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The Latest Treatment Options for Relapsed/Refractory Follicular Lymphoma

The Latest Treatment Options for Relapsed/Refractory Follicular Lymphoma

Edited by: Katrina Villareal

Follicular Lymphoma 360: The Latest Treatment Options For Me
Hosted by The Patient Story
Discover the latest in treatment options for relapsed/refractory follicular lymphoma from leading experts. This insightful webinar covers everything from the nature of the disease to innovative therapies and patient support. Don’t miss this opportunity to learn and connect with those at the forefront of lymphoma care.
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Discover the latest in treatment options for relapsed/refractory follicular lymphoma from leading experts to help you or your loved one navigate this journey with confidence and hope. Dr. Joshua Brody from The Mount Sinai Hospital and Dr. Celeste Bello from the Moffitt Cancer Center discuss bispecific antibodies and CAR T-cell therapy, including their benefits and side effects.

Understand the role of watchful waiting and active surveillance. Gain valuable advice from lymphoma specialists on navigating treatment options and clinical trials. Discover the importance of support groups and resources for patients.


LLS

Thank you to The Leukemia & Lymphoma Society for their continued partnership.


Genmab

Special thanks to Genmab for its support of our independent patient education content. The Patient Story retains full editorial control.



Introduction

Stephanie Chuang, The Patient Story Founder

Stephanie Chuang: I’m the founder of The Patient Story and a blood cancer survivor myself. I went through hundreds of hours of chemotherapy for my diffuse large B-cell lymphoma diagnosis. During that time, I realized how lonely it was and how hard it could be to get good information, and that was the genesis of The Patient Story.

Our goal is to help patients and care partners navigate life after a diagnosis and what it means in human terms. We do this primarily through in-depth patient stories and educational programs. This is especially important in spaces like follicular lymphoma. Patients and loved ones are being told by doctors that it’s highly treatable but not curable, so it’s great to know the latest therapy options and clinical research. We stand behind this message of self-advocacy, especially after diagnosis.

We want to thank Genmab for supporting our independent educational program. Their support helps us host more of these programs for free. The Patient Story retains full editorial control of all content.

We’re bringing this to you in collaboration with The Leukemia & Lymphoma Society, which has raised and invested over $1.5 billion in blood cancer research and provides free educational resources and support. Their information specialists provide one-on-one support on questions from treatment to social and financial challenges.

Stephanie Chuang

While we hope that you will walk away with more knowledge, we want to stress that this is not a substitute for your medical advice.

Our discussion focuses on the latest treatment options for relapsed/refractory follicular lymphoma. My co-moderator Dylan Lepak, another non-Hodgkin lymphoma survivor who became a patient advocate, will help lead the discussion.

Dylan Lepak, Patient Advocate

Dylan Lepak: I’m a diffuse large B-cell lymphoma survivor like Stephanie. I was diagnosed in 2021. I went to the hospital with stomach pain and came out with a horrible diagnosis, but luckily, I had a very standard treatment approach. I went through six cycles of R-CHOP and since then, I’ve been good. Since that time, I’ve done a ton of different charity work and moderated online discussion boards.

Follicular Lymphoma 360 Latest Treatment Options
Dr. Celeste Bello, Hematologist-Oncologist

Dylan: Dr. Celeste Bello is a hematologist-oncologist and senior member of the Malignant Hematology Program at the Moffitt Cancer Center. She has a special expertise in Hodgkin’s lymphoma and sits on the board of the NCCN Guidelines for Hodgkin’s lymphoma.

Dr. Bello, when you first see a patient with lymphoma, what message do you want them to take away after that first meeting?

Dr. Celeste Bello: I try to convey to them that they can relax and take a deep breath. In most cases, we can manage this quite well. Most of the meeting is trying to get everybody’s anxiety down a bit.

Dr. Celeste Bello feature profile
Follicular Lymphoma 360 Latest Treatment Options
Dr. Josh Brody, Hematologist-Oncologist

Stephanie: Another amazing doctor and leader in this space is Dr. Josh Brody, a hematologist-oncologist, director of the Lymphoma Immunotherapy Program at Tisch Cancer Institute at Mount Sinai in New York, and faculty member of the Icahn Genomics Institute. Since 2011, he has developed The Brody Lab, a translational cancer immunotherapy lab that investigates the development of novel therapies, particularly for lymphomas, and specializes in how to use immunotherapy against treatment-resistant lymphoma.

Dr. Brody, I know that you’re very invested in patients beyond the clinic. When you see patients and family members in your office, what do you hope they walk away with from that first meeting?

Dr. Josh Brody feature profile

Dr. Josh Brody: Aggressive lymphomas are a sprint and we need to get things going right away, but follicular lymphoma is a marathon. If you see someone starting a marathon by sprinting, they’re not doing it correctly. We don’t want to overwhelm people with information the first time we meet them. We give them the big picture that hopefully this is going to go very well.

There are a lot of great medicines for front-line therapy and second-line therapy. Some patients might need Plan C, Plan D, and Plan E, so how you develop Plan A and Plan B might impact those. Even though there’s no emergency for the vast majority of follicular lymphoma patients, Plan A and Plan B might affect Plan C, so you want to plan out the marathon thoughtfully and as best you can.

We have to be flexible because we’re going to have to change the plan depending on how things go. There are unique options available at some places that may not be available to others. We might want to do the smartest plan A so that we don’t burn bridges down the road.

What is Follicular Lymphoma?

Stephanie: Dr. Bello, could you summarize the nature of follicular lymphoma?

Dr. Bello: Follicular lymphoma is an interesting disease that’s broken down into different subtypes. We have low-grade indolent ones, which are slow-growing, and one subtype that’s a little more aggressive than the others. Most of the time, when we’re talking about follicular lymphoma, we’re talking about the low-grade, slow-growing one.

A lot of times, they’re picked up by accident on another diagnostic test, like a mammogram, which is a common one I see. Somebody had a screening mammogram and there’s no evidence of breast cancer, but there’s an enlarged lymph node in the underarm or axillary area.

Some can behave aggressively, so we have to keep an eye on these people and treat them differently, but as a whole, it’s a long-term disease that’s managed like a chronic illness. We try to keep it under control and if there’s a flare, we can manage that in most cases. It’s a cancer of lymphocytes, but one that sometimes doesn’t even need treatment.

Most Common Symptoms of Follicular Lymphoma

Dylan: Dr. Brody, if patients do have symptoms, what symptoms do you usually see with follicular lymphoma?

Dr. Brody: My grandma died at the age of 101. She didn’t have follicular lymphoma, but she had the next cousin over that we treated in a very similar way as other low-grade B-cell non-Hodgkin’s lymphomas. We did watchful waiting for 37 years and never needed any therapy.

Most people are asymptomatic, but some people can have symptoms. The most common symptom of follicular lymphoma is a painless lymph node. The B symptoms, which are fevers, night sweats, and weight loss of more than 10% of your body weight, are pretty rare for follicular lymphoma and happen in less than 10% of patients.

Terminology: Watchful Waiting vs. Active Surveillance

Stephanie: Some people don’t like “watch and wait” as a term. It can be tough for so many people to be told they’ve got cancer but they don’t need to be treated right away. How do you describe that period to your patients? What term do you use? How often are people told that they’re on watchful waiting or active surveillance? What is the plan that accompanies that?

Dr. Brody: I grew up saying watchful waiting. Dr. Mike Schuster, a lymphoma doctor at Stony Brook, told me he patented the phrase “active surveillance.” I’m not sure if he patented the phrase, but it sounds a lot better. We’re going to actively surveil you as opposed to watchful waiting, which sounds like we’re going to sit around and do nothing. It’s all about branding.

The reality is we’re going to keep a close eye on you and how close depends on what’s been going on with them, how well you’ve known the patient, and for how long. This concept is super freaky to patients and their families when they first hear it. Some patients don’t get surveilled for that long, but every patient who is still on active surveillance a year later loves the concept. But on day zero, “Wait, what? Why aren’t you treating me? Cancer and no treatment sound super freaky.”

I come in with my grandma’s story, so they can hear that sometimes this can go for decades without needing therapy. The only test that tells you if you’re going to go down the same course is the test of time. There’s no test as good as that, but we’re going to watch you closely as we give you that test.

Dr. Bello: I usually use observation or keep an eye. Some people say that’s what they wanted to hear. Others say they’re getting a second and third opinion. They can’t take it and I feel for them. You have people whose lymphoma was picked up incidentally and you tell them, “We’re just going to watch you.”

Since these are picked up by accident, I always wonder if it would’ve been better if we picked this up 20 years later. Are we doing a disservice that we diagnosed this little lymph node under their arm? Should we have left it alone to begin with? They were living life peacefully and blissfully, and now they’re going to have 20 years of anxiety instead. The anxiety can sometimes be the hardest part of the diagnosis.

Standard Treatment for the First Two Lines of Therapy

Dylan: We’re going to dive into the treatment options, but before we go into the novel treatments, can you give us a breakdown of the standard treatment for the first two lines?

Dr. Bello: The standard is there’s no standard. That’s always the first problem, but it’s a good problem because we have a lot of different options. You like to base it on the patient you’re treating and your goal with treatment.

Some people may have one large lymph node that’s causing them discomfort, so radiation to that spot may be the best option. Some people may have generalized symptoms, like severe fatigue that’s interfering with some of their daily activities, but don’t have a lot of disease. In that case, you may want to give them a less intensive treatment, like a monoclonal antibody like rituximab, put the disease into remission, and see if it corrects their symptoms.

Other people are very symptomatic. They come to you with rapidly growing lymph nodes and have fluid build-up in certain body cavities like in the abdomen. You want to treat them with something that’s going to work quite quickly and that’s usually a chemotherapy plus immunotherapy regimen.

There are a few options available. One of the more popular ones is bendamustine plus rituximab or bendamustine plus obinutuzumab, which is another monoclonal antibody. There are also milder or non-chemo approaches, like oral therapy with lenalidomide and rituximab. The treatment has to be geared toward the patient you’re treating, fitness level, and treatment goal.

What are Bispecific Antibodies?

Dylan: Dr. Brody, what are bispecific antibodies? How are they different than CAR T-cell therapy? What’s their mechanism of action?

Dr. Brody: Dr. Bello mentioned that one of our go-to therapies over the last 24 years is monoclonal antibodies, anti-CD20 antibodies, especially rituximab and obinutuzumab. Rituximab is certainly the most famous. It’s an anti-lymphoma antibody. CD20 is one protein marker on the surface of lymphoma cells. CD3 is a marker on T cells. Bispecific antibodies are two of those antibodies.

In Lady and the Tramp, when the puppies were sucking from the dish at the same time and ended up accidentally sucking on the same noodle, it brought the two of them together. Now instead of that, it’s the kiss of death where the lymphoma cell and the immune cell are brought together by the bispecific antibody and it activates the immune cell at the same moment so the T cell kills the lymphoma cell. I think it was Dr. Matthew Lunning at Nebraska who made up the Lady and the Tramp reference.

T cells are incredibly good at killing lymphoma cells, better than probably any other cancer. It’s the same idea as CAR T-cell therapy. The main difference is that we have to take the T cells out of the person, ship them somewhere, get the CAR T cell made, and have it shipped back. A bispecific antibody is in some ways an off-the-shelf version of that, so you can use it today.

They’ve been incredibly effective at melting away lymphoma cells, even when other therapies like chemotherapy, lenalidomide, and a few others have not been working, especially when rituximab has not been working. Still, these bispecific antibodies have been awesomely effective in inducing remissions in the great majority of follicular lymphoma patients. It’s been an absolute revolution. That is not an overstatement because we didn’t have anything nearly as effective and safe as this until bispecific antibodies came along.

Approved Bispecific Antibodies for Follicular Lymphoma

Stephanie: We have two FDA-approved options in follicular lymphoma so far. Dr. Bello, for what kinds of patients would you recommend bispecific antibodies? Is there anything practice-shifting for you?

Dr. Bello: For follicular lymphoma, we have mosunetuzumab and epcoritamab. Thankfully, the majority of these lymphomas are pretty indolent and respond very well to front-line treatment, whatever you use. You can use chemoimmunotherapy, like bendamustine and rituximab or obinutuzumab, both of which are monoclonal antibodies. We have the luxury of having a lot of patients who don’t end up needing to get a bispecific antibody.

But for patients who progress, we have these immunotherapies: bispecific antibodies and CAR T-cell therapy. I use bispecific antibodies in people who have progressed after two lines or more of treatment. I always try the other lines first, unless we have a clinical trial because they’re proven and have a great track record. I don’t skip straight to a bispecific.

Bispecific antibodies have some side effects that are very unique to them and may not be the best for everybody. They also require a little bit more skill in monitoring them. They are administered in the hospital at the beginning and in the office for the subsequent doses.

Stephanie: Dr. Brody, what about you? How do you approach bispecific antibodies and how do you decide to use one over the other?

Dr. Brody: We’re very lucky to have two FDA-approved options. Their roles are evolving very rapidly and will be evolving very rapidly over the next few years. I would expect that five years from now, bispecific antibodies will be an option for front-line therapy. They may be given as a monotherapy, but honestly, I don’t think that’s their future. I think the future is like rituximab, which is to become part of combination therapy.

Dr. Bello was doing some comparison between CAR T-cell therapy and bispecific antibodies, and I agree very much with what she was saying. But in the future, it may be an irrelevant comparison because it won’t be what’s better between CAR T-cell therapy or bispecific antibodies. It’ll be an apple and orange comparison. Who cares what’s better?

In the future, we probably won’t be giving bispecific antibodies by themselves. Today, they’re only FDA-approved to be given by themselves, so the only way to get them as part of a combination is through a clinical trial. The preliminary data from some trials of bispecific antibodies plus standard therapies have been awesome with the huge majority of people getting complete remissions in some cases, even when prior chemotherapy and such weren’t working.

Medically, mosunetuzumab and epcoritamab are pretty similar. They have pretty similar efficacy and pretty similar safety profiles. Epcoritamab is given subcutaneously and mosunetuzumab is intravenously. For many patients, it doesn’t make a difference. For some patients, especially those who have had multiple prior lines of therapy and whose veins have gotten beat up, it does make a difference to them. Some patients have a port that they don’t want to have anymore or they don’t want to get a port.

Another difference is that mosunetuzumab is a finite course of therapy, about nine months, while epcoritamab can be given until it stops working or until you have a bad side effect. We have a lot of patients who have been on it for a year or two and say they want to pause for now, and we’re okay with that. It’s not exactly the recipe as written, but we don’t feel like we’re burning any bridges because if the lymphoma were to grow back, we might be able to treat them again. Some patients prefer to keep going because they don’t like the notion of doing nothing.

Because it’s more about the total doses of epcoritamab, for me, it’s simple. If I have a patient who lives across the street and they don’t want any IV therapy, that patient gets epcoritamab. If the patient lives four hours away and feels strongly about not making too many trips and doesn’t mind getting IV therapy, that patient gets mosunetuzumab. Patients have a big role in that decision.

Dr. Bello: I still prefer CAR T-cell therapy over bispecific antibodies because I see more durable responses, but not everybody can wait to do the whole process. As Dr. Brody mentioned, you have to collect the T cells, send them to be manufactured, and wait for them to be sent back. By then, four to six weeks have gone by and if they’re having rapid progression, they can’t wait.

CAR T-cell therapy can have a little more toxicities with them. Patients are hospitalized a bit longer, so not everybody has a performance status that’s robust enough. That’s when I would use the bispecific antibodies.

Common Side Effects of Bispecific Antibodies

Dylan: Dr. Bello, you touched on the side effect profile of bispecific antibodies. If I was a caregiver or a patient, what should I be on the lookout for and what would my experience be like?

Dr. Bello: A lot of people are now familiar with cytokine release syndrome (CRS). It mimics the most severe infection you’ve ever had with symptoms including fevers and chills. Sometimes, it can be more severe. Patients can have a drop in blood pressure. There can be fluids leaking into the tissue and lungs.

Bispecific antibodies don’t cause much of CRS in most people, so it’s nice that we err on the side of caution. We do it in step-up dosing where we start with a small dose, have the patient come back a week later and give them an increase, then a week later, another increase. Sometimes we hospitalize them to monitor them for 24 hours, but the majority of the time, they do very well.

Neurologic toxicity or immune effector cell-associated neurotoxicity syndrome (ICANS) is more serious. It can present as confusion, word-finding difficulties, or as severe as being obtunded or in a coma. Again, we don’t see much of it with bispecific antibodies so fortunately, it’s not something we need to look for. We let patients know about the possibility, but we don’t usually see that.

Dr. Brody: Dr. Bello was very thoughtful in reminding people that this can be severe, so the patient and, even more importantly, the caregiver needs to know it can be severe. But then we also like to tell people about the reality and the statistics. If they read too much on Google, they’ll unfortunately also read about aggressive lymphoma bispecific antibodies and mantle cell lymphoma bispecific antibodies where the numbers are a little bit worse. But with the follicular lymphoma bispecific antibodies, almost all of these CRS incidences are low-grade.

Similarly for ICANS, in the biggest studies for follicular lymphoma patients, it was the high-grade version of that where people were confused. There was 0% in all of the recent studies, so we do have to tell people about that. At the same time, we want to tell them not just what might happen but what likely will happen. What likely will happen is about half of patients get a fever and they get it either on the first dose or the first few doses.

If a person is getting many more doses in the future, they rarely happen. Most side effects of cancer therapies get worse as you go, like with chemotherapy. Bispecific antibodies are the opposite. It’s the first couple of weeks that have the risk of fevers and then that risk goes down to about zero. I don’t want to say there are no risks because there still are some risks. The risk of infection from common viruses like the flu, RSV, and COVID are real, but they’re true for almost every therapy we give and even for some lymphoma patients who are not even on therapy. Those are the common risks that most of us are facing. 

The main thing is cytokine release syndrome and neurological side effects mostly happen in the first few weeks or never happen at all. In that way, it’s a bit of a comfort to a patient because once they get through the first few weeks, I don’t want to say they’re in the clear, but they’re definitely in the easy running part.

Access to Treatment

Stephanie: When CAR T-cell therapy first came out, there were some issues with access in that it has to be done at very specific places. What are your thoughts about bispecific antibodies and access to them?

Dr. Brody: That’s supposed to be the main transformation and revolution about bispecific antibodies. They’re supposed to be accessible and they are or definitely will be. Let me make a little distinction.

For aggressive lymphoma bispecific antibodies, there’s one little speed bump: the ones that are approved now require a one-day hospitalization. One day in the hospital isn’t that bad, but that becomes a real pain for the doctors who have to coordinate that. Even though it’s not a big deal medically , it’s a logistical pain in the butt. Still a lot easier than CAR T-cell therapy, where the patient can spend weeks in the hospital sometimes, but it’s still not nothing.

By contrast, no hospitalization is required for the follicular lymphoma bispecific antibodies (epcoritamab and mosunetuzumab), based on the FDA label and the way that we do it. We occasionally will have an elderly patient we are worried about, so we’ll admit them to be safe, but for most patients, no hospitalization is required. That makes the accessibility hugely more doable than CAR T-cell therapy or even bispecific antibodies for aggressive lymphoma.

The main obstacle to accessibility is community oncologists getting comfortable with these. They’re recently FDA-approved, so they haven’t used them a lot before. Doctors like Dr. Bello and I have been using these for years as parts of clinical trials, so we’re pretty comfortable with them. Like Dylan said, rituximab sounded scary when it was first released and people having infusion reactions was a big deal. Now, no one’s surprised by infusion reactions and everyone’s comfortable with it.

I think it’ll be similar with bispecific antibodies. The hurdle to accessibility is community oncologists getting comfortable with them. There are different ways to facilitate that. One version is the academic doc treats the patient for the first few weeks until they get over that little hump of the risk and then we send them back to their community oncologist. They don’t have to drive back and forth so much. In a couple of years, community oncologists will be very comfortable with these, so it will be less of an obstacle.

Dr. Bello: I agree. Like all drugs, once they’re out for a few years and people have become more comfortable with them, they’ll become more readily available at multiple locations.

Differences Between Bispecific Antibodies and CAR T-cell Therapy

Dylan: CAR T-cell therapy is still a major player. We have three FDA-approved options—liso-cel, axi-cel, and tisa-cel—and tons in the pipeline targeting anything you can find. We talked about bispecific antibodies. What’s the difference between them and CAR T-cell therapy, and the mechanism of action for CAR T-cell therapy?

Dr. Bello: As Dr. Brody mentioned earlier, they’re similar, but the mechanism of action is obtained differently. CAR T-cell therapy is a much more complicated process. Patients come in, they donate blood, and a machine filters out their lymphocytes and gives them their whole blood back. Their lymphocytes are sent to a facility that will engineer the T cells to recognize a marker on the lymphoma cells. In the three products that you mentioned, the marker is an antigen called CD19, which is pretty much common in almost all B-cell lymphomas.

In addition to the T cell being able to recognize that antigen, the T cells are also programmed to be turned on. By nature, when T cells are in your body, they’re not attacking your body randomly. They need a trigger to turn them on. These T cells are engineered to recognize a certain antigen in the lymphoma cells and they’re activated already.

When they’re ready, they ship them back. Usually, it takes a couple of weeks for them to do this. The patient comes in and we give them a moderate dose of chemotherapy over a couple of days to suppress their immune system and then we give their T cells through a transfusion.

Once they get into the body, they immediately start to attack the lymphoma. A lot of times, we hospitalize people for this portion because now is when they start getting cytokine release syndrome or neurological toxicities. We monitor them in the hospital because there are tests we can do to see if they’re going to start getting more severe symptoms. We also have some medicines we can use to attenuate some of these if they start happening.

Patients are in the hospital anywhere from seven days to three weeks, depending on how long the inflammatory process lasts. It can start as soon as the cells are put in or it can start a couple of days later, so we don’t let them go home within 24 or 48 hours. There’s a peak in the symptoms and then you’ll start to see the inflammation lessen, the patients start to get back to their baseline or their normal status, and then we eventually let them leave the hospital.

Obviously, their work is not done because, at that point, their blood counts will be low. Even though it’s an immune therapy and we think that it’s attacking the lymphoma cells, it does cause quite a bit of a drop in the white cells, red cells, and platelets. Some of these patients require transfusion support during the first few weeks after and antibiotics because we see infections happen because of the low white cell count.

What I always found weird with CAR T-cell therapy is sometimes people get very sick for a few days and then it’s like a light switch is turned off. All of a sudden, the inflammation stops. Once the inflammation lessens, the patients start to get back to normal. I always tell them they’re going to have a week of hell and then they’re going to feel all right afterwards.

Dylan: I’m glad you said that because these neurological symptoms can be terrifying. For the patient, it’s going to be a blur most of the time, but for the caregivers, it’s the most terrifying thing in the world.

Dr. Bello: It’s good to let them know because there’s some misconception that CAR T-cell therapy and immunotherapies are benign. They come into the office saying, “I don’t want chemotherapy. I want CAR T-cell therapy.” No, we’re not going straight to that. There’s a misconception that because it’s not chemo, it must be easy. It’s an intense treatment. It’s not going to be a walk in the park.

The Role of Inhibitors

Dylan: Probably the most confusing for patients are the inhibitors. There’s BCL2, BTK, and SYK, and some of these are FDA-approved. Where do those fit into this new paradigm with CAR T-cell therapy and bispecific antibodies? Dr. Bello, how do you use them in your practice?

Dr. Bello: Unfortunately, the data with BTK inhibitors in follicular lymphoma has not been the greatest. BTK inhibitor stands for Bruton’s tyrosine kinase inhibitor. We use them a lot for other types of indolent lymphomas, like small lymphocytic lymphoma (SLL), chronic lymphocytic leukemia (CLL), and Waldenstrom’s, but with follicular, it hasn’t worked that well. There are some studies in development looking at BTK inhibitors in combination.

The other one is the BCL2 inhibitor venetoclax. That one is still a shocker to me. BCL2 is what’s mutated in 99% of follicular lymphoma and this drug that blocks the BCL2 pathway doesn’t work in follicular lymphoma.

The one that had the best results, PI3K inhibitors, was pulled from the market. Thankfully, we have these other options that I don’t miss them too much.

Cure vs. Longer Periods of Survival

Stephanie: Dr. Brody, there’s so much development happening in the immunotherapy space, like CAR T-cell therapy and bispecific antibodies. I know doctors don’t like using the word “cure,” but is there a discussion about that? And if not cured, what’s the consensus on the impact on longer periods of survival?

Dr. Brody: Doctors, especially academic doctors, are extremely diplomatic. We say to patients all the time that follicular lymphoma is incurable. Nothing’s incurable. We just have not found the cure yet. It’s not the disease’s fault. It’s us. There’s nothing magical about the disease. We haven’t been smart enough over the past 40 years, but we’re getting close. When my grandpa’s sister had Hodgkin’s lymphoma in 1949, it was 100% incurable. Now it’s 85% curable and that wasn’t that long ago.

We refer to follicular lymphoma as incurable. That’s how we write it in all of the papers. That sounds scary. It’s a terrible word. Whenever I say that, I have to say it’s incurable, like high blood pressure or diabetes. We don’t have a cure for high blood pressure, but we’ve got pretty good pills that can keep your blood pressure good for the next 50 years. We can’t give you one pill to cure it and that’s what we say for follicular lymphoma so far.

Bispecific antibodies have been the highest bang for the buck in follicular lymphoma in terms of efficacy versus toxicity. By themselves, they have some limitations. They’re good but not perfect. But in combination with standard therapies, like rituximab and lenalidomide, the complete remission rates have been huge in the first early studies. The big studies are getting done now.

Quite honestly, I wouldn’t be surprised if we look back in 20 years and find out that those who got bispecific antibodies plus combination standard therapies never relapsed. It will not hold for 100% of the patients, but it will be for a fraction. I don’t know that that will happen, but I absolutely would not be surprised because so many people are getting such deep remissions. We may be handing out curative therapies to people on those studies today. What’s the likelihood? Ask me again in 20 years, but it’s a real likelihood.

Clinical Trials in Follicular Lymphoma

Stephanie: When it comes to clinical trials, are there ones that are particularly exciting in the follicular lymphoma space?

Dr. Brody: Clinical trials are not always great. However, clinical trials are a time machine into the future. We have been giving people some of these bispecific antibodies in combination for about four or five years now, and some of them are just getting FDA-approved now. Some of these combination therapies are not FDA-approved yet, but they will be FDA-approved in the next year or in some cases, the next five years.

It’s a bit of a tragedy that Americans don’t get access to these mostly for lack of awareness. They’re available at many dozens or sometimes hundreds of hospitals around America, but maybe they didn’t think to ask or the person they asked wasn’t aware of them. That’s where resources like The Patient Story, The Leukemia & Lymphoma Society, and the Lymphoma Research Foundation can be helpful in guiding patients. There’s no absolute commitment to be part of a trial, but hear about it and get the information.

We were talking about front-line therapies for follicular lymphoma before and then hinting at later lines. The NCCN Guidelines are clear. They recommend finding out about clinical trials. Old therapies are considered non-curative, but it doesn’t mean we can’t get a curative therapy with some of these promising trials.

The first thing that patients need at the beginning of their journey is the awareness that there may be some self-advocacy involved. No doctor in America should ever be annoyed if a patient goes and gets a second opinion. My patients get second and third opinions beyond me and I always ask because I’m always interested to hear what they say.

People think of trials as a last-ditch effort and it’s such a bad branding. It shouldn’t be. We have trials for front-line therapy and second-line therapy. The trials for first-line therapy are what we’re super excited about. One example is getting immunotherapy instead of chemotherapy. We have trials of front-line therapy of bispecific antibodies where half the patients get that and half the patients get standard therapy.

Patients have concerns that they’re guinea pigs and don’t know what they’re getting or they’re getting a placebo. There’s no such thing as a placebo in cancer clinical trials. They may get the standard treatment plus a placebo. In most trials, people are aware of what they’re getting. There’s no mystery.

Some of the most exciting trials give patients the chance to skip chemotherapy, to get front-line bispecific antibodies, and combinations of the standard with or without the bispecific on top of it. Because bispecific antibodies have been pretty gentle and mostly safe, we can safely combine them with standard therapies.

The results from some of the early versions of those trials that have been presented at ASCO and ASH showed unparalleled remission rates. They’ve been awesome. Some of those front-line and even second-line trials of similar combinations are, for me, some of the most exciting trials out there right now.

Dr. Bello: I agree. For bispecific antibodies or immunotherapy treatments, the trials that are moving them up now to the second line and even to the front line are the most interesting. If you could get a non-chemotherapy approach, that would be great.

Again, we always have to be careful because when we find out years later that this drug caused this kind of malignancy or this kind of immunologic problem, maybe we should have stuck with the original treatment that we had. Immunotherapies are the wave of the future and the sooner we can move them up, the better, and those are the trials that I’m looking for the results in.

Dr. Brody: In many ways, it’s a rehashing of 20 years ago. Rituximab was approved as a monotherapy and now, we say that rituximab is like chocolate chips: add it on top of everything. There’s not a single B-cell lymphoma where you don’t add rituximab on top of whatever the standard was before and made it better.

CHOP was the standard of care then, but no one talks about CHOP anymore. R-CHOP is the only thing now except for some newer versions of R-CHOP as well. I do think that that will be the standard five years from now. Wait five years for the better stuff or get access to it now through clinical trials.

Stephanie: A follicular lymphoma patient, Donna P., said, “One of my first questions was how long will I live. Until I found a support group, I was so depressed and fanatical about my disease. Then I started seeing all the comments and how longevity was in my diagnosis, so many others then gave me hope.”

In the initial conversations with the patients when they’re dealing with so much, do you have any guidance for them, whether it’s support groups or resources?

Dr. Bello: We usually give them a booklet from the American Cancer Society that has a summary of the different types of non-Hodgkin’s lymphomas, but everybody nowadays runs to Google. I tell them, “Don’t do Google.” If you want to go to some websites, I usually recommend The Leukemia & Lymphoma Society and the Lymphoma Research Foundation. Both of them have very good patient information.

Dr. Brody: My first recommendation always is The Patient Story and as Dr. Bello said, The Leukemia & Lymphoma Society (LLS) or Lymphoma Research Foundation (LRF). There are a few others as well, but those are the best for lymphoma patients.

We also sometimes have in-person groups. The stress of this can be a significant factor, especially for someone who already had stress as a problem before or anxiety as a diagnosis before, so we try to get them personalized counseling. At cancer centers, we’re very lucky to have counselors who have experience with cancer patients specifically or, in our case, with lymphoma specifically.

The LLS Clinical Trial Support Center

Stephanie: The Leukemia & Lymphoma Society has a Clinical Trial Support Center that offers free, one-on-one support. You get connected to an LLS Clinical Trial Nurse Navigator to help you throughout the clinical trial process from finding the right trial all the way through when you’re on a trial, making sure that you have all your questions answered.

Clinical trials aren’t a last resort. The terminology itself can be quite daunting. Patients need to understand more about what clinical trials are so that they can decide for themselves with their healthcare team. ClinicalTrials.gov isn’t necessarily the easiest site to navigate, but the Clinical Trial Support Center can help you navigate a resource like that.

The Right Time to Seek Lymphoma Specialists

Dylan: People often ask, “When’s the right time to get a second opinion?” If you or your loved one has follicular lymphoma, when is the time to get an opinion from a lymphoma specialist? Can you explain the difference between a lymphoma specialist and a hematologist-oncologist?

Dr. Brody: Let me first say that being a community oncologist is tough. Most of these folks are taking care of lung cancer, breast cancer, kidney cancer, bladder cancer, etc. It goes on literally all day. I’m buddies with dozens of them and I hear about what they do and how they stay on top of everything. It’s a very tough job.

Academic oncologists and community oncologists have a pretty good way of working together, which hopefully means they have my cell phone, and for any little thing, they’ll give me a buzz or give me a text. For most of those, the patient doesn’t need to come see us.

Compared to breast cancer, follicular lymphoma is rare. Your regular community oncologist knows about follicular lymphoma and has had a few patients with it. Every month, they see dozens and dozens of breast cancer and lung cancer patients, but probably zero follicular lymphoma. They’ll see maybe a few per year, so it would be impossible for them to stay on top of every little bit of data. There’s no way they could do that for every single type of cancer. Dr. Bello and I can barely do it for all the types of lymphoma, so you can imagine that plus other cancers.

The answer for when to see a specialist is always. However, most patients don’t need to keep seeing a specialist. They can have a back-and-forth where we share the patients. The most common intervention I make when there’s a difference in opinion between me and the community oncologist is to downgrade the therapy. They’ll come in and say, “My community oncologist said I need R-CHOP,” and I’ll say, “You don’t. You definitely do not.” They can get either nothing and undergo active surveillance or get something gentle. We make them aware of clinical trials where they may get access to something that won’t be available for years sometimes.

I don’t fault them for saying that. Even a hematology-focused oncologist sees acute myeloid leukemia (AML), myelodysplastic syndrome (MDS), myelofibrosis, and myeloma most of the day, and then a little bit of follicular lymphoma. As a lymphoma specialist, all we see is lymphoma, so we have to have a little more experience.

Final Takeaways

Stephanie: We’ve had an incredible discussion. Hopefully, many things have resonated, but if there’s one thing that you hope people would walk with, what would you like that to be?

Dr. Bello: One of the most important things is that it’s okay to not get treatment. There are a lot of times when people don’t need to have their lymphoma treated because a lot of low-grade follicular lymphomas can be observed. If that’s your doctor’s recommendation, come to terms with that and know that you’re being monitored. If something changes or happens, we have great options.

Lymphomas are very different than solid tumor cancers in that they all need to be treated and the sooner the better. You have to change your whole mindset with these kinds of conditions.

Dr. Brody: Dr. Bello said it beautifully and I agree with how she said it. If you get diagnosed with follicular lymphoma, thank God you got follicular lymphoma and not some horrible lymphoma because it could have been something else. Thank God you got lymphoma in the 2020s and not in the 1990s because the advances have been unparalleled. There’s no cancer where the advances have been as incredible as in lymphomas and B-cell lymphomas, like follicular lymphoma especially. I guarantee that the 2030s medicines will be better than the 2020s medicines, so some patients will be savvy enough to get access to those even now.

Conclusion

Stephanie: Thank you, Dr. Brody, Dr. Bello, and Dylan for this discussion. I really appreciate your time.

Thank you to Genmab, our sponsor for this program. Their support allows us to do more of these programs and keep them free for our audience. I hope that you enjoyed the discussion and we hope to see you in a future program. Take good care.


LLS

Thank you to The Leukemia & Lymphoma Society for their continued partnership.


Genmab

Special thanks again to Genmab for its support of our independent patient education content. The Patient Story retains full editorial control.


Follicular Lymphoma Patient Stories

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Adrenal Cancer Adrenocortical carcinoma Chemotherapy EDP (etoposide, doxorubicin, and cisplatin) Lenvima (lenvatinib) Mitotane Patient Stories Rare Surgery Targeted Therapy Treatments

Ashley’s Stage 4 Rare Adrenal Cancer Story

Ashley’s Stage 4 Rare Adrenal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Ashley P. feature profile

Ashley’s symptoms began with mild back pain in October 2022, which escalated to severe discomfort by January 2023. After a series of tests, a CT scan revealed an 11 cm tumor on her adrenal gland and she was eventually diagnosed with stage 4 adrenocortical carcinoma (ACC), a rare cancer affecting about 300 to 400 people annually in the U.S. Despite facing numerous challenges, including a delayed diagnosis due to lack of insurance, she educated herself on her condition, sought out specialists, and joined support groups.

Her treatment journey began with EDP (etoposide, doxorubicin, and cisplatin) chemotherapy and mitotane, which caused severe side effects, including hypothyroidism. Despite the challenges, the tumor showed signs of shrinkage and she underwent surgery to remove it. When chemotherapy became ineffective, she switched to targeted therapy with lenvatinib, which showed promising results.

Throughout her journey, Ashley also struggled with mental health issues and adjusting to the need for help, but she found support through therapy and counseling. Ashley emphasizes the importance of self-advocacy in medical treatment, seeking second opinions, and the value of support groups in navigating her rare diagnosis.


  • Name: Ashley P.
  • Diagnosis:
    • Adrenocortical carcinoma (adrenal cancer)
  • Staging:
    • 4
  • Symptom:
    • Mild back pain on her left side that escalated in severity
  • Treatment:
    • Chemotherapy: EDP (etoposide, doxorubicin, and cisplatin) & mitotane
    • Surgery
    • TKI inhibitor: lenvatinib

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.



I was having some mild back pain on the left side, which was eventually where the tumor was discovered.

Introduction

I live in Beaumont, Texas, about an hour and a half away from MD Anderson.

In October 2022, I first started showing symptoms of my cancer, but I wasn’t diagnosed until March 2023 and I’ve been living with stage 4 cancer since then. It’s extremely rare. It affects 300 to 400 people in the US every year, which is about one in a million people.

Pre-diagnosis

Initial Symptoms

When I first started having symptoms, they were very mild and pain-related. I was having some mild back pain on the left side, which was eventually where the tumor was discovered. I would rate the pain at a 3 out of 10. It would always happen after long car rides, so I chalked it up to bad posture.

The pain was on and off throughout the next several months until about January. Then I had severe back pain that manifested at a friend’s house. I was sitting on the floor and it overtook my whole body. It was probably a 7 or 8 out of 10. Within a couple of days, it eventually settled down and then went away. I still thought it was my posture.

Ashley P.
Ashley P.

Come February, I started to feel a pinching pain around my rib cage. I had never had that. It was persistent throughout the day in a specific spot and that’s what got me worried. I couldn’t figure out what it could be, so it scared me a little bit. Some family members told me it could be this or that, it might be something serious, and that I should get it checked out.

I went to our local hospital where they ran a bunch of tests, including blood work and X-ray. I came in with high blood pressure of around 190/105, if I remember correctly. I wasn’t aware that I had high blood pressure, but I think it has been ongoing and I hadn’t been checking it. I was also anxious, so I’m sure that was playing a part.

CT Scan Revealed Tumor

They saw something in my X-ray, which they said could be an infection in one of my lungs but I had no respiratory symptoms. They gave me a COVID test and it came back negative. Everything they checked came back negative, so they sent me in for a CT scan because they couldn’t figure out what was going on. It was a good thing they did that because that’s when they discovered the tumor coming off of my adrenal gland, which I believe was around 11 cm at the time.

She gave me the news of this enormous tumor coming off of my adrenal gland and the very last thing she said was, ‘It has metastasized to your lung.’

Getting the Scan Results

The doctor comes in with a look on her face and I knew she was about to give me bad news. My stomach dropped when I saw the way she looked at me. The whole mood in the room changed. My fiance came with me to the hospital, but because it had gotten so late and the chairs were so uncomfortable, he was sleeping in the car in the parking lot when she told me.

She gave me the news of this enormous tumor coming off of my adrenal gland and the very last thing she said was, “It has metastasized to your lung.” I could tell she didn’t want to say that part because that meant stage 4. At that point, I didn’t quite understand anything about what she was saying. She said it was 95% sure I had cancer because they can’t tell you 100% until they biopsy.

She ended with, “We don’t think we can handle this here, so we’re going to have to transfer you to an ICU.” They treated my blood pressure because that was all they could do for me. 

I called my fiance, told him where he needed to go, and gave him all the information I could. We didn’t know much, so I was relaying what little information I had. He was sitting there crying and I was comforting him more than I was comforting myself. I was completely disassociated. I went into shock a little bit. It was a surreal experience.

Ashley P.
Ashley P.
Transferring to Another Hospital

I had to be transported to another hospital’s ICU about an hour and a half away, but I had to wait until the next morning for an ambulance to transfer me.

The oncologist came in and said, “I don’t think it’s ethical to treat you without insurance.” They sent in a social worker who handed me his phone to talk to an insurance agent. They sent me home after three days. I had to wait a full month for the insurance to kick in.

When I went home, I hadn’t had a biopsy yet, so I didn’t even know my diagnosis. I couldn’t look anything up because I didn’t know what it was. All I knew was there was a tumor and something in my lungs.

I had something serious going on and all I was doing was waiting. I had no idea how fast things needed to be moving.

Waiting for Insurance

I didn’t have any coping skills because medical issues weren’t something I had ever dealt with, so it all hit me like a train. I went into a state of almost paralysis. All of a sudden, it was almost as if I could feel the tumor and it made me afraid to move and get out of my bed. I thought, Am I going to make it worse? Is it going to rupture? These types of tumors are very, very fragile. They’re like an egg. At the time, I didn’t know, but that was still a thought because I knew how big it was.

I was at my heaviest, but I started losing weight because I wasn’t eating well. I was so paralyzed by fear, worry, and not knowing anything. While at the hospital, I even asked the nurse if I was going to die soon and she changed her demeanor a little bit. She said, “Oh no, no, but this is very, very serious,” and that stuck with me.

I had something serious going on and all I was doing was waiting. I had no idea how fast things needed to be moving. Each day, I would try to get through the day and after another day’s done, move on to the next day. I was looking at my calendar every day, compulsively checking the days off until I could get my insurance.

Ashley P.
Ashley P.

Diagnosis

Getting the Biopsy Results

Once I got the biopsy results and knew what I had for sure, I started digging. I put all of my anxious energy into finding out more about my type of cancer. I joined adrenal cancer Facebook support groups and started talking to people and watching YouTube videos. There are a few conferences that have a few of the experts that exist in the United States. There’s only a handful of them and they put together this conference with all of this educational information.

One time, I stayed up all night because I was so anxious and freaked out because I didn’t know what my future was going to look like. I wanted to know what my options were. I couldn’t get my mind to separate from what I was going through, so that was a difficult time for me. That beginning stage was probably one of the most difficult experiences I’ve dealt with so far, even after everything I’ve been through.

What helped was educating myself and talking to people with the same diagnosis. There aren’t a lot of us because it’s so rare, but there are support groups. I don’t know anyone in my city who has my diagnosis. I’ve been to urgent care centers and some of them have never even heard of what I have.

At a certain point, I couldn’t work anymore. The symptoms had worsened to where I would get very high blood pressure and resting heart rate, so I didn’t feel like it was safe for me to work.

Finding a Specialist

When I joined support groups on Facebook, they were recommending certain doctors who were doing research on my type of cancer, but they’re located in Maryland at the National Institutes of Health. A girl in the support group called me and gave me all this information. She even put me on a three-way call with someone from the NIH about getting set up. Eventually, someone gave me the direct phone number and email address of the specialist, Dr. Jaydira Del Rivero.

I wanted to get recommendations and second opinions, and see what a true expert would say. The support group led me in that direction and I kept seeing her name over and over again in these groups. I emailed my scans to Dr. Del Rivero and they gave their recommendations.

What helped was this was all government-funded, so it’s all covered. For me, it was perfect because, at a certain point, I couldn’t work anymore. The symptoms had worsened to where I would get very high blood pressure and resting heart rate, so I didn’t feel like it was safe for me to work. I was afraid to even get up and use the restroom because my heart would start pounding like crazy.

Ashley P.
Ashley P.

Treatment

Discussing the Treatment Plan

I had a very skilled expert team collaborating with a local hospital that I knew would work with them. We put together a game plan for the first steps.

At my oncology appointment, we had a full discussion of where I stood and what things were looking like. I knew a lot about it because I read and listened to experts talk about it, so it didn’t come as a shock to me.

I had to get set up with an endocrinologist as well. The day after my appointment, I had a port put in and then the next day, I had chemo. That’s how quickly things started moving.

When I got to the hospital, they told me I was going to be there for a few days. It’s very intensive. It’s four days of infusions.

EDP Chemotherapy

Unfortunately, ACC patients don’t have a lot of FDA-approved treatment options. We only have one line of chemo, EDP (etoposide, doxorubicin, and cisplatin), and that’s done inpatient. 

I showed up to my first chemotherapy session thinking I was going to go home after an infusion. But when I got to the hospital, they told me I was going to be there for a few days. It’s very intensive. It’s four days of infusions and the first day is doxorubicin, which is otherwise known as the Red Devil.

Before they start chemo, they have to do all sorts of tests to make sure your heart’s okay and I didn’t have any issues there. On the second day, I had etoposide and then on the third and fourth days, I had a combination of etoposide and cisplatin. Usually, I’d be in the hospital for five or six days.

Ashley P.
Side Effects of EDP Chemotherapy

The first and second cycles were the worst by far. My body didn’t know what hit it and by day two, I was hugging the toilet. I remember thinking, This should be temporary. This is what happens. This is what you think of when you think of chemo. I almost felt so bad that I didn’t care. It was strange.

My blood counts were low too and made me feel so out of it. By the end, I needed a blood transfusion because I was right on the cusp of my counts being too low. They wanted to be on the safe side. I had a lot of fatigue for about a week.

There was a lot of vomiting. I’m already a small person, so I didn’t have a lot of weight to lose to begin with. My heaviest before my diagnosis was 108 lbs and I’m only 5 feet tall. I learned how to cope over time. I figured out that I could tolerate mac and cheese and that’s all I would eat. I made it through.

I had to wear a medical bracelet everywhere I went because if I got stressed out, sick, or developed a lot of pain, I could go into an adrenal crisis.

Mitotane

While doing chemo, I was taking mitotane, the only FDA-approved medication for adrenocortical carcinoma that’s been used since the 60s. What it does is shut down adrenal function and supposedly help shrink things, but more often than not, it slows things down. They use it in conjunction with chemo.

By my second round of chemo, I was taking nine pills per day. They would make me gag because they were enormous and very chalky, which would cause more throwing up.

Ashley P.
Ashley P.
Side Effects of Mitotane

I developed hypothyroidism due to that medication. It does a lot of damage to the body. It shuts down your adrenal glands so they don’t produce cortisol anymore. Then you have to take hydrocortisone, which is like synthetic cortisol. You have to have cortisol or things get very bad and you could end up in an adrenal crisis.

I had to wear a medical bracelet everywhere I went because if I got stressed out, sick, or developed a lot of pain, I could go into an adrenal crisis because my body wasn’t producing cortisol, which is a stress hormone. I didn’t know a lot about it before all of this started.

I have to have emergency injections now. It’s almost the same concept as an EpiPen, but it’s more difficult to administer because you have to draw up the medication. If I’m ever on the verge of an adrenal crisis, I have to inject myself and then go to the ER, but we don’t think that’s going to happen.

I’m off of that medication now, but my adrenal gland is still not producing enough cortisol to not take hydrocortisone, so I have to give myself thyroid hormones and synthetic stress hormones. These are all side effects of the treatment and not because of the cancer.

We saw shrinkage. They recommended for me to do a third round of chemo because we were trying to get to surgery so I could get the tumor removed.

Mid-Treatment Scan

By the time I was going to start chemo, the tumor had grown to 16 cm and it was so painful. The pain went away almost immediately after the first cycle. I was going to get two rounds of EDP and get a scan to see if it was responding. Thankfully, we saw shrinkage. They recommended for me to do a third round of chemo because we were trying to get to surgery so I could get the tumor removed.

I was going to NIH to get that done by one of their amazing surgeons, Dr. Hernandez. They typically keep the tumors and do different treatments to see what might work.

Ashley P.
Ashley P.

I was getting my third round in the hospital when I got the call saying they had approved my surgery, so that helped me push through. I was so happy. Initially, I didn’t know if we were going to get surgery or not. I’ve seen people not make it through the beginning stages of chemo and even have their tumors removed before things got bad. The ultimate goal is to get the tumor out. The faster you can do it, the better.

Other than my port insertion, I have never had surgery in my life. We started preparing for a trip up north for a massive surgery.

I eventually had to do more chemo after surgery, but it ended up not working anymore during my fourth and fifth rounds. I had my last cycle in February 2024.

Things are trending in the right direction, so I’m hopeful that this new treatment is working.

Targeted Therapy

They pulled me off mitotane and put me on lenvatinib, a TKI inhibitor. I don’t have many side effects from it. They use that in combination. It’s better than Keytruda (pembrolizumab) alone.

I only have to take two pills a day now. Symptom-wise, as far as the cancer goes, I feel way better. There are some indicators, like some tumor markers, that have significantly gone down. My team is seeing that things are trending in the right direction, so I’m hopeful that this new treatment is working.

I know some people in my support group who are on the same combination and they’re having amazing results. They’re stage 4 like me with no evidence of disease.

Ashley P.
Ashley P.

Mental Health Care

It feels like I’m making two steps forward and one step back, but now I feel like I’m moving forward at a steadier pace. It was difficult in the beginning because I didn’t have many coping mechanisms. I had never gotten therapy in my life. I thought I was so healthy—and I—was until cancer came into my life.

I didn’t expect cancer. If I was going to have any health problems, cancer was not what I thought it could be. It doesn’t run in my family. I’ve done genetic testing and I tested negative for everything they tested me for.

When I was trying to wrap my head around this, I thought, Why me? And why such a rare cancer? I don’t fit in the age bracket for the age that this affects people. It’s usually middle-aged women, young children, and some middle-aged men. More often, it’s women between their 40s and 60s. I’ve met some friends through the support group who are around my age, but it’s much more rare.

I struggled with why. I wanted to know. I felt like I would get some sort of closure if I knew that, but I don’t know if I’m ever going to get the answer.

I’m getting a lot of help in areas I’ve never had help in, so in a way, I’m rebuilding myself and enriching my life.

I struggled with body image because after my surgery, I was down to 82 lbs and that played a part in my mental health. I felt helpless because I realized there were so many things I couldn’t do, mostly due to the side effects of the medications I was on.

I would be wiped out and I wasn’t used to that. It hit me out of nowhere. I went from being a fixer or a helper to somebody who needed help. I didn’t know how to do that. It was painful for me to adjust.

For a long time, it was one of the most difficult parts for me mentally, especially after surgery because I was in horrible pain. It was an open surgery, so I have a scar from right under my rib cage to past my belly button. It’s probably 10 to 11 inches long.

After surgery, I had to get a lot of help with doing basic tasks. I felt awful for the people having to take care of me because this wasn’t who I was and that was a huge adjustment. I didn’t know how to cope.

I wasn’t getting therapy at the time, but I am now through MD Anderson, which is amazing. I see a counselor and I feel like my mental health is the best it has ever been despite my diagnosis. I’m getting a lot of help in areas I’ve never had help in, so in a way, I’m rebuilding myself and enriching my life. It’s amazing how these resources have been helping me.

Ashley P.
Ashley P.

I’m using the time that I have now to get my mental health where it needs to be, which in my opinion should be better than it was even before I was diagnosed. I’m working on myself. I see it as an opportunity.

I’ll never be happy that any of this happened, but I have the time and resources now and I’m seeing some benefits. I’m learning a lot of coping mechanisms in how to deal with things in the future.

If the treatment’s working and I don’t have that many side effects, that’s a win-win. I’ve seen nothing but improvement since going to MD Anderson.

There’s no telling where I would be right now if I hadn’t made those choices to focus on what I needed to do to get myself where I needed to be.

Words of Advice

Don’t let the doctors dictate what happens to you. If you have a gut feeling, act on it. Don’t be afraid to get second opinions. Seek out experts. There are usually other routes that you can take. There are so many resources out there. It was difficult for me in the beginning, but once I got everything set up and figured out, I told myself I may have saved my life with these changes.

There’s no telling where I would be right now if I hadn’t made those choices to focus on what I needed to do to get myself where I needed to be. One thing that they would always repeat in my support groups is don’t let location dictate your treatment, who you see, or who you get your recommendations from. If that’s a problem, then start looking into things. You’d be surprised at how many resources are available out there.

Don’t idly sit back and let things happen if things don’t feel right. Talk to multiple people. Join support groups. Not only do they provide great advice, especially in my case when there’s not a lot of information, but the sense of community that you get from it is priceless. I have made so many amazing friends in the ACC community.

There are usually support groups for every diagnosis that you can think of. Mine is so rare and there are three that I’m on. If I find someone with my diagnosis, the first thing I always think of is to try to plug them into the support groups. It helps in so many different ways that it might change the whole trajectory.

Ashley P.

Ashley P. feature profile
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Tracy’s Stage 2B Colorectal Cancer Story

Tracy’s Stage 2B Colorectal Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Tracy R. feature profile

Tracy was diagnosed with stage 2B colorectal cancer at 41. A former special education teacher turned personal trainer and nutrition coach, Tracy has long been passionate about promoting a whole-food, toxin-free lifestyle. Despite her healthy habits, she began experiencing troubling symptoms related to her digestive system that were dismissed by multiple doctors over the years.

Tracy’s health issues began in her 20s when she was diagnosed with irritable bowel syndrome (IBS), leading to frequent trips to the emergency room. Despite changing her diet and lifestyle, her symptoms persisted, including bloating, inflammation, and intermittent bleeding. During a vacation in 2014, Tracy saw blood in the toilet, prompting her to seek further medical evaluation. Initially attributing her symptoms to a hemorrhoid, her OB/GYN prescribed suppositories, which provided only temporary relief.

Concerned by the recurrent symptoms, Tracy eventually consulted a gastrointestinal specialist who recommended a colonoscopy. The procedure revealed a polyp near the anal verge, and further tests confirmed it was malignant. Although not initially alarmed, Tracy soon realized the gravity of her situation as she was referred to a colorectal surgeon.

The news was tough—her cancer was located so low in the rectum that surgery would likely require a permanent colostomy bag. Tracy sought multiple opinions, hoping for a different outcome, but each doctor confirmed the same treatment plan: neoadjuvant chemotherapy, radiation, and surgery. Her optimism was tested, but a compassionate oncology team helped her navigate the emotional and physical challenges ahead.

Tracy’s treatment began with 28 days of chemotherapy and radiation. She opted for oral chemotherapy (Xeloda), hoping it would feel less invasive, but the side effects quickly took a toll. By the third week of radiation, she experienced severe pain, dehydration, and burning sensations, leading to hospitalization. Despite her resistance to the idea of surgery, the worsening symptoms and the results of her post-radiation colonoscopy convinced her to proceed.

In December 2015, Tracy underwent surgery, resulting in a colostomy. Although she initially struggled to accept her new reality, including the emotional impact of living with a colostomy bag, she found strength through her faith and the support of her husband and doctors. Post-surgery, Tracy faced additional chemotherapy, but her body reacted severely and she was eventually advised to stop treatment due to complications.

Through it all, Tracy wrestled with feelings of shame and guilt, questioning whether her past choices led to her diagnosis. However, she ultimately embraced her situation, using it as an opportunity to advocate for self-awareness and early detection, particularly through colonoscopies. Tracy’s message is clear: listen to your body, advocate for your health, and turn pain into purpose by helping others.


  • Name: Tracy R.
  • Age at Diagnosis:
    • 41
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 2B
  • Symptoms:
    • Bloating and inflammation
    • Heaviness in the rectum
    • Intermittent rectal bleeding
    • Fatigue
  • Treatments:
    • Chemotherapy
    • Radiation
    • Surgery
Tracy R.
Tracy R.
Tracy R.
Tracy R.
Tracy R.
Tracy R.
Tracy R.

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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Categories
Brachytherapy Cervical Cancer Chemotherapy Immunotherapy Keytruda (pembrolizumab) Patient Stories Platinol (cisplatin) Radiation Therapy Treatments

McKenzie’s Stage 3C2 Cervical Cancer Story

McKenzie’s Stage 3C2 Cervical Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

McKenzie E. feature profile

McKenzie was diagnosed with stage 3C2 cervical cancer at 26. She initially experienced severe cramping following a miscarriage, which was initially dismissed as normal post-miscarriage pain. As her symptoms worsened, including severe back pain, excessive discharge, and heavy bleeding, she sought various treatments but found no relief.

After switching insurance, McKenzie visited her OB-GYN, who conducted an ultrasound and lab work. The ultrasound showed what her doctor suspected to be a hemorrhagic cyst or twisted ovary. However, during surgery, they discovered a large mass, later confirmed as cervical cancer.

Given the advanced stage of her cancer, surgery was not an option. Instead, McKenzie underwent seven weeks of daily radiation, six rounds of chemotherapy, and four rounds of brachytherapy (internal radiation), and is currently on immunotherapy, Keytruda.

The aggressive treatment took a toll on her, causing extreme nausea, sensitivity to foods, and hair loss, which was particularly difficult for her emotionally. Despite the challenges, she found solace in the support of her husband and medical team, especially her radiation oncologist, who provided cutting-edge treatment locally, negating the need to travel to distant hospitals.

The impact of her diagnosis extended beyond physical symptoms. McKenzie faced the reality that her treatment led to early menopause, eliminating the possibility of having biological children. She struggled with the emotional burden of the diagnosis and treatment, but her husband’s encouragement helped her stay focused on recovery. McKenzie also started sharing her experience online, finding it therapeutic to connect with others.

Despite the hardships, McKenzie emphasizes the importance of advocating for oneself. She advises others to listen to their bodies, seek timely medical advice, and not be swayed by non-medical opinions. Her experience underscores the unpredictable nature of cancer and the critical need for early detection and proactive healthcare.


  • Name: McKenzie E.
  • Diagnosis:
    • Cervical Cancer
  • Staging:
    • Stage 3C2
  • Symptoms:
    • Severe abdominal & back cramping
    • Persistent & extreme pain
    • Heavy discharge & bleeding
  • Treatments:
    • Radiation
    • Chemotherapy: cisplatin
    • Brachytherapy
    • Immunotherapy: Keytruda

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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More Cervical Cancer Stories

Willow B.

Willow B., Pelvic Cancer, Grade 1, Stage 2.5



Symptoms: Persistent fever-like chills, scratchy throat, fatigue, post-orgasm pain, heavy bleeding, severe cramping
Treatments: Surgery (radical hysterectomy), radiation, chemotherapy, hormone replacement therapy (HRT)
...

Samantha R., Adenocarcinoma Cervical Cancer, Early Stage



Symptoms: Irregular bleeding, pain

Treatments: Surgery (radical hysterectomy, pelvic exenteration), chemotherapy, immunotherapy, radiation therapy, hormone replacement therapy, hyperbaric oxygen therapy
...
Amanda L.

Amanda L., Cervical Cancer, Stage 3



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

Treatments: Chemotherapy, radiation therapy (external beam radiation therapy & brachytherapy)

...
Mila smiling in her car

Mila L., Squamous Cell Cervical Cancer, Stage 1B1



Symptoms: Abnormal lump in cervix area, bleeding after sex
Treatments: Chemotherapy (cisplatin), radiation, adjuvant chemotherapy (carboplatin & paclitaxel
...
McKenzie E. feature profile

McKenzie E., Cervical Cancer, Stage 3C2



Symptoms: Severe abdominal & back cramping, persistent & extreme pain, heavy discharge & bleeding

Treatments: Radiation, chemotherapy (cisplatin), brachytherapy, immunotherapy (Keytruda)
...
Marissa

Marissa N., Squamous Cell Cervical Cancer, Stage 3B



Symptom: Excessive and prolonged vaginal bleeding

Treatments: Chemotherapy (cisplatin), radiation, brachytherapy
...

Leanne B., Cervical Cancer, Stage 4



Symptoms: Fatigue, irregular periods, pain after sex

Treatments: Radiotherapy, brachytherapy, chemotherapy (carboplatin & paclitaxel)/p>
...
Kristine

Kristine M., Adenocarcinoma Cervical Cancer, Stage 2B



Symptom: Tumor found during postpartum pap smear

Treatments: Colposcopy with endocervical curettage, cone biopsy, total abdominal radical open hysterectomy with lymph node removal
...
Kate R. feature profile

Kate R., Squamous Cell Carcinoma of Unknown Primary Origin, Stage 3C



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)
...

Categories
Chemotherapy Head and Neck Cancer Patient Stories Platinol (cisplatin) Radiation Therapy Squamous cell Surgery Treatments

Michael’s Stage 4 Head and Neck Cancer Story

Michael’s Stage 4 Head and Neck Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Michael W. feature profile

Michael’s cancer journey began unexpectedly after a routine CT scan of his arthritic neck revealed a significant mass. Despite having no symptoms, he embarked on an 18-month ordeal involving surgery, chemotherapy, and radiation. Initially, Michael hesitated to share the severity of his head and neck cancer diagnosis with his wife, given her health struggles, but eventually confided in her and her sister, ensuring he had a solid support system.

His treatment was intensive: a neck dissection to remove the tumor, affected lymph nodes, and salivary glands, followed by 13 chemotherapy sessions with cisplatin and 35 rounds of radiation. Despite the physical and emotional toll, including concerns about dental issues and feeding tubes, Michael maintained a sense of normalcy, continuing to work throughout much of his treatment.

Michael documented his journey on Twitter, where he built a large following and found comfort in the community he created. His first post-treatment PET scan showed no evidence of disease, and he remains determined to defy the grim prognosis he initially received. Michael credits his resilience to his proactive approach and the unwavering support of his medical team and loved ones.

As he navigated the challenges of chemotherapy, Michael initially felt out of place in the treatment room but quickly became a central, upbeat figure known as “Mr. Sunshine.” He brought positivity to others and found unique support among a predominantly male group, as head and neck cancer is more common in men.

Reflecting on the collateral damage of cancer treatment, Michael acknowledges the physical and emotional challenges, including nerve damage, depression, and financial strain. He emphasizes the critical role of online and offline communities in helping him and others cope with the disease. Particularly passionate about addressing the financial toxicity of cancer, he highlights the efforts of organizations working to alleviate these economic burdens.

In addition to cancer, Michael has faced mental health challenges, including bipolar disorder and severe anxiety. He underscores the importance of not facing illness alone and encourages others to seek support. His advocacy on social media has become a significant part of his life, offering hope and connection to others facing similar struggles.

Looking back on his journey, Michael reflects that while cancer could have destroyed him, it has instead made him a better person—more compassionate, present, and committed to helping others. Despite the hardships, he finds purpose in advocating for those affected by cancer, ensuring no one has to suffer in silence or face financial ruin.


  • Name: Michael W.
  • Diagnosis:
    • Squamous Cell Head and Neck Cancer
  • Staging:
    • Stage 4
  • Symptom:
    • None; caught at routine neck CT scan
  • Treatments:
    • Surgery
    • Chemotherapy: cisplatin
    • Radiation
Michael W.
Michael W.
Michael W.
Michael W.
Michael W.
Michael W.
Michael W.

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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More Head and Neck Cancer Stories

Alyssa N. feature profile

Alyssa N., Adenoid Cystic Carcinoma



Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals

Treatments: Surgery (tumor removal), radiation
...
Eva G. feature profile

Eva G., Oral Cancer, Stage 4



Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...
Kandi B.

Kandi B., Adenoid Cystic Carcinoma, Stage 3



Symptoms: Fatigue, headaches, depression, occasional feeling of tongue being on fire or inflamed, appearance of tumor on salivary gland on tongue

Treatment: Surgery
...
Larry W. stage 4 neck cancer

Larry W., Neck Cancer (Malignant Neoplasm of the Neck), Stage 4



Symptom: Lumps on the right side of the neck

Treatments: Surgery (tonsillectomy, lymphadenectomy), chemotherapy, radiation, clinical trial

...
Michael W. feature profile

Michael W., Squamous Cell Head and Neck Cancer, Stage 4



Symptom: None; caught at routine neck CT scan

Treatments: Surgery, chemotherapy (cisplatin), radiation
...

Categories
Colorectal CRC Patient Stories Surgery Treatments

Paula’s Stage 3 Colorectal Cancer Story

Paula’s Stage 3 Colorectal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Paula C. feature profile

Paula initially experienced painful gas, irregular bowel movements, and eventually blood in her stool. She was often dismissed by doctors who attributed her symptoms to stomach flu, hemorrhoids, or irritable bowel syndrome. As her condition worsened, she became anemic and experienced severe pain, weight loss, and fainting spells.

After years of being misdiagnosed, Paula was finally diagnosed with colorectal cancer in 2014 after a series of urgent care visits and a failed colonoscopy. The tumor had been encapsulated in her colon and despite initial fears, it had not spread to other organs or lymph nodes.

Paula underwent emergency surgery to remove the tumor. Although doctors anticipated the need for chemotherapy or radiation, they were able to successfully remove the tumor and 34 lymph nodes. Paula’s cancer was found to be stage 3, but it had not spread to her lymph nodes.

Throughout her journey, Paula faced multiple challenges, including medical bias due to her race and sexual orientation. She experienced homophobia, racism, and misogyny, which contributed to delays in her diagnosis and treatment. Despite these challenges, she found strength in her community and in sharing her story.

Paula emphasizes the importance of early screening, particularly for those with a family history of colorectal cancer and for marginalized communities. She advocates for self-advocacy in healthcare, urging others to push for fair and humane treatment. Paula believes in the power of survival and thriving with cancer, encouraging others to know their family history, get screened, and not be afraid of a cancer diagnosis. She stresses the importance of treating everyone with dignity and respect in healthcare and encourages individuals to take control of their health.


Johnson and Johnson logo

Thank you to Johnson & Johnson for its support of 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 for treatment decisions.


  • Name: Paula C.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 3
  • Symptoms:
    • Painful gas
    • Irregular bowel movements
    • Blood in stool
    • Anemia
    • Severe pain
    • Weight loss
    • Fainting spells
  • Treatment:
    • Surgery: tumor resection
Paula C.


I had all the signs and symptoms that they tell you to look out for when it comes to colorectal cancer, but at the time, I didn’t know what they were.

Introduction

I’m in love with my best friend and partner, Lara. We have been together for 38 years and married for 10 years. I’m a cat mom to a little cat named Trixie.

I enjoy dancing and singing. I’m a Duran Duran fan and that’s how I met my wife. For our 38th anniversary, we went to their 40-year celebration in Birmingham, England.

I’m also a great cook and I have a collection of amazing cookbooks. I’m trying to make my way to some of the best restaurants in the world.

Paula C.
Paula C.

Pre-diagnosis

Initial Symptoms

I had all the signs and symptoms that they tell you to look out for when it comes to colorectal cancer, but at the time, I didn’t know what they were.

In the early days, I always had painful gas and weird poop. When I experienced them, I would automatically blame what I ate and drank, so I would dismiss them a lot of times.

But then I started to have more painful symptoms, especially with the gas. I told my wife that I felt like I had gas going up and it was getting trapped. There were times when it hurt so bad that I wanted to scream.

I started seeing more blood. I went to see a doctor who said I probably had hemorrhoids.

PCP Appointment

I started going to the doctor by the end of 2012. I went to my primary care physician, but he didn’t think much of it at the time. When the pain was bad, I would get told that I probably had stomach flu.

Symptoms Worsen

I started to see signs of blood in late 2013. Sometimes I would be straining to poop. Other times, I would have diarrhea. I didn’t have my regular PCP at the time, so I would see whoever was available and they told me to change my diet. When I told one doctor that I saw some blood, he thought I might have stomach flu, so he gave me antibiotics.

By 2014, I started seeing more blood. I went to see a doctor who said I probably had hemorrhoids, so whenever I saw blood, I assumed it was that. I also started having bad pain and being anemic, but I didn’t know it then. I was cold all the time.

Paula C.
Paula C.
Being Dismissed

They said things that a lot of people under the age of 50 would be told because they were too young. “You probably have IBS.” “It’s probably hemorrhoids.” “You just have gas.” “I’m sure it’s nothing. You’re too young.” I heard a lot of that over the year.

By the time 2014 came around, I had been on antibiotics for nine months from different doctors I had seen since 2013.

There were times when the pain would be worse and I would have to go to urgent care. I went at least six times. The first few times, they would say I had gastritis or something stomach-related and send me home with antibiotics and painkillers. The last few times, I was bent over and freezing because I was anemic. I started to lose weight and ended up losing 45 lbs.

I have experienced a lot of bias and straight-up racism with medical care.

The doctor came into the room and before he even said his name or mine, he said, “I don’t give drugs in this room.” My wife took the doctor out and started yelling at him in the hallway while I sat there, thinking, Don’t yell. They will not help me if you yell.

I have experienced a lot of bias and straight-up racism with medical care. In 2014, I had doctors ask, “Did you tell me you were gay? Listen, it doesn’t matter what’s wrong with you because you’re going to hell.”

Paula C.
Paula C.
Losing Her Job

I got a job that year, but I was having such a hard time because I couldn’t keep up. Then I started to see my hands turn white and thought I was working too hard and planning for our wedding was too much. But the doctors kept telling me that I was okay.

I started getting depressed because I didn’t feel good. I felt that I wasn’t pulling my weight or helping my wife like I should. I was telling people I couldn’t do things, but the doctor said I was okay so it was starting to mess with my head. I didn’t want to tell people when it was bad, so I was hiding it, which made it worse.

I ended up losing my job because I kept calling in sick.

I was so sick and dizzy that I could barely see and stand up.

Diagnosis

Turning Point

The day after we got married, we went to a Broadway play, but while we were there, I felt terrible. My colon was becoming completely blocked and I was starting to have serious complications. By the time the play was over, I was so sick and dizzy that I could barely see and stand up. I was shaking, my body was red, and my skin was hot.

When we got back to my best friend’s house, I ran past the door and barely made it to the bathroom. I had the most humiliating accident. I was lying on his bathroom floor and knew that this was bad. I knew something was wrong.

Around January, I started to have fainting spells. I went to an urgent care on a Thursday and said, “Ma’am, I don’t care what you say. Nothing is coming out of me but blood. Nothing!” The person behind the counter got a nurse, who came out and said, “I’ve seen some of your records. Has anybody given you a FIT test?”

Paula C.
Paula C.

I didn’t know what a FIT test was. She was a bit worried. She said, “You probably ate something red, but I’m going to give you this test. Unfortunately, we don’t have a lab here, so I will not have the results until next week.”

I was in agony and stayed in bed all weekend. I was going back and forth to the bathroom and blacking out. I called my wife and we went back to the ER. This time, I must have looked bad enough because they kept me. I still had a 13-hour wait, but they said, “Get her a room. Get some scans. We’re going to do a colonoscopy.” 

I don’t remember much after that. I was so sick that they started to medicate me and put me out. When I woke up the next morning, it was time for rounds and the doctors were going to come and talk to me. They did scans, blood work, EKGs, and all these tests, and they tried to do a colonoscopy.

They tried doing a colonoscopy, but they couldn’t get through.

Getting the Official Diagnosis

Around eight doctors came in. My heart started pounding. One doctor said they tried doing a colonoscopy, but they couldn’t get through. I didn’t know what to say after. It was a devastating way to find out I had colorectal cancer.

Reaction to the Diagnosis

What did that man say to me? What did those people tell me? Why did all those people ignore me? How long does this cancer take to grow? Black people have a higher risk of this? I was pissed and it was messing with me as much as the cancer was messing with me. I was mad and when I’m mad, I keep it in because I don’t want to hurt other people. Doubt, depression, and misery set in, and I needed to find a way to turn it around.

Paula C.
Paula C.

Treatment

Surgery to Remove the Tumor

They said, “We’re going to do emergency surgery. Based on what we see, it looks bad. We believe the tumor has broken outside of the colon wall. It might have some interference with your liver and other organs. We’re not sure what we’re going to find. We’re possibly going to do radiation and chemo because it looks massive. We might have to shrink it first or we might have to go in, do surgery, clean it up, and fix what we can. We need to decide. We’re going to keep you here because you are completely dehydrated.” I was skin and bones, and an absolute mess.

The tumor board said it looked bad, so we weren’t going to do chemotherapy or radiation, but we were going to do surgery. They brought me back to the hospital and prepped me for surgery. I was there for about four days prior and then a week and a half after.

The tumor was encapsulated in the colon and has not broken outside of the colon wall.

I went in early morning to prep and they told us that surgery would take 12 to 14 hours. They said, “We believe you are stage 3. When we go in, we might have to take out your uterus. We will take out whatever the tumor has affected. We will take out part or most of your colon. You will probably have a permanent ostomy. We may have to take out part of your liver. If it has gone deeper into the stomach, we will decide from there. We will do what we must do and that’s all we can tell you right now.”

When I woke up, the nurses came over and said, “Ms. Chambers, your doctor will explain everything.” He came in and said, “When we got in, it wasn’t what we thought.” Lara said the doctors came to her about four hours into surgery. They found that the tumor was encapsulated in the colon and has not broken outside of the colon wall. My body was completely swollen. I was blocked. They took out 34 lymph nodes. The whole surgery took 5 ½ hours. When they got the pathology back, there was no cancer in any of the lymph nodes.

Paula C.
Paula C.

Genetic Testing & Family History

Once my doctors knew that I had colorectal cancer, they did all the right things. They asked all the questions, especially my family history. They asked me repeatedly.

I decided to stay at the county hospital because they saved my life. I found my team, so I continued my care with the oncology and GI staff. In conjunction with UTHealth, they were able to offer genetic testing, which I qualified for and was able to do through my wife’s insurance. They suggested that because they think I have a genetic component. They tested me for Lynch, but it was negative.

That same year, my father-in-law and I did a DNA test and the results said I had another brother. A cousin contacted me and we talked about what was going on and I found out about David. He allowed me to share part of his story. He is an ostomate and was diagnosed with stage 3 colorectal cancer two years before me. He didn’t know about our family because he was adopted when he was a kid. We then found out that there’s a family history of not only colorectal cancer but GI cancers, and it runs deep in the family.

Look at your own biases. Think about when you are at the doctor yourself and how you would like to be treated. Keep it professional but bring in that real spirit of caring. 

Experiencing Bias

I experienced homophobia, racial bias, bigotry, and a lot of misogyny, which I think went into some of my diagnoses. A couple of people told me I was hysterical and that it was in my head. It was so freeing to tell my story for the first time. It brought people into my life who had a similar story.

Meeting them and finding that community made me realize that it wasn’t just me and that I wasn’t too young. It wasn’t because I was Black. It wasn’t any one of these things. There’s a way that we look at cancer and at diagnosis, treatment, and preventative medicine that needs to be changed. I had whole conversations about this cancer that has stigmas around it that I did not even know I was supposed to be ashamed of.

Paula C.
Paula C.

I’m a nine-year survivor and in those nine years, I’ve seen things change. Things take time. It’s like pulling a bandage off a wound and having the wound heal. We have to treat it and give it light. We have to uncover some of the issues with which we are dealing. Because we all have our own biases, it’s important for anybody in the healthcare field, especially here in the United States, to look at things within us that we need to look at.

Innately, I think most people who go into healthcare do it because they want to. It’s their calling. It’s also their decision to be in healthcare, a space where they care for people who show up in their rawest moments. It’s important to have grace and a little bit of humility. If someone’s coming to you, they’re putting their trust in you. 

Treat people with respect and dignity. Ask them, “Who are you? What happened to you? How did you get here? How can I help you? How did you get to me? Thank you for coming here.” Listen to them and meet people where they are.

The calling in healthcare is not for everyone. We still have laws, rules, and regulations, and we are to treat everyone with dignity and respect. Look at your own biases. Think about when you are at the doctor yourself and how you would like to be treated. Keep it professional but bring in that real spirit of caring. 

I want people to not be afraid to go to the doctor. I don’t want what happened to me to happen to anybody.

People need to get screened, especially those in the Black and LGBTQIA+ community. You need to feel comfortable and know that there are more and more places with affirming care and who show it. They want you to know that you are welcome. Look for the rainbows.

Let us know that we are welcome. Ask me what my pronoun is. Is that my partner or my wife? Do not assume. Ask us what we need and be in partnership with us.

I want people to not be afraid to go to the doctor. I don’t want what happened to me to happen to anybody. Know your family history. A lot of gay kids are kicked out of the house when they are young, but a lot of them stay in touch with their family members.

Paula C.
Paula C.

Words of Advice

We need to get screened for colorectal cancer. The screening age now is 45, but if you have a family history of colorectal cancer like me, especially if you have beautiful melanated skin, you want to make sure that you’re talking to your doctors early.

Cancer affects the family and not just the individual. If there’s cancer in the family, it needs to be openly discussed. We need to be tested. We need to know our family history.

Nobody is going to care for you the way you do. Always put yourself first.

Cancer is a scary word, but it’s a word. People survive, thrive, and live with cancer. We’re called survivors from the day that we are diagnosed, so from that day, I had a choice. Am I going to live with this or am I going to let it take me? I needed to find a way to live with it and I did.

But I didn’t want to just live—I wanted to thrive. If cancer’s something that you’re afraid of and it’s the reason you’re not getting screened, you’re doing yourself a disservice.

Advocate for yourself. You have the right to advocate for fair treatment and humane treatment. Nobody is going to care for you the way you do. Always put yourself first. Put the mask on first and take care of yourself first. Nothing can be healthy and whole until you are healthy and whole. If you’re not comfortable, say so.

Paula C.

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Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.


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Categories
Breast Cancer DIEP Hormone Therapies Invasive Ductal Carcinoma Mastectomy Patient Stories Surgery tamoxifen Treatments

Krista’s Stage 1A IDC Breast Cancer with ATM Mutation Story

Krista’s Stage 1A IDC Breast Cancer with ATM Mutation Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Krista B. feature profile

Krista’s stage 1A breast cancer journey is deeply connected to her family’s history. Her mother was diagnosed with stage 3 breast cancer at 48 and underwent various treatments like chemotherapy, radiation, and hormone therapy. She tested positive for a mutation in the ATM gene, which raises the risk of breast cancer. This finding led Krista to get genetic testing, revealing she also carried the same mutation, giving her a 69% risk of developing breast cancer.

Krista began following a rigorous screening schedule, alternating between mammograms and breast MRIs every six months. Despite a normal mammogram, her MRI detected an abnormality. Though specialists initially dismissed it as non-cancerous, Krista felt uneasy and insisted on a biopsy. This confirmed her breast cancer diagnosis just two weeks before her scheduled preventative surgery.

She chose to undergo a double mastectomy with DIEP flap reconstruction, using tissue from her abdomen to reconstruct her breasts. The process involved an initial eight-hour surgery followed by a revision surgery. After the procedure, Krista was relieved to avoid chemotherapy due to her low Oncotype DX score. Instead, she began a five-year course of tamoxifen, experiencing minor side effects like sleep disturbances and fatigue.

Her treatment plan also included daily exercise, which helped manage the side effects. Krista’s nutrition strategy focused on a plant-heavy diet, aiming for 8 to 10 servings of fruits and vegetables daily with a balanced intake of high-quality, low-quantity meat.

Mentally, Krista dealt with stress by spending quiet time, running, and leaning on her husband’s support. She emphasizes the importance of making informed, personal treatment decisions and encourages others to consider genetic testing and explore all their options.

Krista’s motivation to share her story comes from a desire to empower others with the knowledge she has gained. She hopes to help others make informed decisions and potentially prevent cancer. She advocates for taking one’s time to navigate the overwhelming journey of cancer, stressing the importance of making decisions that bring peace of mind.


  • Name: Krista B.
  • Diagnosis:
    • Breast Cancer
    • Invasive ductal carcinoma (IDC)
    • HR+, HER2-
  • Staging:
    • Stage 1A
  • Mutations:
    • ATM
  • Symptoms:
    • None; abnormality detected in breast MRI
  • Treatments:
    • Surgery: double mastectomy with DIEP flap reconstruction
    • Selective estrogen receptor modulator (SERM): tamoxifen
Krista B.
Krista B.
Krista B.
Krista B.
Krista B.
Krista B.

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.

Expand to read the AI-generated YouTube Video Transcript

[00:01] Hi, I’m Krista, and I am a nurse and a patient advocate and a breast cancer survivor. My story really begins with my mom’s cancer diagnosis. She was diagnosed at age 48 with stage 3 breast cancer. At that time, she was only tested for two gene mutations linked to breast cancer, which were the BRCA1 and BRCA2 mutations. She was negative.

[00:36] Fast forward, she did every type of treatment—chemo, radiation, hormone therapy, everything. She put up a strong fight for about 12 years. Shortly before she passed away, she was unfortunately offered expanded genetic testing for other genes linked to breast cancer. She did test positive for a mutation in her ATM gene, which was a pathogenic mutation and higher risk than the average ATM gene.

[01:15] She shared that with all of her children because we then had a 50% chance of inheriting that from her, so we had the option to also test for that mutation. A few months after she passed away, I decided to move forward with my own genetic testing and found out I was also a carrier of the same mutation. So, I had a 69% risk of breast cancer, a 5 to 10% risk of pancreatic cancer, and also a 2 to 3% risk of ovarian cancer.

[01:56] Because I was at high risk for these cancers, I started to follow the recommendations for more thorough and frequent screenings, which meant on top of mammograms, I was also doing breast MRI, alternating every six months. I started that process and also began considering different surgical options for preventative surgeries.

[02:20] During this time, my mammogram was normal, but my breast MRI showed an abnormality. We did some follow-up testing—ultrasound and diagnostic mammogram. At that time, they said that it did not look like cancer. I was nervous about that with my risk, so I followed up and had three specialists tell me that it was not cancer. They advised me to take my time, make my decisions, and move forward with the surgical plan that I had in place.

[03:01] So, I did that, but because it started to have a possibility of affecting the process of my surgery, I requested a biopsy. It came back two weeks before my preventative surgery and showed a diagnosis of breast cancer. It was a little bit of a shock. I went into my biopsy thinking, “Oh, I’m good. This is just a routine check to make sure it’s okay to move forward with my surgery in the order we had planned.” So, I was really surprised at the diagnosis, but I was grateful to have that plan in place already and that I wasn’t scrambling to make decisions.

[03:42] I had my first surgery, a double mastectomy with flap reconstruction, on January 30th of this year, followed by a second surgery in April. Luckily, I really believe that I owe this all to my mom and advances in genetics. I’m grateful every day for the fact that she did genetic testing because, to this day, at this point in time, I don’t think I would still have a diagnosis based on my screening schedule. I’m very grateful I was able to avoid chemotherapy and a lot of the other things that I watched her go through. I’m grateful for that every day. It saved my life.

[04:36] If you’re interested in doing genetic testing, the first step would be to talk to your medical provider. This can sometimes be your primary care provider, an OB-GYN, or any specialist in the field of cancer that you may or may not have a family history with. You’re going to want to request a hereditary cancer panel, which screens for somewhere around 79 different genes that are now linked to cancer. The first step would be to request that from your provider, and most of the time, they’ll recommend that you see a genetic counselor, which is a great idea in my opinion. They’re amazing and have the most up-to-date information on the different genes and the risks associated with each. They do a deep dive into your family history and then make recommendations for different testing.

[05:31] From that point, it has really changed my life. I have three little girls, and I just think how different it’s going to be for them and how much they can avoid. But when it comes down to choices for reconstruction, there are typically three main choices that are offered to patients or should be offered to patients. One of them is esthetic flat closure, the second one is breast implants, and the third is flat base reconstruction. Flat base reconstruction is one that’s a little less known. It was my choice, and rather than having an implant, they take tissue from a part of your body and basically transplant it with all the vessels and use that in place of the implant for your reconstruction.

[06:26] It’s pretty amazing the way that they do it, and there are different places that they can take the tissue from. One of the most common is the one that I chose called deep flap reconstruction. They take tissue from your abdomen and use that for the reconstruction. It’s a little bit of a longer surgery upfront, and it was a two-phase surgery for me. That’s very common for patients who choose this reconstruction option. It is around an eight-hour surgery usually, so a little longer.

[07:06] My advice to anyone who is facing these choices is that they’re very hard choices, right? They’re life-changing decisions that you have to make. Sometimes you aren’t given a lot of time, but the thing that I hope everyone understands is that there are different options out there. Regardless of what anyone else thinks—whether it’s your provider, your family members, or someone who has been through it—ultimately, it’s your decision, and it’s what you have to live with. It should be the choice that makes you feel the most at peace moving forward.

[07:50] I have a lot of patients who I talk to who get very frustrated because they were not offered all the options. That’s one of the reasons I like to share my story because even for me as a nurse, in the beginning, I did not have a clue that this was an option. My biggest advice would be to take your time. Even with a cancer diagnosis, you have time to make an informed decision. Consider all of your options and choose the one that makes you feel the most at peace moving forward.

[08:25] The recommendation for me, treatment-wise moving forward, was that I had a very low risk of recurrence. My Oncotype score was one out of 100, so no chemo was recommended. But I was hormone receptor-positive, HER2-negative. The recommendation for me was tamoxifen, and that would be over a five-year period. I am at this point only three months in, but very happy to say that my side effects have been very minimal so far. I know that can change, but so far, not bad—just a little bit of sleep disturbance and fatigue, but nothing that is not manageable.

[09:10] One of the things that my oncologist, who I love, recommended was making sure you exercise every day. That was going to make the biggest difference in my side effects on that medication, so he said, “Don’t stop.” So I increased it, and I’m going to keep doing that and hope for the best moving forward. I know that side effects can be really hard sometimes, and it’s always a hard choice. It was something that I never wanted to do, which is why I chose the preventative surgery. But here we are. Just try to make the best of it and take it day by day.

[09:52] I think I tend to carry stress well somehow, but after everything was finished, I felt this huge weight lifted off my shoulders. I remember saying to my husband, “I didn’t even realize how much I was carrying until I was done with the surgery part.” It’s a huge stressor, but I did try to do a few things during the last year as I was going through all of this that helped a lot.

[10:31] For me, I’m not necessarily a meditation person, but that is very helpful for a lot of people. For me, I have a swing on my back porch, and that’s kind of my space where I spend a lot of time. I guess it could be similar to meditation, but that was very helpful to me. I would just go out and have quiet—turn off the phone, have time to just kind of process things, and swing on my swing. Grounding is also really good.

[11:10] Having somebody to talk to is important. I’m very lucky. My husband is very supportive, and he listened to me. I’m an out-loud processor, so he listened as I made all these hard decisions and changed my mind 500 times. Just the back-and-forth, talking about all the things I’m learning about food—you have to have a person who is willing to listen and not necessarily give advice. That was very helpful.

[11:42] I’m also back to the exercise, but running is a huge stress relief for me. That was one of the things I also tried to focus on—making sure I was getting in running and doing some deep breathing.

[11:55] One of the biggest things that feels overwhelming to a lot of people who have just been diagnosed with cancer or are at high risk is, “What do I eat?” That was one of the first things that I said to my doctor, “What should I eat? Is there a specific diet that I should be on?” I talk to women every day who are asking the same questions. It is one of the most impactful things that we can do, but also one of the most overwhelming, especially if you’re trying to navigate all of these things being thrown at you with a new diagnosis and high-risk genes.

[12:34] I am in a Master’s of Medical Nutrition program right now, which I love. I get to focus a lot on the research with cancer prevention and all of the new studies that are coming out. I love it. I’m very passionate about it, but I will also say that there is no perfect plan. There’s no perfect diet that we can all do to prevent cancer, right? There’s no 100% guarantee with anything when it comes to cancer. It does what it wants.

[13:10] Some of the best recommendations I can give are to eat a lot of plants. One of the best things you can do is eat lots of fruits and vegetables. I think the recommendation is 5 or 6 servings. I try to go for 8 to 10 every day, which sounds like a lot, but once you start incorporating them and finding different ways to do it, there are so many things—fruits, vegetables, nuts, legumes, whole grains—that have so many benefits for cancer and trying to prevent cancer and reduce your risk as much as possible.

[13:47] The reason that I like to share this kind of information is because, for me personally, moving from this place of overwhelm and trying to navigate everything into a space where I felt more empowered was huge for me. I remember thinking, “I’m a nurse, and how much of this did I not know from the start, and how much have I had to learn?” I felt very fortunate to have access to a lot of courses and certifications that not everyone has.

[14:26] I feel like I owe my life to my mom and genetic testing, and I would be in a very different place without that. After I went through all of this, I felt this huge responsibility to share with others because I know there are so many people who could benefit from this information. Even if it makes a difference for one person or helps one person feel more empowered in their decision-making and informed about the options that are available, even genetic testing—if it helps one person or prevents one cancer diagnosis—it’s totally worth it.

[15:12] No matter what phase you’re going through, it’s scary, and it’s overwhelming. Whether you have been diagnosed with cancer already or are a provider who is just starting out on your journey, just know that it’s not always going to feel like it feels right now.


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More Breast Cancer Stories

Amelia

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Symptom: Lump found during self breast exam

Treatments: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen

Rachel Y., IDC, Stage 1B



Symptoms: None; caught by delayed mammogram

Treatments: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Rach smiling against fall leaves

Rach D., IDC, Stage 2, Triple Positive



Symptom: Lump in right breast

Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin

Caitlin J., IDC, Stage 2B, ER/PR+



Symptom: Lump found on breast

Treatments: Lumpectomy, AC/T chemotherapy, radiation, hormone therapy (Lupron & Anastrozole)

Joy R., IDC, Stage 2, Triple Negative



Symptom: Lump in breast

Treatments: Chemotherapy, double mastectomy, hysterectomy

Categories
Appendix Cancer Chemotherapy FOLFIRI (folinic acid, fluorouracil, irinotecan) FOLFOX (folinic acid, fluorouracil, oxaliplatin) Hysterectomy (radical) Patient Stories PIPAC (pressurized intraperitoneal aerosol chemotherapy) Surgery Treatments

Ariel’s Stage 4 High-Grade Appendix Cancer Story

Ariel’s Stage 4 High-Grade Appendix Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Ariel, a fitness professional and single mother to an 18-month-old son, was diagnosed with stage 4 high-grade appendix cancer at age 30. Her symptoms began as sharp pains with gas and bowel movements, which she initially dismissed as menstrual-related. A routine OB-GYN visit revealed a large mass, leading to a diagnosis of mucinous adenocarcinoma, a rare and aggressive appendix cancer that had spread to multiple organs.

Ariel underwent a radical hysterectomy, which was one of the most challenging aspects of her journey, ending her ability to have more children. She found this loss deeply difficult and struggled with grief. However, she found gratitude in her role as a mother and the perspective gained through her experience, and found strength by focusing on the present and embracing her emotions.

Ariel went through 25 rounds of chemotherapy (FOLFOX and FOLFIRI) but unsuccessfully qualified for HIPEC (hyperthermic intraperitoneal chemotherapy). She participated in a clinical trial for PIPAC (pressurized intraperitoneal aerosol chemotherapy) at City of Hope, which led to two negative biopsies. To access specialized care, Ariel and her family relocated to be near the Huntsman Cancer Institute. This move provided her with crucial care and an integrated healthcare system.

Ariel encourages others to take control of their health care, actively participate in treatment decisions, and interview doctors to ensure comfort with their care team. She also stresses the importance of asking for help, staying flexible in beliefs, and giving freely to others as part of the healing process.


  • Name: Ariel M.
  • Age at Diagnosis:
    • 30
  • Diagnosis:
    • High-Grade Appendix Cancer
  • Staging:
    • Stage 4
  • Initial Symptom:
    • Sharp pain with gas & bowel movements
  • Treatment:
    • Radical hysterectomy
    • Chemotherapy: FOLFOX & FOLFIRI
    • Clinical trial: PIPAC (pressurized intraperitoneal aerosol chemotherapy)
Ariel M.
Ariel M.
Ariel M.
Ariel M.
Ariel M.
Ariel M.
Ariel M.

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.


Thank you for sharing your story, Ariel!

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More Appendix Cancer Stories

Lindsay B. feature profile

Lindsay B., LAMN Appendix Cancer



Symptom: Increasing urge to urinate

Treatments: Cytoreductive surgery (CRS), Hyperthermic Intraperitoneal Chemotherapy (HIPEC)

Faye L., Pseudomyxoma Peritonei (Rare Appendix Cancer)



Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers

Treatments: Chemotherapy, surgery

Alli M., Appendix Cancer, Stage 4



Symptom: Severe abdominal pain

Treatments: Surgeries (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy

Ariel M., Appendix Cancer, Stage 4, High-Grade



Symptom: Sharp pain with gas & bowel movements

Treatments: Surgery (radical hysterectomy), chemotherapy, PIPAC clinical trial (pressurized intraperitoneal aerosol chemotherapy)

Hannah R., Appendix Cancer, Stage 4



Symptoms: Bloating, fullness, UTIs, blood in urine, pain during intercourse, high blood pressure, spotting

Treatments: Surgery (appendectomy, cytoreductive surgery), chemotherapy, radiation (to treat recurrence)

Categories
Abraxane (paclitaxel) Adriamycin (doxorubicin) BEP (bleomycin, etoposide and platinum) Chemotherapy Gemzar (gemcitabine) Metastatic Orchiectomy Patient Stories Surgery Testicular Cancer Treatments

Callan’s Stage 3 Testicular Cancer Story

Callan’s Stage 3 Testicular Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Callan R. feature profile

Before his stage 3 testicular cancer diagnosis, Callan was actively engaged in mixed martial arts and Brazilian jiu-jitsu, maintaining a rigorous fitness regime. Upon discovering a lump in his right testicle, Callan immediately suspected cancer, a diagnosis that was confirmed after a series of medical consultations.

Initially, Callan underwent multiple chemotherapy treatments and one surgery, but the cancer recurred within six months. He subsequently tried a low-level chemotherapy regimen, which proved ineffective. Recently, Callan began participating in a clinical trial for a targeted treatment designed to attack the remaining tumor in his lung.

Throughout his treatment journey, Callan faced significant physical and emotional challenges. He experienced severe side effects from various chemotherapy regimens, including BEP (bleomycin, etoposide phosphate, cisplatin), cisplatin, and the high-dose TopCaT (topotecan, carboplatin, thiotepa) treatment with blood stem cells. These treatments caused debilitating symptoms such as extreme weight loss, nerve damage, temporary blindness, and a plethora of other health issues. Despite these setbacks, Callan remained determined, continuing to engage in physical activities whenever possible.

Callan’s resilience is evident in his ability to maintain a positive outlook and a sense of normalcy amid ongoing treatments. He has found solace in helping others by sharing his experiences and supporting fellow cancer patients. His participation in the trial, which targets a specific protein in his tumor, represents a glimmer of hope though it also comes with risks as his liver has recently been affected by the treatment.

Callan’s story is one of tenacity and hope, as he navigates the complexities of cancer treatment while striving to lead a meaningful life and support others facing similar battles.


  • Name: Callan R.
  • Diagnosis:
    • Testicular Cancer
  • Staging:
    • 3
  • Symptom:
    • Lump in right testicle
  • Treatments:
    • Chemotherapy: cisplatin, doxorubicin, BEP (bleomycin, etoposide phosphate, cisplatin), GemTaxol (gemcitabine & paclitaxel), TopCaT (topotecan, carboplatin, thiotepa)
    • Surgery: orchiectomy
    • Clinical trial: BNT142

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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More Testicular Cancer Stories

Ben F. shares his cancer story
Ben F., Testicular Cancer, Metastatic Symptoms: Hard, swollen testicleTreatment: Surgery, laparoscopy, orchiectomy
Callan R. feature profile

Callan R., Testicular Cancer, Stage 3



Symptom: Lump in right testicle

Treatments: Chemotherapy (cisplatin, doxorubicin, BEP, GemTaxol, TopCaT), surgery (orchiectomy), clinical trial (BNT142)

Josh T., Testicular Cancer, Stage 3A



Symptoms: Pain in his chest, lower back, and abdomen; shortness of breath, especially during exercise; mass found on one testicle

Treatment: Chemotherapy

Categories
Chemotherapy Endometrial Cancer Patient Stories Radiation Therapy Surgery Treatments Uterine

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Lexie W. feature profile

Lexie’s life changed dramatically when she was diagnosed with cancer three times. Her symptoms started with a prolonged period and severe cramps. Initially misdiagnosed, she eventually discovered she had cancer. The first treatment involved surgery, but subsequent relapses required more aggressive treatments.

During her first relapse, severe cramps led to the discovery of a softball-sized mass. She underwent surgery and chemotherapy, maintaining a positive attitude with support from her husband and family.

Later, respiratory issues revealed another mass in her chest. Proton beam radiation followed by chemotherapy initially seemed successful, but cancer spread to her lung lining, necessitating further treatments.

Throughout her journey, Lexie faced severe side effects from chemotherapy. She learned the importance of self-advocacy in medical care and relied on her strong support system and medical team. She focuses on controlling what she can, finding silver linings, and encouraging others to seek support.


Karyopharm Therapeutics logo

Thank you to Karyopharm for its support of 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 for treatment decisions.


  • Name: Lexie W.
  • Diagnosis:
    • High-Grade Endometrial Stromal Sarcoma
  • Symptoms:
    • Prolonged period
    • Severe cramps
    • Difficulty breathing
  • Treatment:
    • Surgery
    • Chemotherapy
    • Proton beam therapy
Lexie W.


I had a period that lasted over a month. I kept thinking that it was normal and that it was going to stop.

Introduction

I live in Scottsdale, Arizona, but I grew up in a small town in Minnesota.

I love going to different coffee shops and checking out the vibe and the coffee. I love hiking and being out in nature during the day. I did a lot of camping growing up. That was usually our vacation.

I love to travel and go to different places. It’s fun to see different cultures. I love to spend time with friends and family.

I have been diagnosed with cancer three times. What I have now is high-grade endometrial stromal sarcoma. It was low-grade at first, then it became high-grade.

Lexie W.
Lexie W.

Initial Cancer Diagnosis

One time, I experienced intense cramps but I knew they weren’t period cramps. I know my body very well and I knew that something was off, so I went to the emergency room. They gave me Midol and sent me home.

Another time, I had a period that lasted over a month. I kept thinking that it was normal and that it was going to stop, but my sister told me I needed to get checked so she scheduled an appointment for me.

I was eventually diagnosed with low-grade endometrial cancer, but I didn’t do chemotherapy or radiation. I felt I got off a little easier, having to undergo surgeries and then continue living my life.

A doctor came in and said, ‘You’ve got a huge mass the size of a softball that’s pushing up on stuff.’ I asked, ‘When are we going to find out if it’s cancer?’ He said, ‘It is.’

First Relapse

Symptoms

I experienced very similar symptoms and I was still being so ignorant of it. I didn’t think of cancer, which was crazy to me, but that’s how I live my life. I don’t try to allow those thoughts to come in too often.

At the time, my husband was traveling for work. I was walking with a friend and I was a little bit hunched over because I was having a lot of intense cramp-like feelings. I kept telling her I thought it was my appendix, thinking it was appendicitis.

I went to the ER and that was pretty tough because I was by myself. After they ran all the tests, a doctor came in and said, “You’ve got a huge mass the size of a softball that’s pushing up on stuff.” I asked, “When are we going to find out if it’s cancer?” He said, “It is. We can tell,” so that was tough.

Lexie W.
Lexie W.
Reaction to the Relapse

I was overwhelmed, but I never felt like my life was over. I thought it was another fight I was going to have to fight. It was more about putting my game face on. It was another obstacle in front of me that I had to conquer.

It was tough to make the phone call to my husband. I told him I was going to the ER and he knew the entire time what it could be. When I called, I could barely get words out. He said, “I’m on my way.” It’s so good to have such a good support system, so that was tough, but we got through it.

They all came to the same conclusion. Chemotherapy was necessary knowing that I already had cancer once before.

Treatment

I ended up going through surgery to get the mass out and then I had to decide whether I was going to do chemotherapy or not to make sure that we got rid of all cancer cells.

Make sure that you get a second opinion so that you’re as informed as possible before making a treatment decision. I ended up getting the opinion of a few different doctors. I gave them all of my test results and they all came to the same conclusion. Chemotherapy was necessary knowing that I already had cancer once before and it came back and is now high-grade.

Lexie W.
Lexie W.
Side Effects of Chemotherapy

Chemotherapy was intense. I also got pneumonia during treatment. There was one point when I was lying on the floor and, in that moment, I felt like my life was over because I was so done that I could not fight anymore.

Chemotherapy was brutal on me. The fatigue was pretty intense. The brain fog was pretty bad too. I had hair loss, but it never mattered to me, which is crazy because I was so superficial growing up.

Since the first time I got cancer, one of the silver linings is my priorities changed. It wasn’t about making sure my hair or makeup was perfect. I couldn’t care less. There was hair loss, but I never cared about wearing a wig. The only time I wear a head cover is to protect myself from the sun, but otherwise, it’s part of my journey, so I go with it.

I was exhausted. I’ve already done this twice. I didn’t want to do this again, but I wasn’t ready to give up.

Second Relapse

Symptoms

I’ve gone through cancer twice and I thought a cold was going to knock me out because, at the time, I couldn’t breathe very well and I was fatigued. I thought it was COVID.

I went to the ER because I also couldn’t breathe. They ran a test and said I didn’t have COVID. They ran a few tests to make sure and did a scan. The doctor came in and said, “You have a big mass in your chest that is pushing up on all of the important tubes that help you breathe.”

Lexie W.
Lexie W.
Treatment Decision-Making

I thought that they could remove the mass and then we were good, but the mass was next to some important organs. At that moment, I was exhausted. I’ve already done this twice. I didn’t want to do this again, but I wasn’t ready to give up.

After my first relapse and going through chemotherapy, I told my family that if it happened again, we’d be waving the white flag. I couldn’t go through the treatments again. It was too much. That was a hard pill for my family to swallow because it could cut my life short.

But when I was put in the actual situation, I decided I wasn’t done yet. I still had too much to do in my life. It was difficult because I had to think through. Was this something I wanted to do? Did I want to go through the different treatment options? Is this going to affect my quality of life? That’s how I choose to make my decisions these days.

When I looked at my PET scans, it looked like everything was gone. The only thing that was showing was a little bit of red near the scar tissue.

We ended up not doing surgery. We did proton beam radiation, which is different from the traditional one. I was so grateful to be able to go to a facility that had that available because that’s not very common everywhere. It has fewer short-term and long-term side effects.

After radiation, I did three cycles of chemotherapy. The radiation seemed to work, so that was great news.

When I looked at my PET scans, it looked like everything was gone. The only thing that was showing was a little bit of red near the scar tissue. According to my radiologist and doctor, they were pretty sure it was scarring, so I should be good to go and continue to live my life. We could do a couple more rounds, but ultimately, it was my decision. I weighed the pros and cons, and I felt good that it was gone.

Lexie W.
Lexie W.

Cancer Spread

I was able to live my life normally for a couple of months, so it was a nice little reprieve from a mental health standpoint. I needed it because I was tired of fighting.

I did my follow-up PET scan a couple of months later, which showed it had spread. It’s in the lining of my lungs. I don’t say I regretted my decision, but it was the decision I made.

Treatment

I had to do a lung surgery. I’ve been doing chemotherapy. I’m cautiously optimistic. I hope that the PET scan will show that it worked because I had to make another hard decision of what type of treatment plan I wanted to go with for this next round.

I had three different options. I took some time to think. I was tired of it. I wanted to move on with my life. I went with the most aggressive options, which also had the highest risk. If the PET scan doesn’t show what I hope and believe it will show, then I don’t have a whole lot of options.

I have a decent amount of anxiety, but I’ve been raised to focus on what I can control and then let the rest go.

Having a Strong Support System

With the medical team that I have, it’s a collaboration. They keep me informed and give me all the options. If they believe an option to be better than the others, they’re going to voice their expert opinion. One thing that I like about where I go now is they have a tumor board. As we talk about self-advocacy and getting second opinions, they’ve already integrated those into their model, which is so reassuring.

If they come across unique cases that they’re not as exposed to, they bring the case to the tumor board, so they can weigh in. They bring the information back to the patient to help the patient make an informed decision.

Because of that collaboration, I don’t feel like I’m on an island. All of my family members rally together during these times. They try to get as much information as they can and filter what’s valuable to help me make an informed decision. It’s a lot of weight to be the sole decider, but I guess that’s part of life. We have to make decisions all the time. How do you do that successfully? It’s a team effort.

Lexie W.
Lexie W.

Living Life

I’m like a duck where I’m calm on top of the water and swimming for my life underneath. I have a decent amount of anxiety, but I’ve been raised to focus on what I can control and then let the rest go.

There’s a lot in my life that I cannot control and this is one of those things. I remind myself that I’m doing everything that I can and I have to be okay with it. Then let the rest be what it is.

I didn’t understand that I could advocate for myself. You know what’s best for you, so it’s important to push for what you know is right.

Importance of Self-Advocacy

Self-advocacy is so important to be able to make an informed decision. You can’t do that without getting all of the information and advocating for what you feel is right. The reason why I think it’s so important to push for what you feel is right is because of my situation. They kept telling me that it was just period cramps when I knew it wasn’t, but they’re the experts and so I felt a little bit defeated and didn’t necessarily know what direction to take.

I needed my sister to advocate for me because I didn’t know what self-advocacy was. It was my first time going through cancer, so I didn’t understand that I could advocate for myself. You know what’s best for you, so it’s important to push for what you know is right.

Lexie W.
Lexie W.

Words of Advice

Live positively because the opposite sounds so miserable. Of course, we all have our moments. I’m not saying I’m positive 24/7; that’s unrealistic. I have days when I feel down. You need to have more up days than down days. I choose to be positive.

Go big or go home because life is too short. Take full advantage of your situation and find the silver lining.

You’re not alone. I don’t want people to ever feel like they’re alone. There are communities and resources out there to help you.

Life is too short. Take full advantage of your situation and find the silver lining.


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Special thanks again to Karyopharm for its support of our independent patient education content. The Patient Story retains full editorial control.


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