re going through treatment. Keep your brain going. Don’t sit there and watch TV all day. Try to keep your brain working.

Chemo brain is definitely something that’s difficult to explain. You don’t need to be embarrassed because it’s definitely a thing. You just don’t want to sound silly when you’re speaking.

What did you think of chemo brain before you experienced it?

My initial thoughts were more of it might be a fogginess, maybe a little forgetfulness. I never thought I would forget my best friend’s name. That wasn’t something I would think about.

I thought I would just be cloudy or not be able to remember certain things. It’s still a thing.

When you’re going through [cancer treatment], make sure someone’s with you, write things down or even record it. You can always go back to it because you can’t alter a recording if you have it all written or recorded. You might forget things.

Chemo brain is a really huge thing. I think it’s not really spoken about or talked about, because going through treatment, yeah, it is a thing, but when you’re out of it… I’ve been [done] three months, and it’s still a little difficult trying to comprehend everything that’s thrown at me.

Difficulty writing and texting

It’s almost embarrassing to track back, but you just have to buckle down [and] think about it. I mentioned to my friends when I’m writing something down, I have to think about it really hard.

For a normal person that didn’t go through chemo, you don’t think about it. You just do it because it’s something you’ve been doing since you were a kid in school, which is writing things down. Now you [have] to think about how you’re writing and what you’re writing about.

Texting is very difficult. I have to read the text like three or four times before I send it so I don’t sound illiterate. It’s very hard and difficult. It’s like what I was saying in my head is what I wanted to say, but it just didn’t come out that way.

Advice for dealing with chemo brain

Keeping up with things. Don’t let yourself rot. Keep yourself active as much as you possibly can, because there are a lot of things you don’t want to do.

You’re not going to want to do really anything. You’re going to want to sit there and sleep. When you can, just get to it. Read an article, do a crossword puzzle, and write your thoughts down.

You might forget how you feel, or how you might [remember], “Hey, this was my symptom.” For my chemo brain, I’m not going to remember how I felt two weeks ago from a pain med or drug.

I write things down so I can refer back to it. Writing things down is a huge, huge tool for someone that might have chemo brain.

It’s just another battle that you’re going through when you’re trying to live your life and trying to survive, really. So I think just having someone around you, helping you process it, because I think chemo messes with you from your head to your toes.

Writing things down is a huge, huge tool for someone that might have chemo brain.

Emotional effects of chemo brain

It makes you emotional and makes you upset. It makes you mean; it makes you happy. It just messes with everything, so your feelings are just out of whack. Having someone around to kind of validate and try to settle you down helps, for sure.

Chemo brain doesn’t only affect your comprehension, but it also messes with your emotions. You could be running hot one day. You could be really sad one day. You can be really happy one day.

So just having someone around you be like, “Okay, the situation isn’t as bad as you think it is right now.” Just relax, take a deep breath, and allow the process to kind of play itself out.

If there’s anything happening, you hit up your oncologist or your nurse practitioner or whoever you need to. Reach out to them immediately if you find something wrong because your brain plays games with you when you’re going through this.

Every pain, every bump, every bruise, you’re like, “What is this? What is that?” The brain plays games on you. I know it’s hard for people to have 24/7. I was fortunate my wife worked from home, and she took care of me every day.

Every second she sacrificed, and she definitely helped me navigate through that mental part of everything. Have someone around you at all times. It really helps you.

Reflections

Importance of a support system

Have a support system. Really, you have to. You can’t get through this by yourself. Even if you think you can, you just can’t. It’s not fair to you. It’s not fair to other people.

I think being a man, we have our gates up. We’re protective of ourselves, and we try to not let people in. And you don’t want help. You don’t want to be given things because you’re going through something.

You don’t want to say, “Oh, I have cancer, so you have to do this for me.” It’s way bigger than you. People want to help you, so allow people in.

In the beginning, I was a little wary because I didn’t want to disappoint anybody. I didn’t want my parents to see me bald. I didn’t want them to see me 40 pounds lighter than I was. I didn’t want them to see how tired I am.

But at the end of the day, they want to help me. They’re my parents, or they’re my friends or family. Letting people in is something that you should allow people to do because you can’t do this by yourself. It’s unfair to you and to them.

Just take it one treatment at a time, one day at a time.

Letting your support system help you

Allowing others to do things like pick up groceries or help cook dinner, bring food over. The simplistic things that can really help you get through it. It’s a long process. It’s a long journey that you’re going to have to go through.

Six months was a long time. It felt like an eternity. But having my friends and family come over almost every other day, basically, [helped]. I had a set schedule for a little bit. My mom [would] come over on Wednesday; my dad [would] come over on Tuesday.

I watch baseball every night, and have an outlet really for something that happened. I’m a huge Orioles fan, so looking forward to 7 p.m. baseball games was the best thing ever for me.

It was something that was an outlet for me just to kind of look forward to. Find an outlet and let people in. Let them help you. You might think you’re a macho man, but you’re not.

Reframing treatment timeline

There’s nothing in this world that will prepare you for this, but take every day at a time. One day at a time. And I think that really helped me towards the end because you’re thinking, “Man, I got 60 days left in treatment. This sucks.”

It’s an unstoppable number to even think about. You have to go through 60 more days. So another thing I would think about is just think about one treatment at a time. Like, “Okay, I got five days until my next treatment. Four days until my next treatment.”

That’s one more down, and then the clock resets. I would get my Neulasta shot a day after chemo. It had to be 24 hours after, and my wife would be like, “All right, 13 days till you got to see these guys again.”

Just like that. You got 13 days to recuperate and kind of stay on your P’s and Q’s and stay hydrated. Don’t think of it as 60 days. Just take it one treatment at a time, one day at a time.

What advice do you have for patients and caregivers?

I would say have your support system on standby at all times. There’s no way I could have done this by myself. Be educated; ask questions. Make sure somebody is there with you during oncology appointments because there are so many things flying at you, you don’t even know what’s going on.

You just kind of take bits and pieces of what your oncologist said. You’re going to be very forgetful.

Chemo brain is a huge thing. That’s another thing I struggled with. Just maybe counting or reading things in large portions is difficult for me trying to comprehend stuff. It’s not the easiest thing in the world.

Having people around you to help you process things at appointments and stuff. Have an outlet. Try to find a support group. I was part of a support group via Facebook and in real life, just to talk about things.

One thing I’ve really realized [is] it’s hard for people to even talk about that haven’t gone through this. It’s like you can’t relate. You can’t get to their level. They won’t get to your level.

You go through this thing during chemo. You turn into a different person. You’re not happy. You’re not joyful. You’re kind of mean. You’re kind of an SOB. It is what it is, and you’re just trying to find an outlet.

Reaching out to people to try to find your space. Really try to find your space, and they will validate your feelings. I was part of a support group for people that unfortunately lost people.

Again, I was the youngest person in this little support group. Then they helped me. They let me validate my feelings, and they were like, “This is all normal.” It was headed by an oncology nurse, and she said, “Yeah, this is normal.”

She put me in contact with this guy that I would consider a friend, and I never met him. He helped me because he was going through treatment, and he ended right before me. He’s in remission. He’s doing great.

I’d ask, “Hey, man, did you go through this? What did you do for that? Is there anything I should be doing? Is there anything I shouldn’t be doing? How was your port removal? How was your final PET-CT? How does all that work?”

I wasn’t too sure about anything. After treatment, did you have to wait a month for your final results? Because I didn’t know that. I mean, it makes sense now. But just kind of having a support system. Read. Educate.

I went to The Patient Story. I found a bunch of awesome stories, and it helped me. It let me feel like, “Okay, this is normal.” I read someone’s [story] that said brushing her teeth was hard. Okay, that’s something to be wary about. Putting baking powder and Epsom salt and water for a bath to help your bone pain and nausea worked out. I read that, too.

When I read all that stuff, I was like, “This is the first thing I want to do after I’m good to go. I want to reach out to this website or these people, and I just want to tell my story because of how much it helped me. I want to help somebody that’s my age or whoever that’s just so scared and has no idea what to do.”

Follow Josh’s story at @Joshthesquash2 (Instagram), @Joshthesquash2 (Twitter), and @Reviewguy2 (TikTok)

Inspired by Josh's story?

Share your story, too!

More Hodgkin’s Lymphoma Stories

Lia S., Nodular Sclerosis, Stage 4A

Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms: Extreme lower back pain
Treatment: ABVD chemotherapy
...

Non-Seminoma Patient Stories Testicular Cancer Uncategorized

Steven’s Stage 2B Non-Seminoma Testicular Cancer Story

Post author By Alexis Moberger
Post date April 19, 2023
1 Comment on Steven’s Stage 2B Non-Seminoma Testicular Cancer Story

April 19, 2023

Steven’s Stage 2B Non-Seminoma Testicular Cancer Story

Interviewed by:

Alexis Moberger

As a 21-year-old, Steven put off getting examined by a doctor when he noticed changes in his testicle. Three years later, he knew something was wrong when he noticed a lump in his back.

Today, Steven is a survivor and board member of the Testicular Cancer Awareness Foundation who’s made it his mission to spread awareness through his podcast “It Takes Balls.”

Steven shares his story about being diagnosed with testicular cancer, and undergoing an orchiectomy, chemo, and RPLND surgery to help those like him.

Name: Steven C.
Diagnosis (DX):
- Testicular Cancer
  - Non-Seminoma
Staging: 2B
Age at DX: 24
Symptoms:
- Enlarged left testicle
- Tenderness in left testicle
- Lump in back (retroperitoneum)
Treatment:
- Orchiectomy
  - Removal of left testicle
- Chemo
  - 4X EP (4 rounds of etoposide and cisplatin)
- Retroperitoneal lymph node dissection (RPLND)
  - Lymph node removal in the back of the abdomen

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table Of Contents

First Symptoms
Testing & Diagnosis
Orchiectomy Surgery
Chemo & RPLND Surgery
Spreading Awareness
Testicular Cancer & Fertility
Reflections

First Symptoms

Tell us about yourself

I’m Steven. I live in Virginia Beach, Virginia. I’ve lived here my whole life.

I’m 28 years old, I went to school for media production, and I have a podcast for testicular cancer awareness that I do full-time.

I like to golf because, as you know, I like to lose balls as often as I can.

When did your first testicular cancer symptoms occur?

I don’t know the exact date that things started – I know it was sometime in 2016. I noticed that my left testicle was getting increasingly tender and slowly getting bigger.

The girl I was dating at the time really wanted me to go to the doctor because her dad had passed away from esophageal cancer. She said, had he been checked out earlier, he might have been able to live longer. I said I don’t want to hear the “C” word. Despite saying that, I was still doing Dr. Google. I kept seeing testicular cancer come up and I just did not want to go to the doctor and find out that that was the case, so I put it off.

It never got massive. You hear stories about people who have grapefruit-sized testicles. Luckily, that was not me. I probably would have been seen sooner if it was.

Steve C. testicular cancer awareness foundation board member

I said I don’t want to hear the “C” word. Despite saying that, I was still doing Dr. Google. I kept seeing testicular cancer come up and I just did not want to go to the doctor and find out that that was the case, so I put it off.

What made you decide to see a doctor?

In the spring of 2019, I noticed a lump in my back. I was driving home from work and I felt like my shirt was bunched up. I reached back to fix it and it wasn’t my shirt. I knew from looking at the Internet on Dr. Google and peripherally seeing these things that when it spreads, it spreads to the back or the retroperitoneum. That was when I knew that I needed to be seen because I knew that something was going on.

How old were you when you experienced your first symptoms?

I would have been 21 and then turned 22, depending on what time of year it was. Age never was a factor for me. It was more of I didn’t want to hear the word, so I kept putting it off and was trying to avoid it at all costs.

Did you feel any pain with your symptoms?

I wouldn’t say it was pain as much as it was discomfort. It was not something that I had been used to before.

Testing & Diagnosis

Getting examined and tested

I went to my primary care physician and she did a testicular exam. She said, “I do feel a little hardness in the back. It might be epididymis.” She gave me antibiotics for that but she said, “Just to be safe, I’m going to order an ultrasound.”

That was May 31st of 2019. I remember that day because there was a mass shooting at Virginia Beach’s courthouse and it was a big day for the city and me personally.

The urologist walked in the door and immediately said, “9 times out of 10, when we find a mass like this, it’s testicular cancer.

What were the results of your ultrasound?

My production company was having its meeting for the biggest job that we had had to date. My doctor called me when I was in that meeting and she said, “Steven, they found a mass. I’m going to refer you to urology.”

I went to the urologist on June 10th. I had just turned 25 on the 7th. The urologist walked in the door and immediately said, “9 times out of 10, when we find a mass like this, it’s testicular cancer. I have an opening tomorrow at noon. If your insurance is accepted at the hospital where I’m going to be tomorrow, I can take it out tomorrow.” Then as a formality, he did the blood work for the tumor markers and scheduled the orchiectomy.

What were you feeling when you received your results?

From then until now, I think I still feel numb to it. As a survivor, recurrence is one of the things that everybody is afraid of. I just recently had another ultrasound because I thought I was having pain in my remaining testicle. When they were doing it, they asked, “Does that hurt?” I said, “It doesn’t hurt, but it doesn’t not hurt.” I think I’m just numb to the feeling and have PTSD.

Orchiectomy Surgery

Describe your orchiectomy surgery

The orchiectomy is the removal of the testicle. [My doctor] didn’t really go over what the surgery would entail or what it would look like, but they cut in your pubic area, not in your scrotum, and they pull the testicle out that way. It was a pretty easy surgery. I mean, he was the one doing it. I was just laying there asleep. He said it was going to be 30 minutes, so it was outpatient. It was probably a week of recovery.

Did they tell you your diagnosis before or after the surgery?

As I said, when he came in, he said “9 times out of 10 it’s testicular cancer,” but they don’t know for sure until they pathologize it. I don’t remember the exact breakdown.

I know that the Urology of Virginia did their pathology and then we sent it to Sloan Kettering and they came back with close but not exact, which, could just be they were looking at a different sample of it, but it was non-seminoma. That means it was a mixed type of cancer.

Turning a negative into a positive

I’ve always tried to turn negatives into positives. I knew that I wanted to make it my mission to not be down in the dumps about it and to spread awareness.

I never talked about testicles before my diagnosis and since then I’ve talked about it more than people are comfortable hearing. I just knew that I wanted to spread the word and use my story, however far my story went, to spread awareness.

I’ve always tried to turn negatives into positives. I knew that I wanted to make it my mission to not be down in the dumps about it and to spread awareness.

How and when did you start spreading awareness about testicular cancer?

I think it was the first time I went to my oncologist and he said, “This is something that’s not really talked about.” I did a vlog 17 days after my orchiectomy, I went go-karting, and we talked about that. He said, “If you keep up those vlogs, then people might find it and start talking about it.” So I did that.

I wanted to shave my head on my own accord before I lost it from chemo. I did a fundraiser for the Testicular Cancer Awareness Foundation and had connections to one of my action sports heroes, Travis Pastrana, through a mutual friend. I said, “If I raise X amount of dollars, will Travis shave my head?” He’s up in Annapolis, Maryland so it wasn’t a far drive. He agreed. I think I raised 2 or 3 times the amount in just a couple of hours. So we went up to Maryland and he shaved my head.

Smagical and Travis Pastrana shaving Steven C.'s head before chemo

Smagical and Travis Pastrana preparing to shave Steven C.'s head before chemo

Steven C. with Smagical and Travis Pastrana

That got Testicular Cancer Awareness Foundation, Kim Jones the president. We formed a relationship from that. In survivorship, I’ve been on the board of the Testicular Cancer Awareness Foundation and now do a podcast, so it’s been fun.

Chemo & RPLND Surgery

Starting chemo

Because of the mass in my retroperitoneum, I had to do four rounds of etoposide and cisplatin, which is known as 4 times EP. It was 1 week on, 2 or 3 weeks off (depending on my white blood cell counts), another week, and then a break. So I had chemo from July 15th to October 4th.

Before chemo started, they do the chemo debriefing or chemo teaching. They went over everything that could happen. After the first week, I thought, “That was not anything near what they had talked about. It wasn’t nearly that bad.” But they did say that it compounded.

Steven giving a thumb's up on his last day of chemotherapy

Did you have side effects from chemo?

Each week that went on got tougher and tougher. The first week, the first side effect that I had was uncontrollable hiccups. I tried drinking water, I tried everything that I could find [to get rid of the hiccups]. I found on Google, if you drink water from the opposite side of the cup, that it would work. I don’t know if that’s what did it but they stopped after that.

I didn’t throw up until the last week. I remember I was in my kitchen. My parents took turns staying with me. One stayed at their house with the dog and the other came over to my place. I was reaching into my fridge and I immediately turned around and just threw up everywhere. My dad said, “Don’t worry about it. I’ll clean it up.”

Did you take anything for nausea?

I was nauseous the whole time. They advised taking the Zofran that they prescribed me. I took it in the morning, I took it at night and then whatever they gave me daily, helped with nausea.

»MORE: Managing Nausea and Vomiting from Chemotherapy

Post-chemo RPLND surgery

After chemo, I had a post-chemo CT scan and it showed that the mass in my retroperitoneum had shrunk, but it wasn’t small enough to completely rule out that everything was gone.

My doctor was Dr. Clint Cary at Indiana University (IU), who’s one of the top guys in the United States for retroperitoneal lymph node dissection (RPLND). They got me on the schedule at IU for the RPLND, and I had an RPLND on November 7th, 2019.

Luckily, Dr. Cary called me with the pathology and said what was remaining was scar tissue from dead cancer. There’s no way to know until it’s pathologized. I’m not a doctor, but I believe that teratoma does not show up in bloodwork. So they could have done all the bloodwork that they wanted and they wouldn’t have known that it was scar tissue.

How did you respond to needing another surgery?

I wanted it to be done and I trusted my doctors. I told Dr. Cary before my surgery, “I’m just going to lay here and let you do the hard work.” I was just along for the ride.

I was very thankful to my parents. I was still 25, so I was on their insurance. They did the brunt of the worrying for me and I just rode the roller coaster.

Spreading Awareness

Having a support system

Support is crucial to this, however you can get it. Unfortunately, some people with testicular cancer don’t have the family that they should have with them, because of family issues.

I’m super thankful that my parents, grandparents, aunts and uncles, and all my work people put up with me talking about my testicles the whole time. Them being a sounding board for whatever dark humor I had and being able to do the worrying for me made the journey a lot easier for me.

Stevene preparing to shave his friend's head

Steven shares about the importance of having a cancer support system

Steven's friend Blake shaves his head as a sign of support toward testicular cancer diagnosis

Support is crucial to this, however you can get it.

How did your work respond to your having cancer?

I’d been through chemo and my work was super supportive. Everybody at work was really helpful. Right before my RPLND, I sent an email to HR to send out to everybody, thanking them for the support. I put in [the email], “Thanks for allowing me to joke about my testicular cancer.” They took out the word “testicular.”

Six months later when I returned, I emailed the HR lady and asked, “What’s up with that?” She said, “Some people could find it offensive.” I said, “I’m the one that had it, and I’m offended that you took it out.” People are still not talking about it as much as they should.

Luckily, on the ground level with all the other employees, it was something that they, hopefully, became more comfortable talking about. They were at least pity-laughing.

Empowering people to talk about testicular cancer

Steven and his mom on a plane to Indiana

I don’t know how many people are searching for testicles online. Maybe there are some people out there that are doing that, but I think the people who are finding podcasts are the ones who are searching specifically for testicular cancer.

There are some guys that don’t want to share their stories, and that’s okay. They can see that there are people talking about it and it’s not something they need to stay in the shadows about. Maybe one day they’ll feel comfortable talking about it, but right now is not the time. For them to see these stories, hear other people that have been through it, and know that they’re not alone, is important.

Do you still get “scanxiety”?

Scanxiety is a real thing. April is Testicular Cancer Awareness Month, and I like to say that I’m very aware. Even though I talk about testicular cancer all the time, April gets me. I really start feeling like, “Is that lump back in my back?” I think it’s just my mind playing tricks on me, but it’s important to get checked out if you feel things.

I just had another ultrasound last week and luckily it was all good, but it definitely messes with your head a lot. Before blood work, you get nervous.

I’m hypocritical in that I was feeling something for a while and it took me a while to get in. My mom and my wife were both really pushing me. That’s where the network around you is good too. Even if you’re feeling something, you’re still afraid and have PTSD, like I do, having those support people around you who can, say “You need to go get checked out. I’ll make your appointment for you.” I made my own appointment, I’m a big boy. But, that’s important.

Even though I talk about testicular cancer all the time, April gets me. I really start feeling like, “Is that lump back in my back?” I think it’s just my mind playing tricks on me, but it’s important to get checked out if you feel things.

What would you say to someone who hasn’t been examined by their doctor?

People who are at the beginning stage, feel something is wrong and haven’t yet been seen, I would say, go be seen. Worst case, the doctor feels your nuts and it’s an awkward situation for you. It might feel awkward to you, but it’s not for them. They do that all the time.

Early detection is going to save lives. It’s not going to save every life, but it’s going to save you from at least having further metastasis. You can catch it early. It won’t spread to the retroperitoneum, like me, if you catch it in the testicle. Early detection is really important and there are resources online to show how to do a self-exam.

Self-exam is not about finding something on the first try, but the goal is to familiarize yourself with what your normal is. Then, if you find something that is not normal, then you know right away that you have to go get seen.

Where can people learn more about testicular cancer?

TesticularCancerAwarenessFoundation.org is the website.
Testicular Cancer Awareness Foundation on Facebook.
@testescancer on Instagram and Twitter.
You can see the podcast, It Takes Balls, and regular self-exam reminders.

Supporting others and finding support

I have not been to therapy but I did have a therapist on the podcast recently and it’s definitely something that I’d be open to. My doctor gave me the contact information of other patients that he had. He asked them for their permission as well.

I reached out to one of them, but there have been other guys that he’s given me their numbers when they’ve been going through it, as I’m a survivor. We’ve got a local testicular cancer group chat that is going and we say, “We got a scan coming up.” “Good luck.” It’s important and it’s helpful.

Testicular Cancer & Fertility

Advocate for banking sperm as early as possible. Don’t let them start chemo before you bank sperm.

Banking sperm and checking testosterone levels

I don’t know that the norm is to bank sperm before orchiectomy. I know that they like to turn around and do the orchiectomy quickly. I would say, advocate for banking sperm as early as possible. Don’t let them start chemo before you bank sperm. If you can bank some before your orchiectomy, that could be helpful.

I don’t remember having my testosterone level checked before my orchiectomy, but testosterone is something that can be affected by losing a testicle. You only need one to make it, but the levels can change, and having that kind of base will be helpful in seeing if something’s off down the line. I think I only got mine checked a year and a half later, so I don’t have a baseline of what my normal was before that.

How did you decide to bank your sperm?

After the orchiectomy, they scheduled sperm banking. One doctor I talked to recently – his episode of the podcast will be out May 1st – he advocates for having it earlier. He said, in some cases, there’s no sperm before the orchiectomy because the testicle is doing whatever it’s doing. Definitely get it as soon as you can.

That was one of the things that were scariest for me – I’d always wanted to be the T-ball coach – and losing my hair were the big things that I was most afraid of. Banking was a no-brainer for me. Hopefully I don’t have to use it.

RPLND and fertility

There is a risk with the RPLND (retroperitoneal lymph node dissection) to have a side effect where they accidentally, or out of necessity, cut the nerve that controls the ejaculatory function. That can cause retrograde ejaculation, then it’s going to be more difficult to conceive naturally.

I hope I don’t need to use my bank sperm. I think everything is working as it should now, but we’ll see how it goes.

As far as the RPLND and the retrograde ejaculation go, I would advise going to, what they call, a high-volume center. There are only so many urologists in the world or in the country and there are only so many testicular cancer cases. Even fewer than there are urologists. They might not see testicular cancer all the time and [they] do an RPLND even less.

Steven and Dr. Cary of Indiana University

Where I went at IU, Dr. Cary is one of the best guys in the country to do it. It’s not a guarantee, but it’s more likely that they will do what they need to do to avoid retrograde ejaculation.

Reflections

Can you recommend doctors who specialize in testicular cancer?

On the TCF website, we have Dr. Phil Pierorazio – he’s chief of urology at Penn Presbyterian. His contact information is on the website. Dr. Nicholas Cost in Colorado – his information is on there.

Dr. Larry Einhorn at IU. I think he’s in his 80s now, but he pioneered chemo for testicular cancer and has saved an immeasurable number of lives. He’s usually pretty good about responding to emails. My mom emailed him a few times and asked questions and he gets back within 24 hours. His contact information, if it’s not on the website, join the support group and people will gladly give it to you.

There’s Dr. Aditya Bagrodia in San Diego. There are a bunch of them all over the country who do this stuff regularly.

How has testicular cancer changed your outlook on life?

There’s been so much good that’s come out of it. I’m doing things that I never would have done…I’m trying to live my life more to the fullest than I was before.

Having had testicular cancer, I don’t think it was the worst thing to ever happen to me. There’s been so much good that’s come out of it. I’m doing things that I never would have done. For example, I just took a stand-up comedy class. In high school, people who knew me never would have thought that I would do something like that.

There are good things that can come out of this. You have a new lease on life. After sitting in the chemo chair for 4 to 6 hours a day, you wish you could be doing anything else. I’m trying to live my life more to the fullest than I was before.

Testicular Cancer: What Patients Need to Know

Post author By Alexis Moberger
Post date April 4, 2023
No Comments on Testicular Cancer: What Patients Need to Know

Testicular Cancer: A Medical Oncologist Shares Everything You Need to Know

A conversation with Alok Tewari, MD, PhD

April 17, 2023

An estimated 9,910 new cases of testicular cancer cases were diagnosed in 2022 according to the National Cancer Institute. When thinking about prevention or a diagnosis, you likely have questions about causes, treatment, fertility, sex, and survival.

Dr. Alok Tewari is a medical oncologist at Dana-Farber Cancer Institute who specializes in cancers arising from the genitourinary tract like testicular cancer.

In this conversation, Dr. Tewari discusses the signs and symptoms of testicular cancer, how to do self-exams, diagnosis and treatment for testicular cancer, and potential risk factors. He shares candid insight into what it’s like to undergo surgery and how you can spot testicular cancer early.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
Signs & symptoms of testicular cancer
- How is testicular cancer typically detected?
Self-exam
- How do you do a self-exam for testicular cancer?
Diagnosis & treatment
Age group at risk for testicular cancer
Hereditary risk factors for testicular cancer
Other factors for testicular cancer
Challenges of testicular cancer
Testicular cancer awareness

The key point is as you’re cleaning yourself [and] notice any abnormalities anywhere on your body, you should always feel free to ask your doctor about it. It’s much safer just to ask them than not.
Dr. Alok Tewari

Interview by:

Alexis Moberger

Introduction

I’m a medical oncologist and I’ve been working at Dana-Farber since I started [my] fellowship in 2016. I gravitated towards GU (genitourinary) medical oncology because of [the] experiences I had during my training.

Signs & symptoms of testicular cancer

How is testicular cancer typically detected?

A minority of patients develop testicular discomfort and are found to have cancer. There [are] a lot of reasons you can have testicular pain and most of them are not related to testicular cancer, but every so often, that does happen.

There [are] a lot of different ways that patients get diagnosed with testicular cancer.

There [are] patients who are just doing a self-exam, even though that’s not clearly recommended as part of screening guidelines. Patients will be examining themselves in the shower and feel something abnormal or notice a change in size. That’ll get evaluated and the diagnosis will come about.

There are patients who notice something abnormal but think it’ll go away. Oftentimes, you can have inflammation in the area and that can definitely go away. But because of some taboo about talking about your genitals, [people] may not be so motivated to talk about it in general.

We do see some patients who present later when they have larger masses or have developed metastatic disease.

It does run the gamut. The key point is as you’re cleaning yourself [and] notice any abnormalities anywhere on your body, you should always feel free to ask your doctor about it. It’s much safer just to ask them than not.

A lot of times, there [aren’t] any clear symptoms. The minority of patients will present with some testicular pain; that’s actually not the most common way. The most common way that patients are diagnosed is that they notice something abnormal in size, a lump, or something like that.

If you start to feel abnormal — losing weight, developing pain, your GI or urinary function is not the same [as] it always was — then you get evaluated and it leads to a diagnosis of testicular cancer. There are a lot of other things that can cause those problems, but that’s another way.

It’s not always symptomatic. It’s okay to monitor and check yourself. It’s not the most sensitive or specific, but it can be helpful. If you notice anything abnormal, ask.

There’s no real relationship between having testicular pain, for example, and the presence of metastatic disease. If this is diagnosed because you’re having back pain or troubles related to your abdomen and it turns out to be testicular cancer, that probably is related to metastatic disease. But just testicular pain itself doesn’t mean anything.

Self-exam

How do you do a self-exam for testicular cancer?

There is not a clear recommendation from any organization, but if one were to be doing self-checks in the shower, which is the easiest time to do it, it’s not just washing the area.

It’s more of palpating your scrotum, actually feeling your testicles specifically — not too firmly to cause pain, but just making sure that there [are] no bumps or lumps, [and] that the size is similar to what you experienced before.

Testicles can often be different sizes; that’s not necessarily something. It’s more the change that you might wonder about.

orchiectomy testicle removal surgery — Cancer Research UK / Wikimedia Commons

Diagnosis & treatment

How is testicular cancer diagnosed?

The most common way it’s diagnosed is when you feel an abnormality, then an ultrasound is typically done. The ultrasound is a pretty good test for noticing some sort of abnormality that’s not typically there.

How is testicular cancer treated?

What will typically happen is you’ll have surgery where a urologic surgeon will make an incision in your groin area, roughly up near your inguinal canal, and will remove the testicle that way.

It’s a pretty well-tolerated surgery. You usually don’t stay in the hospital. You can have some soreness or numbness based on random factors, but most folks recover pretty well and pretty quickly. Oftentimes, that’s it.

You’ll have some scans [and] some labs done to make sure that there [are] no signs of spread. If there [are] no signs of spread, then you’ll be done. You’ll just have to have regular surveillance to make sure it doesn’t come back. Usually, after two years, the risk of it coming back is very small.

Sometimes, though, you either develop symptoms in your back or somewhere else that lead to this diagnosis. Unless things are a little bit unstable where you’re not feeling really well and there’s a need to start therapy, you’ll still have surgery and your testicle will still [be] removed; that helps us understand what we’re dealing with.

Depending on what you have at diagnosis and how much the spread has been, there [are] different therapies that could potentially be undertaken.

Age group at risk for testicular cancer

It definitely is a cancer that can affect patients of all ages. It’s just most common in the early teenage years to late 30s. It’s the most common cancer in young men, essentially.

However, there are patients much younger than their teenage years who get it. There are patients in their 70s who get it. It’s very uncommon at that age, but it does happen.

Hereditary risk factors for testicular cancer

If you have a family history of testicular cancer, that does slightly increase your risk above the average population so that’s the sort of thing that you should know about.

When you’re getting your health care, that should be something your doctor should know so they can tailor their physical exam appropriately. It’s something you can just be a little more aware of than you might otherwise be.

Other factors for testicular cancer

Geographical location

Nothing definitive. There was an increased incidence in northern countries, like Scandinavia especially, over the last several years for unclear reasons. That seems to have tapered off a little bit, but unexplained.

It’s not as common in places like Australia, for example, so something about the northern climate seems to be associated with it. There’s probably an environmental exposure component to it that we don’t understand.

Once you start to see enough patients, you’ll meet people [whose] friends have had testicular cancer. These are groups of patients that you can’t pinpoint anything, but it’s just something that we see sometimes.

Just because you have a friend who had testicular cancer doesn’t mean you’re going to have it, but there are these one-off associations that I don’t have enough data to draw a conclusive link on.

Can cell phones cause testicular cancer?

Those associations are hard, but there’s nothing that’s been shown.

I wouldn’t say that the incidence has increased drastically since people have been having cell phones over the last 10 to 15 years. Nothing clear in that respect.

I think there is a certain bias. You recall what you remember. If a friend had testicular cancer, all of a sudden you remember it because that’s a significant event and so we have a recall bias in that respect.

From a statistical perspective, there’s nothing clear, but we’re always trying to learn more.

Does testicular cancer affect sex and fertility?

The process that leads to the development of testicular cancer certainly seems to be related [to] decreased fertility relative to the average population. We know that patients who are diagnosed with testicular cancer can have more trouble than average with conception and fertility.

The usual thing to do is to discuss sperm banking even before having surgery. There [is] a very small set of patients who won’t have normal sperm production and so trying to sperm bank even before surgery is something that can be considered. We definitely recommend sperm banking prior to any chemotherapy or any surgery because those can impact sperm health for sure.

After you get through that and you’ve recovered from chemotherapy or from surgery to remove your testicle, the normal process is if you’re interested in trying to have children, you try the usual way. If you’re having difficulty after six months, then you can either rely on banked sperm or enter into the fertility health process.

Challenges of testicular cancer

One of the challenges in this disease is that people do so well and that’s an interesting way of putting it. What makes it a challenge is that it’s hard to understand when patients don’t do well. There’s a small, small subset of patients who don’t do well with this disease. Understanding that and how to better treat them is a real challenge.

I encourage folks to think about how to donate tissue. We have programs at Dana-Farber. We keep everything private. We’re looking for folks who are interested in learning more and helping us learn more. There are folks such as myself, Dr. Van Allen, or other people at Dana-Farber who would be very interested in helping to learn more.

Testicular cancer awareness

Testicular cancer is the most common cancer that affects young men [between] the age of 15 to about 40. The best thing to know about is that it’s very curable.

The most common way that it’s found is that you are doing a self-exam and you feel something abnormal relative to prior examinations, it gets evaluated and is found to be cancer. It’s pretty uncommon for it to be found in an advanced setting, but that does happen.

Regardless of how it’s found, the goal is cure and that happens most of the time. If you’re diagnosed with testicular cancer, you’ll have some labs checked.

The most common thing that happens, after you get an ultrasound to confirm that something is abnormal, is that you’ll have surgery. The surgery is a day surgery. It’s pretty well-tolerated and people recover pretty well.

The question is: has it spread or not? If it hasn’t spread, you’ll have surveillance and that’s just to make sure that it doesn’t come back. If it does, then it’s treated properly early. If it has spread, then depending on kind of how it’s spread and so on, you’ll have to have different therapies.

But again, the overall chance of cure is really good. Despite getting diagnosed with this cancer, there [are] a lot of reasons to be optimistic.

We’re still trying to learn a lot more and research in this field is pretty new because we thought that it’s been cured and so it hasn’t necessarily been a priority. But we’re focusing on trying to learn why sometimes it behaves the way it does and we hope to know more as time goes on.

Terri Ann DiJulio’s Recurring Stage 1 Lung Cancer Story

Introduction

First lung cancer diagnosis

No initial symptoms

Removing the lower lobe of the right lung

Second lung cancer diagnosis

Differences in treatment options

Follow-up protocol

Third lung cancer diagnosis

Participating in a clinical trial to study TumorGlow

Finding a second tumor

Participating in treatment decision-making

Reaction to a third lung cancer diagnosis

Managing scanxiety

Preparing for the clinical trial

Deciding to participate in a clinical trial

Recovering after lung surgery

Follow-up protocol

Being a patient advocate

Legislative work for lung cancer support

Educating people on lung cancer

Words of advice

Taking extra steps

Being an involved patient & a self-advocate

Following the doctor’s orders

Make your needs known

Learning about genetic mutations & the importance of biomarker testing

Finding support as a lung cancer patient

Inspired by Terri Ann's story?

More Lung Cancer Stories

Nicole’s Hodgkin’s Lymphoma Story

Introduction

Pre-diagnosis

Initial symptoms

Putting the blame on anxiety

Getting a blood test that screens for different cancers

Getting the results of the cancer detection test

Getting a CT scan

Diagnosis

Reaction to finding a mass

Feeling something was off & no one was listening

Getting the mass biopsied

Waiting for the biopsy results

Getting the biopsy results

Getting the official diagnosis

Treatment

ABVD chemotherapy

Side effects of ABVD chemotherapy

Hair loss from cancer treatment

Mid-treatment scan

Finding support

Feeling alone

Joining support groups

Words of advice

Inspired by Nicole's story?

More Hodgkin’s Lymphoma Stories

Jason’s Stage 4 Colorectal Cancer Story

Symptoms & Diagnosis

Tell us about yourself

When did you first notice something wasn’t right?

Receiving a diagnosis

Was there any connection between your GERD and colorectal cancer?

Did the VA take responsibility for your diagnosis after your exposure to cancer-causing chemicals?

Finding help through the Pact Act

Did you have any other symptoms before your stage 4 colorectal cancer diagnosis?

Did you have bleeding?

How did you react to receiving your stage 4 colorectal cancer diagnosis?

How did your wife react to your diagnosis?

Treatment

What were the next steps in your treatment?

How did you come to terms with a terminal prognosis?

What treatments were you on?

Switching treatments due to lung spots

Getting a second opinion led to new treatment options

What inspired you to get a second opinion?

Cancer recurrence and COVID caused changes to treatment

Finding hope after his son’s birth

Integrative medicine in cancer care

Getting an Ostomy

Describe getting an ostomy bag