Tag: chemotherapy

Amy’s Stage 4 Colon Cancer Story

Post author By Katrina Villareal
Post date July 19, 2024
No Comments on Amy’s Stage 4 Colon Cancer Story

July 19, 2024

Amy’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Amy initially noticed a slight change in her stool consistency, which persisted despite normal test results. After a year-long delay due to the COVID-19 pandemic, a colonoscopy revealed a 6-cm mass in her colon. Although the initial biopsy showed no cancer, surgery confirmed cancer in the tumor center and 11 out of 21 lymph nodes. It was stage 4 colon cancer.

She began treatment with FOLFOX, experiencing severe side effects like jaw pain, cold sensitivity, and neuropathy. Despite completing the regimen, a slight increase in CEA levels prompted further tests. A CT scan and MRI revealed cancer in her liver, leading to a relapse diagnosis. Unhappy with her initial oncologist’s pessimism, she sought a second opinion and switched to a more supportive doctor.

Her new oncologist initiated FOLFOXIRI, which shrank the tumors but wasn’t enough to eradicate the cancer, leading to surgery and an ablation. When the cancer resurfaced, she joined an immunotherapy clinical trial. The difference between chemotherapy and immunotherapy was substantial, providing her with a significantly improved quality of life.

Throughout her stage 4 colon cancer journey, Amy emphasized the importance of a supportive medical team, listening to her body, advocating for her health, and maintaining movement and proper nutrition during treatment. She also stressed the need for open communication with healthcare providers about side effects and health concerns.

Name: Amy L.
Diagnosis:
- Colon Cancer
Staging:
- 4
Initial Symptoms:
- Slight change in stool consistency
Treatment:
- Chemotherapy: FOLFOX, FOLFOXIRI
- Clinical trial: immunotherapy

What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.

Introduction

I’m from the Seattle Pacific Northwest area and I was diagnosed with stage 4 colon cancer.

Pre-diagnosis

Initial Symptoms

I only had one symptom, which was a very small change in my stool. It became slightly looser, but it wasn’t consistent. For most people, that might not be a big deal, but I hadn’t changed my diet. The first time I noticed it was when I had just come back from Spain and I thought it was from traveling. I gave it a few weeks, but it wasn’t getting better.

PCP Appointment

I listened to my body and talked to my doctor about it within a month of this first symptom. My doctor at the time thought it was food sensitivity. They did autoimmune testing for Crohn’s and celiac disease, but those came up negative. They did an allergy panel to see if I developed any new food allergies. That came back normal. I also had my first CEA test, but I had no idea what that was and that also came back normal.

I was blessed to have a doctor who was very proactive and didn’t ignore my symptoms. They knew that I knew my body. What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.

Unfortunately, they couldn’t get me in for a colonoscopy. They did the fecal immunochemical test (FIT) test. They did all these tests and everything was coming back normal.

He recommended me to a dietician who started looking at what I was eating and what we could change that might explain the stool change. My doctor said that since everything’s coming back normal, he wanted to do due diligence to make sure that there’s nothing they might be missing. He said, “Let’s get you in for a colonoscopy.” That was in the end of 2019.

They called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold… Unfortunately, I ended up waiting for a whole year.

Getting a Colonoscopy

They were booked back a few months. I wasn’t considered urgent. Nobody thought I had cancer. I was 39. They said they’ll get to me at the end of January or early February 2020. Then the COVID pandemic happened.

A week before my appointment, they called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold. They would call when they could make it happen again. Unfortunately, I ended up waiting for a whole year.

During that year, I was furloughed, so I was staying at home. My symptoms went away, which confirmed to me that maybe it was something I was eating since I wasn’t eating out.

By January 2021, I got a phone call asking if I wanted to schedule my colonoscopy again. I almost said no and that I didn’t need it anymore because the problem had gone away, but a little voice inside me told me to go ahead and do it. The “worst” thing that they could tell me is that nothing’s going on. I had nothing to lose, so I told them to go ahead and schedule it. They scheduled me for the first week of February 2021.

I didn’t have any other symptoms, like pencil-thin stools, bloating, or pain. Nobody was looking for cancer, especially colon cancer. Most people who get colon cancer are in their 70s and 80s. The first oncologist I had even told me that I was the youngest patient he ever had. Most of his patients were 60 and older, so it wasn’t on anyone’s mind that I could have cancer.

When I did the prep for my first colonoscopy, it was worse than the colonoscopy itself, but it’s a small drop in the bucket out of all the days in my life. On the day I came in, everything proceeded as normal. I got onto the table and they told my husband that the procedure could take up to 30 to 45 minutes. He couldn’t stay with me, so he dropped me off and left.

They put me in twilight sedation so I’m out of it, but the doctor’s voice and tone cut through. She turned to her nurses and said, “Where is her husband? Get him back here right now. Call him. We need him back here right now.”

She didn’t say anything, but because of her tone, I knew something was wrong. I felt my heart dropped to my stomach. I was half awake and the anesthesiologist was trying to put me back to sleep because my eyes were open and I was starting to ask questions. I didn’t feel anything, so it wasn’t traumatic.

The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes.

Diagnosis

Biopsy

When they wheeled me back into a curtained area, my husband was already there waiting for me. The doctor came and said they found a 6-cm mass in my colon.

I waited for the biopsy results to come back and when she finally called, she said they biopsied the tumor, but there was no cancer. However, they were extremely concerned given the size. It was either going to turn into cancer soon or there would be cancer in the center and not on the outside, so they wanted to get me in quickly. Everything was indicating that they had “caught this in time” and that I would just need surgery and might not even need chemo.

Surgery

They scheduled the surgery within three weeks of that conversation. They were on top of it and wanted to get it out.

The surgeon came in to talk to me. The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes. The tumor hadn’t broken through the colon, like they usually see with more advanced cancer, so they were not expecting to see cancer in my lymph nodes. He was very shocked it was stage 4 colon cancer.

I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more.

Oncologist Appointment

My mom was an ER nurse. She also has leukemia, so she hasn’t worked while dealing with that. My mother-in-law is a hematology-oncology nurse at the Mayo Clinic. I’m fortunate to have knowledgeable people who helped me through the next process.

They referred me to my regular oncologist and said he’d go through my stage 4 colon cancer treatment plan. I had a meeting with him and it went okay, but I ended up switching. He told me that I would need clean-up chemo or adjuvant chemotherapy. Everything looked fine. He wasn’t hugely concerned.

Treatment

FOLFOX Chemotherapy

They said I was going to do FOLFOX (folinic acid, fluorouracil, and oxaliplatin) and then we would do a CT scan. They did a CT scan right after the colonoscopy where they found the mass, but they didn’t find anything else. He said it’ll be good.

Getting a Second Opinion

I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more. I knew nothing. Is FOLFOX the standard treatment? What were my treatment options for stage 4 colon cancer?

Different doctors have different preferences and I wanted to ensure I was getting all the information. I made an appointment and brought all of my medical records to make sure. The doctor said they would do the same treatment.

I had a very rare side effect where I had jaw pain… This was a rare side effect of oxaliplatin.

Side Effects of FOLFOX

I did 12 and it was terrible. Before my second round, I had a very rare side effect where I had jaw pain. It was the most excruciating pain I’d ever experienced in my entire life. It radiated from my jaw back up around my neck and felt like somebody had put my head into a vice.

They didn’t know what was going on. I didn’t find out until I switched oncologists that this was a rare side effect of oxaliplatin. They sent me to a jaw specialist to make sure there wasn’t something else going on. I spent the rest of my treatment switching back and forth between morphine and oxycodone because the pain was so horrific.

On top of the nausea and hair loss, the cold sensitivity was bad. I like my drinks either really hot or cold. I don’t like lukewarm drinks. Chemo, especially oxaliplatin, made everything taste like pennies and dirt. I’m a big water drinker and I couldn’t drink water because the taste would make me gag. I started drinking electrolyte drinks to mask the taste. I don’t like sugary drinks, but I needed to get fluids in me so I don’t end up in the hospital. You have to do what you have to do to survive, I guess.

I also developed bad neuropathy in my hands and feet, and that came on suddenly. I was doing fine, but by cycle 10, the pain in my feet started to get bad. I was having trouble gripping things. I couldn’t wash the dishes. I would pick something up and drop it.

When the CT scan results came back, they found something in my liver… they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5.

Post-Treatment Follow-Up

After they finished, they did my scan and didn’t notice anything, so they sent me on my way and said they’d see me in six months. I wanted to see him in three, but he said he didn’t think that was necessary. I said I did, so he scheduled me for a three-month visit, which ended up being fine.

During my six-month visit, my CEA went up to 2 and that was my first flag. My CEA was still perfectly normal, but my CEA had never gone above 1.7. When I had the appointment with my oncologist, I told him this was concerning for me and he said it was a little concerning for him too. It’s a little bit of an increase, but it could still be normal, so he scheduled a blood draw after four weeks.

In four weeks, my CEA was 4.6 and that was abnormal for me. It was still within the normal range because anything under 5 is still normal, but I thought it was concerning. He said we could do another blood draw in four weeks.

By this time, it was around July and he said I wasn’t due for my CT until October. I said I didn’t want to wait until then.

Relapse

When the CT scan results came back, they found something in my liver. They thought it was a lesion because they said cancer usually looks like billiard balls but this looked like a zucchini. At that point, they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5, so something was going on.

They did an MRI and the results looked more like cancer. When they did a PET scan, the results looked even more like cancer. The biopsy confirmed it.

He said, “It’s looking more like it could be cancer.” They hadn’t done the biopsy yet at this point. He said, “If it’s cancer, there’s only a 20% chance you’ll make it to old age. That’s what the statistics tell us.”

I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me.

Reaction to the Relapse

I walked out, got in my car, closed the door, and broke down crying. I was done with this oncologist. This is a horrific journey in itself. I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me. I don’t care what the statistics say. There’s always somebody that’s on one side or the other.

Looking at Statistics

When you get these statistics, they mean something to doctors and researchers, but they don’t mean anything to people personally because you don’t know which side of that line you’re going to fall on. You could have the worst diagnosis and still survive.

I didn’t want to hear the statistics not because I was blind to it but because I knew it didn’t matter to me. The doctors are guessing which side of the line I’m going to end up on and I don’t want to hear their guess. I wanted to know if my treatment was working and if not, what my next steps would be.

She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there.

Switching Oncologists

I went back to the oncologist from whom I got a second opinion and she’s fantastic. She’s the best decision I ever made. One of the first things she did was get all of my scan results. She called my former doctor, requested all of my scan results, and sent them to a couple of different specialists so they could look at all of them. My new oncologist is on top of it and doing CT scans every eight weeks.

She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there. My first oncologist hadn’t even looked at that and it was one of the first things she noticed. It confirmed to me that I made a good decision.

I have this bad luck of getting things that look favorable but don’t end up being favorable. When I had my relapse, they looked at it and said I had a single liver lesion, which isn’t common. At that point, I was still considered curable.

Relapse Treatment

FOLFOXIRI Chemotherapy

She put me on FOLFOXIRI (folinic acid, fluorouracil, oxaliplatin, and irinotecan). I did FOLFOX a few times, but it wasn’t shrinking, so they added irinotecan and it started to shrink.

I went back on the full treatment for six months with very low node shrinkage but with slow growth.

Side Effects of FOLFOXIRI

I was miserable on oxaliplatin. It was terrible. I was sick all the time. The neuropathy in my hands had gotten better, but my feet had gotten worse. I could still do stuff with my hands, but my feet are pretty bad. I also had cold sensitivity, like not being able to eat cold food. Breathing in cold air was like breathing in shards of glass. My oncologist said they didn’t see any shrinkage with oxaliplatin, so she decided to remove it.

I had treatment until February 2023. It was shrinking and looking good, but it wasn’t going away, so they wanted to do surgery to remove the lymph system that had cancer in it. They did an ablation on one spot.

My oncologist wanted to do the ctDNA test to see if I had circulating tumor DNA in my blood. Four weeks later, that came out positive.

She said they usually wait 8 to 10 weeks before doing the first scan post-treatment, but she wanted to go ahead and do an MRI six weeks after surgery. She wanted to make sure because it looked like there was residual cancer.

Unfortunately, my liver lit up. They did a PET scan and there are a couple of spots now. I went back on the full treatment for six months with very low node shrinkage but with slow growth.

The difference between immunotherapy and chemotherapy is like night and day.

Joining a Clinical Trial

I started with an immunotherapy clinical trial in December 2023. The difference between immunotherapy and chemotherapy is like night and day. I’m not sick and tired all the time, so I’m able to go out and do normal activities. I feel like I’m able to have more of a normal life. It’s been fantastic, but I’m still fighting.

This is why it’s important to have a doctor who’s on your side. As soon as my recurrence happened, she went ahead and signed me up for every single trial that they offered. She didn’t ask me because she knew that these trials could have a year’s wait list. She figured that wherever I was, at least I was on the wait list. If a spot opened up, we could have a conversation about it.

When it comes to treatment, you do have a say. Your doctor may have a recommendation, but you have a say in what your treatment plan is going to be. You can tell them if you want an alternative.

A lot of people are intimidated, so they don’t want to tell their doctor what to do. It’s important to remember that your doctor is working for you. Find someone who’s working for you. My oncologist definitely was working for me.

Future Treatment Plans

My cancer is still growing. At any time, I can say I want to try something different. My oncologist and I have had those conversations. Because I’m on a trial, it’s not going to last forever. Unfortunately, I can’t be on this for the next five years. Having been off chemo, I’m hesitant about going back to it. I wanted to find out if there were non-chemo options we could explore, so we’ve talked about other options that are on the table.

With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.

Words of Advice

Know your body and trust your body. If something changes and there’s no warrant for that change, talk to your doctor. Don’t talk to your friends. Don’t go to social media. For everyone else, it might be normal, but if it’s not normal for you, it does warrant a conversation with your doctor. If it turns out to be nothing, you’re not out that much. I don’t think any doctor’s going to be mad that you wasted their time coming to them with your concern. Get rid of that fear. Know your body and know what’s normal for your body.

If anything comes up abnormal, don’t be afraid to go to your doctor and advocate for yourself. Tell them you want to find out what’s going on. With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.

People ignore the early symptoms. Maybe they’re busy, maybe they’re afraid, but I think primarily it’s because people think it’s not a big enough issue to warrant seeing a doctor. If it’s not normal for you, speak up and say something. The best thing that could happen is they tell you it’s nothing. The worst thing that could happen is they tell you it’s something, but maybe they found it before it’s something big and problematic.

Thank you for sharing your story, Amy!

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Elizabeth’s Stage 4 Colon Cancer Story

Post author By Chris Sanchez
Post date July 19, 2024
No Comments on Elizabeth’s Stage 4 Colon Cancer Story

July 19, 2024

Elizabeth’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Elizabeth was diagnosed with stage 4 colon cancer on March 14, 2019, and, after chemotherapy and surgery, was declared NED in July of the same year. On the first of July this year, she celebrated her 5th year of being cancer–free.

Elizabeth has something of a long history of cancer, having lost her mother to non-Hodgkin lymphoma just over 4 months after she was born; having been diagnosed herself with adenocarcinoma of the submandibular salivary gland, which very rarely affects children, at just 2 years old; and having had a basal cell removed from her face at 25. She has also had a long history of stomach issues. Her colon cancer was discovered when her condition worsened to the point that a CT scan became necessary.

Elizabeth has learned a lot from her experience, and is eager to share her story with other patients in the hope that she may be able to offer both guidance and reassurance.

Name: Elizabeth W.
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Initial Symptoms:
- Irritable bowel syndrome (IBS)
- Small intestinal bacterial overgrowth (SIBO)
- B12 deficiency
- Hypoalbuminemia
Treatments:
- Surgery (removal of left side of liver and small portion on the right)
- Chemotherapy (oxaliplatin and xeloda)

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

I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.

Introduction

Hi, my name is Elizabeth. I work in the TV industry.

On March 14th of 2019, I was diagnosed with stage 4 colon cancer.

After surgery and chemotherapy, I was declared NED (no evidence of disease) later that same year.

On July 1st, I will have been 5 years cancer-free.

History of Cancer

I have kind of a long history with cancer.

Ten days after I was born, my mom was diagnosed with non-Hodgkin’s lymphoma of the bowel. They gave her 2 years to live, but she made it to just 4 months after her diagnosis. Bone marrow transplants, which is what they do now, had not started yet. They actually started 2 years after she was diagnosed.

When I was 2, my dad noticed that I had a lump in my neck. I’d been born with a cyst under my tongue, so he thought that that’s what it was. It turns out that I had adenocarcinoma of the submandibular salivary gland. I believe I was the first child or one of the first children, at least, to be diagnosed with that type of cancer. It’s way more common in adults.

At 25, I had a basal cell removed from my face. So I joke that I’ve had cancer about 2 and a half times because a basal cell, it’s technically skin cancer.

Pre-diagnosis

So I always sort of had stomach issues. My sister and I, whether it was lactose intolerance or whatever, we’d get stomach aches. And very commonly for us, we would eat something and then we would almost immediately go to the bathroom. It was just something that we always did. And I didn’t really pay that much attention to it because I tested negative for celiac multiple times.

I went to a GI in my early 20s when I moved to L.A., and I tested negative for celiac twice. They gave me an irritable bowel syndrome (IBS) diagnosis, which is just a very blanket diagnosis of any sort of stomach issues.

I then started to get really bad stomach issues, later in my 20s and into my 30s. And at one point I was in Europe, my sister was coming to meet me, and I was in so much pain she had to bring me xiaxin, which is an antibiotic.

I would feel better on the antibiotic for a little bit after, and then the issues would just come back. Nothing seemed to make them go away permanently. As for my sister, she had done a round of vaccine for her stomach issues and they had just gone away.

I went and saw a GI because I was having trouble finishing going to the bathroom. I would go to the bathroom and I would feel like there was more that needed to come out, but I would have to sit and wait for a little bit for it to come out.

So the GI did an exam and he said, everything seems fine, but, I’d like to do a colonoscopy to rule out Crohn’s or colitis. And then he also did a bacterial overgrowth test.

So I got a call from my insurance that said that he was leaving the network the next week, and that I would have to find a different GI to do the colonoscopy. So I got a new referral to another GI. He looked at everything that the previous GI had done. He said, you have IBS with bacterial overgrowth because I tested positive for SIBO.

Then he wanted me to take an antibiotic every night for 6 months to a year. And what he said to me after that was, this is what I think is wrong with you, and I’m never wrong. I didn’t like that answer.

My work in TV keeps me filming about 8 months a year. Every hiatus in the spring, I would go see another doctor. So I got another referral to another GI. I went and met with her in Santa Monica and she said, I don’t think it’s Crohn’s or colitis, but we can rule it out by doing a colonoscopy. But she also said, well, you aren’t having symptoms right now, so let’s just wait until your symptoms come back. And it was my first time as an adult that I went an entire year without any symptoms.

That all changed on March 1, 2019, when I was at work. I will never forget it.

It was a Friday evening. I was standing in front of the house where we were going to film, and I felt like I had pulled a muscle in my side. And I remember saying to one of my friends at work, like, it feels weird because I didn’t do anything that would have caused that feeling. And from that day onwards, I started getting shooting pains from my left side towards my middle, and they would become more frequent and more painful as the weeks went on.

On March 11th, I was at work and I started to just feel ill as well. I took the next day off and went to see another GI. He did all these different tests, and he noticed that my blood work from January, from my physical, revealed that I had very low B12 and very low albumin, and nobody had followed up to do additional testing.

The GI said, you know, we’re just going to run some tests. I would like to do a colonoscopy. You probably have a mild Crohn’s and colitis. So the same thing that everyone else sort of thought was or wasn’t what I had.

Okay, well, I have a month left of work. Is it possible to do it when that’s when that’s done? And he said, oh yeah, of course, no problem. I said, as long as it’s not life threatening. He said, oh no, nothing like that.

The next day, I woke up in the most pain I’d ever been in—I was in so much pain that I could not stand up straight—and I drove 35 miles to Santa Clarita to go to work. But everyone at work was like, you have to go home.

My doctor called me and he said the inflammation levels in my blood were so high. He said, you have to have a colonoscopy on Friday (this was a Wednesday). I was talking to my parents and my dad, who’s a pediatrician, decided he was going to fly down because of how much pain I was in.

My GI initially had told me to start taking fiber on that Tuesday. And then on Wednesday, when he called me, he said, don’t take fiber, switch to Miralax instead. My first bowel movement post-Miralax on that Thursday was covered in blood, and it was the first time I had ever had blood in my stool.

I reached out to him and he said, that’s perfectly normal. It’s what we would expect because of the levels of inflammation in your blood. I wouldn’t worry about it, he said.

Discovery and Diagnosis

However, my GI and my dad had spoken on the phone and they decided they were going to send me for a CT test. So that Thursday, March 14th, I drove to UCLA to have my CT exam. My dad was flying in and was going to meet me at UCLA.

I had the CT exam, and when I was done, my dad showed up. I was still in pain and extremely nauseous. We drove to Rite Aid to buy something, but I was feeling so bad that I couldn’t leave the car; my dad had to run in.

When I got home I immediately ran into the bathroom and started throwing up. But in the middle of all that, my dad walked in with my cellphone on speakerphone because my doctor had called back.

The doctor says, I’m so sorry, but you have a tumor in your colon and spots on your liver and you have to go to the hospital.

And my dad whispered, it’s happening all over again. Because my mom had non-Hodgkin’s lymphoma of the bowel. It wasn’t connected through cancer, but it was in roughly the same location.

And then my doctor called me back, he was able to get me a bed. Just go to UCLA, he said. I packed and we drove over.

We arrived at UCLA and got settled. The next morning, they brought me in for the colonoscopy.

If you have a blockage in your colon, no matter what stage you’re at, if it’s bad enough, they’ll do an emergency surgery and just take out that part of the colon right away. They were successful and were able to place a stent.

The next day I met Dr. Agopian, who ended up being my liver surgeon. He had a refreshingly different approach from the others I had spoken with. He walked into my room by himself, sat down at the screen, and turned it to face me.

Dr. Agopian pulled up my scan and he said, you have three spots on the left side of your liver and one on the right.

Dr. Agopian said, I want to take out the whole left side of your liver and this spot on the right, it’s right on the edge. We’ll just cut it out. And then he looked at me and he said, let’s cure this thing. And he added, well, we’ll do a few rounds of chemo and then if it’s the same or better, you can have surgery.

Reaction to My Colon Cancer Diagnosis

So after I was first told I had colon cancer and spots on my liver, I remember sitting on the floor and there were a few first thoughts.

My friend Stacy was diagnosed with breast cancer when she was pregnant with twins, and she passed away before they turned two. At their first birthday, she had said to me that she had bone spots. I remember calling my dad and asking him what that meant. My dad had said to me that any time cancer leaves its origin, it’s only a matter of time.

So when he said I had liver spots, my first thought was, oh, I’m going to die. And then my dad left to go call my stepmom. I sat on the floor and my first thought was, this is so stupid. I just was like, I can’t. It just didn’t make any sense.

And then on the way to UCLA, I don’t remember if we really said anything. I remember having conversations with myself, and I was just sort of going through all of the things that I’d done. I’ve traveled a lot. I’ve been to all seven continents, like you’ve lived, you’ve had a really good life.

And we get to UCLA and headed to my room. The woman said that they were going to do a biopsy and colonoscopy in the morning, and so they were going to do 3 tap water enemas that night. My dad went to find lodgings for the night and my stepmom was going to fly in the next morning. So I was all alone in the room.

I just remember sitting in that hospital room and basically knowing already that I had stage 4 colon cancer. It’s a very strange thing because no one had confirmed anything yet and I didn’t have a biopsy, but I already knew.

For a period of time, I was explaining what was going on, but the minute that I would have to say I have stage 4 colon cancer, I would just lose it. And so I didn’t tell. A few people, like those from the show that I was working on, showed up in ways that they didn’t have to. They had always been extremely loving and caring towards me.

But Dr. Agopian made a real difference. He was the first person that sat down and explained things in a way that was practical and straightforward. Okay, here’s plan A, here’s plan B, here’s plan C. These are the options. These are the things that we can do. And I felt so disconnected from everything that was going on until this man walked down and just said, this is what’s happening. This is what we’re planning on doing.

He for me was like a light, like a beacon of hope that nobody else presented. And I held on to that so tightly because nobody was giving me anything else.

Treatment

I was in the hospital from Thursday to Sunday. I only stayed in the hospital as long as I did because I kept getting fevers at night. They couldn’t find any infections. They couldn’t figure out what my fever was caused by, either; there wasn’t anything else going on. I basically had to stay until I stopped getting fever.

And then I got better and was released. My parents initially told me to come to Northern California, where they live, because they knew the head of oncology at UCSF and they’re like, you’ll come up and do this at home. But I said, thanks but no, I’m not leaving my house. If I go home to do this, my entire existence revolves around me being sick, away from all of my things and my cat and so on.

So they gave me the names of a few different oncologists and reached out to their friend at UCSF for referrals to UCLA as well. They came back with two of the same three names. And after a couple of initial calls I finally got to talk to an oncologist, and my sister and parents flew down to meet him.

Chemotherapy

I had my first round of chemo on April 2019 and ended in November 2019. I took oxaliplatin and xeloda.

After that, I did a scan. I had been told, if my scans were good, we would cancel the chemo appointment. If they’re bad, then I’d need to stay and do another round of chemo.

And I had asked my doctor because the liver surgeon had said it just has to be the same or better. And I said, how often is it the same or better? He said 75%. I think it was 70 or 75% are the same or better on oxaliplatin and xeloda after three rounds. But I was taken aback when I got a phone call and was told that my appointment had been cancelled, my doctor was taking a leave of absence, and I had to find another doctor while he was gone.

So I paged my nurse practitioner, and I said, well, I want my scan results. And she said, oh, your colon cancer tumor, you can’t even really see it anymore. And all your spots shrank.

I then called the liver surgeon’s office, Dr. Agopian’s office, and was told that he wouldn’t be back until Wednesday. But then I got a phone call back and was told that I was going to have surgery and that I needed to meet Dr. Agopian and my colon surgeon on Friday.

I immediately called my friend who lived in Hawaii, and I scheduled a flight to Hawaii on Saturday, right after the meeting with the doctors, because I wanted to have a bikini vacation before they cut into my stomach.

Surgery

So during the Friday meeting, we scheduled my surgery for July 1st of 2019.

There was an initial concern about the date; my dad went, oh, it’s July 1st. It’s the day in every hospital where everybody moves up a level. A lot of people don’t have surgery on July 1st. But it turns out that none of the doctors assigned to me would be affected, which was great.

I underwent the surgery as planned on July 1, 2019.

Remission

One or two weeks later, I went in for my follow up appointment with Dr. Agopian. He came in and he said, is anyone giving you your pathology yet? I said, no.

And he said, the cancer cells in your tumors, they’re all dead. At that point I’d had 3 rounds of chemo out of the 8 that I was supposed to have, and I just sort of went, oh, okay.

And then a day later, I came in to see my colon cancer surgeon and he walked in and goes, Agopian stole my thunder. And they were like so excited. But again, my oncologist was gone and so I didn’t quite have that conversation.

I went to a new oncologist and he’s going through my file like he hadn’t even looked at it yet. And he was just like, oh, this is good, this is good.

And then he goes, you’re in remission. I called my sister after and I was like, didn’t sink in and it didn’t feel real. And then finally when my oncologist came back and said, you know, they say NED, which is no evidence of disease.

I finished my colon cancer treatment in November of 2019. I dropped the oxaliplatin because I had a allergic reaction on round 6 and broke out into hives. So I just did the xeloda for my last few rounds.

I got scanned every 3 months, and then it went to 4 months. And on July 1st when I go in to see my oncologist, for my 5 year scans, I then get a say in how long we’ll have a discussion of how often we’re going to do the scans versus the Signatera, which is the blood test where they can test for tumor markers in your blood.

… you will not always feel [bad] because in the first round you don’t know when it’s going to end and you feel like it’s never going to end.

Lessons Elizabeth would like to share

Radical Hope

During the course of my treatment, one of her friends had said it was really interesting because she was having conversations with one of her friends who was a doctor, and what the friend had said to her was, there’s no reason not to have radical hope.

So radical hope sort of became my thing.

I’m not religious. I don’t believe in God. But that being said, there is still a sense of whatever happens, happens, and what’s meant to be will happen. So that always gets very complicated for me.

The Possibility of Death

I was just very practical about it. Like most people don’t survive a stage 4 diagnosis. The statistic I think is, 12 or 14% of stage 4 colon cancer patients are alive 5 years after their diagnosis.

If you are a stage 4 cancer patient and you are friends with other stage 4 cancer patients, most of them are going to die. That was a really hard thing to deal with. And then I also struggled a lot because people kept saying things like, you’re the strongest person I know. If anyone can beat it, you can. And every time someone would say that to me, I’d be like, oh, I’m definitely dying.

It’s such a weird pressure because what if I die? Then have I let all these people down? Was I not as strong as they thought I was?

I’m not a warrior. It’s not a battle. It’s a disease. I didn’t sign up for this. I’m not a soldier. I think Norm McDonald said, um, when you die, the cancer dies with you.

I always appreciated that because I think that people mean well, again. But, like, I’m not a warrior. I’m not out fighting. I’m on my couch watching Parks and Recreation, trying not to throw up.

Putting up a strong front

It’s this idea that you have to be this strong front to everybody. And it’s like, no, we’re tired.

Like we’re tired and we’re cranky and we’re annoyed and like, I was so hot and people, very lovely people kept sending me blankets and I was like, I just, I’m so hot. And one of the main side effects of oxaliplatin is that you can’t eat, drink or touch anything cold. I had a very high cold sensitivity, so I was always having to drink hot drinks, hot chocolate, hot apple cider, hot water and lemon.

The last thing that I wanted was to be wrapped up in a blanket. But I really appreciated everybody that sent them to me.

If I am miserable on top of how terrible it is, what’s the point then? So I’m going to try to have the best time, like you’re going to try to make the best out of a bad situation. And it’s hard to do.

But I had incredible people that stepped up and came and took care of me, and there was so much good that I got to experience.

Reaching out, giving back

I recently donated my hair. I did it when I was diagnosed, also because with colon cancer, with the main chemo, you don’t lose your hair. But I was so overwhelmed with all of the love and the gifts and the things that were coming to me. I donated my hair after my first round of chemo, and then just 5 years later, I donated it again.

Any time that I felt like I could give back in any way, that was really important.

People are nice to you because you have cancer. Everyone seemed to go out of their way to offer things. And I think that’s also the other thing, it was really difficult for me to ask for specific things.

So everybody stopped checking in on me and it was like, oh, because everyone said, I don’t want to bother you. And I just would say, it’s not about like telling someone you’re thinking of them or, hey, I’m going to stop by with, you know, X, Y, or Z. I think those are sort of things that are super helpful.

And for me to be able to share as a stage 4 patient, to give hope to other stage 4 patients, that there’s someone in front of them who is going through it, who went through it somewhat recently and is okay. And that can be a little bit of pressure of like, I get nervous that if I do have a recurrence, I’m somehow letting everybody down.

It feels like a very strange space to live in. But again, things like this. I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.

I think that everyone’s experiences are going to be different. The fact that colon cancer is now the number 1 cancer death for men 20 to 40, and it’s the number 1 cancer death for men and women combined 20 to 40. And we still aren’t doing colonoscopies for people. I think that that’s the big thing that needs to be addressed.

Access to colonoscopies, access to Cologuard, access to things that are clearly needed because the number of people that reach out to me, women in their 20s on Tech Talk who will message me and say, I made my doctor do a colonoscopy, they said they weren’t going to find anything. They did a colonoscopy. They removed precancerous polyps and they said, you saved my life. And I think that the price of a colonoscopy, the access to health care, all of these things, it’s going to cause so much more issues because the number is rising. It’s something environmental. My geneticist says they don’t know what it is.

And for people that were born in the 80s and 90s, I just think that access to colonoscopies needs to be a bigger thing on everybody’s mind. I will also say that I did call my doctor’s office of the gentleman who said, this is what I think is wrong with you, and I’m never wrong. I spoke to the office manager because I wanted to make sure that he knew that he was wrong.

Mental health struggles

The big thing that people don’t sort of warn you about is that everyone’s around you and it’s very structured. And then once you finish, you don’t have that anymore. And that to me is when my mental health tanked.

I really struggled as my friends were starting to pass away from treatment, being a former stage 4 cancer patient who doesn’t have cancer any longer. But maybe it’s Schrodinger’s cancer, right? You don’t know until the day you have the test and the day you have the test. You know that that day you didn’t have cancer. That can be very difficult.

I started to have panic attacks and had to stop working on the show that I was working on because my mental health got so bad. Actually, I had a panic attack so bad I couldn’t drive for about six weeks. I didn’t think I’d be able to work again.

My primary care doctor at the time wouldn’t prescribe me anti-anxiety meds. He wanted me to rule out anything medical. So I went through endocrinology, ENT, cardiology, neurology. I had a brain MRI to make sure I didn’t have cancer in my brain. I saw every doctor under the sun. But the problem is, they were all specialty. They come in, they do their test, and if it’s not them, they just leave. So I was just constantly feeling abandoned by all of my doctors and my primary care doctors.

And then finally I made it through all the different doctors. I was feeling suicidal and was really struggling. It was really upsetting that no one was sort of listening or paying attention and feeling really guilty because I survived. I couldn’t live the way that I was feeling, the way that my brain felt. I couldn’t sustain that and I felt like nobody was paying attention. To anything other than their specialized thing. And so I had guilt on top of everything else. My brain just felt like it was fighting me all the time.

And the mental health aspect of chemo as well, which my friend Megan called black cloud days when you were having a bad day. I was talking to someone and I kept saying, it’s okay to have a black cloud day. And her husband kept saying, but we’re always going to look for the sun. And I was like, but you have to allow yourself to sit in what feels bad sometimes.

The better we felt, the worse we felt mentally during our cycles, because the better you felt physically, the closer you were to going back and having another round. You physically felt better, you were able to do more things, but you knew that the better you felt, the worse you were about to feel. And so I think that the structure of how you can help somebody who’s going through chemo and everybody is going to need something different.

Resources that can help

I think that whatever little thing you can hang on to and help you find your people, you should explore.

ColonTown is a great resource on Facebook. And TikTok has become another big thing for me. I created a TikTok account to spread awareness for colon cancer and young people, but also the idea of struggling with mental health after your cancer finishes because nobody talks about it. There isn’t as much support for that. There’s support when you’re going through it.

UCLA has free psychiatry, psychology services. You can get a therapist, and I had a great one. Not enough attention is paid to your mental state after your treatments are finished. And so that’s always been a really big thing for me, which is, people say, oh, but you’re better now. And it’s like, you’re never fully better. It never goes away.

I should also say that I craved oranges, and I learned later that oranges are an anti-nausea food, and pregnant women drink them and people on boats when they’re getting seasick.

Solutions

I had a meeting with a psychiatrist who I just saw to prescribe me meds that I should have been given six weeks earlier. And within two weeks it completely changed everything in my life. And I also now have a new primary care doctor who is lovely.

I’m wearing my Chadwick Boseman T shirt. It’s all of the lost potential of a human being that colon cancer took away. Like colon cancer took away massive potential not only from Chadwick himself, but from every person that that passes away.

And I think that the struggle of having cancer, of dealing with cancer, and then dealing with its aftermath is something that is really important, and I would love to figure out a better way to sort of platform all of that.

I’m going on a beach vacation with my sister and her friends, next week to celebrate five years, I have my scans on the 28th.

I’ll meet with my oncologist on the first, and it all seems like a fever dream, because when you first get diagnosed and when you’re in it, it feels so far away.

“Snowboarding”

When I went in for my first round of chemo, I sat next to a man who was a couple years older than me. His colon cancer had spread to his esophagus. And I was so scared and so unsure of what was coming and what to expect. And he was on his 5th round.

He sat there and walked me through everything that I could expect. He talked about the cold symptom called broken glass syndrome. If you eat or drink anything, even walking too quickly, the air that you inhale is too cold and it can set off different things. He just talked me through everything in such a gentle, sweet way.

I have shared with every single person that I have talked to about this because a lot of people reach out on TikTok or on Instagram, I have many conversations with strangers who have just been diagnosed, or have friends or family that have just been diagnosed, and I walk them through everything like he did for me.

What he said was, on my good weeks, I go snowboarding. And so in my first round when I was having my worst day and I felt like I couldn’t do anything and I couldn’t move, and I felt so terrible in my head, I just kept repeating, he went snowboarding.

He did not go snowboarding feeling like this. So you will not always feel like this because in the first round you don’t know when it’s going to end and you feel like it’s never going to end. And so I just kept saying in my head, he went snowboarding. And that to me was the hope that I would get better.

Thank you for sharing your story, Elizabeth!

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My name is Holly. I’m from Invercargill. It’s a small city at the bottom of New Zealand.

I am a single mum to a boy called Ambrose, who is five, turning six in October.

I was recently diagnosed with primary myelofibrosis in September of 2023.

And, yeah, just been navigating life as a single mum and just dedicating my time to him. Whilst dealing with this.

Pre-diagnosis

Initial symptoms

My first real symptoms of primary myelofibrosis basically start back in 2021 and April.

I was 32 weeks with my daughter and I started getting pain in my calf, just throbbing pain.

So I was getting constant massages to try get rid of it. Initially thought it was pre-eclampsia. I was also experiencing extreme fatigue a lot throughout the pregnancy.

And then one day I was in the supermarket and I started getting a lot of pressure in my abdomen. I didn’t really think much of it and went home.

And then I started having contractions around 9 p.m. and they lasted until 3 a.m. I started experiencing fevers and sweats and because I had had such a horrible experience with my previous midwife, with my son, I left it and I didn’t want to bother my current midwife.

And so then I’d contacted her in the morning about it, and we went down to the hospital.

She did an ultrasound and found that there was no heartbeat.

Loss of her daughter

So then I had to give birth to my daughter. And it was just a horrific, horrific delivery.

Yeah, it lasted for a few days, and I was put on these inducing pills. They gave me too many of them. And her head basically went through my uterus; I suffered a uterine rupture during labor.

So then I was rushed into theatre, and I lost 1.5 to 1.7l of blood. After that, I was in an ICU for about a week due to complications, including pneumonia.

I had a really high heart rate. I had heart failure. And they didn’t really understand what was going wrong.

And then they found that I had had a blood clot in my heart, in my lungs, and a DVT (deep vein thrombosis) in that right calf. So I’m guessing all the massaging had possibly broken the blood clot off into different parts of my organs.

So they think they also think that it caused my daughter’s death. A blood clot had passed through my placenta, causing a placental abruption.

Seizure and stroke

So I left hospital, and then two weeks later, I had a seizure and a stroke, and I was rushed back into hospital. They had found that I had had a thrombosis stroke in my brain.

So I was put on warfarin for well over six months max. And then, originally the hematologist thought that I had blood clotting disorder.

So she put me on warfarin, then took me off it for about a year just to see how my blood platelets were going to be. And they weren’t coming down, they were rising.

Discovery and diagnosis

That’s when I started having my other symptoms. And they came on quite, quite quickly because I wasn’t on any sort of medication at that time.

I started just being extremely, extremely fatigued. My arms were really, really weak. I lost 20kg without even trying, within 3 months.

I started bruising, like all over my body and the weirdest places. Itching. Crashing randomly. Constant shortness of breath.

It was it was horrible and I just I couldn’t function at all. Throughout the day.

So then the doctor sent me to have a bone marrow biopsy. I was officially diagnosed with primary myelofibrosis in September 2023.

Reaction to the diagnosis

I guess that unknown feeling I felt within those two years of not knowing. It’s sort of hard to really know. I guess I was just going through day by day.

I initially thought because I had two blood transfusions, I thought that it was all the blood transfusions that were actually causing all these symptoms, and I just thought that was normal. And I also thought because of all the physical complications I went through, my body was taking a longer time to try and heal from all of that.

And then, straight after all of that, I was thrown straight back into being a parent, single parent. Yeah, it was pretty crazy.

So when I went in for the bone marrow biopsy, I felt really numb to it all, I think because so much had happened previously, I was just on autopilot, like, okay. Yep. We’ll do this.

After I got the diagnosis, I was absolutely distraught because I didn’t know much about the disease at the time.

And I didn’t know anything. If I was going to lose all my hair, or if I was going to have to take more time being away from my son. So many thoughts running through my head.

But there’s more. As it turns out, my cancer might have had something to do with my daughter’s passing.

When my cancer was diagnosed, they didn’t really say that they thought that I had it when my daughter had passed. It wasn’t until a few months ago that they had sort of written it in doctor’s notes, speculating that it had caused my daughter’s passing and that I’d had it while I was pregnant with her.

But yeah, the feelings around it. I was more so angry at the hospital and my midwife for not monitoring me closely enough, but I guess they couldn’t really do anything about it.

But yeah, it was a terrible, terrible time. I really lost myself and my relationship fell apart; I just wasn’t coping.

I had turned to drinking a lot, so that was like my medication while trying to be a single mum and trying to just push, push forward.

And yeah, so when they had told me that they thought that I might have had it when I was pregnant with my daughter, I’d already had a huge feeling that it had caused it before they even said anything.

Treatment

Oral chemotherapy: hydroxyurea

My treatment plan was to go on an oral chemotherapy called hydroxyurea.

So I started on 500mg. My platelets weren’t really doing anything. So they were going to double the dosage.

Discovery of pregnancy, and shift to immunotherapy injections: peginterferon

And then a week later I found out I was pregnant. And I was a mess because I thought, I’m gonna have to terminate this baby.

Then they congratulated me, and put me on peginterferon. It’s immunotherapy that’s administered through an injection. I do this myself, once a week, on Sunday nights.

So I’ve been on peginterferon and aspirin, um, throughout this pregnancy and it’s brought my platelets right down.

I’m also on clexane as well, just to prevent blood clotting.

I’ve been in normal range for the last few months, and I’ve felt the best that I’ve felt in the last few years, and everything’s just looking amazing with this pregnancy.

So I’ve been really privileged, even, I guess, divinely orchestrated.

Side effects

That being said, I’ve been experiencing some side effects for the immunotherapy.

I’ve had a lot of hair thinning, acne, a lot of fatigue. And loss of appetite. I don’t really have much of an appetite. I’ve started bruising again, too.

But I actually had more symptoms with the hydroxyurea than I did with the peginterferon.

So at this point I don’t have any bone marrow scarring. I just have a lot of fibrosis.

Looking forward

New treatment plans haven’t been discussed with me at all because I’m pre fibrotic with the primary myelofibrosis.

So they for now they haven’t discussed anything with me. And I am open to other treatments if need be.

A stem cell transplant has been brought up. But I’m sort of on the fence about it, because I’ve heard such horrific stories of people that have gone through it.

I don’t know if I want to put myself through that.

… over time, this cancer, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.

Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.

Takeaways and lessons

In the beginning my mental health was really, really bad. I was thinking the worst of everything.

But then over time, this myelofibrosis, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.

Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.

Yeah, it’s been a huge challenge, but it’s been one of the best things to happen to me as regards my mindset.

I feel like I can overcome anything as long as I just remain positive.

I guess I also really started to find myself. After I got diagnosed with myelofibrosis, I had an answer as to why my daughter passed away. And then I knew that it wasn’t my fault, because for a long time I blamed myself. And I felt that I could finally move forward. I had that closure.

Then that’s when the healing really started. So when, when they got the diagnosis, the healing really started. So I guess it was a little blessing in disguise, even though it was what caused it all.

Now, I’m pregnant with another little girl. I have obstetricians monitoring me every four weeks, and also multiple scans.

I am 33 weeks at the moment, and they’ve planned all these scans to make sure that everything’s fine. I’ve got phone consults with my hematologist, monthly blood tests.

And my midwife, she’s amazing. She was like, don’t worry. If you know you have an issue, just ring me and I’ll come down in the middle of the night. We can check. She’s very, very onto it.

And she’s always happy to do extra tests and scans and things to make sure that everything’s good. So they’ve really looked after me now, this time round.

I’m due on the 2nd of July, but they’re going to get me an early C-section at 37 weeks due to the uterine rupture that I previously had.

In closing, I guess my message is, you know your body better than anybody else does.

If you have an inkling of whether you’re pregnant or you may have cancer if you have an inkling that there’s something wrong—put yourself first and go and get it checked.

Thank you for sharing your story, Holly!

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Related Cancer Stories

More Myelofibrosis Stories

Stacy S.

Diagnosis: Myelofibrosis with CALR and ASXL1 mutations
Symptoms: Fatique, cold hands and feet
Treatment: Agrylin (for thrombocythemia), Ruxolitinib (Jakafi), Fedratinib (INREBIC), stem cell transplant

Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial

Natalia A. Diagnosis: Myelofibrosis Symptoms: Anemia, fatigue, weakness, shortness of breath Treatment: Phlebotomies, iron pills, blood transfusion

Mary L.

Diagnosis: Myelofibrosis (MPN)
1st Symptoms: Fatigue, extreme dizziness (later diagnosed as vertigo)
Treatment: Pegasys, hydroxyurea (current)

Kristin D.

Symptoms: None; caught at routine blood work
Treatment: Stem cell transplant

Joseph C.

Symptoms: None; caught at routine blood work
Treatment: Clinical trial: VONJO (pacritinib)

Jeremy S.

Diagnosis: Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL)

Holly S.

Diagnosis: Primary myelofibrosis
Symptoms: Severe fatigue, throbbing pain in left calf, significant weight loss, itching and rashes, bruising, and shortness of breath
Treatment: Oral chemotherapy: hydroxyurea, Immunotherapy injections: peginterferon

Doug A.

Symptoms: Fatigue
Treatment: ruxolitinib, selinexor (clinical trial)

Cathy T.

Diagnosis: Myelofibrosis

Symptoms: None; caught at a routine blood test
Treatment: Stem cell transplant

Ben H.

Symptoms: None; caught at a routine blood test
Treatments: Hydroxyurea & aspirin, ruxolitinib

Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Tags chemotherapy, clexane, hydroxyurea, Immunotherapy, myelofibrosis, Patient Stories, peginterferon, primary myelofibrosis, therapies

Categories
Classical Hodgkin Lymphoma Patient Stories

Brescia’s Hodgkin Lymphoma Story

Post author By Chris Sanchez

Post date June 12, 2024

No Comments on Brescia’s Hodgkin Lymphoma Story

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June 12, 2024

Brescia’s Hodgkin Lymphoma Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Brescia was only 20 when she was found to have early-stage Hodgkin’s Lymphoma.

When her cancer was caught, Brescia was returning to America from a study stint in Italy and was on the verge of returning to college. Her primary care physician discovered a suspicious swelling in the side of her neck during a routine physical examination, and she was scheduled for an ultrasound. A subsequent biopsy confirmed her cancer.

Brescia’s diagnosis was unsettling, to say the least, but she found refuge in the things that bring her joy and fulfillment, including being creative, making movies, and enjoying nature.

Brescia and her family sat down with her team of doctors at the Mayo Clinic in Arizona to discuss her treatment options. They considered a combination of chemotherapy and radiation, but decided to go for 6 rounds of ABVD chemotherapy and no radiation, given her youth and the fact that radiation can have long-term side effects. Brescia ended up taking the whole semester off to focus on her treatment.

Brescia has been cancer-free for 5 years now. She is now a photographer and videographer and runs her own boutique agency. Looking back at the time she was ill, she notes how she gained a new appreciation for school as well as the simple things in her life, appreciates the perspective she gained after her illness, and shares the lessons she learned from her experience.

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

Name: Brescia D.

Diagnosis:

Hodgkin Lymphoma

Initial Symptoms:

Swelling in the side of her neck

Treatment:

Chemotherapy: 6 rounds of ABVD

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

Thank you for sharing your story, Brescia!

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Madi J., Hodgkin's, Stage 1B

Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms: Shortness of breath
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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
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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
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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
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Fabiola L., Hodgkin's, Stage 2BX

Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
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Stephanie O., Hodgkin's, Stage 2B

Cancer details: Stage 2 with bulky disease
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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

Brescia D.

Diagnosis: Hodgkin Lymphoma
Symptoms: Swelling in the side of her neck
Treatment: Chemotherapy: 6 rounds of ABVD

Tags abvd, chemotherapy, Hodgkin Lymphoma, hodgkin's lymphoma, Patient Stories, Treatments

Categories
Metastatic Non-Seminoma Patient Stories Testicular Cancer

Josh’s Stage 3A Testicular Cancer Story

Post author By Chris Sanchez

Post date June 12, 2024

No Comments on Josh’s Stage 3A Testicular Cancer Story

June 12, 2024

Josh’s Stage 3A Testicular Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

When he was just 24, Josh was diagnosed with stage 3A testicular cancer.

Josh’s diagnosis came as a rude shock given his youth and excellent physical condition. He maintains a healthy lifestyle, has no vices, and loves to join triathlons. That said, he had been experiencing several symptoms for some months before his diagnosis, including pain in his torso and shortness of breath, which were easy to shrug off but in retrospect were suspicious.

Armed with a positive attitude, Josh decided to fight his cancer by undergoing chemotherapy. His doctors put him on 3 cycles of bleomycin, etoposide and cisplatin (BEP).

The succeeding months of Josh’s life were traumatic and difficult. Among other things, he experienced serious side effects, including a significant reaction to a medicine there was no substitute for. He also had to face the possibility of becoming infertile. However, his good attitude combined with successful treatments helped him get through those challenging days.

Josh now shares his story with us to grow awareness of testicular cancer and to fight the stigma attached to it; the importance of finding a community that can provide support, and of giving back to said community as well; and the significance of staying positive even when times get tough.

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

Name: Josh T.

Diagnosis:

Testicular cancer

Staging:

Stage 3A

Initial Symptoms:

Pain in his chest, lower back, and abdomen

Shortness of breath, especially during exercise

Mass found on one testicle

Treatment:

Chemotherapy: bleomycin, etoposide and cisplatin (BEP)

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

Thank you for sharing your story, Josh!

Inspired by Josh's story?

Share your story, too!

Related Cancer Stories

More Testicular Cancer Stories

Ben F., Testicular Cancer, Metastatic Symptoms: Hard, swollen testicleTreatment: Surgery, laparoscopy, orchiectomy

Josh T., Testicular Cancer, Stage 3A

Symptoms: Pain in his chest, lower back, and abdomen. Shortness of breath, especially during exercise. Mass found on one testicle.
Treatment: Chemotherapy: bleomycin, etoposide and cisplatin (BEP)

Mikael H., Non-Seminoma, Stage 1

Age at Diagnosis: 32
1st Symptoms: Fatigue, one swollen testicle
Treatment: Surgery (removal and reconstruction), radiation, hormone therapy

Steve L., Non-Seminoma, Stage 4

Age at Diagnosis: 25
1st Symptoms: Grape-sized tumor on neck; hip and pelvis pain; ultrasound revealed tumor on right testicle
Treatment: Chemotherapy (BEP), removal of right testicle, lymph node resection (RPLND), and tumor dissection in the neck

Hugo T., Non-Seminoma, Stage 2B

Age at Diagnosis: 21
1st Symptoms: Pea-sized lump on right testicle
Treatment: Surgical removal of right testicle, lymph node resection, chemotherapy

Matthew O., Non-Seminoma, Stage 3C

Age Diagnosed: 24
1st Symptoms: Fatigue, one swollen testicle
Treatment: BEP chemotherapy, surgeries (including complications)

Steven C. Diagnosis: Non-Seminoma Testicular Cancer Symptoms: Enlarged left testicle, tenderness in left testicle, lump in back (retroperitoneum) Treatment: Orchiectomy, chemo, retroperitoneal lymph node dissection

Josh T., Testicular Cancer, Stage 3A

Symptoms: Pain in his chest, lower back, and abdomen. Shortness of breath, especially during exercise. Mass found on one testicle.
Treatment: Chemotherapy: bleomycin, etoposide and cisplatin (BEP)

Tags BEP, bleomycin, chemotherapy, etoposide, metastatic cancer, non-seminoma, Patient Stories, surgery, Testicular Cancer

Categories
Ovarian Patient Stories

Tiffany’s Stage 3A Ovarian Cancer Story

Post author By Chris Sanchez

Post date June 12, 2024

No Comments on Tiffany’s Stage 3A Ovarian Cancer Story

June 12, 2024

Tiffany’s Stage 3A Ovarian Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

33 year-old Tiffany is undergoing treatment for stage 3A ovarian cancer.

Tiffany was about to embark on a yearlong trip when she received life-altering news, a cancer diagnosis. Her diagnosis not only forced her to postpone her trip, but also convinced her to undergo IVF egg retrieval in order to preserve her ability to have children later on.

Tiffany is in the midst of her ovarian cancer treatment and, as of her interview, was steeling herself to undergo major surgery. But she has many reasons to be positive about her future. She shares her story with us to help others in the same situation.

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

Name: Tiffany L.

Diagnosis:

Ovarian cancer

Staging:

Stage 3A

Initial Symptoms:

Severe bleeding after insertion of IUD

Discomfort and pain after working out

Treatment:

Chemotherapy: Carboplatin and Taxol

Surgery: Total hysterectomy

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

Table Of Contents

Tiffany's Stage 3A Ovarian Cancer Story
Introduction
Discovery and diagnosis
Treatment plan
IVF
Treatment
Chemotherapy: Carboplatin and Taxol
Side effects
Surgery: total hysterectomy
Shifts and learnings
Support
Realizations
Advice
Related Cancer Stories
More Ovarian Cancer Stories

My biggest advice is to be really honest with yourself first.

Like, really checking in, are you feeling something or not?

Introduction

My name is Tiffany. I’m based in Austin, Texas. I’m 33 years old.

I love pole dancing, contortion, and I’m learning how to draw for fun, as well as watercolor in my free time.

I’ve been diagnosed with ovarian cancer, stage 3A.

Discovery and diagnosis

I was supposed to go travel abroad for a year in 2024, and was supposed to leave the first weekend of January. Didn’t want to carry a year’s supply of birth control with me, so I decided to get an IUD.

I had an annual exam at the gynecologist, just standard stuff, and then that was when I mentioned an IUD, and so we got that inserted. We did the normal stuff that you would do during the annual exam. The gynecologist didn’t find anything weird then.

At first, the IUD was fine, it wasn’t too painful or anything. About a week after it was inserted, I started bleeding like crazy.

I had my strings checked a month later, and that was okay, too, but I was bleeding a lot. It was like I was soaking through a heavy pad every hour or so. And so I just left it because it went away eventually.

But a couple weeks after the string check, I started bleeding a lot again, and I didn’t really stop bleeding until they took it out. I was having heavy bleeding, and then it would it would kind of slow down a bit.

It just went on for weeks. So that’s why I called them to double check to make sure it was okay.

I called them probably mid December or so. Because usually what happens is like, you call them and they just tell you, oh, it’s normal. It’s an adjustment period for the IUD, you’ll be okay. But I’m leaving in a few weeks. I need you to make sure this is okay before I go abroad.

So finally, they got back to me and they’re like, okay, we’re gonna do an ultrasound to check. I remember going in, I was like, I’m pretty sure this IUD is misplaced. I remember the sonographer going through everything. And then I looked at the screen and I saw this huge hole.

I can’t read the graphics, but I saw her face and I was like, what is going on? I’m pretty sure there’s something more than just this IUD problem. But she’s not able to tell me what’s happening because I don’t think she’s allowed to by law.

I almost was able to talk to the doctor right away, but then I actually had a work meeting, so I had to schedule it for I think the next day or something. I was just really anxious for 24 hours or so. And then the next day I went in and the doctor was like, hey, look, we found a gigantic cyst.

We don’t know what it is, the doctor said. I’m going to need to refer you to a gyno oncologist. Like I’m supposed to leave next week. Can I get an appointment right away? And she’s like, yeah, I’m gonna try to see if we can bump you up. And then she ran this blood test for the tumor marker, CA 1 25, that same day. So the new doctor can get all the results and stuff.

So I had an appointment I think the next week, right before I was supposed to leave. I was like, well, there’s a huge thing in me, regardless of it being cancer or not, I need to take this out. So I probably do have to postpone my trip. There’s no way, you know, this person can just take it out in a week. So, yeah, I postponed my trip.

In my head I was like, okay, maybe it’s just postponed for a few weeks or a month. Maybe I can head out in February or something, which is not a big deal. But by that time, I had already quit my job because that was the plan.

My last day of work was right before I was supposed to leave. It it just put me in a weird position because, I was like, well, I might leave soon anyway, so I guess it’s just like a month, I don’t need to get my job back. So I didn’t really bother with it. But also, it was just like a strange, in-between time where everything was up in the air.

So I went to the new doctor, the gyno oncologist. And she basically was like, I need to see an MRI. So I had to get that done the next week.

And then after that, the follow up appointment, she didn’t really say it was cancer or anything, actually, even though my blood work was over the chart, my CA 125 was like 4000 and the standard was like 35. So it was crazy high. But, different things can affect your CA 125, such as endometriosis, which I wasn’t diagnosed with. All I knew was that I had P COS. [Polycystic ovary syndrome (PCOS) is a hormonal disorder in reproductive-age women, causing infrequent or prolonged periods and elevated androgen levels.]

So when I talked to her after the MRI, she wasn’t definitive that it was cancer, but she wasn’t saying that it wasn’t either, because they don’t really tell you until they really go in there anyways. So she basically she knew that she had to take out the ovary that was attached to the tumor. But she asked me, if it’s cancer, what are your thoughts about having kids? Um, because if it’s cancer, usually they take everything out.

It took me a few days to get back to her because it was just so shocking to think about. We ended up deciding that we would keep the other ovary in there, even if it’s cancer, because we wanted to preserve my fertility and see if we could go through the I VF route.

Going into surgery, the doctor thought it’s probably borderline because it’s rare that someone in their 30s would have ovarian cancer. But, I mean, it could happen. She said that if it is borderline, then I probably wouldn’t need chemo. It ended up not being borderline.

What happened during surgery is that she took the tumor out with the ovary, and she said the tumor was hard to take out. It wasn’t like a solid tumor, where, she could just pick it up with the robot and take it away. It was mushy and weird, gross-sounding.

The surgery took five hours, I believe, which was way longer than I expected because, besides taking it out, she also had to wait for a biopsy to see if it’s cancer and then after it’s cancerous, she does surgical staging. So she would swipe samples of different areas of my pelvis. I think it was bladder, bowels, uterus.

She took the omentum out for biopsy to see if there’s any cancer cells there. So that’s also probably why it took five hours. I took up pretty much the rest of her afternoon, so I didn’t really see her until the next day. And that’s when she told me that, hey, it is cancer.

But we didn’t know the staging; we just know that it’s probably more than likely, more than stage two, based on what I saw in there, but not definitive. Two weeks later, during my post-op appointment, I got the report.

So the original report says there were cancer cells in the omentum. So that would put me in stage 3A. But there was another part of the report where they weren’t exactly sure where the origin site is for the cancer.

So they were suspecting that it’s either primary ovarian or possibly could be from the uterus or it’s synchronized cancer, because the type that I have was called an endometrioid ovarian cancer. That might come from endometriosis. So they are thinking that it could be synchronized, but for now they are treating it as a primary ovarian cancer.

So it’s like still not definitive in a way. A little strange because I think the staging changes depending on the primary side.

So if it’s ovarian primary, it’s like stage three, if it’s uterine primary and it’s in the omentum, that could put me in stage four. But then if it’s synchronized then it could be stage one for both. So it’s very confusing. The staging kind of tells you the prognosis, but then all the information data that they have are for like older women. So then it’s not like that information is for my population.

At this rate, like honestly, I don’t look at my prognosis because none of the data is very specific to my population.

So I went ahead and got a second opinion too, just because why not? Insurance covers it. And I got a second biopsy at MD Anderson. And the report came back the same.

So that’s a good thing, that it’s the same, I guess. Ultimately they’re not really going to be able to really find out exactly what it is until they take everything out.

Treatment plan

After the doctor told me about my ovarian cancer diagnosis, she gave me a treatment plan.

So I was going to be having three rounds of chemo, surgery to take everything out, and then three rounds again.

So the midway point for the surgery, they just wanted to get the chemo in me first, but because I already would have had three rounds of chemo by then, they might not be able to really biopsy enough. There might not be enough cancer cells there for them to find out what is really going on.

IVF

About a week after the report and discussing it with her, I started my IVF cycle, so I started freezing my embryos.

That wasn’t fun. It was a lot of injections, doctor’s appointments., and going back and forth, trying to get a discount.

My insurance didn’t cover the IVF cycle, so I had to look into different organizations that would provide discounts on the clinic. And there are discounts for cancer patients, I think in most clinics, at least mine did. And I was able to get help from Li vestrong and the H eart Beat program with Walgreens.

The Heart Beat program basically gave me all the medication for free, which was really helpful because the medication itself, it’s like $10,000. And then the Livestrong also helped with the medication as well. It was like a 20% discount on certain things through the clinic.

I think we were fortunate in a sense, because I know a lot of women, they have to go through multiple cycles to freeze 1 or 2 embryos. We were lucky in a sense that we only had 1 shot, just 1 cycle before chemo started. We were able to freeze 8 embryos, which was amazing.

The clinic helped. They were the ones who told me about Livestrong. And they were the ones who applied on my behalf for the Walgreens Heart Beat program.

I think the complicated part, at least with my clinic, it was more like I wasn’t really sure who should be doing what part of the application process. It might have just been a clinic issue, but they weren’t very clear on who is starting? Am I the one applying directly or are they doing it on my behalf? So I had to do a little bit of work in that regards. But ultimately they were the ones who found the programs.

My doctor was the one who referred me to this clinic, so it seemed like she already had a relationship with the reproductive endocrinologist. So before I even went on my consultation, she already knew what was going on.

In terms of figuring out financially, I think we were fortunate in a way, because we had saved up for a trip and so we already had that nest there. If it wasn’t going to cost like that, we would have just done it anyways.

My husband and I, this has been a lot of discussion between like having kids or not. He’s the one that really wanted the kids. I was more like, could be maybe. Maybe not. It was just like, okay, might as well do this because if we don’t do it, we might regret it later.

This is a little bit morbid. If I, you know, pass away in 2 years, I felt at least I left something for my husband—a part of me there for him.

So, the IVF process. The first appointment was just discussing the different options. So I had the option of just freezing the eggs or embryos. But you still have to go through the IVF process. It essentially means they’re just taking the eggs out, the embryo part comes later.

During the process, they would monitor your follicles to see how they’re growing. Usually they want you to start, I think, like day 1 or 2 of your period. Um, I didn’t. I was on a timeline, so it didn’t pertain to me But I also luckily had my period the first day I saw her. So it kind of worked out in that sense.

So the first appointment, the doctor would check to see how many eggs are already there. In a way it was fortunate I had PCOS, so I had extra eggs. Apparently, if you have PCOS, it’s better for the process because you have more eggs.

Once she thinks you’re ready, you will start doing your injections. I did two medications, on my abdomen. The first injection was just so scary because you guess your spouse or someone could help you, but I just did it on my own. The medication helps grow the follicles.

I only had one ovary to do this, for others they might have two. But for my one ovary, she saw like 18 or something on there already. So they’re trying to grow everything at the same time essentially with the medication, but they don’t want you to grow it so fast, your ovary will get too big and then you will get hyper stimulating ovaries, which will cause a lot of pain.

They want to monitor you, every other day or so with blood work to check your estrogen level and also ultrasound. So I had to go to the clinic every other day. They gave me a different medication to start, to kind of balance it out so it doesn’t overgrow.

And then after about ten days, they decided that it was time for the trigger shot. They’re checking the size of each follicle. They want them all to be as big as possible. I think I had three that were like 20mm or something, I can’t remember. And that was when they decided it was time.

So then I did the trigger shot, and then the day after, they did the egg retrieval. During egg retrieval, they put me under, and then the process took like ten minutes.

And then they woke me up and they were like, we took out 22 eggs or something.

Treatment

Chemotherapy: Carboplatin and Taxol

Right after, a week after IVF, I started chemotherapy to deal with my ovarian cancer.

I got a week break between IVF and the chemo cycle. And I went back to Jersey for a wedding.

Okay, so the chemo regimen I’m on, it’s carboplatin and taxol. My chemo regimen is every 3 weeks. I would say it’s only bad the first week, and then it’s pretty much back to normal the next two weeks.

I did so much research before, I feel like I already knew everything before I started. And also, before chemo, they did like a chemo teach where I met with one of the physician’s assistants and they gave me a binder of information. So I already had an idea of what to expect.

Side effects

In terms of side effects, I think the major one is the hair loss. That pretty much happened after cycle 1 and throughout cycle 2 as well. But I think after cycle 1, I was just so anxious, I was like, I’m going to shave it off anyways. Just get it over with.

When I was reading online, I wanted to know when my hair loss would start. And most people said it would start about the second week. So I thought, I wish I knew that because I remember after the first, for like a week, I was just obsessive about my hair.

I would wake up and be like, are you going? Are you leaving me yet? And then when it was still here, I was like, oh my gosh, maybe I’m one of those lucky people. I wish I would have known that it really would start like after the second week.

I was never too attached to my hair. Or at least I thought so. Some women love their hair and they want it to look a certain way. I guess if I cut it and it’s ugly, I didn’t care too much, would be upset for a minute, and then I’d be like, okay, it’s gonna grow back. You’ll be fine.

When my hair started falling off, when I started seeing strands of hair on my pillow, It was just horrific to see that much hair coming out. I did get a little bit emotional. I think because I didn’t have that much time to process everything. Just seeing the hair kind of hit me in the face a little bit.

And then I felt really concerned about how I looked like without hair. I wasn’t sure if I would still feel attractive or if my husband was still find me attractive.

Ultimately, when I shaved my hair off, I was I was kind of surprised that, I thought, I still look good without the hair. I went on a lot of shopping sprees, just for new styles and wigs and makeup stuff. So I think that kind of helped.

Right now, I have days where I’m like, I really miss my hair. Especially like when I go out and I see people with beautiful hair, I’m like, oh, I really miss having hair.

But then most of the other days I’m just like, oh, how would this look on me now? I feel like I get to play a little bit with a different style. And then sometimes I’m also kind of like, I wonder what style is going to stick after this is over. Maybe I’ll adopt some of these new things.

So other side effects have mostly been swollen hands. I’m also having a slight neuropathy, only on my index finger. Very strange. And then a little bit of brain fog, but that tends to fade away after the first week.

Surgery: total hysterectomy

So my next milestone in my ovarian cancer journey, I guess, is my surgery. That’s coming up on May 20th. I get 4 weeks in between surgery and chemo, which means I get an extra week to play.

So the surgery I’m getting will be a total hysterectomy. They’re going to be taking out my remaining ovary, my uterus, the fallopian tube that attaches to the ovary, and my cervix as well.

I am incredibly anxious about it, because once they take out that ovary, that puts me in surgical menopause. And for women that are in forced menopause, I’m high-risk later on for osteoporosis as well as heart disease.

Not to mention, I’ve been reading a lot of other women’s experiences that are around my age, mostly breast cancer survivors. It sounds like there’s like a thing called vaginal atrophy that will happen or might happen as well.

Also, all the other stuff that comes with menopause, like hot flashes. I’m very, very scared just about what might happen.

Also they say that sometimes you don’t get those symptoms right away. So it’s not like I’m gonna wake up and it happens. It might take a few weeks before it happens.

They haven’t really talked to me about post-surgery. I just know I get a 4-week break and then I go back for chemo, but I do believe it’s the same chemo.

… don’t brush away that little voice that’s telling you something is probably wrong.

Shifts and learnings

Support

I felt like because of my ovarian cancer situation, everyone was extra nice to me. I would say I’m very fortunate, because everyone is being so supportive.

My mom lives in Jersey and flies here every cycle to help me out, and my husband has been very supportive, too. My friends like giving me rides and everything, too.

I think it’s going pretty well for what it is.

Realizations

So when I look back, I do feel like I had the symptoms of ovarian cancer, I definitely ignored them. I do crazy workouts, so, yeah, I’m going to be like, there’s some tightness there or I just kind of brushed it off. but when I look back, I was kind of in pain.

I was remembering how there were days after I trained and I would be like, wow. Training really hurt today. And I really don’t want to do this post because it’s putting a lot of pressure in my abdomen and it’s really pretty uncomfortable. But I just brushed it away.

And so I think that if I did not get that IUD, I think it would have gotten me eventually, Because I’m young and healthy. I didn’t think of it as anything. I mean, I didn’t really bring it to the doctor or anything, but even, like, with the whole IUD thing, I felt like I had to really push for them to, take a look at it. And so, it is very important, don’t brush away that little voice that’s telling you something is probably wrong.

I think it’s mostly realizing, this sucks, but I still get to do so much cool stuff later on. Hopefully.

It sucks that I didn’t get to travel, but after this, maybe I can I can travel again, but it’s gonna look a little bit different than I planned because I’m not going to be able to just leave for a year now because of all the monitoring that they do. Kind of realizing that I’m still going to be able to see everything.

But I honestly think what has really gotten me through this is just me on the pole. Because I’m still able to pole dance, and contort, which I don’t understand how sometimes. So that has been pretty incredible, very helpful as well. Like for my mental health, too.

But I think what shifted in the way I’m thinking about it is to just appreciate what I can do, versus going after certain things and being frustrated with it. So I kind of see it in like a new perspective. Oh, I just took a class, and then I never looked back. Yeah.

Pole dancing is like a challenge. I love it because as long as you put the work or the training, the time into it, you will see results. And it’s like a way to express yourself in whatever way you want it to be.

So it doesn’t have to be sexy. It could be like emotional. It could be very athletic or just like, whatever you want. And I really love it for the art form and also for the physical challenge. And also the pole community is incredible. I made so many friends off of it, and it’s just a great place.

Advice

My biggest advice from everything that I’ve learned in my ovarian cancer journey is to be really honest with yourself first. Like, really checking in, are you feeling something or not? Even if the doctor thinks you’re being a little too much, just push them to do something because you never know.

And then really do your research before going to the doctor, because, hopefully you have a good doctor, but, if you don’t, you have the knowledge to back up what you are suspecting. And then be very assertive as to what you’re asking them for.

I would say something like, hey, I have a concern with this. Can we do a scan or something, instead of having them lead the way? You kind of want to almost lead the conversation instead.

And then also be honest with them as to what you’re feeling, too, because I think sometimes people brush away symptoms because they’re scared of what it could be. It’s better to know what it is and deal with it earlier versus later.

Thank you for sharing your story, Tiffany!

Inspired by Tiffany's story?

Share your story, too!

Related Cancer Stories

More Ovarian Cancer Stories

Cheyann S., Low-Grade Serous Carcinoma, Stage 4B

Cancer details: Makes up approximately 10% of cases of serous ovarian cancer.
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Tags CA 125, Cancers, chemotherapy, Fertility Preservation, Heart Beat, IVF, ovarian cancer, Patient Stories, PCOS, side effects, surgery, Taxol, Treatments

Categories
Colorectal CRC Patient Stories

Andrea’s Stage 3 Colorectal Cancer Story

Post author By Chris Sanchez

Post date May 23, 2024

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May 23, 2024

Andrea’s Stage 3 Colorectal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Andrea, a nurse practitioner from Spokane, WA, got through stage 3 colorectal cancer.

Andrea’s symptoms began when she was about 7 months pregnant with her son—bloody stool and lower back pain and pressure, progressing to more serious symptoms like rectal pain during childbirth and as many as 20 bloody bowel movements daily—but she was consistently told that they were due to her pregnancy. A colonoscopy, done after the symptoms progressed significantly and her husband was able to get some help, finally diagnosed her stage 3 colorectal cancer.

Treatment–chemotherapy, radiation and surgery–as well as a lot of support, a can-do attitude, and self-advocating, eventually helped Andrea get better. Her story isn’t without some twists and complications, though, most especially an agonizing period during which she thought her colorectal cancer might have progressed to stage 4. Thankfully, this was a false alarm: she was actually already cancer-free, and she remains so to this day.

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

Name: Andrea P.

Diagnosis:

Colorectal cancer

Staging:

Stage 3

Initial Symptoms:

Frequent bloody stool

Lower back pain and pressure

Rectal pain

Severe stomach cramps

Treatment:

Chemotherapy: 5-FU

Radiation treatment

Surgery

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

Table Of Contents

Andrea's Stage 3 Colorectal Cancer Story
Introduction
Initial symptoms
Diagnosis and Reaction
Treatment
Chemotherapy and radiation
Surgery
Side effects
Support
Keeping Busy
Stage 4 Scare
Remission
Lessons and Learnings
Related Cancer Stories
More Colorectal Cancer Stories

… I was chosen to go through this fight so I could help bring awareness to other people.

We were chosen for a reason, and we need to be strong through this fight.

Introduction

I’m Andrea, I’m from Spokane, WA. I’m 34 years old.

I am a nurse practitioner. I was a nurse for a long time, going on about ten years. And then I went to nurse practitioner school, and now I’m a nurse practitioner in the emergency department. I also was a nurse educator for some time, so I taught nursing students.

I’m married; my husband is a nurse anesthetist who works at one of the local hospitals. We have two beautiful kids: our daughter is going on 5, and our son who’ll be 3 this year.

If I’m not working, I love working out, going to one of our local gyms. We do CrossFit, and that’s like my hobby. It is like my home away from home. Working out, doing those things and spending time with my family and spending time with my friends. I have a really close group of girlfriends, and we tend to do a lot of our little girl’s nights.

I think I’ve been much more outgoing since I’ve been diagnosed and not holed up in my house; I used to be such an introvert. Like, I just want to stay home. I don’t want to go do anything. But after this I’m like, no, I want to go do all the things.

Initial symptoms

My colorectal cancer story starts when I was about 7 months pregnant with my son in June 2021. That’s when I started noticing blood in my stool.

The doctors shrugged it off. Because of my pregnancy, they said it was normal. You can have hemorrhoids, they said. So I didn’t think anything of it.

But it just kept getting worse. I started to have a lot of lower back pain, as well as this feeling of back pressure. I always felt like I needed to go to the bathroom.

Even then, I was told that it was because my baby was sitting really low. He’s sitting posterior, they shrugged. Just pregnancy stuff.

I gave birth to my son on August 9. While I was in labor, I was having an incredible amount of rectal pain. I remember telling my husband, gosh, this hurts so bad—there’s no way this is just a hemorrhoid. I was having contractions back to back, but they paled in comparison to the pain.

Give me the epidural to take the pain away, I said to my husband. Again I was told that it was because the baby’s just sitting very low. But I had had a daughter before, and I knew that this was completely different.

Come October and November, I started to have even worse symptoms. Each and every bowel movement was bloody—worse, sometimes all I would be excreting would be blood. I was having 15, 20 bowel movements a day that were just blood.

I asked my OB to refer me to a GI doctor in Spokane. While they did get me in relatively quickly, in November, once again, my symptoms were only chalked up to pregnancy.

I was told: you’re way too young. You just had a baby. You have a bunch of hormones going through you. You’ve had hemorrhoids. Basically just dismissing my concerns. But at least I did get them to commit to a colonoscopy at the end of December or the start of January.

But something happened in December that sped things up. I was at my cousin’s basketball game, and I had a sudden really severe stomach cramp. And I went to the bathroom and it was all blood clots, the worst one I’ve had. It was just bright red blood with dark red clots.

My husband contacted one of the GI docs that he works with and was like, listen, no one’s taking my wife seriously. Can we please get her in? And the GI doctor went, bring her in next week. I’ll scope her right away.

And December 20th is when I got my colonoscopy and colorectal cancer diagnosis.

Diagnosis and Reaction

I was 32 years old when I was diagnosed with stage 3 colorectal cancer.

Going into the colonoscopy, I knew it would be cancer deep down. But my husband was so reassuring and supportive; he told me I shouldn’t think like that. So when I went in for the colonoscopy, I actually wasn’t terrified or even anxious.

But when I woke up from the anesthesia, the doctor came over to me. He said: there’s a really big mass there. I’m so sorry.

And I think in that moment, I was like: there’s no way this is my real life. You think it will never happen to you, but it does. The thought in my head was: is it everywhere?

My son was 4 months old at that point in time. My daughter was about to be 3 or 4 years old. I was like, am I even going to see my son turn 1? I was in the middle of nurse practitioner school. Why even finish school? Shouldn’t I just spend as much time as I can with my kids?

I remember the first thing we did was call my mom, who was watching my kids, and I couldn’t even tell her. My husband had to tell her. I got on the phone to my best friend, and I told her. And then I had to FaceTime four of my best friends who knew that I was going in for the colonoscopy.

I could die next month, I remember thinking. It is the most terrifying, sickening feeling. The diagnosis really put things in perspective.

I’m thankful that when my diagnosis came out, my doctor really took charge. The doctor came over and said, we’re getting this looked at today. I’ve already scheduled you for an MRI. I’m getting you a CT scan today. I’ve already talked to an oncologist, a surgeon, a radiation oncologist. I’m not letting you leave until we have a plan for you today.

It was a really long day that day because my colonoscopy was in the morning, and then I had to go through the CT, go through the MRI. Luckily, the doctor fixed it up so that the radiologist would read those scans when I was there.

So I was able to find out quickly via my CT scan that there were no other masses anywhere at that point. The MRI did show the tumor and some lymph nodes, but it didn’t show any masses anywhere else. So I felt some relief that, okay, so far it hasn’t spread.

I went home and all I wanted to do was be around my kids, but at the same time, I didn’t want them to see how upset I was. My mom was trying to hold it together and she was having a hard time.

I tried to be normal, but I hadn’t eaten or drank in that day, so I ended up getting so sick that I ended up having to go to the ER for fluids because I couldn’t keep anything down and kept vomiting profusely. I also think I cried every ounce of water that I had in my body out.

So I ended up calling one of the girls I worked with, and she actually snuck me into the E.R. One of the doctors who is a good friend also knew, as well as the provider who took care of me. That level of support was really nice.

Treatment

Chemotherapy and radiation

My colorectal cancer treatment was a whirlwind of “let’s get your appointments going”.

So I actually got called by the radiation oncologist the very next day and they were like, we want to get you in today. We’re going to map everything out for your radiation.

And then I got called from the oncology office and they said, we want to see you today to go over what your plan is going to look like. And so I ended up going to the oncologist that next day, and, he mapped everything out for me.

He said, we’re going to start with radiation, where you’re going to go under 28 treatments of radiation. And while you’re going radiation, you’re going to have a chemo pump. So you’re going to have continuous chemotherapy infusing. And then once you complete those treatments, then you take a week break from the chemo.

Then you do eight intensive treatments of chemotherapy where you come in and get the four hour infusions. After that, you have surgery.

And after your chemo, we rescan you, we remap and see what your tumor is doing. There is a possibility that if your tumor is gone, you don’t have to have surgery.

But I was like, absolutely not. You’re taking that thing out. We’re not watching and waiting for anything. I had already made my mind up that I was going to have surgery.

So I went to the radiation oncologist later that day and got mapped. So he tattooed my back, my abdomen, mapped where they were going to do the radiation treatments. And then I think the day or two after Christmas, I went and got a port placed for all of my treatment.

And I started treatment January 3rd. So really very quickly, I started my first radiation treatment, and then they hooked me up to the pump that I had to wear 24 -7.

Initially the GI doc said, surgery first. But then when I talked to the oncologist he said, typically if it’s stage one, if it’s just this isolated tumor that hasn’t gone into the lymph nodes, we would do surgery where we cut the tumor out and then we do like a clean up chemo. But mine was very eroded. If I would have waited a couple more months, I probably would have had a perforated colon, that’s how bad it was.

And because I had lymph node involvement, we needed to get the chemo in there and kill what we can. The radiation was to kill the tumor, and the chemo was to stop the tumor cells that were floating around from duplicating and so on. That’s why I had to do the chemo and radiation before the surgery.

Surgery

I underwent a pretty major surgical procedure. They basically went in and dissected the entire tumor, plus did a few things on one side of the tumor and then the other side to make sure that it gets all taken out.

Then they did a temporary ileostomy, where they basically take my colon and bring it out through my stomach to let my surgery site heal. I had to have that for 8 to 10 weeks.

I had to be in the hospital for a couple days, just to make sure that everything was working, and that was the first surgery. And then I had that ileostomy for about 8 to 10 weeks, and then I had to go in and have it reversed.

So they go in and they just basically put my colon back together without that tumor in it. And that surgery was actually a little bit more intense. It was much more painful, even though it was a shorter surgery, and I was in the hospital for about two nights with that one too.

When I got told about the ileostomy, you know, my initial thoughts were like, I don’t care. Do it. I just was in that mindset. Do what you need to do to get me better, I don’t care.

But when I actually came home with the ileostomy, it was a very big mental block for me. I felt like I didn’t want to go out in public since I found it disgusting. I never minded taking care of them on other people, but I never thought that I would have to have one.

And I remember the first day that the home health nurse came over to help me figure out how to change the bag and stuff. I couldn’t do it. My husband had to do it because I was so emotionally distraught from it. And my husband actually just said, you don’t ever have to look at this. I will take care of it for as long as you have it. It took me a couple of weeks to finally get used to it.

And actually one of my preceptors for school has an ileostomy and he and I actually became really good friends. And I remember when I found out I was going to have one, he was like, hey, I got your back. I’m going to walk you through this whole thing. I’ve had mine for years. And he was such a big supporter.

He would talk me through it. He’s like, this is just part of our lives now. He was a big reason why I think I did so well with it, because I had him just there, supporting me through it.

And he knew what it was like to have one knowing that it wasn’t permanent. There is an end in sight.

And when I got it reversed, I just remember the doctor being like, okay, it’s getting reversed, but I’m just telling you right now, it’s not going to be a walk in the park. We have removed a lot of your nerve endings, your colon has basically been asleep for weeks. Basically, you might have to potty train yourself again. And I was like, maybe I don’t want it reversed, maybe I just want to keep it.

And so when I had the second surgery, I remember I was in so much pain, I can’t even remember being like, oh, it’s gone. I just was like, get this pain taken care of. Definitely having it reversed was worse than having it placed. And that took a mental toll on me for sure.

Side effects

So the side effects of the radiation, I didn’t have too many. The most significant was fatigue from the radiation, which was insane. More fatigue than I had when I was pregnant with my son, when I was 12 weeks pregnant and I got Covid. The fatigue from the radiation felt maybe 20 times more than that.

I also had a lot of back pain, aches in my pelvis.

They also had said that we’re radiating your uterus, your ovaries, you’re not going to be able to have any more children. They did give me a chance: we can do what’s called an ovarian transposition, where they pull the ovaries out of the radiation field to try and salvage if you want to have kids. And I was like, listen, I have two healthy babies. I need to be there for them. I can’t delay this any longer.

As for side effects from the initial chemo pump, I didn’t have any other than my fingertips turned different colors, like I dipped my fingertips in self-tanner. And everyone would be like, whoa, your fingertips are brown. My oncologist said that the chemo regimen I had to do was called 5-FU, and he was like, oh, it’s the 5-FU fingers. It’s totally normal to have that.

But later on, the side effects from the chemotherapy got way more intense. I went into the first treatment and after the treatment, I felt fine, just a little tired. I was told, though, that the side effects would really hit me—and they did.

Tuesday night after my very first infusion, I ended up so violently ill that I passed out. I got rushed to the emergency room at one in the morning because I was so sick.

When I got to the E.R., my blood pressure was in the 70s. My heart rate was super high. They were like, she is so severely dehydrated, we might need to admit her to the hospital. I can’t even tell you how many liters of fluids they gave me. Every antiemetic possible. I was still so sick.

They called my oncologist. They were like, what do we need to give her? And he was like, you need to give her this specific type of antiemetic. That’s for chemo. That’s really expensive. And hospitals don’t usually carry it. But he’s like, that’s what’s going to keep her out of the hospital.

So after that I went to my follow up appointment. He’s like, we need to do pre-meds on you because that obviously can’t happen again.

And I remember after when I was laying in the hospital after my first treatment, I said, I will not do this anymore. I’m done. I’m done with chemo. I can’t do this for seven more times.

And my mom’s like, you don’t have a choice. You have two children at home. You’re doing this. So we need to figure out what we need to do to make it so you can do this.

So I would pre-medicate, I would get this infusion of this antiemetic that was supposedly only for like chemo patients, before I got my chemo. And then on Wednesday when I got my pump disconnected, I would get fluids and that I did pretty well with that. I really didn’t have any other side effects from the chemo from that point on other than fatigue.

Aside from that, I would usually have to take a nap. I got a little bit of neuropathy towards the end where my feet were really numb and it felt like my feet were asleep, just chronically asleep. Which was pretty common for this type of chemo.

I didn’t lose my hair.

I had so much support and I will always be grateful for it.

Support

I had so much support and I will always be grateful for it.

I’m originally from Portland, Oregon. I have a really close friend group in Portland. I have a really good friend who contacted all my friends in Portland when she heard about my colorectal cancer.

She contacted all my family, all my friends in Spokane, like friends that I have in Arizona. She just went above and beyond, and she basically had them send her a letter of everything they love about me and basically wishes for me and then send pictures. And she put together this book. And so each page was like a friend who wrote a letter to me. I took that with me to my treatments because it was just like seeing how much love and support I had.

My best friend put together a bunch of stickers that said Support Squad Blue for Andrea, and people throughout the hospital were putting them on their water bottles, people I didn’t even know, but worked with her on in her unit and knew how much I meant to her were like wearing, buying these stickers to support me. And so just seeing that was like, so helpful.

I think when you’re literally fighting for your life, I didn’t hold grudges; didn’t get upset or anxious over really little things. I actually had a way better outlook on life when I was going through that because I was like, hey, I don’t know what next week looks like. I’m just going to enjoy everything I can right now, like my children and school.

Keeping Busy

My oncologist was like, you can’t work. You need to just rest. And I’m like, I’m not just going to sit at home and sulk.

So I actually completed my last semester of nurse practitioner school while I was in chemo. And I used my colorectal cancer treatments as my study time away from my kids. So, keeping myself busy and just continuing to push through, really helped me.

But I had days like there there were absolutely times where it would hit me like, I cannot believe that I have colorectal cancer and that this is what I’m going through.

And I would have to go upstairs. I’d lock myself in my room so my kids didn’t see me, and I would completely break down and just have a moment of hysterically crying, like ugly crying. Why? Why is this happening to me? Like, what did I do? And then I’d pop right out of it.

One of my good friends, she’s always like, okay, have your moment in Pity City and then get yourself out of it and let’s go. So I’d always just tell myself that, get out of Pity City. We had our moment, time to get back.

Stage 4 Scare

I had a bit of a scare during which I thought my colorectal cancer might be stage 4, but it hadn’t after all.

I was just starting my job as a nurse practitioner. Right after I completed treatment. Right before I had my first surgery. They wanted to rescan me and see just how much the tumor had shrunk. So I ended up having another CT and an MRI, and I remember being at my very first day of work at my new job, I was training, and I got the MyChart result.

So I opened it up and the first thing I saw was a new lesion on the liver, and my heart dropped. I remember I got through another hour of work, and then I finally just told my preceptor, I need to go. I’ll be back tomorrow.

And I called my husband, and I’m like, I’m stage four. He’s like, what are you talking about? And I’m like, there’s a lesion on my liver.

That day was the worst. Way worse than the day I got diagnosed. One of the most defeating days ever.

I came home and said, we need to plan my funeral, we need to get our things in order. And my husband, at that point, he’s always tried to be so positive. And at that point he literally goes, I don’t really know what else to say other than, we need to get things in order for you. Because he knew, this isn’t good. That day gives me more anxiety and just makes me cringe more than the day I got diagnosed. Because it felt like I had gone through so much for it just to not work.

The next day I remember messaging my oncology team and I was like, can I please can I have a phone call with my oncologist so we can talk about my CT scan? And she goes, yeah, he’ll like, do a telephone call with you or tell a zoom video. I was like, okay. So I went out to my car. I was again at work.

I went out to my car and got on the call, and he had my CT scan pulled up and he was there. And so I was sitting there and I was just waiting for him to tell me. And he goes, you know, the spot on your liver. He’s like, I am 99% sure it’s not cancer. I actually have a call out to the liver specialist to just look at it.

He said, you know, the chemo you have can really damage your liver. And I had actually had on my last chemo, I had labs done in my liver. Enzymes were elevated. And he said, I think this is a piece of your liver that just died from the chemo and is just trying to regenerate. Doc’s calling me right now. She’s reviewing all your images.

So he talked to her and then he got back on. He’s like, yeah, she is pretty confident.

This is nothing to be worried about. So at that moment I was like, oh my gosh. He said, you know, your tumor is actually shrunk significantly. It’s still there. We still need to do the surgery. But yeah, this spot on your liver, I’m just really not concerned about.

Remission

So technically, my colorectal cancer was in remission on the day of my surgery when they pulled the whole tumor out. June of 2022. And I guess at that point, I didn’t necessarily think I was in remission because I was like, well, they still need to scan to make sure they got everything.

They took the tumor out and they take the test, the margins to make sure there was no tumor cells. And I had negative margins, which they said is really good.

But unfortunately I had like eight lymph nodes that had live cells in it. And that puts you at such a high risk for recurrence.

I remember my oncologist being like, you have a 40% chance of going to stage four even with all of this out. And still it’s like a 60% chance of it not happening. Yeah, but 40% is pretty high. Because of that, they were like, we’re going to have you on a really close scan bloodwork every three months for five years.

So it wasn’t until probably my three month scan after that where they didn’t see anything that I was like, okay, I’m officially in remission. I don’t have the colorectal cancer in me anymore.

To this day, I still don’t think I’ve ever gotten to the point where I don’t feel that I have colorectal cancer. It’s just, I think a part of me feels that someday it probably will come back. And I don’t know how to get out of the mindset that it won’t.

Like, even though, my blood work, I get a CT scan, an MRI every three months, and then I get a tumor DNA test where they actually extract DNA from my tumor, and then they draw my blood every three months, and they compare those so they can actually pick up if there’s like, tumor cells floating. Every single one’s been negative since June of 2022.

But I can’t get in the mindset that it’s gone. I just I think that’s just part of it. I just can’t no matter what, I’m like, okay, well, another month where it hasn’t popped up again, but we’ll just wait till the next month like so.

And I think that’s just part of the process of this. Like you just once have once you have colorectal cancer, you’re never going to feel like you’re fully out of it.

Going during the treatment and everything, I felt less anxiety because I think when you’re going through treatment, you feel like you’re actively doing something to get rid of the cancer. When you’re in remission, you feel like a sitting duck, like you’re not doing anything to actively get rid of it, even though it’s technically gone.

So that has been really hard because when I was in treatment, I’m like, oh, every day I’m going in that’s killing more of those cells, and it’s getting rid of it, and you feel like you’re actively taking care of it. And then sitting in remission for the past two years, I think, okay, is this next scan, the one that’s going to pick something up, is this next bloodwork, the one that’s going to pick something up.

You just kind of feel it’s just like a waiting game. I think it’s because, you know, they say you can’t say you’re cancer-free until five years out.

So statistics show that I was 71% at stage three B, which I was I have a 71% five year survival rate. In hindsight 71% is great, but there’s also that 29% rate, that’s not. And so, I also get to the point where like, okay, yeah, I’m two years out from this. Does that mean I only get three years left? So I just get into a negative headspace and you just have to take a lot to get yourself out of it.

There are going to be dark days. There are going to be days where you feel like you cannot go on any longer. I had plenty of those days where I felt like, I cannot, I don’t want to wake up tomorrow. I cannot move on from this.

Just know that we can. There is a light at the end of the tunnel.

There is a bright side, even though you don’t feel like there is.

Lessons and Learnings

I am a huge advocate now for self-advocating.

I’ve had people reach out to me, on Facebook, on Instagram who’ve seen my story and they’re like, hey, I started to have these symptoms. I went to my doctor and my doctor was like, oh, you know, we’ll just follow up in a couple of months.

Absolutely not. You find yourself a new doctor, you go to an urgent care, you go to an ER and you say, this is what I need, this is what I want. You have to push for it. And, you know, I have told people: exaggerate your symptoms a little bit, like if you had one bloody bowel movement, go and you say I’m having multiple bloody bowel movements.

You get the colonoscopy because right now the colonoscopy age is 45, which is so crazy to me. With the rates of colon cancer showing up in people 18 to 35. I read an article that showed rectal cancer is supposed to increase by 112% in patients 18 to 35 by like 20, 35 or something crazy like that. And then colon cancer is supposed to increase by like 114%, just some outrageous number. Then it’s supposed to be the leading cause of cancer death in people 18 to 35.

And yet the colonoscopy age in the United States is 45. I’ve been in ER medicine for ten years now, but I’m a new provider and I’ve actually had a couple young patients come in who have had similar symptoms and they’re like, yeah, my primary doesn’t take me seriously.

And I’m like, we’re gonna call GI here in the ER today. We are going to try and get this figured out. We need to lower the age. But I also understand that with the increased amount of cancer cases and people needing scopes, they’re overwhelmed too. There isn’t enough providers.

I just think that we need to stop making it an age thing like it is. Colorectal cancer is not a 50 year old man’s disease. Someone who is 19 can get it, someone who is 20. And you can do all the right things and still get it.

I have never smoked a cigarette a day in my life; I do not do drugs; I hardly drink alcohol. I work out and I eat relatively healthy. And I still ended up here. And I had genetic testing. I have no genetic risk factors. I have no family history. So it can happen to anyone, it can literally happen to anybody.

Advice that I’d have for anyone in this situation is that there is a reason for everything. There is a reason that we were chosen to go through this fight.

I look at it as like I was chosen to go through this fight so I could help bring awareness to other people. We were chosen for a reason, and we need to be strong through this fight. We need to be there for our friends.

There are going to be dark days. There are going to be days where you feel like you cannot go on any longer. I had plenty of those days where I felt like, I cannot, I don’t want to wake up tomorrow. I cannot move on from this.

Just know that we can. There is a light at the end of the tunnel. There is a bright side, even though you don’t feel like there is. And know that your feelings are validated.

I had people be like, look at you, you’re still here. It’s like, no, you don’t know. You have no idea how this is feeling. And we are the only ones that will know truly how this feels. Know your feelings are validated, but know that you can get through this. I’m always here to talk to anybody who’s going through that.

My other thing is, stay off of the internet. I was in that support group for a little bit, but then it got to the point where I was seeing so many just negative things, stuff that started to bring me down, and I’m like, I had to remove myself from it. Stay off the internet, stay off of social media, stay off of any of that. That is the best advice I can give, because you will go down a rabbit hole of so many things, and that’s not what your body needs.

And your fight is your own fight, like my colorectal cancer fight isn’t somebody else’s. Like we’re all going to be different. Try not to compare it to other cases. Just know that, like your fight’s your own and you’re going to be different.

Thank you for sharing your story, Andrea!

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Treatment: Chemotherapy, radiation, HAI pump

Raquel A., Colorectal Cancer, Stage 4

Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatment: Chemotherapy (oxaliplatin, 5-fluorouracil, and irinotecan)

Andrea P., Colorectal Cancer, Stage 3
Symptoms: Frequent blood in stool, lower back pain, rectal pain
Treatment: Chemotherapy (5-FU), radiation, surgery
Steve S., Colorectal Cancer, Stage 4

Symptoms: blood in stool, changes in bowel habits, feeling gassy/bloatedTreatment: Surgery to remove tumor, Chemo: FOLFIRI, monoclonal antibody: panitumumab, liver transplant

Tags 5-FU, chemotherapy, colorectal cancer, stage 3, surgery

Categories
BRCA2 Chemotherapy Cholecystectomy FOLFIRINOX GAP (gemcitabine, nab-paclitaxel, and cisplatin) Olaparib Pancreatic Cancer Pancreaticoduodenectomy (Whipple procedure) PARP Inhibitor Patient Stories Surgery Treatments

Matthew’s Stage 4 Pancreatic Cancer Story

Post author By Katrina Villareal

Post date March 26, 2024

4 Comments on Matthew’s Stage 4 Pancreatic Cancer Story

Matthew’s Stage 4 Pancreatic Cancer Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Initially misdiagnosed due to overlapping symptoms with his existing condition, Matthew experienced concerning symptoms such as dark urine, pale stool, and intense itching. Eventually diagnosed with metastatic pancreatic cancer, Matthew underwent different combination chemotherapy treatments, including FOLFIRINOX (leucovorin calcium or folinic acid, fluorouracil, irinotecan hydrochloride, and oxaliplatin) and GAP (gemcitabine, nab-paclitaxel, and cisplatin).

Despite setbacks and the grim prognosis associated with pancreatic cancer, Matthew’s tumor responded positively to the new chemotherapy regimen, leading to tumor shrinkage and the disappearance of metastases in the liver. Following a successful Whipple procedure, Matthew emphasizes the importance of not being defined by statistics and advises others facing similar challenges to live life to the fullest while also taking their health seriously.

His story highlights the unpredictable nature of cancer treatment, the importance of advocating for oneself in medical settings, and the significance of cherishing each moment, even in the face of adversity.

In addition to Matthew’s narrative, The Patient Story offers a diverse collection of 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: Matthew R.

Diagnosis:

Pancreatic cancer

Staging:

4

Initial Symptoms:

Dark urine

Bone white stools

Itching on palms and soles

Treatment:

Chemotherapy: FOLFIRINOX, GAP

PARP inhibitor: olaparib

Surgeries: cholecystectomy, pancreaticoduodenectomy (Whipple procedure)

Table of Contents

Introduction
Pre-diagnosis
Initial Symptoms
Going to Urgent Care
Going to the Emergency Room
Bile Duct Stricture
Diagnosis
Getting the Official Diagnosis
Treatment
Discussing the Treatment Plan
FOLFIRINOX Chemotherapy
Switching Chemotherapy Regimens
Post-Treatment Scans
Follow-up Protocol
Words of Advice

Introduction

I live in Hazel Park, Michigan, with my girlfriend Natalie and our pug Monique. Because of the nature of my illness, I haven’t had a job in three years, but in my former life, I was finishing a PhD. I was going to be an academic.

Pre-diagnosis

Initial Symptoms

The most popular narrative surrounding pancreatic cancer is that not only is it very lethal but also very difficult to diagnose. The pancreas is deep in the body. The earlier symptoms are very nuanced, can go unnoticed, and can also be misdiagnosed as a multitude of other things. By the time you’re experiencing symptoms, the cancer has spread outside of the pancreas. I don’t want to say it’s too late, but that’s what conventional wisdom is.

I was diagnosed with Crohn’s disease when I was 25. Gastrointestinal distress, which is one of the more perceptible symptoms of pancreatic cancer, was par for the course for me. I probably wouldn’t have noticed even if I didn’t have Crohn’s. I lost some weight over the months, but it wasn’t until late January 2021 that I started to experience starkly distinct symptoms.

It was the COVID pandemic. I lost my job and moved to a different city to help my friend with his business. His business closed and he moved away, so I was alone when all this started.

I had dark urine and bone-white stool. I didn’t even notice the stool color for a while. At first, I thought I was hungover. I had a few beers the night before so I drank some Gatorade and lay in bed, but the urine did not get lighter.

My skin started to itch. The bathroom symptoms were pretty jarring, seeing urine that dark and poop that pale, but the itching was probably the worst. The palms of my hands and the bottoms of my feet itch. It was worse at night. I never felt anything like it before and those are hard places to scratch.

After a whole night of itching, I put my hands and feet in the tub under hot water to numb the sensation. In retrospect, it’s jarring to think about burning my hands and feet to alleviate the pain, but the itching was that significant.

Not everyone gets the itchiness. There seems to be some controversy because not every pancreatic cancer awareness campaign includes itchiness. I experienced it and it was horrible.

When something started to happen, I sat on it for 48 hours before I finally told someone. It wasn’t the most responsible, but in retrospect, not that bad. I was in a long-distance relationship with a woman I knew from graduate school. I told her and she said, “You should go to the doctor.”

I have a lot of medical anxiety. I have never been a good patient. For someone with such anxiety about doctors and hospitals, I needed someone to tell me.

Going to Urgent Care

I had recently moved to Durham and didn’t even have health insurance, but I went to an urgent care center. My blood test results showed that my bilirubin was high. We get some more tests back. The nurse said, “You don’t have a doctor here yet and these test results are troubling. You should go to the ER.”

Going to the Emergency Room

I went home to sleep because I hadn’t slept in three nights. I was so tired that despite the itching, I passed out. Early the next morning, I went to the ER and that was the beginning of my journey.

They admitted me to the hospital and ran some more blood tests to see what was going on with my liver enzymes. They did an ultrasound and an endoscopic ultrasound.

Bile Duct Stricture

They found that there was a stricture in my bile duct. Your liver produces bile, a digestive enzyme stored in your gallbladder and then released into your small intestine to digest fats and other foods. The tube that brings the bile down goes through the head of your pancreas. That tube had a stricture, so it was closed off. When bile can’t be distributed normally, you end up depositing it in your blood and your flesh, and that causes jaundice and elevated liver enzymes.

With the endoscopic ultrasound, they were able to place a stent in my bile duct in the hope that it would stretch it out. They told me to come back in a few weeks to have another endoscopy and remove the stent.

There was no sense of urgency. I was an otherwise healthy person with a history of colitis. They didn’t think that this was anything scary.

After they removed the stent, the symptoms came back, so they decided that it was my gallbladder causing the symptoms. With pancreatic cancer, it’s very common for people to assume that it’s a gallbladder issue. They decided to take my gallbladder out. After the surgery, the symptoms return.

It was late April. I went to my gastroenterologist’s office, who was the one who did the endoscopy. She said, “I don’t know what’s happening, but you for sure don’t have cancer. We have done so many brushings and you definitely don’t have cancer. If you have cancer, I will roll over in my grave.” I left her office feeling pretty confident.

Diagnosis

Getting the Official Diagnosis

Three hours later, I got an automatic notification on my phone from MyChart. One of my cytology reports came back. It said adenocarcinoma. I didn’t know what that meant, but I knew it wasn’t good.

I sat with that for about two hours. Then the surgical oncologist who did my gallbladder surgery called me. My case got automatically referred back to him. He was out of town and called me using his personal cell phone.

I told him, “This lady told me I definitely did not have cancer and now I do so I’m freaked out,” and he apologized. My surgeon is the salt of the earth. He calmed me down. I don’t know if he remembers it this way, but I’ll never forget this conversation. He said, “If this is cancer, the tumor’s very small and I should be able to get this. I’m confident.”

The area in which they found the adenocarcinoma is called the ampulla of Vater. Everything in this part of the body is pretty small and overlapping so pancreatic cancer could be an explanation. But given my age and, let’s face it, the taboo around death, no one was talking about that.

When pressed, the doctor told me ampullary cancer, which has a higher survival rate and is still incredibly rare for someone my age but less rare than pancreatic cancer in the same age category.

Treatment

Discussing the Treatment Plan

Because of the size and the layout of this part of the body, they do the Whipple procedure, also called the pancreaticoduodenectomy. They do the same surgery for ampullary cancer as they do for pancreatic cancer.

Five days after the phone call, I was in his office and he said, “I’m going to remove part of your pancreas and part of your small intestine.” I didn’t have a gallbladder, but that also would have gone including part of my stomach.

My surgeon told me that they cut me open and, contrary to what they thought, found a tumor on the head of my pancreas that had spread outside of the pancreas. Metastatic pancreatic cancer is considered inoperable so when they saw that, they closed me up.

Because of my age and because they suspect that I’m a BRCA2 mutation carrier, the surgeon said, “We have to confirm with genetic tests, but I’m pretty sure you have this particular genetic abnormality. If that’s the case, then there are targeted therapies that might work for you.”

He said, “This is a mean cancer. But because of your particular situation, after treatment, we might be able to try the surgery again in a year.” For pancreatic cancer, surgery is the only long-term survival solution. Chemotherapy and radiation are life-extending, but they’re not curative. He was pretty confident, at least in the context of a lethal diagnosis.

Later that day, he introduced me to my oncologist. He was not as confident. When pressed, he said, “With treatment, you might have 1 to 3 good years left, but that’s it.”

FOLFIRINOX Chemotherapy

This was at the beginning of May 2021. My wound had to heal. Three weeks later, I started chemotherapy. Like a lot of other people with metastatic pancreatic cancer, I was given FOLFIRINOX, which is five different drugs. It’s awful. Chemo combinations are all awful, but FOLFIRINOX was really, really abrasive.

I had a scan after three months on FOLFIRINOX. The oncologist said, “Your tumor shrank a little bit,” but you can tell from the way he’s telling me that it could be an imaging error or a minute retreat that it’s barely perceptible.

At my next CT and MRI three months later, the tumor grew. It had metastasized to my liver so things were not looking good. At this point, I was not confident that I would be a special case or a miracle. I thought this was it.

Switching Chemotherapy Regimens

My oncologist switched me to a different chemotherapy combination. He told me there was a combination that some researchers found was promising for people in my situation. It was gemcitabine, nab-paclitaxel, and cisplatin (GAP).

I was honestly relieved because after being on FOLFIRINOX for almost six months, the neuropathy had gotten so bad that I couldn’t get out of a chair by myself. I needed someone to hoist me up. I was pretty thin at this point. It was miserable.

On the new chemotherapy regimen, my quality of life improved dramatically. By the time my first set of scans came around three months in, some of the spots on my liver had started to disappear. I did three more months of chemo and made it through.

I didn’t lose my hair. I’m six feet tall. I was 215 lbs when I was diagnosed and miraculously maintained a healthy weight so I’m very thankful for that. At this point, I thought I was still dying sooner rather than later so I was trying to have fun and it certainly made having fun a lot easier.

Post-Treatment Scans

In March 2021, he looked at my scans and, if memory serves, they could not identify cancer outside of the tumor.

Almost a year to the day, they attempted to do the Whipple and, this time, it was successful. When Dr. Allen came into my hospital room, he said all of my margins were good and the lymph nodes they tested were negative.

Before this, they couldn’t see any cancer on the CT or MRI, but that didn’t mean that my peritoneum wasn’t covered in cancer. That just meant that they wouldn’t be able to tell until they got in there. They were pleasantly surprised that things had worked.

Follow-up Protocol

The last scan was a lot smoother than the others, but they’re incredibly difficult. I get a scan every three months for the next six years, but the chances of me living out those six years are astronomically small. Pancreatic cancer has a remarkably low five-year survival rate. It’s unlikely that I will see all of that time, at least on paper.

Words of Advice

It’s important to remember that you are not a statistic. I was diagnosed with something I wasn’t supposed to have at my age. It was very unlikely. It was supposed to kill me and I didn’t die so, in a sense, I beat the odds not once, but twice.

People think that pancreatic cancer is an old person’s disease. I think that’s why no one ever looked because no one ever even thought that I could have pancreatic cancer. I’ve heard over and over again that I’m too young. Statistically speaking, they’re correct. For people under 35, it’s incredibly rare, but there is a difference between statistical analysis and what statistics are for, and encountering a patient one-on-one.

Treatment is not linear. Pancreatic cancer is often thought of in linear terms as a quick, short trajectory to death. We assume that if treatment will work, it will work immediately. You don’t take one step back and one step forward. In my experience, that’s not true. Sometimes things get worse before they get better and it’s not a reason to lose heart.

Have a drink, eat the cheeseburger, and live your life to the extent that you can. That’s how I lived. Take your health seriously but also meet yourself where you are.

Thank you for sharing your story, Matthew!

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More Pancreatic Cancer Stories

Burt R.

Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatment: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)

Roger R., Pancreatic Cancer, Stage 2

Cancer Details: Found after Galleri blood test and MRI
1st Symptoms: None
Treatment: 5FU (folfirinox), Gemzar, NK cell expansion therapy, Dendritic cell expansion therapy, Neoantigen peptide vaccine

Matthew R., Pancreatic Cancer, Stage 4

Symptoms: Dark urine, bone white stool, itching on palms and soles
Treatment: Chemotherapy, surgery

Tags cancer, cancer and emotions, cancer patients, cancer stories, cancer survivors, cancer treatment, chemotherapy, Crohn’s disease, dark urine, how to deal with diagnosis, itching, itchy skin, metastatic cancer, oncologists, pancreatic cancer, pancreatic cancer survival rate, pancreatic cancer symptoms, patient care, patient experience, signs of pancreatic cancer, stage 4 pancreatic cancer, symptoms of pancreatic cancer, the patient story, white stool

Categories
Chemotherapy Colon Colorectal Eloxatin (oxaliplatin) Patient Stories Treatments Xeloda (capecitabine)

Courtney’s Stage 3A Colorectal Cancer Story

Post author By Bella Martinez

Post date March 15, 2024

No Comments on Courtney’s Stage 3A Colorectal Cancer Story

March 15, 2024

Courtney’s Stage 3A Colorectal Cancer Story

Edited by:
Bella Martinez

Courtney, a high school English teacher from Spokane, experienced symptoms such as fatigue and blood in her stool that led her to suspect she had colon cancer. Despite initial dismissals from multiple doctors due to her age and lack of family history, Courtney persisted in advocating for herself, ultimately undergoing a series of tests, including colonoscopies and scans, which confirmed her suspicions. Diagnosed with stage 3A colorectal cancer, Courtney underwent surgery to remove the tumor and lymph nodes, followed by chemotherapy as a precautionary measure.

Throughout her treatment journey, Courtney faced various challenges, including side effects from chemotherapy such as hand-foot-and-mouth sores and neuropathy. Despite these obstacles, she pushed forward, continuing to teach full-time and engaging in physical therapy to regain her strength. Three years into remission, Courtney emphasizes the importance of self-advocacy, listening to one’s body, and pushing for answers, especially when faced with medical dismissals or ambiguity. She encourages others to trust their instincts, seek support from loved ones, and persevere in navigating the healthcare system to ensure proper diagnosis and treatment.

Name: Courtney H.

Diagnosis (DX):

Colon Cancer

Staging:

3A

Symptoms:

Blood in stool

Fatigue

Treatment:

Surgery

Chemotherapy

Capecitabine

Oxaliplatin

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.

Courtney H.

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

Table Of Contents

Symptoms
Tell us about yourself
What were your first symptoms?
Did you have any additional symptoms?
Colonoscopy
Experiencing medical gaslighting
Receiving a colonoscopy
What tests did the first doctors do?
Did your insurance cover the cost of the colonoscopy?
Surgery
The importance of advocating for yourself
Formulating a treatment plan
Describe your surgery
Did you have to prepare for your surgery?
Chemotherapy
What stage were you in?
Preserving fertility before starting chemo
Beginning chemotherapy
Chemo Side Effects
Which chemos were you on and did you have side effects?
Stopping oxaliplatin
Did anything help alleviate your chemo symptoms?
Reflections
How long have you been in remission?
How often do you get scans and do you experience scanxiety?
What advice do you want to share with cancer patients?

Symptoms

Tell us about yourself

My name is Courtney. I am a teacher. I teach high school English – specifically honors 9 English and mythology. I am a big lover of reading. I like to play outdoor volleyball, garden, and explore. I live in Spokane, in the Pacific Northwest. It’s so beautiful. We have four seasons and lots of activities and different things to do. I like to spend time with my niece and nephew.

What were your first symptoms?

I took an anatomy and physiology class in college, and one of the only things I remember from that was that the professor said, “Most often when you have internal bleeding of some sort, it is your body’s inability to heal itself, and that usually comes in the form of a tumor.”

What had happened was I had gotten a teaching job in Othello, where I grew up, and I moved down there. This was August of 2020. I was a very busy new teacher. I was the head cheer coach for a cheer program. I worked a lot of jobs in grad school, and so I just was very used to being on the go all the time and having a busy and packed schedule.

I knew I was sick. I knew I had colon cancer, so I just kept pushing.

When I moved to Othello, I started showing one symptom – I had blood in my stool, and I instantly knew. I knew instantly that I had colon cancer. Moving down to Othello, I had to get all of my records and everything transferred down there, including all my medical stuff. So I wasn’t able to go in and see a doctor until October. My symptoms kept progressing, and I just knew when that started happening. I was trying to find somebody that could help me find the exact diagnosis. The answer.

Did you have any additional symptoms?

Just blood in the stool and fatigue. My friend’s mom, who’s a nurse, did a blood test on me and she said I was very anemic. What we ended up finding out when they had taken the tumor out is the blood flow was feeding the tumor, and that’s why I was so anemic.

Colonoscopy

Experiencing medical gaslighting

The first general practitioner doctor I went to, he dismissed all my symptoms and said, “There’s nothing wrong with you. You’re thin, you don’t have a family history. You just need to make some dietary changes.” I was like, “Well, I’m going to keep trying to find answers.” It was in the middle of COVID, so everything was pushed back. Then symptoms kept getting worse. When I came home for Christmas break – home was Spokane – I saw a different doctor and it was the same thing. He spent about an hour with me, ran some tests, dismissed all my symptoms, but I knew I was sick. I knew I had colon cancer, so I just kept pushing.

The first doctor in Richland, he actually had put in a referral for me to see a GI specialist. I was able to see a GI in January of 2021 and [experienced] the same thing. She dismissed all my symptoms. Finally I said, “Listen, this isn’t about you being right or me being right. This is about figuring out what’s wrong. You’re speculating and I’m speculating.” They were all saying, “We think you have Crohn’s or diverticulitis, diverticulosis, or a bleeding hemorrhoid.”

One of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body.

I said, “No, I think that I’m sick. What can we do?” She said, “Well, we can give you a colonoscopy. You’re too young and they’re very expensive.” I said, “Well, I’m a teacher. I have great health insurance. We need to do this. I think it’ll give me peace of mind knowing that we have tried everything.”

Receiving a colonoscopy

Months later, she did a colonoscopy and found the tumor. That was February of 2021. That whole month and a half that I went through 9 different tests. I did 3 colonoscopies, a sigmoidoscopy, 2 CAT scans, a PET scan, and an MRI. There’s another one I did but I can’t remember the name of it. All of those tests brought me to the diagnosis. Now what are we going to do? What’s the plan of action going to be? I got a team together.

What tests did the first doctors do?

He did a blood test and some general stuff. He felt my stomach to see if I had any lumps or bumps. Then he went through and looked at family history. Obviously, I don’t have a family history of it. He said, “You’re thin, you’re not pre-diabetic.” I was in Richland, Spokane, and then I went to Kennewick. So three different cities, three different doctors. The doctor in Spokane pretty much did the same thing. They didn’t do anything extensive because you can’t really diagnose it unless you actually get a colonoscopy.

The problem was, neither one of those two doctors could perform that. Then they just dismissed my symptoms. They said, “Well, we’re not going to put in a referral for you to have a colonoscopy because we don’t think, from our experience, that you have it. I really had to beg the GI specialist to give me one.

We did a blood test with the first doctor and he didn’t see anything abnormal. Then the doctor in Spokane didn’t really see anything abnormal. But my friend’s mom, who’s a nurse, knew what to look out for because I told her what was going on. She did her own test and said, “You are severely anemic. Something’s going on.”

Did your insurance cover the cost of the colonoscopy?

I paid a little bit out of pocket, but it was mostly covered. The problem was, and this is something that I think a lot of people run into when they’re getting tests done, especially a colonoscopy or sigmoidoscopy. My insurance company did not want to pay for the right type of drugs. I didn’t know that. I didn’t hear the confirmation. They actually had to tell my parents, and it took 8 hours for the drugs that they gave me to wear off. So I actually didn’t find out about the tumor until the next day. My parents waited to call because they tried to talk to me after the procedure and I was just bonkers.

Surgery

The importance of advocating for yourself

They dismissed the symptoms because I didn’t fit the profile, but one of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body. I just knew I was sick. I had that feeling in my stomach. Sometimes science can only go so far, and sometimes you have to put it in your own hands and keep pushing for it. It was a unique set of circumstances, because when I did my colonoscopy, COVID cases were very light, so I was able to go in and get a colonoscopy. When I had my surgery, COVID cases were really light, so they didn’t push my surgery back. These were just perfect little windows where things ended up really working out in my favor.

Formulating a treatment plan

Because I didn’t have the right drugs, she couldn’t finish the colonoscopy. I would have to come back 4 days later and do another one. I came back that Friday. I had [the first one] done on a Monday, came back that Friday, and everything else looked clear. She said, “I’m 98% sure that this is a cancerous tumor. We’re going to send it off to have it biopsied.”

It took two weeks to get back. The next conversation, I said, “I know a surgeon who saved my dad’s best friend’s life. He had stage 4 rectal cancer and he’s been in remission for 20 years. I want that guy.” She was going to put in a referral for somebody else. I said, “No, I want this guy.” Then everything started to move, all the tests.

After all of the tests came back – because the original plan was to do some radiation, 6 weeks of chemo, and then do surgery after the MRI, – the radiologist called me and said, “This is miraculous, but your tumor is a lot smaller than we thought, so we’re going to operate. Nothing else is lining up in your body, so we’re just going to go for it and operate.” So they did.

Describe your surgery

Dr. Holbrook went in and did a lower anterior resection and took out part of my colon, 21 lymph nodes, and my appendix. He said, “I had a stage 4 appendectomy patient who’s 17 years old last week. I just thought I’d take your appendix out.” He spent about 4 hours in surgery. He just retired last year, but he’s one of the best in Spokane. I trusted him.

»MORE: Cancer Surgery Treatments

Did you have to prepare for your surgery?

The prep work was I had to go onto a liquid diet about 48 hours before. They gave me some things that they wanted me to take prior. After I was in the hospital for about 4 days, I had a series of things that I had to go through to get out of there. I had round the clock bloodwork. They would come in at 2 a.m., they’d come in at 6 a.m.. They were checking fluids and different things like that.

As far as the procedure, he just went in. He didn’t tell me how much of my colon he took out, but he took out the sigmoid region of the colon. That’s the end. He took that part out and did the lymph node pluck. After that, I was on a liquid diet for about 3 weeks, giving my bowels a break and allowing things to heal. He was able to go in and do it minimally. The incision where he went in was about this big. He was able to go in right underneath my stomach and do it.

Chemotherapy

What stage were you in?

We got a really good prognosis back. I had a stage one tumor. There were just a few little cancer cells that had broken off and gone into one lymph node, so I had a really good prognosis.

Preserving fertility before starting chemo

I had my 3 week clearance from surgery, and then I actually harvested my eggs, and then I did chemo. It was boom, boom, boom. My body had been through some things. Harvesting your eggs is quite an interesting process. I didn’t know this. When you go through and you do all the things, they monitor you, they take your temperature, they do all the things.

The day before my procedure, they did a COVID test on me and it came back positive. I didn’t know I was asymptomatic. Seattle Reproductive had to fight with Seattle to advocate to harvest my eggs because it’s a $15,000 procedure. They ended up saying, we’re going to suck it up, risk it, and do her procedure. Then I started chemo right after I was cleared from COVID.

»MORE: Fertility After Cancer Diagnosis

Beginning chemotherapy

I didn’t have to do chemo because of my prognosis, but my surgeon and team recommended that I do it as an insurance policy. I was prescribed 2 different types. I had an infusion chemo which entered through a port and a pill chemo. I would do one infusion every 3 weeks. Then I was on pill chemo for 2 weeks at a time and I’d get a break at the end of it.

»MORE: Chemotherapy FAQs & Patient Stories

Chemo Side Effects

Which chemos were you on and did you have side effects?

Capecitabine. The infusion chemo was called oxaliplatin. I had side effects with each. With capecitabine, I had hand-foot-and-mouth, where you get really bad sores everywhere. The other chemo was oxaliplatin. It’s a platinum chemo. It had some really strange side effects. You couldn’t touch anything cold. You couldn’t ingest anything cold. I couldn’t drive in my car with the AC on or it could close my throat. Everything had to be room temperature or hot.

It was in the middle of the summer, so one of the biggest issues I ran into was I was dehydrated a lot. I was hospitalized 2 different times for dehydration which was scary. I lost a lot of weight. I think I lost about 25 pounds. I tried to eat when I wasn’t hungry. I had to watch what I ate. They tell you you can’t have raw fruits and vegetables while you’re on chemo, which is so weird because you should be eating healthy foods, and they said to eat what I could.

The first two days after infusion chemo and pill chemo, you’re the sickest, you’re nauseous. It’s really, really hard to get up and move around. With oxaliplatin, like I said, it’s a platinum chemo so it causes neuropathy. You have a lot of tingling going on in your body. It got to the point where my eyes were affected by it. I could taste it in my mouth. It was very all-consuming throughout my body.

Stopping oxaliplatin

I did my own research about my particular prognosis and I decided to stop oxaliplatin after 4 rounds. That’s the infusion chemo. A lot of patients push past that, and there are some patients that end up disabled from doing that chemo. I did not want to do that. I didn’t want to risk that. It was making me so sick that I could barely eat.

Did anything help alleviate your chemo symptoms?

When I was dehydrated, I would go in and get pumped with fluids. That helped. I did take Zofran to help with the nausea. You can’t be in the sun either when you’re on chemo. You have all these things that you can’t do.

»MORE: Managing Nausea and Vomiting from Chemotherapy

The best thing that helped with the side effects was to get my mind off of it.

I think for me, the best thing that helped with the side effects was to get my mind off of it. I taught full time while I was on it. That was my choice. I didn’t want to lay in bed every day and dwell on it. That’s just my personality so I decided that I was going to work and let that be the thing that would help get my mind off of it. I did oxaliplatin for 3 months and capecitabine for 6 months.

When I went back to school to teach, I did physical therapy and that helped a lot. It helped me build up strength because I had lost so much muscle mass and lost so much weight and it helped with getting through those days.

Reflections

How long have you been in remission?

I am almost at the 3 year mark of being in remission. I count it as April. My oncologist counts it as November because that’s when I finished chemo, but I think that the surgeon got everything.

How often do you get scans and do you experience scanxiety?

I don’t think that it ever really leaves you. I think that it stays with you.

I just hit the 2.5 year mark, so now I go every 6 months. I think that’s one of the hardest parts. I was joking with a friend that I’m a part of an exclusive club now because it doesn’t really ever leave you. With scanxiety, I just do my best to just try and stay positive. It’s always quite exhausting because it’s a 4-day process – blood work, scan, and meet with your doctor.

My aunt is a phlebotomist, so she’s always encouraging, giving me tips on how to stay positive and hydrate, make sure you’re ready to go. But it is a real thing, and I honestly don’t think that it ever gets any better. I think that you learn how to manage, how to live with it. The farther out that you get, you feel better. But I don’t think that it ever really leaves you. I think that it stays with you.

What advice do you want to share with cancer patients?

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.

You need to advocate for yourself and you need to be able to listen to your own body. Science only goes so far. Knowing, understanding, and listening to your body is really important. Because if you’re sitting in front of this doctor that doesn’t know you, you’re just a statistic. They’re trying to see where you fit, and if you don’t fit the category, you don’t fit the profile, of course they’re not going to suspect anything.

I also think that you have to hold on to your faith and keep pushing through roadblocks and things that are in your way. You just have to keep going until you find the answers that you really desire to have. For me, that was, I’m sick of hanging out in ambiguity. I know I have it. You are speculating, but that’s why we have science. That’s why we have these things. We shouldn’t be profiling people based on their age or the way that they look. We should be listening to the patient and to their concerns.

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers. That’s why I’m alive and well today, because I advocated, and I continued to push until I got the answers that I needed. I don’t blame any of them. They’re doctors, they’re human, but I do think that they need to listen to patients better. I think that they need to listen to their patients, listen to the concerns that they have, and really do a better job of putting something in place that is going to help. Help eliminate this ambiguity. For people that may not feel as comfortable to advocate, you just have to remember that you know your body. So even if it’s something that’s totally foreign, talk to somebody about it and try and find those answers that you are desiring to look for.

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Andrea P., Colorectal Cancer, Stage 3
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Tags blood in stool, cancer, cancer stories, cancer vlog, chemotherapy, colon cancer, colon cancer signs, colon cancer surgery, colon cancer symptoms, colon cancer symptoms in women, colon cancer symptoms story, colon cancer symptoms young, colonoscopy, colorectal cancer, colorectal cancer symptoms, do i have colon cancer, fatigue, how i knew i had colon cancer, how to deal with diagnosis, side effects, stage 3 colon cancer, surgery, symptoms of colon cancer, the patient story, xeloda

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