The Lasting Impact: Bladder Cancer in Those Who Served
The Many Faces of Bladder Cancer: Voices of Strength and Resilience
Our series, The Many Faces of Bladder Cancer: Voices of Strength and Resilience, shares genuine stories from people battling bladder cancer. These powerful stories highlight the experiences and the challenges faced by patients and survivors. This series intends to foster hope, understanding, and a fresh outlook on dealing with this condition while raising bladder cancer awareness.
Veterans exposed to toxic chemicals have a higher risk of bladder cancer. This story honors their service while shedding light on their unique challenges, the importance of early detection, and the support available for those affected.
Wally’s story is one of grit, love, and moving forward, even when life throws curveballs. A proud veteran, Wally spent decades serving his country until his retirement in 2007.
While working a high-level assignment at the Pentagon in the early 2000s, Wally noticed signs of an enlarged prostate. Then came the blood in his urine. At first, he chalked it up to his prostate issues again, but a scope revealed something far more serious: a massive tumor in his bladder.
A bladder cancer diagnosis was about to change everything.
Thank you to Pfizer and Astellas for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fighters, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
I found myself inside the Wall when Berlin was West Berlin and we were surrounded by East Berlin and the Russians.
Introduction
I’m from California. I had bladder cancer and prostate cancer. My life has been very up and down. It takes its toll on the body and the mind.
Life in Service
I went into the service in 1967. I volunteered for a two-year RA, which meant that they were going to send me to Warrant Officer helicopter school. They sent us first to Fort Polk, Louisiana, for basic training and then to Fort Ord, California, for advanced infantry training.
I was supposed to go to Fort Benning, but for some reason, they closed it down at that time, so they sent all of the Warrant Officer flight candidates to different posts until they opened the fort. They happened to send me to Berlin. I found myself inside the Wall when Berlin was West Berlin and we were surrounded by East Berlin and the Russians. I did two years in Berlin and ended up ETSing, which means getting out of the military, while in Berlin. I attended university in Berlin and studied music.
While in Berlin, I was in the infantry in the beginning and then I decided that I could use my musical skills, so I got a job playing saxophone and flute with the Army Band in Berlin. My first two years in the Military were very fulfilling, but when I got out, I decided that I wanted to stay out for a while. I got out in ’69. I finished college, taught music, and played in bands, but then I thought I wanted to be a policeman.
I went to California and joined the Los Angeles Police Department (LAPD). My buddy, who was my training officer, came up to me and said, “Hey, Wally. You were in the Army and I’m the platoon sergeant down at this Military Police (MP) Detachment. Would you like to go down there?” I didn’t want to go back in the Military, but I said, “Sure, I’ll come down and I’ll help you out.”
I had so much pride in my career…Teamwork is the number one thing I learned.
I was his squad leader and this was a combat MP group in the National Guard. I did that for two years. Then I went to the Army Criminal Investigation Division (CID) in 1985. When you go to CID, that’s a career move and you’re going to stay there forever. I stayed through 2007 when I retired from the Army.
I traveled a lot because the CID travels a lot. We did a lot of investigations all over the world. I went to Panama after the military dictator Manuel Noriega was removed. I was able to go back to the Pentagon. I was the OIC of the protective detail for Gen. Richard Myers, who was chairman of the Joint Chiefs of Staff. Every day, we would take the Chairman to the White House to see the President. I love the police, but that particular job was the best job I’ve ever had.
I had so much pride in my career. I was a member of the 316th MP Detachment CID, which is located in Bell, California. We became very close. The Military was our common bond. Everybody in that group has been a police officer. In those days, you had to be a police officer to get into the CID because they wanted someone who was already trained, because you didn’t have active duty exposure.
Back in those days in Berlin, there were three countries inside the wall: England, France, and the United States. In ‘68, the Russians invaded Czechoslovakia and they also put a brigade of tanks all around Berlin. At that point, they had given us 16 or 24 hours of life, and then we would be taken out. You never knew what was happening in Berlin. I saw people trying to escape from the East and they got killed trying to jump over the Wall. They never made it to the Wall though because the East side had a big area that was barren and they had machine gunners in the towers.
Berlin was beautiful on the inside. Unfortunately, the United States got taken on that deal because we got the old part of Berlin that had been bombed out, so the United States, France, and England had to rebuild all of that. The Russians had the nice parts. After I got out of the Army, I stayed in Berlin as a student and it was quite interesting. I worked as a bartender in a German pub and as a waiter in the Army officers’ club.
Teamwork is the number one thing I learned. Everybody wants to do everything on their own. They think they’re bad dudes. But when you need the team, you have to retrain yourself and that’s what they did in the Military in those days. When I went to Warrant Officer school, it was very team-oriented in a sense and it was quite good. It helped me later on in life because when I became a policeman, I had to work in a team. You could see the difference between the Military guys and people who weren’t. They didn’t have that Military philosophy.
I had a huge tumor in my bladder. He described it as gargantuan, so that was not good.
When I First Noticed Something Was Wrong
When I got activated in 2002 to 2003 for one year, I was at the Pentagon. While I was there, I started to have the symptoms of an enlarged prostate. I’m with a visible principal of the United States government and at one point, I had to wear a catheter and it was quite difficult.
I went to the urologist and he said, “Let’s set you up for surgery and we’ll reduce that again.” Before going to the hospital, he went up with a scope and told me that I had a huge tumor in my bladder. He described it as gargantuan, so that was not good. They decided to operate on me two weeks later. That was how I found out that I had cancer.
I went to City of Hope. I had no idea what I was doing, but I just went there. They had a urologist there, so I went to see him first and then he said, “We’re going to have to connect you with an oncologist.”
Why me? How? No one in my family had cancer. But I’m a survivor, so I knew that I had to move forward. I can’t quit.
The Moment Everything Changed
Why me? How? No one in my family had cancer. But I’m a survivor, so I knew that I had to move forward. I can’t quit. I have a family and obligations. Here I am at 78 and I know what I still have to do in life. My son’s in college and I tell him, “Son, I’m going to be here until you graduate because I want to see you graduate. Then you can start pushing me around. Maybe I can get a chair if I need it.” He said, “Dad, I’ll be there for you.”
It didn’t hit me because I didn’t know about cancer per se. When you don’t have something and you only read about it or hear it on TV, you don’t know exactly what it is. You have to have it for a while to know what it is.
I was in the hospital for about a week and a half to two weeks. I picked up a urinary tract infection and that was terrible. When they went in for the bladder operation, they realized that they had to take out my entire prostate and the lymph nodes that go across the waist. After that, I had one leg that I had trouble with. It’s swollen, but it’s better to be here with a swollen leg than not here. I’m happy that I’m where I am right now, but that’s been a pain, too.
If you sit and talk about it all day and think, “poor me,” all you do is dig a hole and I don’t want to dig one for myself, so I moved on. Now, that doesn’t mean I feel good every day. That doesn’t mean I have all the strength. I can’t tell the difference between being old and having a sickness, so I’m going through two changes in life.
I tell everybody about being old. Every 10 years, your body changes and it starts at 40. I think it waits until you turn that age on your birthday and then it hits you and takes a little bit of something away. You can’t stretch as much. You can’t run as fast. You can’t lift as much. It’s a combination though when you have cancer and you’re getting older. In my case, it’s difficult.
Going on Bladder Cancer Treatment
I went on chemotherapy before the surgery because they had to reduce the size of the tumor. The tumor was too big. I also had some chemo after. I told the doctor that chemo was worse than the cancer. It was terrible.
When I came home, my family took care of me, but I also took great care of myself. I don’t know whether it’s the way that they bend you when they operate on you, but I couldn’t move my right leg for a long time. To move my right leg, I had to lift it off the bed first and then my son would come in and help me stand up. It’s never been as flexible as it was, but gradually, I was able to walk with it. You can tell that I had problems with it.
I was in remission for a couple of years… When I went in to see him, he told me that I had a tumor at the base of my spine.
The Cancer Came Back
I was in remission for a couple of years and while I was in remission, they would have me come in to do a scan. I wasn’t taking any medication then.
City of Hope has a website where you can go in and read your reports. I didn’t know what I was reading, but I understand increased, decreased, stayed the same, or first observed. I realized that I had something negative that my doctor was going to tell me.
When I went in to see him, he told me that I had a tumor at the base of my spine and, because of its position, he couldn’t operate. I said, “I’ll tell you what, doc. You do anything you need to do, but don’t give me chemo because I don’t like chemo.”
They decided to try immunotherapy where I had to come in once a month. I didn’t feel good for a day or two, but after that, I was fine. City of Hope found a funding source because when you use a medicine that’s [not yet approved for this condition], the insurance doesn’t pay [cover it for this use]. For two years every month, I went in for my infusion.
Around May 2024, he said, “Let’s give you a couple zaps of radiation.” They had to be very careful that they didn’t hit the area where my kidney was. I had four sessions. We only did that to make sure that the tumor was dead.
Then they did a PET scan and the PET scan said that the tumor was dormant. That was that. Now, I go every three months to get a scan. He did some cancer DNA testing and I was negative.
What would stop somebody from getting cancer treatment? Fear. Nothing else.
The Importance of Receiving Great Cancer Care
City of Hope had great service. The care there was great. The institution itself is a good institution. They recently opened a new parking lot, so that’s better. I had to always look for parking, but now I’m happy.
I’ve never had any other cancer treatments. Somebody asked me if I had checked other places. I don’t remember how exactly I picked the City of Hope; maybe I Googled cancer and they came up, but I found out that they’re one of the best in the world. I lucked out and I’ve had some very good doctors. Overall, City of Hope has been great.
When you’re going through cancer, the medical side is very important. Either they do the right stuff and it works or you don’t make it.
Processing the Return of the Cancer
I have no fear. What would stop somebody from getting cancer treatment? Fear. Nothing else. In some cases, their fear is based on their history, their family, and how they were brought up. In my family, we never stopped. We always went. My dad and my uncle were in World War II. On the other side of my family, it was all of my uncles. I had an uncle who had frostbite in the foxholes in Korea. If they can do those things, I can handle a little cancer.
How My Family Has Supported Me
One thing you need is your family. If you have people in your family helping you, it makes a difference. I have two sons. The older one lives in Fresno and the younger one is in Wisconsin. They help me when I have problems that become big. I also have a few dogs. Dogs love you. They never stop. For those who are going through cancer, your family is a big thing. Try to keep the stress down because the disease itself is stressful enough.
Get yourself checked regularly. Make sure you listen to what your doctor says and have your tests done.
What Cancer Has Taught Me
I have my Army friends and my Gamma Phi Fraternity buddies in Pittsburgh. Every year, we get together at my friend’s mansion on a lake in West Virginia. We sit on the lake, drink beer, and talk about how things used to be. You see the guys falling out of the picture, so you start to have more appreciation for every single day and every single moment. You laugh as much as you can. You don’t worry about the small things because you may not have anything if you don’t make it.
Getting old is the other thing. I tried several times in my life to get younger and it doesn’t work. If I go out and run too hard, instead of getting in shape, I start to hurt my heart. I used to be a runner, but age takes its toll.
You have to know what is bothering you at the moment. Is it your age, the cancer, or the medicine? Right now, I’m not taking any meds. I don’t take blood pressure meds or cancer meds. I take vitamins and that’s all.
The doctor said to do it and I did it. That’s the soldier in me. You keep soldiering. That’s what happened. I didn’t have any second thoughts about it. I just went and did it.
My Message to You
Always have hope. Be strong. Grab that sickness by the neck and twist it. Know that if you work hard and do your best, there’s a good chance that you’re going to beat it. It’s not 100%, but you have a good chance.
Get yourself checked regularly. Make sure you listen to what your doctor says and have your tests done.
If you have it, you can beat it. If you don’t have it, don’t do the things to get cancer. There are a few things that they know are associated with cancer. If it comes your way, knock it out, man. Knock it out.
Special thanks again to Pfizer and Astellas for supporting our patient education program. The Patient Story retains full editorial control over all content.
Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fighters, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.
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Living Well Together with Follicular Lymphoma: Real Talk from Patients & Partners
How do you navigate living with follicular lymphoma (FL) as a couple from diagnosis, to treatment decisions, and life beyond?
In this heartfelt discussion, three couples share their personal stories and unique insights on living with FL. From the shock of diagnosis to finding emotional balance, hear real talk on what helped them move forward together.
Living Well Together with Follicular Lymphoma: Real Talk from Patients & Partners
Hosted by The Patient Story Team
How do you navigate follicular lymphoma (FL) as a couple — through diagnosis, treatment decisions, and life beyond? In this heartfelt discussion, three couples share their personal stories and unique insights on living with FL. From the shock of diagnosis to finding emotional balance, you’ll hear real talk on what helped them move forward together. Whether you’re a patient or a care partner, this program offers connection, validation, and hope.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Thank you to Genmab for its support of our independent patient education program. The Patient Story retains full editorial control over all content.
Stephanie Chuang: The focus for today is living well with follicular lymphoma, navigating the healthcare system, staying informed and connected in the system, and so much more. We’ve got an incredible panel.
I’m the founder of The Patient Story and I had my own blood cancer diagnosis. When I was getting my 600-plus hours of chemotherapy — so much fun — I felt very isolated and confused. I wanted to hear from real people, experts who are not already being highlighted, and to me, that would be other patients and care partners. That’s when the idea came up to help others navigate life at and after diagnosis, which is what The Patient Story aims to do. We try to build community through in-depth patient stories, educational programs, and discussions to amplify your voices, the voices of patients, caregivers, and partners.
Living with Follicular Lymphoma also provides another community where you can chat in real time with thousands of people living with FL from around the world. It is the largest FL-dedicated Facebook group online.
We would like to thank Genmab for its support as our sponsor, which allows us to continue hosting these discussions and programs free for our community. I want to stress that The Patient Story retains full editorial control and while we hope that this is helpful, remember that this is not a substitute for medical advice. Please consult with your team as you’re making your decisions.
Joining me are follicular lymphoma patients and their care partners. We have Nicky and Craig from Perth, Western Australia, Hayley and Carl from St. Louis, Missouri, and Milissa and Andrew from Clear Spring, Maryland. I’m joining from just outside San Francisco, so we’re covering a lot of space.
Nicky & Craig
Nicky: I was diagnosed with follicular lymphoma in February 2014 at 32 years old. My kids were very young then, one and four. I also recently graduated from university and I’m now a clinical nutritionist. My passion is supporting cancer patients through their nutrition and lifestyle.
Craig: I’m Nicky’s husband and we’ve been together for a long time.
Nicky: 28 years, I think.
Craig: I’m Nicky’s caregiver, but it’s probably a lot more than that.
Nicky: We’re each other’s caregiver.
Craig: I’m a dad, I work, and I try to keep everything rolling.
Milissa & Andrew
Milissa: I was diagnosed with follicular lymphoma at the end of 2023. Andrew and I had been living together for a little over a year at that time. I’m also a nurse, so that put a different spin on everything that went on.
Andrew: Milissa and I have been together since August 2021 and have been living together since September 2022. She was diagnosed with lymphoma in November or December 2023 and started getting treatment in January 2024. It’s been a challenge since she seeks treatment in New York City, which is about a five-hour commute from where we are. But she gets good care where she goes, and right now — knock on wood — she’s doing well.
Hayley & Carl
Hayley: I got diagnosed with stage 3B follicular lymphoma in October 2024, which had already transformed to diffuse B-cell when we found it. We started treatment by November. I’m also a nurse and work in the emergency room, so that’s where I got my diagnosis, at work.
Carl: We’ve been together nearly two years. We’ve been together about a year and a half when she was diagnosed. Luckily, we had already lived together when that happened. I have two kids, so my role was to support her and try to stay healthy and present. I’m lucky that I work remotely, so I’ve been able to attend almost every appointment, be there for her as best as I can, and try to hold everything together. She’s done great and we’re happy to see the other side of this.
What Were Your First Symptoms of Follicular Lymphoma?
Stephanie: Let’s kick off with when you found out about all this. We know that for follicular lymphoma, many people don’t feel any symptoms, but some feel subtle symptoms, so there’s a bit of a range there. A lot of people get curious about this part of the story. How did this lead to a diagnosis? Nicky, you were diagnosed at 32. I was 31. We both mentioned fatigue, which, by the way, isn’t just tired. It’s beyond that. But you also just had your son, so there’s a feeling that the fatigue comes with that, doesn’t it? What moved you to become concerned?
I felt my neck and realized that it was like a corncob.
Nicky
Nicky: I didn’t notice any signs or symptoms. I was working, I just had a baby, and I had a toddler as well, so I thought that being tired and fatigued was normal. I used to be a mortgage broker. One of my colleagues was a bit of a hypochondriac who always thought she had any kind of illness that came. She mentioned that she always checks her neck for lumps because in her head, if you have a lump on your neck, it means that you have cancer.
I laughed it off, but I felt my neck and realized that it was like a corncob. It was very lumpy. I didn’t worry too much, but I went to the general practitioner (GP) and he said, “Oh, okay, we’ll do a blood test and see.” I never heard back. I went back about a month later and told him I still had lumps on my neck, and that’s when he said to do some more testing. It took a good two to three months for me to get my actual diagnosis. There was a lot of back and forth going to different doctors and getting tests done, so that was a little traumatic at the time.
Stephanie: Hayley, you shared that you felt pressure in your neck, but it didn’t feel like a typical sore throat and you were otherwise feeling healthy. What pushed you to listen more to your body and to seek medical help?
When I would sit slouched back on the couch and breathe out a few times, I felt a wheeze.
Hayley
Hayley: It originally started with a deep-set lump over my clavicle. It didn’t feel like a lymph node; it almost felt like a pulled muscle. It wasn’t bothering me all day and it wasn’t even every day. It was only in certain positions. When I would raise my arms above my head, I would feel the pressure. Now, looking back, I know exactly what that was. Every time I lifted my arms, it would push the mass. It deviated my trachea.
Besides those nodules, my only other symptom was a little bit of wheezing, which I didn’t think anything of at the time. It wasn’t alarming enough or often enough to spark concern. When I would sit slouched back on the couch and breathe out a few times, I felt a wheeze. I thought I only needed to change my position. I found out that I had a big mass right in the middle of my chest and that’s never happened since then, so now I know that’s what that was.
Getting a Doctor to Address Your Concerns
Stephanie: When you were seen by a doctor and voiced your concern, did you get any feedback like it’s nothing? Especially as young women, sometimes we hear stories about that.
Hayley: That morning, I called an ENT because at that point, I knew that it wasn’t something normal, and it came on overnight. I said, “I would like to get a scan.” The ENT said, “I’ll see you in six months,” and I said, “It came overnight, so in six months, I don’t think I’ll be here.”
When I went to my primary care doctor, she was pushing on my thyroid and having me swallow. She wasn’t quick to order a scan. I had to push for that. She was thinking along the lines of a thyroid issue and ordered an X-ray. Originally, the only thing that we had was the X-ray. They called me that night with the results showing widening of my mediastinum. I was shocked because I was under the impression that I might have some swollen nodules. I didn’t understand why she ordered an X-ray of my chest.
Stephanie: I’m so glad you pushed for what you needed. As a nurse, I can only imagine all that you know when it comes to this. Milissa, did that also show up for you in terms of self-advocacy, in trying to figure out the diagnosis? Did you have any red flags for symptoms that you experienced?
Milissa: I commonly had lymph nodes in my neck. I went to primary care doctor who also thought it was my thyroid. They did some ultrasounds, but they didn’t see anything. They did a CT scan and it came back with “possible lymphoproliferative disease.” I went to see an ENT doctor at a pretty big center and he said it was just inflammation. He didn’t know what it was, told me to get another ultrasound of my thyroid, and then said, “I’ll see you in six months.” I said, “Can we biopsy it?” And he said, “No, I don’t think it’s warranted.” I went on for another two years until I got another CT scan.
Stephanie: We’ve heard that sometimes, it does take time, especially when there’s not a more pressing symptom to flag something.
It’s a little hard to grasp the severity of it. You don’t have a lot of answers in the beginning.
Andrew
Helping a Patient Cope as a Care Partner
Stephanie: There are two very different perspectives when we enter a diagnosis: the person who’s diagnosed and the main care partner. For each care partner, what do you think your partner was thinking and feeling in terms of how to handle the diagnosis?
Andrew: It was a big shock for both of us. She’s always been very healthy, vibrant, and energetic, so you’re thrown back by it. It’s a little hard to grasp the severity of it. You don’t have a lot of answers in the beginning. Milissa knew that she needed to get more answers and she wanted to go to a facility where she would probably have the best chance of getting the best treatment. Being a nurse, she wants to research and look up symptoms, which is good because she’s educated in that respect and I’m not.
Stephanie: Milissa, what I heard was part of it was fear but being in the field of healthcare, you know a lot, which is good, but it brought some anxiety. When you heard him describe your reaction, was that spot on or is there anything else you’d like to add about what you were feeling?
Milissa: Yeah, that was spot on. I went down every bad road that there was.
I was feeling anxious about it and didn’t know what to do… If you’re diagnosed with cancer, your outlook on your future changes dramatically overnight.
Andrew
Stephanie: If you could list a couple of words for Andrew and how you think he was at diagnosis and moving forward into this new relationship, what would that be? How would you describe that?
Milissa: I think he was lost and terrified. He took one day at a time, whereas I took five years in advance, so it was probably better for him.
Stephanie: Andrew, did she nail that, or were there other things that you were feeling?
Andrew: No, I think she nailed it. I’m sure I was feeling anxious about it and didn’t know what to do. It’s a different role. If you’re diagnosed with cancer, your outlook on your future changes dramatically overnight. That’s hard to deal with and grasp right away for a person who loves you. It takes a little time to absorb those things.
Stephanie: Craig, could you talk about Nicky and her reaction and how she was during that time as you guys were trying to figure it out? What descriptive words would you use there?
Craig: Uncertainty, fear, being lost, and not knowing what tomorrow’s going to be. The information 10 years ago was a lot different compared to what it is now. It was very difficult. I don’t remember many days of my life other than my wedding day, but I do remember February 13th and the conversation. It was certainly a tough day.
Stephanie: Nicky, was there anything that Craig didn’t know at the time or did he pretty much capture all of that for you?
Nicky: It was pretty bang on. We live a little out of Perth and the doctor was a fair way away, so they called to give me the news. He was next to me and I said, “Is it cancer?” I didn’t know what lymphoma was. There wasn’t even that much information, but I remember the doctor said to me, “Google indolent.” Craig went off straight away and Googled indolent, then he came running back and said, “Don’t go on Google and don’t Google anything.” I was banned from Googling, but I don’t know what he read. It was a very shocking moment. We were very stunned because I didn’t expect to hear that. It was like a punch in the face.
Stephanie: When we talked, you mentioned the emotional response and that Craig felt something first, then when he was able to collect everything and move forward, then you got the chance to let go. Can you describe that?
Nicky: He came back and must have read something that scared him, so he broke down first. I said, “It’s going to be okay, love.” We called his mum to come over because she has breast cancer and we’re very close. When she arrived, that’s when it hit me and I broke down. We took turns supporting each other and as we started to get into it, the information came to light, but there was an initial shock.
After I had my bone marrow aspiration, we found out that it was stage 4. In our minds, hearing the words stage 4 for any cancer was the worst it could be, but for FL, it’s a bit different, which we didn’t know at the time. There’s a lot more information out there about FL than there was over a decade ago.
Craig: We went through the process before the diagnosis and went to numerous doctors’ appointments and procedures. I kept saying to Nicky, “You have nothing to worry about. It’s going to be fine. This is the process they go through and what they do to rule stuff out.” When we got the diagnosis, I felt awful that I was saying these things to her. I don’t know how to put it into words, but it was tough for me that I’d gone through that process with her, telling her everything’s going to be sweet, and then obviously it’s not. It’s like a bit of a bomb gets dropped.
Stephanie: Nicky, how is it hearing him describe that piece of it? Have you talked about that before?
Nicky: No, we haven’t spoken in depth about how he felt at the time of diagnosis, so it’s good to talk about it and get it out in the open, but I don’t think you should have any guilt about it. It’s nothing we could control. When you get a diagnosis like this, your whole mindset starts to change. Things that mattered before don’t matter anymore. Now I’m realizing what a blessing that is because it opened my eyes to take notice of things around me, make the most of every moment with our kids, and watch them grow. We don’t miss a moment anymore and I’m grateful for that.
Stephanie: Wonderful. Thank you both for sharing all of that. I know it’s a lot to remember back to 11 years ago, so thank you.
When you get a diagnosis like this, your whole mindset starts to change. Things that mattered before don’t matter anymore
Nicky
Stephanie: Hayley and Carl, I’m so interested to know if any of that resonated with either of you. Carl, what do you remember Hayley feeling and thinking at the time of diagnosis?
Carl: I was in the ER room when the doctor came in and gave her the diagnosis. I would say shock was the number one emotion, probably for both of us, because she was so young and healthy. We were active people, went to the gym quite a bit, and ate pretty well. Then it quickly turned to fear. Fear of the unknown and all the uncertainty, like Craig was talking about. She was quick to harness all that, bring it back, and hit everything head-on.
Carl and I had only been together for a year and a half, so I had a pit in my stomach. What was I signing him and his kids up for?
Hayley
Stephanie: Hayley, was there anything else that was going on for you? It wasn’t that long ago. Was Carl pretty right on with that? Was there anything else that you were feeling that he wasn’t able to see, maybe?
Hayley: Shock was the first emotion. I was pretty much in disbelief that it could be cancer. I also didn’t quite know what lymphoma was. When they said the word, I didn’t know that meant cancer. I asked, “Is this terminal? Is this something that can be treated?” Now I know there are over 180 forms of non-Hodgkin’s lymphoma.
I didn’t know what to think or what to expect. My doctor and I are close, so I asked, “Am I going to die?” He told me no, so that was helpful, even if he didn’t know. At least during that time, I knew it wasn’t a death sentence.
I was scared. Carl and I had only been together for a year and a half, so I had a pit in my stomach. What was I signing him and his kids up for? But he’s been good about being strong and not making me feel that anymore. I couldn’t help but think that. We’re 30 years old. When we got together, this wasn’t what he was thinking we were going to buckle up for. I had my last chemo recently, so it’s still new and there’s still fear percolating in there. It’s been a lot.
I needed to know if I had a future. I kept thinking, ‘Am I going to be able to have children? Am I going to get married? Do I tell him to go live his life and not wait for me?’
Hayley
Stephanie: I can only imagine. It was a while ago for me, but it’s still a lot coming at you and you’re still in it. Hayley, how about with Carl? You were in the room together that day. But for the days and weeks after, what did you notice about his reaction and what he was going through?
Hayley: He held it together pretty well. He was listening, very supportive, and understanding. We’re going to get through it no matter what happens. It was nice to know that he didn’t run away and wasn’t like, “I don’t want to get into this. This seems like a stressful time.” He stood by me and we’re going to get to the end of it, whatever that is going to be. Despite having two younger kids, we were going to get through it all together
It all happened so fast. After I got my diagnosis, I went to an oncologist the very next day then the day after that, I had surgery. Two weeks later, I started with treatment. I feel like my oncologist was trying to say as little as possible and not tell me much. He wanted me to focus on treatment. We’ll get there when we get there and talk about all that later. But for me, that wasn’t good enough. I needed to know if I had a future. I kept thinking, “Am I going to be able to have children? Am I going to get married? Do I tell him to go live his life and not wait for me?” That went through my head many times.
Stephanie: That hits home for me because that was where I was in my relationship, too. I thought all the same things. We imagine this life then cancer comes and it wasn’t part of the plan, obviously. Thank you for sharing that, Hayley, I appreciate it. Carl, was there anything that you feel Hayley didn’t see at the time or did she cover all of it?
Carl: No, she did a good job. None of those thoughts ever crossed my mind, but there was some underlying fear and things that I probably suppressed a little bit to be there for her. But a lot of the same emotions she was feeling, I was, too. I probably didn’t show them quite as much in the beginning.
I probably suppressed a little bit to be there for her. But a lot of the same emotions she was feeling, I was, too. I probably didn’t show them quite as much in the beginning.
Carl
Processing Your Emotions as a Care Partner
Stephanie: It sounds like you were feeling all those emotions but in order to support Hayley, you didn’t want to access them right away. Have you been able to process it more since then?
Carl: I feel like I have. We’ve been submerged in this for six months now. I’ve had my moments.
Stephanie: Can you talk about what those moments look like for you?
Carl: My first big one was when she went in for her biopsy. I stayed back while her parents went in to see her off. It was tough to see her go back. We’ve had a couple of difficult moments together around the house and some of the scary times where when she got sick during treatment, but my biggest one was while she was in surgery for her biopsy.
Stephanie: Andrew, how about you? Were you able to process early on, or did it also take some time? Do you remember the first time it hit you emotionally?
Andrew: It was when Milissa went up for her first treatments at Memorial Sloan Kettering. She didn’t feel well at all after her first treatment, so it worried me. She had to go to the ER afterwards. That’s when it emotionally hit home for me that this is very serious. We don’t know what the outcome is going to be and it’s going to be a fight.
Major Challenges Faced by Care Partners
Stephanie: Craig, what was the most challenging part of the role of care partner?
Craig: The hardest was when she was having treatment, seeing the wasting away of her body and what the drugs were doing to her. She went from a fit and healthy young lady to skinny and weak. It was tough. You’re looking from the outside in and it’s very difficult to see your partner go through that change. I said to her a thousand times that I’d swap places in an instant, but unfortunately, that’s not how it works.
Stephanie: Andrew, when we were chatting before, Milissa mentioned that she has been a nurse for over 30 years, so being the patient was a hard transition. Milissa, you called yourself a “bad patient.” Andrew, was that challenging for you? What was that like for you?
Milissa researching morphed into finding other people who were in the same situation. It became a support group for her, too, which was a good thing and continues to be a good thing for her.
Andrew
Andrew: It was very challenging. Milissa wanted to do a lot of research and that’s her nature. She would say that would help ease her mind, but I felt differently. I tried to accept that, but I felt that it would make her more anxious. I wanted her to try to put those things aside and still live her life, which is maybe a naïve way of looking at it. I couldn’t do much because I don’t have a medical background and have a limited understanding of the technical aspects of things.
In the end, Milissa researching morphed into finding other people who were in the same situation. It became a support group for her, too, which was a good thing and continues to be a good thing for her. She has taken that support group and given back to people who are going through the same experience with lymphoma. It’s been great for her because it helps her heal a lot.
Stephanie: What you’re speaking to, I’ve heard many times over. No matter how great the relationship is, there is something to be said about each person’s role and the understanding of what it feels like, which is why I’m glad we’re having this discussion with all of these perspectives.
I had what I thought was quite an unusual treatment because I haven’t met anybody else who had the same treatment as I did.
Nicky
Deciding on the Right Follicular Lymphoma Treatment
Stephanie: Could everyone share what treatment they’ve had and what that looked like, and then shift into the treatment decision-making conversation? Hayley, what treatment have you had and what’s ahead?
Hayley: I had R-CHOP chemotherapy and then Neulasta (pegfilgrastim). I’m doing at-home Neupogen (filgrastim) injections for 10 days to boost my white blood count. I took my last prednisone two days ago. I have a PET scan and labs in six weeks, but as far as meds go, I don’t have any more, nor do I want any more.
Stephanie: I hear you. Watch and wait, or active surveillance, is a big part of follicular lymphoma. Milissa, what have you had in terms of treatment?
Milissa: I had a research drug called mosunetuzumab, a bispecific antibody, which was a good decision. I had eight rounds of that.
Stephanie: Were you on that after some period of watch and wait?
Milissa: No. I was diagnosed in December 2023 and started treatment in January 2024.
Because of the radioactive iodine, I’m trying to stay away from radiation as much as I can.
Nicky
Nicky: I had what I thought was quite an unusual treatment because I haven’t met anybody else who had the same treatment as I did — and I know a lot of FL patients. They put me straight into a clinical trial, so we didn’t have decisions to make, but I wasn’t educated enough to know what I was going to get into.
They suggested I go on a clinical trial of rituximab coupled with radioactive iodine. I was radioactive and put under house arrest for a couple of weeks. I wasn’t allowed within five meters of anyone or 100 meters of children or pregnant women. That was quite confronting, being away from the kids and the whole family for a couple of weeks.
After the infusion of radioactive iodine followed a year’s worth of rituximab and it worked pretty quickly. The lumps melted away within a month or two. Three months into my treatment, I had a PET scan and it was clear. I was no evidence of disease (NED).
I haven’t had a scan since then. Because of the radioactive iodine, I’m trying to stay away from radiation as much as I can. I do have a couple of lumps in my neck that we monitor, but I haven’t needed any treatments since. Fingers crossed that I don’t need any more. But the treatment fractured my immune system, so I manage that, but I manage it pretty well.
Stephanie: I’m glad to hear it. That was a good background to understand if you had these long periods of waiting. To open this into a broader discussion about communication with the healthcare team, you have two people in this: the patient and the care partner. First, there’s the treatment decision-making part, if you had that conversation with your doctor, and then symptom management and reporting what people are feeling. Hayley and Carl, how did you feel you took on the roles when it came to making decisions about your treatment?
Hayley: As far as medical treatment decisions, what do you think, babe?
Carl: I stay in my lane. I stay quiet. I take notes so she doesn’t forget what the doctors say.
Stephanie: Taking notes is good because a lot is coming at you all at once.
I was looking for any glimmer of hope, even if it came with 50 bad things that I read. If I could find two supportive statements that made me feel better, that would be helpful.
Hayley
Hayley: When Andrew was talking about Milissa researching and he was thinking it would make her more anxious than not, I was trying to figure out where that was coming from because I did the same thing. I was looking for any glimmer of hope, even if it came with 50 bad things that I read. If I could find two supportive statements that made me feel better, that would be helpful. But with treatment, I made a lot of those decisions, but they didn’t give us any options because it had transformed.
Carl: Put a lot of trust in the doctors, too. We ask questions, even retrospectively, on why this and not this, and they had very detailed answers to everything. At the time, it was happening so fast. As she said, she didn’t necessarily have a choice, but it all worked out.
Stephanie: You said you stayed in your lane, which I think resonates with a lot of people. I wonder how you were able to do that because, of course, you care for Hayley, so you want to do something. Did you channel wanting to help in a different way, outside of taking notes? How did that manifest for you?
Carl: I helped with the day-to-day stuff as much as I could. She’s pretty strong-willed and independent, so I try not to make her feel like she’s being babied too much. We cleaned up the food around the house and did the typical things hygiene-wise to try and stay healthy and support her.
It was only a year and a half into knowing them, so the emotional connection was different because I couldn’t be as affectionate.
Hayley
Hayley: That was rough. He has an 11-year-old daughter and a six-year-old son. They were both a year younger when I got diagnosed, but I’m close with the 11-year-old girl. We’re buddies. It was sad because I knew that she would probably grasp a little bit. After all, her friend’s mom went through leukemia and it scared her badly. She started crying. She was scared for me. We try to let her know that it’s going to be okay without completely lying and saying I just have a cold, so that was a teeter-totter for sure.
With the younger boy, we try not to make him feel like he’s doing something wrong by continuously reminding him to wash his hands, change his clothes, or shower. Because all of a sudden, I’m like this bubble and he has to stay away from me when we used to lie on the couch together. “Does she not like me anymore? Why is she not being so lovey?” It was only a year and a half into knowing them, so the emotional connection was different because I couldn’t be as affectionate. I was stressed and, to be honest, I thought of them as little germ factories when they came home and I was scared. After I got diagnosed, I went into neutropenic fever and stayed in the hospital for a week. It was a lot to endure.
When they got a little bit older, we had a conversation with them. The emphasis was that when you hear the word ‘cancer,’ it’s not something to be immediately scared of.
Craig
Stephanie: You’ve gone through a lot, but I appreciate you bringing this up because there’s the obvious stuff and then there are all the other things that come with treatment that impact day-to-day life. Nicky and Craig, with the kids, did you play different roles in communicating the diagnosis?
Nicky: We didn’t tell them.
Craig: The kids were too young when Nicky was going through treatment. When they got a little bit older, we had a conversation with them. The emphasis was that when you hear the word “cancer,” it’s not something to be immediately scared of. There is a lot of information. There are different types and a lot of different scenarios. We wanted to reassure them that mum has a condition, but it’s something that we manage and something that we’re going to manage for the rest of her life, so that’s how we move forward with that.
Nicky: Our daughter was five when I finished treatment. When I went away, I told her it was for work and she was mad at me for going away. She noticed how it affected my mental health. For the whole year after finishing treatment, before I set up the Facebook group, I was absolutely miserable and she felt that. It wasn’t until I realized how much she felt that was when I knew I had to do something about my mental health.
Our youngest was very little. He wasn’t even one when I was diagnosed, but when we told them, like Craig said, we didn’t want them to be scared of the word cancer. We decided to tell them when we were doing some fundraising for the leukemia foundation. It was a lantern night, so we had fun. We explained why we were fundraising and why mum has a white lantern and everyone in the family has a blue lantern. We try to explain it in a way that wasn’t scary for them.
I didn’t know much about the clinical trial drug because it hadn’t been out very long, maybe two years, so there wasn’t much information, which was scary.
Milissa
How Care Partners Can Help with Treatment Decision-Making?
Stephanie: Milissa and Andrew, what were the roles that you played in treatment decision-making in the doctor’s office? Did you find that one was speaking up more than the other?
Milissa: I have a mini homestead, so I have several animals to take care of, so thankfully, he stayed back for that. I went by myself a couple of times and then my mom went with me for the decision-making. I was given two options for treatment: one was the clinical trial and the other was rituximab and Revlimid (lenalidomide). The doctor waited for the clinical trial. He pushed me into it creatively.
Stephanie: Can you talk about that more? What did he say and what resonated so that you decided to go in that direction?
Milissa: I, of course, researched both. I didn’t know much about the clinical trial drug because it hadn’t been out very long, maybe two years, so there wasn’t much information, which was scary. It seemed like my insurance would pay more for the standard treatment, so I was leaning more toward that.
My doctor told me that he would have the pharmacist talk to me about the standard treatment; the clinical trial nurse talked to me about the clinical trial. I’m glad I did it. He said that the clinical trial had fewer side effects and discussed those with me at length. He also discussed some of the side effects of the others. That’s when I decided to do the bispecific antibody.
From very early on, she knew that was the route she wanted to go, so that fell into place very quickly.
Andrew
Stephanie: Andrew, when Milissa is talking to you about these treatment options, did you agree? What thoughts did you have about the decision?
Andrew: I was a little concerned about the clinical trial, like how much is known about it and the success rate, but Milissa was concerned about the side effects of the more traditional treatments. If I remember, the insurance would cover her to receive these clinical trials at Memorial Sloan Kettering Cancer Center in New York City. I don’t know if she would have been able to receive that locally, but we had some unsatisfactory experiences with some of the local healthcare facilities. Memorial Sloan Kettering is world-renowned.
My only concern was her going to New York City by herself because she couldn’t go on public transportation or fly, so she needed somebody to take her. Fortunately, her mom stepped up and would take her to New York and I would stay behind and take care of the farm.
Stephanie: How important was it to have Milissa’s mom? Who else was part of the regular support circle and how important was that?
Andrew: Her mom was supportive. Sometimes she would get stressed with her mom because her mom had her thoughts about things and that’s normal. I know she would confide in some of her girlfriends and seek support from them as well. But from very early on, she knew that was the route she wanted to go, so that fell into place very quickly.
Stephanie: Hayley and Carl, and Nicky and Craig, were there additional major players in your support circle?
Hayley: Definitely both sides of our family, but I would say the next after Carl is my mom. She definitely has been there every step of the way. The only time she wasn’t was when she was sick and when my dad got sick. She was in tears over not being able to be at treatment with me. She definitely made it very clear that it doesn’t matter what’s happening or what time of day — she wants to be there and be able to help me.
We’re similar in some ways and opposite in a lot of ways. We butt heads at times, but she put everything to the side. There are things about her that drive me crazy and she can be a little overbearing, but whenever she’s at the doctor, she’s able to turn it off and let me do my thing.
One time, she begged to be in the room to see the doctor and I remember saying, “I have a lot of questions. It’s already a small room. We have the doctor, the nurse coordinator, me, and him (referring to Craig). There’s no room for you in there.” She asked the people at the front desk, even though I said no, and still came and knocked on the door. I let her in and said, “I have a lot of questions for the doctor and a lot of stuff I want to cover, so I need you to reel it in,” and she did. She sat there quietly and was grateful to be in there. But she’s been good throughout the whole thing.
She definitely made it very clear that it doesn’t matter what’s happening or what time of day — she wants to be there and be able to help me.
Hayley
Stephanie: It sounds like you were very clear with your communication in setting boundaries.
Hayley: Yeah. They needed to be set.
Carl: It’s one of Hayley’s strong suits.
Hayley: And she did a good job.
Carl: The web runs pretty wide with us. My parents were great in helping out with the kids. I have them 50% of the time, so we aligned our schedule with chemo. The first one got delayed, so all bets were off after that. We had to be fluid and flexible. We had help from both sides of the family all the way down the list at some point, whether it was with the dogs, the kids, or everything in between. It was pretty great. A lot of friends reached out. She received a lot of care packages and flowers. Those meant a lot in those times.
Hayley: You don’t realize how much they mean. Flowers have never meant more. They showed up at the door and my whole day became better. I wish that I didn’t know how people could make someone feel, but now I know moving forward for not if but when I know somebody that goes through this. I’m almost thankful that I know how to take care of them and I’m excited to pass along what people have done for me.
We had great support on both sides of the family… the people I am friends with are like family… Whatever I or Nicky needed, they were able to accommodate that for us and I’ll be forever grateful for that.
Craig
Stephanie: That’s beautiful because you’ve been in this position and now you’re paying it forward with all that empathy. Nicky and Craig, how about you? Did you have additional support and how important was it to have that?
Craig: We had great support on both sides of the family as well. We have an extra network of our friends who we’re close with; these were people we grew up with and stayed friends with. I don’t have a large circle of friends, but the people I am friends with are like family. It was good to be able to rely on them and fall on them when I needed to debrief and maybe forget about things for a while. Whatever I or Nicky needed, they were able to accommodate that for us and I’ll be forever grateful for that.
Nicky: We’re lucky that my parents live about 200 meters down the road from where we live. Although at the time of my diagnosis, my mum wasn’t well, so she couldn’t be there for me. But Craig’s mum was a pillar of strength, particularly for me. She lives about an hour away from us, but she took me to my first treatment. I stayed at her place because I had my treatment in Perth. She has metastatic breast cancer. At the time, it wasn’t metastasized, but she had been through breast cancer, so we connected on that level as well. She was probably one of our biggest supporters, as well as my parents and our close friends. We’re very lucky because when I went away for a couple of weeks, we had family support the kids so Craig could keep working and I was appreciative of that.
We got used to operating on a little bit of a higher stress level with dealing with treatments and the whole situation.
Carl
Biggest Emotional Challenges for Couples
Stephanie: For Hayley, Carl, Milissa, and Andrew, did anything resonate for you in terms of the emotions and what you found was the most challenging? Have you been able to talk about it with each other or did you talk to other people about it and preserve your relationship differently?
Carl: It was always the outside stresses that caused the most tension, like one of the kids getting sick or something like that. Going through treatments, Hayley was very lucky. She definitely had some bad moments, but she had more good days than bad days. I would think that would be fair to say. We still had a lot of normal, if you will, quality time together, even through treatments. But when something would go wrong, unforeseen challenges piled on top of everything else.
We got used to operating on a little bit of a higher stress level with dealing with treatments and the whole situation. We were already at our tipping point, so at times when something else would get introduced, it would put us over the edge, but we always got to settle down and bring it back. What helped us was being grounded and centered at home. Honestly, it’s one of the things that I see as a benefit and a net gain out of this. We got a lot of quality time in our house. All the running gets cut out. You trim back the activities, which can be hard but at the same time, it was definitely good for us and the kids.
I was too focused on making sure that Milissa was staying positive and trying to take care of things… I have my little hobbies and things that I do on the side to help ease my mind.
Andrew
Stephanie: There’s always attention on the patient but maybe a lot less so on the care partner — that was my experience at least. Everyone was worried about me. I remember telling my now husband, “Hey, what you need, you need. Make sure to take care of yourself.” How did that show up for you, Carl, or did it not?
Carl: It did in ways. I have some property about an hour away, so when it would build up, I’d escape there for a few hours and take time when I needed it. Luckily, I didn’t need a whole lot, but Hayley was always understanding of it. She’d be able to tell. We’re pretty in tune with each other, so it ended up working out okay on my end.
Stephanie: Andrew, how did that show up for you? Did you take care of yourself? Was it a thought that crossed your mind?
Andrew: No, I was too focused on making sure that Milissa was staying positive and trying to take care of things. I went with her a couple of times for her treatments, so it was comforting for me to be able to accompany her, feel what she was going through, and see how the process was. It eased my mind a lot. I felt that she was getting good care there, so that made me feel good. I’m the kind of person who stays busy and that helps. I have my little hobbies and things that I do on the side to help ease my mind.
Biggest Lessons Learned as a Patient and Caregiver
Stephanie: You shift from being partners in one way to this completely different dynamic of patient-care partner, so things like emotional health, mental health, intimacy, and the way that you look at one another in all these different ways can be impacted. I think that’s very natural. What is the biggest way that you saw that impacted the relationship and the biggest solution, too?
Nicky: It definitely brought us closer together, didn’t it?
It makes you realize how fragile life is… We’re more thoughtful with how we approach everyday things. You don’t sweat the small stuff anymore because it’s not worth it.
Craig
Craig: Yeah. It definitely made us a lot stronger and more resilient, and changed our perspective on everything. We definitely take a lot more care with the kids and make sure we soak up all the little moments. It makes you realize how fragile life is. To try and put a good spin on this, our lives changed dramatically with the diagnosis, but for the most part, our lives have changed for the better.
Nicky: Absolutely.
Craig: We take better care of ourselves. We’re more thoughtful with how we approach everyday things. You don’t sweat the small stuff anymore because it’s not worth it. Those insignificant things don’t matter because when you think about the big picture, what you’re trying to achieve, and the direction you’re heading and where you’re going, you don’t have time for the small stuff anymore. It’s the big stuff.
Nicky: The mental health aspect was probably the hardest for me. He was an incredible support for me during that time. As I was leaving the hospital, I remember them saying, “Expect it to come back in three to five years, but if it comes back in two years, your prognosis is worse,” so that stayed with me. When I realized I needed to do something about this, I felt like the only thing that would help me at the time was to connect with other people with the same diagnosis. At that time, we couldn’t find anybody. Craig suggested, “Why don’t you start a Facebook group and let them come to you?” That’s exactly what I did and they did. Instantly, all that stress just melted and I felt like I found my people.
Stephanie: Milissa and Andrew, what was the biggest shift for you and the biggest piece of guidance you have for others on that?
Milissa: It was finding people who have gone through the same thing. I joined another research study at Colorado State University where they did exercise afterwards and that changed my life. Now I lead a group that exercise online afterwards and we still stay together. It’s a national group, which is awesome. But for us relationally, it’s evolved. I feel like in the relationship, we’re in the infantile stages and we learned about each other, what our strengths are, and what each other can give, so that was a good thing.
Andrew: The diagnosis and going through the experience of treatment made our relationship evolve. We became a lot more emotionally mature as a couple. It’s still a growing process because you still have to maintain your care and your treatment, but we’re in a much stronger place than we were when we first got the diagnosis.
We learned about each other, what our strengths are, and what each other can give.
Milissa
Stephanie: Hayley and Carl, I know this happened not too far into your relationship and it was a lot to go through. What guidance do you have for other people?
Hayley: I feel like it pushed issues that we hadn’t even come across yet because it was only a year and a half into our relationship, so we had to learn a lot about how we dealt with things. I had never seen him be emotional. I am not an emotional person and then all of a sudden, we’re a wreck for a while and let all of our walls down at one time. It seemed like it would have taken 10 years normally to go through what we went through in 90 days. It escalated our communication and understanding a lot quicker than it normally would have in a relationship.
I know that follicular lymphoma will come back, but I’m ready and I’ve come to terms with that… I’m not nearly as scared as I was at the beginning.
Hayley
But I do think that some positives come of it in general. I can appreciate life more. The meaning of everything is a lot different and I feel like people don’t realize that they treat life as a disposable item, but they do. I’m more appreciative. Looking outside at the green grass seems different from last year. I can’t wait to sit on the beach. I told Carl, “I’m probably going to start crying sitting on the beach this year because I’m so grateful to be here,” especially whenever you think about the alternative that goes through cancer patients’ minds. It’s also new for me, so I’m excited to be on the other side right now.
I know that follicular lymphoma will come back, but I’m ready and I’ve come to terms with that. I’m okay with it being something like a condition, like Nicky and Craig said. It’s going to come back, but there are so many treatments for it. I feel like it’s moving at such a fast rate that I’m not nearly as scared as I was at the beginning.
Carl: I would say quality time was huge for us in terms of what helped us. Within that is obviously talking a lot, whether it was about cancer or not. While hanging out on the couch or in bed, I tried to make a point to get away from cancer talk sometimes. We’re goal-oriented, so we talk about short-term goals and long-term goals, reminding ourselves that there’s another side to this, which we’re starting to see now.
Conclusion
Stephanie: Thank you all for an insightful conversation. Because you’re all at different points of this experience, I think this discussion is going to help so many people who are experiencing different situations. It was so great to hear your perspective in-depth, so thank you so much for joining us.
Thank you again to our sponsor, Genmab, for its support of our independent patient program, again allowing us to be able to host more of these for you. The Patient Story always retains full editorial control.
We want to point out again some of our incredible resources from our friends at The Leukemia & Lymphoma Society and the Living with Follicular Lymphoma Facebook group. The LLS has a community section for people to meet and chat with other blood cancer patients and care partners. It also has free personal guidance through Information Specialists. The Living with FL Facebook group features an ongoing lively chat in real-time with thousands of people from across the globe. It is the biggest FL-dedicated Facebook group that there is.
We hope that this was helpful for you. Thank you so much and we hope to see you at another program soon. Thank you and take good care.
Living Well Together with Follicular Lymphoma: Real Talk from Patients & Partners
Hosted by The Patient Story Team
How do you navigate follicular lymphoma (FL) as a couple — through diagnosis, treatment decisions, and life beyond? In this heartfelt discussion, three couples share their personal stories and unique insights on living with FL. From the shock of diagnosis to finding emotional balance, you’ll hear real talk on what helped them move forward together. Whether you’re a patient or a care partner, this program offers connection, validation, and hope.
I Have a Rare Cancer Diagnosis: Abbie’s Solitary Plasmacytoma of Bone Story
When Abbie was diagnosed with solitary plasmacytoma of bone at just 21, her world didn’t just pause — it shifted completely. Living in Des Moines, Iowa and studying abroad right before her diagnosis, she went from planning medical school to confronting the realities of a rare blood cancer that most people her age have never heard of. While her condition was caught relatively early, the emotional and mental weight of it all hit just as hard as the physical effects.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
It all began with rib pain that seemed minor but wouldn’t go away. Even though a lesion had been spotted years earlier during a scan, it wasn’t until the pain worsened and a biopsy confirmed the diagnosis that everything became real. And like many young people navigating healthcare, Abbie had to advocate for herself before finally finding a doctor who truly listened, which made all the difference.
Abbie underwent six weeks of daily radiation, and although treatment was quick and effective, it wasn’t without challenges. Pain became unbearable, landing her in the hospital and on a complex pain regimen. Still, she managed her treatment largely on her own, even driving herself to appointments. Her resilience is clear but so is the mental toll.
Abbie opens up about what it’s like living with constant uncertainty. With a 70% chance her cancer could progress to multiple myeloma, “scanxiety” is real and ever-present. Every six months, she returns to the Mayo Clinic, holding her breath and hoping her scans are clear.
Yet amidst this uncertainty, Abbie has found a new kind of clarity. Her solitary plasmacytoma of bone diagnosis reshaped how she views success, purpose, and even her identity. She no longer chases external expectations; instead, she’s intentional with her time, her relationships, and her choices. She doesn’t take anything or anyone for granted.
Despite feeling isolated at times due to her age and the rarity of her condition, Abbie is committed to sharing her story, hoping others with solitary plasmacytoma of bone or any rare diagnosis feel less alone. Her advice is simple but powerful: Be grateful. Be vulnerable. Be open. And know that even in moments of solitude, you’re never truly alone.
Watch Abbie’s story to find out more about:
What it’s like to be diagnosed with a rare cancer at 21 and feel like no one gets it.
How one supportive doctor changed everything for Abbie.
The emotional rollercoaster of living with “scanxiety” every six months.
Why Abbie walked away from her medical school dreams.
The unexpected ways cancer redefined her idea of happiness and success.
Name: Abigail W.
Age at Diagnosis:
21
Diagnosis:
Solitary Plasmacytoma of Bone (SPB)
Symptoms:
Lesion on rib visible on earlier scans
Persistent rib pain (localized)
Fatigue
Treatment:
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Michelle’s Story of Faith, Strength, and Self-Care to Overcome Stage 3 Cervical Cancer
Michelle’s story is one of resilience, faith, and self-care. Diagnosed with stage 3 cervical cancer in 2021, she faced uncertainty and fear but chose to believe in herself and trust in God. Before her diagnosis, Michelle suffered a stroke that temporarily took away her voice. As she recovered, she started experiencing heavy bleeding with blood clots and intense lower back pain. While her doctor initially thought it was pre-menopause, Michelle knew something was off. She pushed for further testing, which led to an abnormal pap smear and, ultimately, a cancer diagnosis.
Hearing she had stage 3 cervical cancer was overwhelming. Michelle recalls, “I didn’t realize how much I wanted to live until I heard I had cancer.” But from the start, her care team at Kaiser provided reassurance and a clear treatment plan. She underwent 25 rounds of external radiation, seven chemotherapy sessions, and three brachytherapy treatments. Though she expected chemo to be easy at first, the reality hit hard — nausea, exhaustion, and the mental weight of treatment became part of her daily life. Despite the physical toll, she found ways to uplift herself, marking down the days and focusing on the belief that this was temporary.
Faith played a vital role in Michelle’s healing. She was deeply moved when her internal radiation doctor prayed with her, reinforcing her trust in God’s plan. Throughout her treatment, Michelle leaned into her spirituality, listening to Christian music, reading scripture, and watching uplifting podcasts to keep her spirits high. Her experience also deepened her understanding of self-care. Having dedicated much of her life to raising her daughter after her stroke and stage 3 cervical cancer experience, Michelle realized she needed to prioritize her well-being. She started taking vitamins, eating healthier, and focusing on her health in ways she never had before.
When her doctor called to say she was cancer-free, relief washed over her. Michelle compares the experience of having cancer to experiencing grief — while the world moves on, the emotional weight lingers. But through faith and inner strength, she found hope. Today, Michelle shares her experience on social media to support others newly diagnosed, letting them know that what they’re feeling is normal. She reminds others to believe in themselves and to reach out for support. Her message is clear: “You will get through this. You will come out stronger.”
Watch Michelle’s story and find out more about her experience:
How a stroke unexpectedly led to Michelle’s cervical cancer diagnosis
The surprising moment that deepened her faith during treatment
What no one told her about cervical cancer—and why she shares her story today
The hardest part of chemotherapy (hint: it wasn’t the first session!)
How she’s using social media to empower and support newly diagnosed patients
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Heavy periods, abnormal bleeding, large blood clots, severe cramping, severe abdominal pain, pain radiating down the left leg, loss of mobility in the left leg, loss of appetite, fatigue
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
Joining Forces: Alli’s Integrative Approach to Appendix Cancer (LAMN & PMP)
Alli’s story is one of resilience, self-advocacy, and the power of holistic care. Diagnosed with a rare type of appendix cancer (low-grade appendiceal mucinous neoplasm, or LAMN) that lead to a second rare cancer diagnosis — pseudomyxoma peritonei (PMP) — on Christmas Day in 2023, Alli faced a whirlwind of emotions and medical decisions, leading to personal growth. Living in Perth, Australia, but originally from the UK, she navigated this challenging time far from her extended family. Yet, through it all, she found a new purpose, deeper connections, and a fresh appreciation for life.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Looking back, Alli realizes she had symptoms for years — persistent bloating, constipation, severe abdominal pain, unexplained weight fluctuations — but they were often dismissed. As a nurse practitioner, she knew her body and pushed for answers, yet traditional scans failed to detect her low-grade appendiceal mucinous neoplasm (LAMN) with pseudomyxoma peritonei (PMP). Even after relocating to a different state, her symptoms intensified. It wasn’t until she demanded another scan in December 2023 that doctors discovered a suspicious fluid-filled mass. Days later, she found herself in emergency surgery.
Waking up from surgery, Alli was told her appendix had ruptured and cancer had spread throughout her abdominal cavity, affecting multiple organs. The news was devastating, but Alli’s medical background kicked in and she immediately started researching her options. With only five surgeons in Australia performing the complex peritonectomy surgery needed for her condition, she faced long wait times. Instead of succumbing to feelings of powerlessness, Alli took control of her health, exploring integrative treatments.
Alli traveled to Thailand where she underwent low-dose chemotherapy, hyperthermia, and high-dose vitamin infusions. This integrative treatment approach helped her reduce inflammation and tumor burden, making her stronger for the major surgery ahead. When the time came, Alli flew to Melbourne for the peritonectomy — a grueling 15-hour procedure. Waking up, she was overwhelmed with gratitude. The surgeons believed they had removed all visible cancer.
However, the road to recovery wasn’t easy. Just weeks later, Alli was hospitalized with a bowel obstruction and was told she was too high-risk for another surgery. She managed to avoid emergency intervention, but the experience was one of the most emotionally taxing of her life. Through holistic approaches and self-care, she has since managed her health while embracing a renewed sense of purpose.
Alli now dedicates herself to raising awareness about appendix cancer, self-advocacy in medical settings, and the importance of seeking second opinions. She emphasizes that no one should settle for a single diagnosis without exploring all options. Through social media, she provides hope to others facing cancer, proving that a diagnosis doesn’t define you — it’s how you approach it that matters. Every day, she wakes up grateful for life, her family, and the strength she’s built along the way.
Watch Alli’s story to find out more about:
How Alli’s medical background helped her fight for a proper diagnosis.
Why she chose a combination of alternative and traditional treatments before major surgery.
The mental and emotional impact of possibly dying young, like her mother.
The power of community and self-advocacy in navigating a rare cancer diagnosis.
Name: Alli B.
Age at Diagnosis:
45
Diagnosis:
Appendix cancer – also known as Low-Grade Appendiceal Mucinous Neoplasm (LAMN) with Pseudomyxoma Peritonei (PMP)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
The Routine Check That Wasn’t: Monica’s Stage 1 Colorectal Cancer
Monica Dean, a San Diego news anchor and mom of three, thought she was just checking off a routine health to-do when she went in for her first colonoscopy at 46 and ended up with a stage 1 colorectal cancer diagnosis. She felt healthy and had neither symptoms nor an immediate family history of colorectal cancer. But thanks to a conversation she’d had with a man who wished he’d gotten screened earlier, Monica followed her gut and got the screening anyway. That decision, she says, saved her life.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
During the colonoscopy, doctors found 13 polyps and a two-centimeter mass that turned out to be stage 1 colorectal cancer. Monica describes waking up mid-procedure, still groggy but alarmed when she saw the medical team’s serious expressions. Her world shifted instantly. What was supposed to be a routine checkup had become the beginning of a life-altering experience.
Even though the diagnosis was shocking, Monica leaned heavily on her faith, family, and inner strength. Waiting for the final pathology results was agonizing. She wrestled with fear, numbness, and uncertainty, but her belief in God kept her grounded. Through it all, she stayed committed to showing up for her family. She even anchored the news 30 minutes after getting her diagnosis because doing something familiar felt oddly comforting.
Tests confirmed that her stage 1 colorectal cancer hadn’t spread. She met with multiple doctors, including the chief of colorectal surgery at UC San Diego Health, and decided on a lower anterior resection surgery. This complex surgery required her to live temporarily with an ileostomy, something she had never imagined but learned to manage with grace and strength.
Post-surgery pathology brought good news: no lymph node involvement and clean margins. She wouldn’t need chemotherapy or radiation. Monica candidly shares the physical and emotional toll of recovery, including fatigue, pain, and adjusting to life with an ostomy bag. But she also emphasizes the clarity that came from it all — how it slowed her down, helped her re-evaluate her priorities, and deepened her faith.
Now, Monica’s passionate about encouraging others to get screened, especially if you’re nearing 45 or have a family history. She wants people to know that catching stage 1 colorectal cancer early can be lifesaving and that leaning into your support system, whether it’s faith, family, or community, makes a world of difference.
Watch Monica’s story to learn more about:
Why she scheduled a colonoscopy despite feeling perfectly healthy.
The one conversation that pushed Monica to get screened, which may have saved her life.
How a surprise diagnosis gave her a deeper sense of purpose and a renewed perspective.
How community and clarity emerged in the most unexpected way.
Name: Monica Dean
Age at Diagnosis:
46
Diagnosis:
Colorectal Cancer
Staging:
Stage 1
Symptoms:
None; caught at a routine colonoscopy
Treatment:
Surgery: Low anterior resection with temporary diverting ileostomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
How Michelle and Jolene Each Live with Malignant PEComa, an Incredibly Rare Type of Cancer
Michelle and Jolene’s stories are about resilience, advocacy, and the power of awareness. Both women were initially diagnosed with other conditions with overlapping symptoms to their cancer diagnosis. Michelle had excessive bleeding that was attributed to fibroids, while Jolene attributed her symptoms to menopause.
With the COVID-19 pandemic adding to medical delays, neither of them received an immediate diagnosis. They both went through hysterectomies to treat their suspected diagnoses, leading to the shocking revelation that they each had malignant PEComa cancer (perivascular epithelioid cell tumor), a rare and incurable form of cancer.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
For both women, the diagnosis came as a gut-wrenching surprise. Jolene recalls waking up from surgery, groggy from anesthesia, only to learn that things didn’t look right. Michelle, a researcher by nature, turned to Google for answers, even though her doctors warned against it. The fear of the unknown weighed heavily on them, but they knew they had to press forward.
The reality of treatment set in quickly. There is only one FDA-approved therapy for malignant PEComa cancer, a drug that became available just in time for Jolene to start in 2022. Michelle initially had a strong response to it and she remains stable today. Still, both women live with uncertainty. Jolene, a mother, made it her mission to be present for her daughters’ milestones, focusing on each day rather than an unknown future. Michelle, on the other hand, has embraced self-advocacy, meticulously documenting her medical journey so others can learn from it.
Michelle and Jolene are determined to raise awareness of malignant PEComa cancer. Unlike breast cancer or leukemia, PEComa is virtually unknown, even among medical professionals. To note, PEComas are usually benign (noncancerous) and localized, but some are malignant (cancer), which is what both Michelle and Jolene were diagnosed with. They believe that through advocacy and exposure, more people will recognize the symptoms early and push for proper diagnoses.
Their advice is simple yet powerful: never lose hope. Every case is different, and statistics don’t define a person’s future. They emphasize trusting one’s medical team, staying informed, and, most importantly, finding a support system.
Watch the video to find out more from Michelle and Jolene about:
How a selfless act of love led to an unexpected diagnosis.
The one FDA-approved drug that stands between them and an uncertain future.
Why raising awareness for rare cancers like malignant PEComa is more important than ever.
The advice they have for everyone who’s facing a tough diagnosis.
Name: Michelle C.
Diagnosis:
Malignant PEComa cancer (perivascular epithelioid cell tumor)
Staging:
Stage 4
Symptoms:
Heavy bleeding
Asymptomatic lung masses discovered through kidney donor evaluation
Thank you to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Michelle and Jolene were both diagnosed with an incredibly rare type of cancer. Michelle was diagnosed in 2023, while Jolene was diagnosed two years prior. They received a diagnosis so rare that it affects less than one out of 1 million people each year: malignant PEComa (perivascular epithelioid cell tumor). According to the National Organization for Rare Disorders, this diagnosis is “most likely to occur in middle-aged females, with some studies reporting PEComas are five to seven times more likely in females than males.”
I was experiencing some bleeding… it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much.
Jolene
The Red Flags for Michelle and Jolene
Michelle: Originally, I had fibroids, so I experienced excess bleeding during my menstrual cycle. At that time, I thought it wasn’t typical, so I called the doctor and they said that irregular menstrual cycles are normal sometimes.
Jolene: I was experiencing some bleeding and I thought it was possibly related to starting menopause. It was also during COVID, so I wasn’t going to the doctor a lot. I didn’t worry about it and it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much. They did some scans, thought it was a fibroid, and proceeded from there.
To treat each of their other diagnoses, both Michelle and Jolene opted for hysterectomies, a surgical procedure that removes the uterus. The procedure would uncover cancer for both of them.
Hysterectomy Uncovering Their Cancer
Jolene: I had an early morning surgery and they told me how long it would possibly take. I remember coming out of the anesthesia and seeing the clock in the recovery room — it was three hours later than I’d thought. My surgeon told me that when they started the surgery, things didn’t look right, so she sent a sample off for biopsy. They didn’t know what kind of cancer it was, but they knew it was cancer. I was so out of it that I just accepted it.
Michelle: I was scared. I’m the type of person who when I don’t know what something is, I have to Google it and look it up, which my doctors don’t recommend. They told me that Google is not my friend. But I always want to learn. I love reading and doing my research. I did Google it and it was scary. My main concern was the life expectancy.
Michelle and Jolene received the news no one ever wants to hear: the cancer is back and now it’s Stage 4.
I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Michelle
Finding Out They Have Stage 4 Cancer
Jolene: I can’t even describe how excruciating the pain was. Internal bleeding is one of the worst pains that you can feel. I wasn’t at the main hospital because I went to the hospital where I thought I would be able to get in faster and they performed a procedure to slow down the bleeding.
I was in shock. I was diagnosed in May. That happened in January and in February, I had another surgery. The tumor was fairly large. Recovery was difficult. It was painful and took quite a while, but the margins were clear. No lymph node involvement. At that time, the doctor told me that I was now stage 4 and it wasn’t curable.
Michelle: My brother was suffering from renal failure. He didn’t want to talk about it, but I went behind his back and got tested to see if I was a potential match. I went through the donor evaluation, which is a pretty rigorous testing process to make sure that the donor is healthy enough to donate. At the end of the evaluation, they did a chest X-ray and found multiple masses in my lungs. I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Jolene: You’re always living in fear, just knowing how quickly it came back and how severely the first time. So I can give you an example. Three weeks ago, I felt a lump kind of in my upper leg, and then a week later I that was very tender. I felt another one in like my armpit area. And those areas aren’t really covered by the CT scans I get every three months.
So to say that I was a mess is putting it nicely. This past week, they scheduled a PET scan for me right away. I don’t have the final report, but the nurse practitioner called me and said it looks good.
It’s really hard not to react to any little lump [or] bump, because you know that catching it more quickly is probably to your benefit.
After Michelle and Jolene found out about the malignant PEComa, they learned what their future looked like. The FDA had only approved one therapy for malignant PEComa, approving nab-sirolimus in 2021 for patients with “locally advanced unresectable or malignant PEComa.” (FDA)
Discussing The Only Treatment Option for Malignant PEComa Cancer
Michelle: I asked, “What’s going to happen? Is my hair going to fall out?” When you think about chemotherapy, you think of the worst. Am I going to be having extreme sickness? Am I going to lose my hair? Am I going to be able to function? Those were my main concerns. I was okay until that appointment. I was apprehensive, but I was okay until we started discussing it because then it was real. I cried at that appointment.
Jolene: It was approved by the FDA a month before I started it, so I couldn’t be more thankful that they were able to develop that when they did. I started in April 2022 and told my daughters that it isn’t curable, that I’ll be on this medication, and that I will be with them for as long as I can. That’s what I continue to tell them, that I will be here as long as I can be. I honestly didn’t think I would be here because based on the clinical trials, it typically works for a year and a half to two years.
Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Michelle
Michelle: That was an, “Oh, s***,” moment. I thought, “One drug. Great.” My mind always goes far, so I thought, “What happens if it doesn’t work? What do I do?”
I’m grateful that there is a drug because that drug wasn’t available in 2015 when I received my initial diagnosis. If my disease was malignant from the beginning, I don’t know if they would have been able to treat it. Initially, I had an amazing response to the drug. I had rapid and significant shrinkage of tumors, and now I’m stable. Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Looking at the Future Living with Malignant PEComa Cancer
Michelle: In the beginning, I felt doomed. Am I going to live to see retirement? Am I going to be able to do some of the things I want to do? That was concerning. The unknown was scary. Nobody knows when their time is up, but that’s always in the back of your mind with cancer. I don’t necessarily dwell on it, but every once in a while, it’ll pop up. What do I do? Do I retire now or do I make sure that I have something for later? I’m still working part-time because I need some kind of normalcy in my life. I need structure and a purpose.
My daughters drive me to keep going… I want to be here and get my girls in as good of a place as they can be.
Jolene
Jolene: My daughters drive me to keep going and the fact that there isn’t another option. I will take what I have right now with the limitations that I have, which are the side effects. But given the alternatives, I want to be here and get my girls in as good of a place as they can be. I can’t imagine losing a parent as a teen or early 20s because my parents are still alive and doing well, and they’re a big part of my support system.
What Michelle Has Learned
Michelle: The one good thing out of this is I learned to advocate more for myself. I learned how to ask more questions and how to push a little bit more. In the beginning, I said if this was going to kill me, I want everybody to know about it. Not that I want to donate my body to science, but I want people to see my records and learn something. I take meticulous notes. It sounds morbid, but when I go, I’m going to have someone hand over my binder with all of my notes and paperwork.
Jolene’s Biggest Advice
Jolene: Never give up hope. Don’t look at other people who might have the same diagnosis and assume that you will follow the same path. I have sisters who are nurses, and they told me not to Google and to look at what has happened to other people. Your care team knows you the best and they’re focused on you. You don’t know what’s going to happen. I feel like right now at least, I’m proof of that.
When it came back in my liver, my goal was to be around for my youngest daughter’s high school graduation and my middle daughter’s college graduation, and those were in May and June 2024. I’m still hanging on. I hope and pray that I will be around for a long time to come but at the same time, facing the reality that we don’t know.
People don’t know what PEComa is… Hopefully, people will become curious and talk about it more.
Michelle
Raising Awareness for PEComa Cancer
Michelle: I want people to be aware of PEComa. I want people to know what it is. When somebody says breast cancer or leukemia, people know what it is, but people don’t know what [malignant] PEComa is.
There are a decent amount of people who I’ve run into that say they know what a sarcoma is, which is rare also, but the subtype is ultra-rare. I want people to know what it is and to become curious. If they know what it is and people talk about it, there’s more exposure. Awareness is very important to me. Hopefully, people will become curious and talk about it more.
Special thanks again to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Thank you for sharing your stories, Michelle and Jolene!
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods
Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib) ...
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Navigating Life After Cancer at 18: Lauren’s Primary Mediastinal Large B-Cell Lymphoma Story
Lauren reflects on her experience of being diagnosed with primary mediastinal large B-cell lymphoma, a type of non-Hodgkin’s lymphoma, at just 18 years old. Growing up, she had a busy and active life, balancing school, sports, and church activities. However, in the summer of 2019, after graduating high school, she started noticing some unusual symptoms. She developed a persistent dry cough that wouldn’t go away despite various treatments. Over time, she became extremely fatigued, had trouble breathing, and noticed swelling and discoloration in her left arm. These signs eventually led to her discovering a lump under her arm, prompting her to visit her pediatrician.
Despite several visits and tests, the doctors initially brushed off some of Lauren’s concerns. Her pediatrician detected a heart murmur and then referred her to a cardiologist. After more tests, the cardiologist’s findings led Lauren to the emergency room, where a CT scan revealed a large tumor in her chest. An oncologist quickly confirmed the worst: lymphoma. This shocking diagnosis changed everything, and doctors rushed her to a larger hospital for further testing, where she learned the tumor was pressing on her lungs and heart.
Doctors diagnosed Lauren with a rare subtype of non-Hodgkin’s lymphoma called primary mediastinal large B-cell lymphoma. Her treatment plan included six rounds of chemotherapy over six months. She experienced significant side effects, including fatigue, hair loss, mouth sores, and flu-like symptoms after each round. But through it all, she found solace in her faith and began documenting her experience through social media. Sharing her story on YouTube allowed her to connect with others facing similar battles, turning her experience into a source of strength for herself and others.
After completing chemotherapy, doctors declared Lauren cancer-free. She celebrated this milestone but acknowledged the challenges that came afterward, such as health anxiety and long-term side effects, including fertility concerns. Nonetheless, she has embraced her life post-cancer, celebrating the lessons learned and the life still to be lived. Lauren’s story is one of resilience and empowerment. She has used her experience to help others, share her journey, and find her true passion in marketing and public relations.
Watch her story to hear from Lauren on:
How she turned her cancer diagnosis into a platform for hope and connection.
How she faced the unexpected with faith and strength.
How she navigated the toughest challenges of chemotherapy, including hair loss and the emotional toll.
What she wishes she had known during treatment and how she found purpose in the hardest moments.
Name: Lauren Mae D.
Age at Diagnosis:
18
Diagnosis:
Primary Mediastinal Large B-Cell Lymphoma (PMBCL)
Symptoms:
Dry cough
Extreme fatigue
Trouble breathing
Swollen and discolored left arm
Lump under the arm
Treatment:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
From Fatigue & Flares to Self-Advocacy: Chaylee’s Psoriatic Arthritis Experience
Editor’s Note: At The Patient Story, we’ve built a platform where real stories empower people facing cancer—but that same storytelling power can uplift those living with other serious health conditions, too.
We’re expanding our reach to include chronic autoimmune diseases like psoriatic arthritis—a condition that’s often misunderstood and underdiagnosed, especially in young adults. In this story, Chaylee shares her experience navigating overwhelming fatigue, joint pain, and years of frustration before finally getting the right diagnosis. From treatment setbacks to mental health challenges and moments of advocacy, her story offers raw honesty, encouragement, and a reminder that no one should face chronic illness alone.
When Chaylee started feeling wiped out all the time and noticed her joints swelling, she knew something was wrong, but she didn’t expect it to be psoriatic arthritis. At the time, she had just graduated high school and was starting college. Instead of soaking up her independence, she found herself stuck on the couch, too fatigued to move and dealing with painful, swollen joints. It wasn’t just uncomfortable; it was life-disrupting.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Her first doctor brushed her off with a fibromyalgia diagnosis and a prescription that left her feeling foggy and unable to function. She dropped out within a week of starting college, losing her full-ride scholarship. That low point was painful, but it pushed her to take control. Chaylee moved six hours away to Boise for better care, which paid off. A new rheumatologist listened to her, took her symptoms seriously, and finally diagnosed her with psoriatic arthritis in January 2023.
Looking back, the signs were all there, especially the scalp psoriasis Chaylee had dealt with since she was a pre-teen. But no one ever told her that psoriasis and psoriatic arthritis often go hand in hand. That lack of awareness was frustrating, especially since early intervention makes such a big difference.
While navigating chronic illness as a young adult isn’t easy, Chaylee found ways to adapt. Community played a huge role. Connecting with others online who understood what she was going through made her feel less alone. She also tapped into creativity, making spoon jewelry to connect with fellow patients and joining the Young Patients Autoimmune Research and Empowerment Alliance (YPAREA) to help make research more accessible for people her age.
Chaylee’s treatment took time to figure out. Celecoxib didn’t work and methotrexate helped but came with heavy side effects. Eventually, she started adalimumab injections, which gave her more consistent relief from psoriatic arthritis symptoms. While flare-ups still happen — especially in cold weather or under stress — she’s found ways to manage them.
Some of Chaylee’s biggest lessons? Self-advocacy is everything. Learning to speak up, ask questions, and request better care changed her life. She’s also passionate about mental health — reminding others that your worth isn’t defined by productivity and that it’s okay to rest. Psoriatic arthritis may have changed her plans, but it’s also helped her discover new passions, connect with others, and live more intentionally.
Watch Chaylee’s story to learn more:
Discover how Chaylee rebuilt her life after her chronic illness disrupted her future plans.
See how a correct diagnosis turned confusion into clarity and relief.
Learn how finding creative outlets helped transform isolation into empowerment.
Explore how Chaylee is breaking stereotypes about psoriatic arthritis and young adults.
Get inspired by how she balances work, advocacy, and well-being despite chronic pain.
Name: Chaylee M.
Age at Diagnosis:
19
Diagnosis:
Psoriatic Arthritis
Symptoms:
Severe fatigue
Swollen fingers and face
Joint weakness
Flaky skin
Rashes
Long-term scalp psoriasis
Treatments:
Celecoxib
Methotrexate
Adalimumab injections
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Painful cracked skin on the scalp, inflammation on the top of the foot, joint pain in the foot Treatments: Shampoos, creams, injections, pills, prescription medications, biologics
Symptoms: Psoriasis: small red spots on thighs, face, and ears after catching strep throat; Psoriatic Arthritis: foot swelling, joint pain in toes, fingers, and hips
From Itchy, Painful Skin to Empowerment: How Victoria Navigates Life with Plaque Psoriasis
Editor’s note: At The Patient Story, we’ve built a platform where real stories empower people facing cancer. But the need for that same kind of understanding and connection extends far beyond cancer to other serious health conditions.
We’re expanding our reach to include more of these lived experiences—because they, too, can be life-changing. Psoriasis is one such condition: a chronic autoimmune disease that affects millions and remains widely misunderstood.
In this story, Victoria shares what it’s like to live with plaque psoriasis—from painful flares and treatment trials to stigma, advocacy, and unexpected sources of hope. If you’re looking for authentic insights into psoriasis treatments, emotional resilience, and the power of community, her voice will resonate.
Victoria, known online as @flyforaginger, is a content creator and social media manager based in San Diego, California. She was diagnosed with plaque psoriasis in 2010 and describes the experience as frustrating yet hopeful. Since psoriasis is an autoimmune disease, finding the right treatment isn’t a one-size-fits-all approach — it’s about trial and error, and adapting to changes over time. Though the process can be exhausting, she remains grateful for the many treatment options available.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Victoria’s first symptoms appeared in middle school as painful, cracked skin on the back of her scalp. By the time she reached high school and college, inflammation on her foot became another concern. What started as a mysterious bump led to her plaque psoriasis diagnosis and, eventually, psoriatic arthritis. Unfortunately, not every doctor she saw took her seriously. A rheumatologist even dismissed her arthritis symptoms entirely, highlighting the all-too-common struggle of being told “nothing is wrong” when, in reality, something very much is.
Determined to find answers, Victoria continued seeking care. While some doctors were dismissive, others went above and beyond to help her access treatment. One dermatologist was so frustrated by her lack of progress that he offered expensive injections at a fraction of the cost. But Victoria knew that couldn’t be her only option—so she sought another opinion and discovered better treatments. This experience reinforced a vital lesson: doctors are experts, but patients know their bodies best. Advocating for yourself is crucial.
Plaque psoriasis impacts more than just Victoria’s skin; it takes a toll on her mental health, confidence, and daily life. Flares can be painful and emotionally draining, especially since stress is a major trigger. And because she’s a content creator, showing her face online — sometimes during a flare — can feel vulnerable. However, sharing her reality has created a supportive community where people openly discuss their struggles, celebrate their wins, and exchange tips. Turning her experiences into moments of education and advocacy has been a game-changer.
As a plus-size woman, Victoria faces stigma not only about her body but also about her skin condition. Some people blame her plaque psoriasis on her weight, pushing harmful and inaccurate narratives. Rather than engaging with negativity, she focuses on spreading accurate information and fostering a compassionate community. She reminds others that psoriasis isn’t anyone’s fault—what works for one person may not work for another. No matter what, everyone deserves respect and understanding.
Over the years, Victoria has tried countless treatments, including over-the-counter creams, prescription medications, steroid injections, and biologics. For eight years, she participated in clinical trials, which provided access to cutting-edge treatments at no cost. While some worked and others didn’t, clinical trials gave her better care than she had ever received elsewhere. She encourages others to research trials as an option, emphasizing their safety and the attentive medical oversight involved.
Victoria urges people to curate their social media feeds with uplifting, empowering voices. Following people who embrace their conditions and exude confidence can make a world of difference. She also emphasizes the importance of mental health care—whether that’s therapy, deep breathing, or simply unwinding with a favorite TV show. At the end of the day, she wants people to know they are not alone. Community, advocacy, and self-love can turn even the hardest days into something meaningful.
Watch Victoria’s story to find out more:
The doctor said, “There’s nothing wrong with you”—but Victoria knew better.
How an artistic photo shoot of her psoriasis flare changed everything.
From stigma to self-love: Victoria’s raw take on living with psoriasis.
What she learned from eight years of clinical trials (and why she recommends them).
The unexpected way social media became her greatest source of support.
Name: Victoria V.
Age at Diagnosis:
19
Diagnosis:
Plaque Psoriasis
Symptoms:
Painful cracked skin on the scalp
Inflammation on the top of the foot
Joint pain in the foot
Treatments:
Shampoos
Creams
Injections
Pills
Prescription medications
Biologics
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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