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Chemotherapy Clinical Trials Colon Colorectal FOLFOX (folinic acid, fluorouracil, oxaliplatin) FOLFOXIRI Immunotherapy Patient Stories Surgery Treatments

Amy’s Stage 4 Colon Cancer Story

Amy’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Amy L. feature profile

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

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

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

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


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


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

Introduction

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

Pre-diagnosis

Initial Symptoms

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

Amy L.
Amy L.
PCP Appointment

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

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

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

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

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

Getting a Colonoscopy

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

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

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

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

Amy L.
Amy L.

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

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

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

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

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

Diagnosis

Biopsy

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

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

Amy L.
Amy L.
Surgery

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

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

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

Oncologist Appointment

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

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

Amy L.
Amy L.

Treatment

FOLFOX Chemotherapy

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

Getting a Second Opinion

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

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

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

Side Effects of FOLFOX

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

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

Amy L.
Amy L.

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

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

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

Post-Treatment Follow-Up

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

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

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

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

Amy L.
Amy L.

Relapse

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

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

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

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

Reaction to the Relapse

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

Amy L.
Amy L.

Looking at Statistics

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

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

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

Switching Oncologists

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

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

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

Amy L.
Amy L.

Relapse Treatment

FOLFOXIRI Chemotherapy

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

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

Side Effects of FOLFOXIRI

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

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

Amy L.
Amy L.

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

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

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

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

Joining a Clinical Trial

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

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

Amy L.
Amy L.

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

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

Future Treatment Plans

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

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

Words of Advice

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

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

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

Amy L.

Amy L. feature profile
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Categories
EGFR Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy SBRT Tagrisso (osimertinib) Targeted Therapies Treatments

Leah’s Stage 4 Non-Small Cell Lung Cancer with EGFR exon 19 Deletion Story

Leah’s Stage 4 Non-Small Cell Lung Cancer with EGFR exon 19 Deletion Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Leah P.

Leah was diagnosed with stage 4 non-small-cell lung cancer (NSCLC) with EGFR exon 19 deletion at 43. Initially misdiagnosed with a post-viral cough and exercise-induced asthma, her persistent symptoms led to multiple doctor visits and treatments. Despite these efforts, her condition worsened, culminating in a CT scan that revealed metastatic cancer with a bone biopsy confirming stage 4 NSCLC.

Leah began treatment with Tagrisso (osimertinib), a targeted therapy that significantly shrank her primary tumor and healed bone metastases, and also underwent SBRT radiation. Although she faced side effects like gastrointestinal issues, a rash, skin and nail issues, and mouth sores, she remains stable with no progression in her lungs and continues her treatment at Vanderbilt-Ingram Cancer Institute.

Emphasizing the importance of self-advocacy and seeking second opinions, Leah recounts her insistence on further testing and comprehensive care. Her husband’s previous cancer diagnosis highlighted the necessity of thorough medical evaluation. She stresses the importance of enjoying daily life and finding inspiration and new beginnings even after a terminal diagnosis.


  • Name: Leah P.
  • Diagnosis:
    • Lung Cancer
  • Mutation:
    • EGFR exon 19 deletion (E19del)
  • Staging:
    • Stage 4
  • Initial Symptoms:
    • Persistent dry cough
    • Shortness of breath
    • Heaviness in the chest
    • Coughing up blood
    • Weight loss
    • Right rib pain
    • Right shoulder pain
  • Treatment:
    • Targeted therapy: Tagrisso (osimertinib)
    • Xgeva (denosumab)
    • Radiation: stereotactic body radiation therapy (SBRT)
Leah P.


Introduction

I was born and raised in Louisville, Kentucky, but now live right outside of Louisville. I’ve been a stay-at-home mom for 19 years now. My oldest is 19 and I also have a 17 ½-year-old daughter and an almost 14-year-old son.

In December 2019 at 43 years old, I was diagnosed with stage 4 non-small-cell lung cancer (NSCLC) with a driving mutation of EGFR exon 19.

Pre-diagnosis

Initial Symptoms

In mid-September 2019, I started having persistent dry cough. I didn’t think anything of it, but after about two weeks, I went to my primary care physician because the cough wouldn’t go away. She diagnosed me with what she called a post-viral cough and put me on a steroid. In about a week or so, I started feeling better.

Leah P.

‘I’m feeling worse. Now I’m feeling tired. I’m still coughing, I have a heaviness in my chest, and I feel as if I may have pneumonia.’

Leah P.
Symptoms Worsen

A few weeks later, the cough came back. I also started having shortness of breath. I was a distance runner for many years and I would run 8.5-minute miles with my running group while talking the entire time. I started noticing that I could keep up my pace, but I couldn’t keep up the conversation without feeling winded.

When I went back to the clinic, I saw a different doctor and told him I felt a heaviness in my chest, especially when running. He told me that I had exercise-induced asthma. I know my body and I’ve never had this issue before, so why is this suddenly an issue?

I saw an allergist and he said it wasn’t asthma. I went back to the same doctor, who wasn’t my first choice but was the one available, and said, “I’m feeling worse. Now I’m feeling tired. I’m still coughing, I have a heaviness in my chest, and I feel as if I may have pneumonia. Can I have a chest X-ray?” He said I didn’t need it because I sounded like I was breathing fine. I asked him to do it to make me feel better.” He said, “I’ll do it, but I’m going to call you in 45 minutes and tell you it’s negative for pneumonia. This is either allergies or asthma.”

Forty-five minutes later, he called me and said, “You know what, I can’t believe I’m admitting this, but you have consolidation in your right lung, which means you have pneumonia.” He put me on a Z-Pak and a steroid.

Halfway through the Z-Pak, while at my daughter’s swim meet, I kept feeling worse and worse. When we got back home that night, I started coughing up blood. I thought this wasn’t right. On Monday morning, I called the doctor to let him know what was going on. He thought I needed a stronger antibiotic and more steroids. Every time I was on steroids, I felt better, but I still thought this wasn’t right.

Leah P.

I could hardly walk up the steps without having to sit down because I couldn’t breathe.

Leah P.
Hospitalized for Pneumonia

About mid-November, I went back to the doctor and said, “Can you please do another X-ray? Clearly, this pneumonia is not going away.” They did and it still showed right lung consolidation. They admitted me to the hospital for 4 days to be on round-the-clock IV infusion, high-powered antibiotics, and steroids. By the time I left, I felt pretty good because I had been on steroids through IV.

While I was there, the pulmonologist came in and said, “I’m going to do a bronchoscopy. We’re going in through your nose, down through your throat, and into your lung to look around with a camera and flush it with saline. If I see any masses or nodules, we’ll go ahead and biopsy them.” He did that and everything looked great.

He said, “There’s consolidation in your right lung. It’s residual pneumonia. Pneumonia can hang around for several weeks. I didn’t see anything unusual.”

Seeing a Nurse Practitioner

I could hardly walk up the steps without having to sit down because I couldn’t breathe. I was having right rib pain and right shoulder pain. I was coughing, lost weight, and looked awful.

I called the doctor’s office and they said they didn’t have any appointments, so I drove there and cried to the ladies at the front desk. I told them there was something seriously wrong with me and I needed someone to see me. They ignored me a bit, so I said, “I’m not leaving until someone sees me.”

They sent the nurse practitioner out, but that was more for a mental wellness check because I think they thought I was losing it. She sat down and listened to everything I had been through. I had written down dates and times. She said, “Something’s not right about this. You know your body. I’m going to send you to the hospital for an outpatient CT scan.”

Leah P.

She said, ‘There are some things on your CT that are a little concerning… we need you to go to the emergency room to be admitted to do further testing.’

Leah P.
Getting the CT Scan Results

I got a CT scan while I was in the hospital. After I got home, my original primary care physician called me and kept asking, “Are you having any back pain?” I said no. She asked a few other questions and I explained I had a cough, heaviness in my chest, and shortness of breath.

She said, “There are some things on your CT that are a little concerning. I’m not that worried, but we need you to go to the emergency room to be admitted to do further testing.”

Going to the Emergency Room

My mom and I went to the emergency room. After waiting for my husband to get there, we saw the doctor, who said, “Have you seen your CT results?” This was before test results arrived in real time on MyChart. He showed me the computer screen and said, “This is what we’re concerned about.” It said, “Lytic lesions present on T4 and T5. Highly concerning for metastatic cancer.”

I read that to my husband and mom, looked at the doctor, and said, “That means cancer that spread from where it started.” He said, “Yes, ma’am, you’re correct.” I said, “I don’t understand. What’s going on?” He said, “I don’t know, but we’re going to admit you and figure out where this cancer is coming from.”

They admitted me to the hospital and called in a pulmonologist because I had fluid in my right lung. They said that could be a sign of breast cancer or ovarian cancer, given my age, health, and that I had never smoked.

Leah P.

None of us knew that you could get lung cancer without smoking.

Leah P.
Getting a Thoracentesis

The hospitalist came in and called the pulmonologist to do a thoracentesis to remove some of the fluid from my lung to test for malignancy. Within 24 hours, the test came back as malignant, but it didn’t indicate where it was coming from.

Spinal Biopsy

They sent an oncologist over and he opted to do a bone biopsy of my spine because it was the easiest place to reach.

Diagnosis

Official Diagnosis

When the bone biopsy came back a day or so later, it said stage 4 non-small-cell lung cancer. You could have knocked us over with a feather because none of us knew that you could get lung cancer without smoking.

The oncologist told me that I had 6 to 12 months to live and that I needed to get my affairs in order. I was 43 with young kids. My husband asked him to leave the room, never come back, and to send a different oncologist.

Biomarker Testing

The second oncologist that came in was one of my husband’s fraternity brothers. He said, “I’m not going to say 6 to 12 months yet because you’ve never smoked and you’re healthy. You may have a biomarker or a gene driving this lung cancer, so we need to do biomarker testing.” It was the first time we ever heard of that. I tested positive for the EGFR exon 19 deletion mutation.

Leah P.

How can you tell me that I have metastatic cancer and I’m going to die?

Leah P.
Reaction to the Diagnosis

I burst into tears, thinking this couldn’t be happening. Metastatic cancer is what you die from. I ran the morning that I was admitted to the ER. Even though my breathing was so bad, I still ran 3 miles, so how can you tell me that I have metastatic cancer and I’m going to die when I’m still doing these things? I remember sitting there and crying, “My job is not done here. My job cannot be done here. I still have life to live. I still have kids to raise.”

Treatment

Tyrosine Kinase Inhibitor

I went to see the local oncologist and was prescribed Tagrisso, which is a targeted therapy (tyrosine kinase inhibitor) for my genetic marker. He had a sample, so I was able to start immediately.

The only places my cancer had spread was to my spine and pelvis. I had one primary tumor in my right middle lobe and about 13 bone metastases in my spine and pelvis. About a year into my treatment, all those bone metastases were sclerotic, meaning they were healing, and my primary tumor had shrunk by 70%.

SBRT Radiation

We wanted to be aggressive and asked what else we could do. They introduced us to a radiation oncologist at the end of November 2021. In the beginning of December, I had eight sessions of SBRT radiation, which is strong, high-powered, and precise, to the primary tumor in my right lung.

Leah P.

About a year into my treatment, all those bone metastases were sclerotic, meaning they were healing, and my primary tumor had shrunk by 70%.

Leah P.
Side Effects of Tagrisso

When you’re prescribed Tagrisso, they give you a laundry list of possible side effects. The most common are gastrointestinal, which is diarrhea, and what they call the Tagrisso rash. You can get it anywhere, but it’s primarily on your face and looks like bad acne.

The next most common side effects are skin and nail issues around nail beds because Tagrisso is so drying. You get splits around your nails and they become paper thin. You get little paper cuts, but they hurt worse in the fingers and toes. They also told me to expect some nausea.

When I first started taking Tagrisso, I didn’t have diarrhea as much as I got the rash. I also had zero appetite. Food didn’t taste right, so I was forcing myself to eat. That lasted about two weeks.

Another possible side effect but not as common are mouth sores. For whatever reason, those came with a vengeance. The first time I got them, they were everywhere in my mouth and on my lips. Some of them were the size of a quarter. They prescribed a specific mouthwash, but I met an oncology dermatologist who is amazing and gets things under control.

Importance of Self-Advocacy

When I was admitted to the floor, I was still in a state of shock, saying the same things over and over, and crying. The nurse practitioner who was getting me situated broke into tears. She apologized and said, “I’m so sorry. I’m being unprofessional. I have kids your age and I understand what you are going through. I must leave the room.” She came back and said, “I’m so proud of you for standing up to these doctors.”

In some ways, I was so disappointed in the medical community. What if I wasn’t educated? What if I didn’t stand up for myself? What if I didn’t have the financial means or the insurance to keep coming back? Those are the people my heart breaks for.

Leah P.

Advocate for yourself and if you don’t feel like you can, find somebody who will advocate for you.

Leah P.

Being dismissed has never been my style. I’m not confrontational, but once I’m passionate about something, I will stand up for what I believe in.

I knew I deserved better care than what I was getting. I knew there was something wrong and we were going to get to the bottom of it.

It’s very easy to put your head in the sand because you don’t want to hear the real story and get the diagnosis. You have to advocate for yourself and if you don’t feel like you can, find somebody who will advocate for you.

Importance of Getting a Second Opinion

My husband was diagnosed with prostate cancer 18 months before I was diagnosed. That cancer has been taking men in his family for years. Todd’s been cancer-free for 6 years now and he’s great. We knew the importance of seeking a second opinion when he was diagnosed. A second opinion is not a luxury. It’s not a maybe. We didn’t even have a conversation; we knew that was what we needed to do.

As soon as I was diagnosed, my husband was emailing and calling people he knew in the medical field. He doesn’t work in the medical field, but he was asking, “Where do we need to go? What is the best place? We don’t care if it’s international; tell us and we’re going.” That’s how we ended up at Vanderbilt-Ingram Cancer Institute.

Leah P.

I could sit here and dwell on the fact that more than likely, this will end my life earlier than it should or I can choose to live my best life one day at a time.

Leah P.

I’m not going to be in remission. I will never be cured. If you look at lung cancer statistics, 5% of people are still living in 5 years. From day one, I said I will be one of the 5%. Somebody has got to be one of them. Those statistics are so outdated and so skewed. There’s a whole new population of younger lung cancer patients who are being diagnosed under age 50 with genetically-driven mutations and have never smoked.

This puts us in a totally different ballgame than people who are at an average age of 65 with a history of smoking. That’s not to say that I’m any better or my lung cancer is more important. It’s just different. It’s like comparing BRCA breast cancer with HER2 breast cancer. They’re two different types of cancer and we must treat them differently.

Saying I’m not a smoker is not to isolate or make someone feel guilty for the choices they made. No one deserves cancer. I don’t care if they’ve smoked a thousand cigarettes. No one deserves this, but it does put us in a different position for treatment. Everyone should get a second opinion on something this important.

Living a Day at a Time

This is a cruddy hand to be dealt. I could sit here and dwell on the fact that more than likely, this will end my life earlier than it should or I can choose to live my best life one day at a time. That has always been my motto. Every day can be your best day. Some days are better than others, but enjoy the simple things, whether it’s getting to watch your child play a sport or simply having 45 minutes to yourself to read a book.

If I’m going to go through this, I want to be able to help the people behind me. A good friend and I were talking about this and we agreed that it’s always good to have someone ahead of you that you can look to for what’s coming down the road. It’s always good to have someone walking the path next to you who understands what you’re going through. It’s always good to have somebody behind you who you can help lead.

Leah P.

It’s not a matter of if I progress; it’s a matter of when… I’m still getting a response, so I’m technically on borrowed time.

Leah P.

Current Status

Since I started treatment, I’ve had four thoracenteses done to drain fluid. I’ve had numerous PET scans and CTs of my chest and abdomen, which I do every 3 months. I also switched my primary care to Vanderbilt University because it’s a comprehensive care center.

I have remained stable with no progression in my lungs at any of the sites where I had metastases. I take Tagrisso every day and I’m staying on that protocol until I progress. It’s not a matter of if I progress; it’s a matter of when. The average patient can take Tagrisso for 2-3 years with a response. I have been on it for 4 ½ years and I’m still getting a response, so I’m technically on borrowed time.

There’s no official next step. They would redo biomarker testing to make sure I did not develop any other mutations or it hasn’t changed to small cell lung cancer. At that point, we would discuss our next options. Do we radiate depending on how many spots I progress in? Do we add IV infusion chemotherapy to the oral targeted therapy? Do we add another targeted therapy? What we would do is unclear because lung cancer is ever-changing.

Words of Advice

Statistics are not always right and just because it statistically says something does not mean that you’re going to be that statistic.

I firmly believe in alternative modalities to help with the emotional, mental, and physical side effects. I see a Reiki therapist every eight weeks. I get a therapeutic massage every other month. I listen to sound bowls. Maybe they’re working, maybe they’re not. If it’s not going to interfere with your treatment and makes you feel better and live a better life, then it’s worth trying.

Second opinions are priceless. I’m trying to honor each day as a new day and a new gift. No one is guaranteed to live forever. For some of us, it’s going to be sooner than others. We need to remember that, enjoy the small things, and try not to sweat the little things.

Leah P.

Life is not over when they tell you that you have a terminal diagnosis. It’s just the beginning.

Leah P.

We taught our kids that there’s a difference between a small problem and a big problem. A small problem is when they forgot to put ketchup on your burger. A big problem is cancer. A small problem is being disappointed that you didn’t get an A on a test and you got a B; a big problem is cancer.

There are a lot of life lessons that come along with a cancer diagnosis. As many bad things come with this, there are some very good things. You find out there are some good people out there. You make new friends. You become an inspiration to people. Life is not over when they tell you that you have a terminal diagnosis. It’s just the beginning.


Leah P.
Thank you for sharing your story, Leah!

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More Lung Cancer Stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)

Tiffany J., Non-Small Cell Adenocarcinoma



1st Symptoms: Pain in right side, breathlessness
Treatment: Clinical trial of Tagrisso and Cyramza
Shyreece P.

Shyreece Pompey, Non-Small Cell, ALK+, Stage 4 - Update



Symptoms: Shortness of breath
Treatment: Chemotherapy (carboplatin, pemetrexed & bevacizumab), targeted therapy (crizotinib & alectinib), AT13387 (HSP90 inhibitor)
Leah P.

Leah P., Non-Small Cell, EGFR 19Del, Stage 4



Symptoms: Persistent dry cough, shortness of breath, heaviness in the chest, coughing up blood, weight loss, right rib pain, right shoulder pain
Treatment: Targeted therapy (Tagrisso), Xgeva (denosumab), radiation (SBRT)

Categories
AC-T Breast Cancer Chemotherapy Hormone Therapies Lupron (leuprorelin) Mastectomy Patient Stories Radiation Therapy Surgery tamoxifen Treatments

Kelsey’s Stage 2B ER+ Breast Cancer Story

Kelsey’s Stage 2B ER+ Breast Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Kelsey H. feature profile

At 27, Kelsey was diagnosed with stage 2B estrogen-positive breast cancer in May 2023. When she felt a slightly tender lump, her primary care physician initially thought it was a cyst. However, an ultrasound and mammogram revealed otherwise. The diagnosis left her in shock and unable to process the information. All she could think about was her fear of dying.

Until her diagnosis, Kelsey had considered herself healthy. Cancer made her realize how precious health is. Being a mother to a toddler during treatment was challenging, but her child brought her joy and gratitude, giving her something to fight for.

Kelsey’s treatment began with AC-T chemotherapy (Adriamycin, cyclophosphamide, and Taxol) to target the fast-growing tumor. However, an allergic reaction to Taxol caused anaphylactic shock, leading to a switch to Abraxane. This experience underscored the importance of self-advocacy. Despite severe fatigue and nausea, she learned to accept her limitations rather than push herself.

A month after finishing chemotherapy, Kelsey underwent a double mastectomy with axillary lymph node removal on the left side and immediate reconstruction. Recovery was challenging, with constant nerve pain and cording, taking almost six months for her to raise her arm above her head. Nearly two months after surgery, she began 16 radiation sessions on the left side.

Currently, Kelsey is on tamoxifen, a selective estrogen receptor modulator (SERM), and will take the CDK inhibitor Verzenio (abemaciclib) for two years. She also receives Lupron shots to protect her ovaries from chemotherapy, as she couldn’t undergo fertility preservation.

Kelsey emphasizes the importance of self-advocacy, prioritizing medical concerns, and being more aware of one’s body. She hopes to inspire others and live a life of greater appreciation and gratitude, having gained a unique perspective from her cancer journey.


  • Name: Kelsey H.
  • Diagnosis:
    • Breast Cancer
    • ER+
  • Staging:
    • 2B
  • Initial Symptom:
    • Slightly tender lump
  • Treatment:
    • Chemotherapy: Adriamycin, cyclophosphamide, Taxol switched to Abraxane
    • Surgery: double mastectomy with axillary lymph node chain removal
    • Radiation
    • Selective estrogen receptor modulator (SERM): tamoxifen
    • CDK inhibitor: Verzenio
    • GnRH agonist: Lupron
Kelsey H.
Kelsey H.
Kelsey H.
Kelsey H.
Kelsey H.
Kelsey H.
Kelsey H.

Kelsey H. feature profile
Thank you for sharing your story, Kelsey!

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More Breast Cancer Stories

Amelia

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



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump found during self breast exam
Treatment: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen

Rachel Y., IDC, Stage 1B



Cancer details: IDC is most common kind of breast cancer. Stage 1B.
1st Symptoms: None, caught by delayed mammogram
Treatment: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Rach smiling against fall leaves

Rach D., IDC, Stage 2, Triple Positive



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump in right breast
Treatment: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin

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



Cancer Details: ER/PR positive = estrogen and progesterone receptor positive
1st Symptoms:
Lump found on breast
Treatment:
Lumpectomy, AC/T chemotherapy, radiation, and hormone therapy (Lupron and Anastrozole)

Joy R., IDC, Stage 2, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Lump in breast
Treatment: Chemo, double mastectomy, hysterectomy

Callie M., IDC, Stage 2B, Grade 2, ER+



Cancer Details: ER positive = estrogen receptor positive
1st Symptoms:
Dimpling/lump found on breast
Treatment:
Mastectomy, AC/T chemotherapy, hysterectomy, reconstruction
Monica

Monica H., IDC, Stage 2B & Undifferentiated Pleomorphic Sarcoma



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Tightness and lump in left breast
Treatment: Chemotherapy, radiation, surgery

Stefanie H., IDC, Stage 3, Triple Positive



Cancer details: IDC is most common kind of breast cancer. Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in breast
Treatment: chemotherapy, lumpectomy, radiation
Doreen

Doreen D., IDC, Stage 2A, Triple Positive



Cancer details: IDC is most common kind of breast cancer. Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in left breast
Treatment: Neoadjuvant chemotherapy (TCHP), lumpectomy, radiation
Melissa sitting in her car

Melissa H., Stage 2B, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Lump in left breast
Treatment: Mastectomy, chemotherapy, 2nd mastectomy
Genoa

Genoa M., IDC, Stage 3, HER2+



Cancer details: HER2-positive tends to be more aggressive than HER2-negative cases
1st Symptoms: Nausea
Treatment: Chemotherapy, radiation

Andrea A., IDC, Stage 2B/3, ER+



Cancer details: Found cancer while pregnant
1st Symptoms: Divot in breast
Treatment: Chemotherapy, radiation, surgery

Stephanie J., Stage 3, Triple Negative, BRCA1+



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer
1st Symptoms: Lump in left breast
Treatment: Chemotherapy, surgery

Renee N., IDC, Stage 3-4, HER2+



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump in breast
Treatment: chemotherapy, bilateral mastectomy, radiation

Shari S., Stage 4, Metastatic, Triple Positive



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in breast
Treatment: Surgery, chemotherapy, radiation
Erin

Erin C., IDC, Stage 2B/4, Metastatic, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Pain in breast
Treatment: Surgery, chemotherapy, radiation
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast, left nipple inverting
Treatment: Double mastectomy, chemo (AC-T), Radiation

Abigail J., Stage 4, Metastatic



Cancer Details: HER2-low, node negative, PIK3CA mutation



1st Symptoms: Back and leg pain, lump in breast



Treatment: Surgery, chemotherapy, radiation, CDK4/6 inhibitors
Bethany W. feature profile

Bethany W., Stage 2, ER+



Symptoms: Lump in breast and armpit
Treatment: Chemotherapy, double mastectomy, radiation
Bethany W. feature profile

Bethany W., Stage 4 Metastatic



Symptoms: Lower back pain
Treatment: Chemotherapy, radiation, maintenance treatment
Lainie J.

Lainie J., IDC, Stage 2, HER2+



Symptoms: Lump in breast
Treatment: Chemotherapy, double mastectomy, radiation
Cynthia is the founder of Learn Look Locate, a breast cancer community
Cynthia J., IDC, Stage 2B Diagnosis: Stage 2B Breast Cancer Symptoms: Architectural distortion on mammogram Treatment: Double mastectomy, radiation
Nikki M., Stage 3 HER2+ Inflammatory Diagnosis: Stage 3 Inflammatory Breast Cancer Symptoms: Centralized pain around the nipple, inverted nipple, swollen breast, differences in nipple color, warm-feeling breast Treatment: Chemotherapy, single mastectomy, radiotherapy

Categories
Chemotherapy Gasterectomy Immunotherapy oophorectomy Patient Stories Stomach Cancer Surgery Treatments

Alyssa’s Stage 4 Gastric Cancer Story

Alyssa’s Stage 4 Gastric Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Alyssa B. feature profile

Alyssa was diagnosed with stage 4 stomach cancer after 2 ½ years of multiple doctor visits and normal test results. She initially experienced extreme fatigue and elevated resting heart rate. Subsequent symptoms like heartburn, weight loss, and difficulty swallowing prompted further medical consultations and tests, eventually leading to a GI specialist who performed an endoscopy and colonoscopy, where a biopsy revealed gastric cancer.

Upon diagnosis, Alyssa was shocked but sought a treatment plan. She was referred to a cancer specialist and a treatment center that acted promptly. She joined a support group, on which she relies heavily.

Her treatment involved chemotherapy and surgery, including a gastrectomy and oophorectomy. However, a laparoscopy revealed cancer spread to the peritoneum, changing the course of treatment to ongoing chemotherapy. She eventually joined a clinical trial that offered targeted chemo and surgery, but post-op results showed aggressive cancer with limited success from previous treatments.

Alyssa now waits for further scans and relies on a strong support system, faith, and therapy to cope. She emphasizes the importance of self-advocacy in healthcare, urging others to persist in seeking answers and appropriate care.


  • Name: Alyssa B.
  • Diagnosis:
    • Stomach (Gastric) Cancer
  • Staging:
    • 4
  • Initial Symptoms:
    • Fatigue
    • Elevated resting heart rate
    • Heartburn
    • Difficulty swallowing
    • Weight loss
  • Treatment:
    • Chemotherapy
    • Surgery: gastrectomy & oophorectomy
Alyssa B. timeline


It was not like me to have low energy, especially at my age and with my health history.

Introduction

I’m from Houston, Texas, and I was diagnosed with stage 4 stomach cancer in 2023.

Pre-diagnosis

Initial Symptoms

The first symptom I experienced was extreme fatigue. I was tired all the time. I didn’t have the energy to have a social life anymore. It was work, home, sleep, repeat, and that was not like me at all. I thought maybe there was something wrong. My family has a history of thyroid issues, so I wanted to have that checked out.

Alyssa B.
Alyssa B.

When I first saw my doctor, she agreed that it was not like me to have low energy, especially at my age and with my health history, so we ran some blood work to see if it was my thyroid or if we would uncover anything else.

Unfortunately, everything came back normal, so we didn’t get answers to what was causing the fatigue. She said maybe it was stress or I was exhausted from work. She wanted to do blood work every couple of months and keep checking in to see how my energy levels were.

A couple of months later, I started getting notifications on my smartwatch letting me know that my resting heart rate was over 100 bpm, which would happen when I was sitting down and relaxed. I thought it was a glitch, but after a few times of that happening, I thought it was something I needed to take back to the doctor to see what was going on. They did a quick EKG, which came back fine, but she didn’t want me to continue experiencing elevated resting heart rates, so she put me on a beta blocker. We redid the blood work and everything came back normal again.

A couple of months later, I experienced heartburn. I’ve never had heartburn, so I thought, “What is this burning sensation? Why is it so uncomfortable?” From the moment I got it, it happened every time I ate, no matter what I ate.

I went back to the same clinic but saw a different doctor because she had availability sooner. She told me, “It’s probably your age. You’re getting older, so maybe you can’t handle acidic foods anymore.” I told her I’ve never had it before and it’s happening constantly, regardless of what I eat. She said, “Let’s start this new medication and try to cut back on acidic foods.” I started the medication, but it didn’t do anything.

I was frustrated because I was taking more and more medications, but I wasn’t getting answers as to what was causing all of these symptoms.

I told her I wanted to figure out what was going on with my heart because I was taking medication, but we didn’t have answers. She said, “We can do a test, but it’s probably not going to come back with good results because you’ve been on the beta blocker for a couple of months.” I wanted to go ahead with the test to see and then we could go from there.

Sure enough, the results came back normal heart and she said, “It’s probably because it’s regulated by the beta blocker.” I was frustrated because I was taking more and more medications, but I wasn’t getting answers as to what was causing all of these symptoms. I’ve never had health issues before.

I told her I wanted to start over. I said, “I want to wean off of this medication. I don’t want to take this medication for heartburn anymore. Let’s do testing first, figure out what’s going on, and then we can go to medication if that’s what’s needed.”

Over the next couple of months, I slowly weaned off the pill that slowed down my heart rate because I didn’t want to have any adverse effects and within two months, I lost a lot of weight. I lost 15 lbs. I’m a very short person, so 15 lbs is a lot for my frame. Everyone noticed.

Alyssa B.
Alyssa B.

Then I started having difficulty swallowing. I would eat something and it felt like the food would get stuck halfway and I couldn’t breathe. When I would try to drink something, it would feel like I was drowning. I thought it was a one-off situation, but when it happened again, I said I wasn’t going to wait for a third time.

I booked the first appointment available. Again, my primary care doctor wasn’t available, but the other doctor at the clinic was and she told me, “We know that everything’s been normal. I don’t see any issues.” I told her I wanted to redo my blood work, but she was hesitant.

She started going through my chart, saw my weight loss, and said, “Oh, wow, you did lose a lot of weight in a short period. I don’t like what you’re saying about the difficulty swallowing, so let’s get you to a specialist.” I redid my blood work that day.

I was already two and a half years into this, spending all this money, but still had no answers.

Meeting with a GI Specialist

Two months later, I met with a GI doctor and she was concerned with the symptoms I was experiencing. She said, “I want to redo blood work. I also want to do a stool sample, an endoscopy, a CT scan, and possibly a colonoscopy.” I did all of that and the blood work came out great. The CT scan looked great as well. The only things left were the endoscopy and colonoscopy and they were going to be done on the same day.

By that point, four months had already passed doing these tests. I was already two and a half years into this, spending all this money, but still had no answers. Is it even worth it to do these last tests? If I get no answers, I’m still stuck in the same place. My spouse told me to stick with it. We needed to see if this could give us the answers that we’ve been looking for.

Alyssa B.
Alyssa B.
Biopsy

When I woke up from the procedure, the person who performed it told me, “We found one polyp in your colon. We removed it and it doesn’t look concerning, but you had a lot of inflammation in an area that we don’t typically see. It’s where your esophagus meets your stomach and the inflammation is pretty bad. I’m going to take a biopsy and send it off.” I asked, “Is that why I’ve been having difficulty swallowing?” He said it’s definitely why. I asked, “Will that also explain why I lost so much weight within a short period?” He said it could be.

Then he took a deep breath and said, “Does cancer run in your family?” I wondered where this was coming from. I had just woken up from the procedures, so I was trying to think and remembered two distant relatives but nothing stomach-related. He said, “Okay. Well, like I said, we’re going to send it off. I’ll call you back with the results in a couple of days.”

I had a million questions, but I didn’t even know where to begin.

Diagnosis

Getting the Official Diagnosis of Stage 4 Stomach Cancer

He called me back five days later and said, “Hey, it’s me. I performed your procedure,” so I called my spouse to hurry and come over. He was beside me right in time to hear that I had gastric cancer.

Reaction to the Diagnosis

We were both in complete shock. We didn’t react and were just staring at each other. It was like we weren’t in that conversation anymore.

Alyssa B.
Alyssa B.

I didn’t hear anything else said. I finally came back to what was going on when the person on the phone asked, “Do you have any questions?” I had a million questions, but I didn’t even know where to begin. The only thing I could think to ask was, “What’s next? Where do we go from here?”

He said, “Pretty hopeful that we caught this early. I know you’re scared, but you’re young and healthy. We’re going to take care of this and you’ll be okay. We’re going to do another scan higher up because we weren’t expecting to see that inflammation so high up. From there, we will get you with the oncology team and they will go from there.”

In addition, he told me that I had the bacteria H. pylori, which caused my gastric cancer. It looks like I got it when I was a child and because I never had symptoms, it went untreated and turned into gastric cancer. He said, “We need to clear that up first. You need to do the scan and then you can start treatment.”

After that, it was a little frustrating because I had another scan and the doctor said the scan looked good. He was going to call in my prescription and I said, “When do I talk with the oncology team?” He said they should be calling me but gave me the number. After that weekend, I went ahead and called them.

I found Stomach Cancer Sisters and it was specifically for women who have had or have stomach cancer. I joined and was immediately welcomed.

Referred to an Oncologist

They told me that they weren’t taking new oncology patients and I could be referred out, which turned out to be a blessing in disguise because the cancer specialist and the treatment center I was referred to was a complete 180. They moved with a sense of urgency. They said, “We book your appointments. We don’t call to confirm if it’s okay with you. If it’s not okay, call us back and let us know.”

Immediately, they made me an appointment with an oncologist and a surgical oncologist. They scheduled my blood work and scans. They were going to redo everything, which I knew was going to happen because it was a new provider.

Alyssa B.
Alyssa B.

Finding Online Support Groups

Before I got to those first appointments, I was searching for support. I knew I had cancer, but I didn’t know how to feel and I didn’t want to get lost in the emotions. I wanted to try to connect, especially since one of my friends told me her mom benefited from support groups.

I found some support groups, but I wasn’t getting what I needed. There were so many members and so many people talking about so many different types of cancers that it felt so overwhelming.

I found Stomach Cancer Sisters and it was specifically for women who have had or have stomach cancer. I joined and was immediately welcomed. I was asked about what type of stomach cancer I had and I had no idea. Someone asked if I could share my reports with her and so I did, and she told me we had the same type of cancer. She told me what was going to happen, including having to remove the entire stomach. Nobody’s told me this, but that empowered me so much that I felt ready to go to my appointments.

‘I have to do a laparoscopy. The type of cancer that you have doesn’t show up well on scans.’

Treatment

Meeting with the Surgical Oncologist

I met with my surgical oncologist first and he went through the plan. “We are going to do scans and blood work. We’re going to do another endoscopy. During the first one, they were looking around but now that we know you have cancer, we’re going to do it with an ultrasound as well.”

“We need to go ahead and implant your chemo port because you’re going to need to start chemo as soon as possible. We’ll have to do four rounds of chemo, then surgery to remove your entire stomach, and then four more rounds of chemo.”

“Before we can start that, I have to do a laparoscopy. The type of cancer that you have doesn’t show up well on scans, so we have to cut little holes in you, go in with cameras, look around, and look for signs of spread. We don’t want to see it spread to the peritoneum, which is very common. There’s no cure for it. At that point, you would be stage 4 and surgery would not be an option.”

There was a lot of information and a lot of steps, but I felt calm and confident because we had a plan in place.

Alyssa B.
Alyssa B.
Laparoscopy Results

I got a call from my surgical oncologist and he said, “Unfortunately, during the laparoscopy, I took some biopsies and they came back as cancerous. It has spread to your peritoneum. It’s stage 4 stomach cancer and, at this point, surgery is off the table.” That rocked my world because I knew that removing the stomach was the only cure for this type of cancer.

He said, “We’re going to pivot you back to your oncologist and you will work with her. You will do chemo and that’s it.” I asked him how I could get surgery back on the table. He said, “It’s not common for us to do that with stage 4 patients, but, in four months, we will check in with you. We could do a procedure called HIPEC (hyperthermic intraperitoneal chemotherapy) where we apply chemo directly to your stomach. But at that point, I want you to do four more months of chemo, so it depends on your progress. We will check in.”

I had two scans where one scan picked up a cyst on one of my ovaries.

Chemotherapy

My oncologist confirmed that I will have to do chemo essentially for the rest of my life to prolong my life. I said, “I understand that is your goal. However, my goal is to get surgery back on the table and I want you to know that’s important to me. I’m willing to do whatever you need me to do to get to that point. If there are any trials available, I would love to do that. I need to know how.”

At that point, there weren’t any trials available. I started chemo and did four months. During that time, I had two scans where one scan picked up a cyst on one of my ovaries. There weren’t any big notes on it, so we didn’t talk about it.

Alyssa B.
Alyssa B.
Joining a Clinical Trial

In October, my oncologist told me that there was a new trial available specific to the type of cancer I had (stage 4 stomach cancer) and the spread I had. She said, “With this, you would receive chemo directly to your peritoneum and have surgery to remove your stomach. They’re hoping to find a cure for the spread that you have.” It’s exactly what I wanted and needed so I asked her to sign me up. She said, “Okay. We have to do another scan to make sure there are no signs of spreading anywhere else because that would disqualify you.”

The scan showed that the cyst on my ovary got larger and she said, “Now we’re concerned. We need to make sure that that’s not cancerous. We need to do an ultrasound.” We did the ultrasound and after that, I met with my surgical oncologist.

During that appointment, he told me that the ultrasound came back as non-definitive, so they weren’t able to tell if it was cancerous or not, but I was okay to go forward with the trial.

I had a procedure to place the port in my abdomen and a few weeks after, I began the chemo to my peritoneum. I received three rounds of chemo. Everything was good. Then we started preparing for surgery.

They removed my stomach and attached my intestines to my esophagus.

Gastrectomy & Oophorectomy

I had a break and during that break, we did more blood work. We did the pre-ops. We did one final CT scan six days before the procedure. But also during that time, I had to meet with another surgeon who was supposed to remove my ovaries.

She told me, “Do you know that this is going to put you into menopause? Do you know that you will not be able to have kids anymore? You’re very young to be going through menopause.” I told her, “I completely understand. This is not a decision that we are making lightly. We know how big this is going to impact us and we want to continue having children, so it’s not an easy decision.”

She was upset with my decision. She wasn’t in agreement. We knew my type of cancer has a tendency to spread to the ovaries and they’re not able to tell us for sure if it’s cancerous or not. My surgical oncologist also feels like this is the best plan. He looked at my ovaries when he did the laparoscopy and said they didn’t look completely normal.

Alyssa B.
Alyssa B.

The day before surgery, I met with her again and she told me, “What are we doing?” I said, “We’re removing the ovaries.” I went in to have my surgery, which was a 7- to 8-hour procedure. They removed my stomach and attached my intestines to my esophagus. They also removed my ovaries.

I was supposed to be in the hospital for a week, but I was very determined to not have any complications. I knew the surgery had a tendency to have complications and it’s not 100% in my control, but I wanted to do everything that they wanted me to do to help with that.

They wanted me to walk around, so I walked around. They wanted to make sure that I was sitting up most of the day, so I sat up and hardly laid down. I ate the protein that they asked me to eat. I did everything that they asked me to do. Because of that and the way everything was looking, I was able to leave the hospital in four days versus a week.

‘The cancer is being very aggressive… we’re looking at distant spread. We didn’t get the results that we wanted.’

Post-Op Follow-up

I had a follow-up one week later with my surgical oncologist. He went over the pathology and that was a shocker for us because we had hopes that the trial was going to get me to no evidence of disease. Unfortunately, he wasn’t able to get clear margins. The cancer had gone further up my esophagus than it had before. He went as high as he could, that was safe to do so, but it was very high.

He also shared that the tumor had taken up half of my stomach and it wasn’t like that before. He removed 53 lymph nodes and 27 came back as cancerous. He said, “What this means is that the cancer is being very aggressive. It also signals distant metastasis, so we’re looking at distant spread. We didn’t get the results that we wanted to get. Even with the chemo that you did before the trial, it looks like you had a zero response to it.”

Alyssa B.
Alyssa B.

I was shocked. I didn’t know what to think and how to feel. He told me, “We still have you on the schedule to have three more rounds of chemo to your peritoneum, but I’m concerned with the results of the pathology. I don’t know if we can wait until you finish that to put you back on systemic chemo or if we need to jump right into systemic chemo to address anything in your body versus focusing on the peritoneum.”

We brought back in my oncologist and she shared that it’d be best to go ahead and finish the trial. After that, maybe we should move to observation.

That brings me to the present. I’m waiting it out. I have another scan to review what’s going on and if there’s anything else concerning anywhere.

My faith is very important to me. When I’m struggling, I put on my worship music, pray, and ask for guidance.

Having a Support System

I have a great support system. I have great family and friends who check in on me and make sure that I’m okay. I rely heavily on the support group. I bounce ideas off of them. They told me about the Signatera™ test that I wouldn’t have known about if it hadn’t been for that group.

My faith is very important to me. When I’m struggling, I put on my worship music, pray, and ask for guidance because some days are harder than others.

I also undergo therapy. Therapy is so important. I always felt like I was dealing with most of this relatively well, but I didn’t want to have too much confidence in myself, so I wanted to have someone I could talk to to make sure that I was dealing with everything okay.

For the most part, I feel okay, but there are times when things rock me and I want to make sure that I’m coping healthily. I don’t want to brush it off and think I’m being strong when I’m hurting myself more.

Alyssa B.
Alyssa B.

Importance of Self-Advocacy

Focus on your why. Why do you want answers? Why is it important? For me, it’s my family. I want to be here for my family. I have a son and want to be there for him and see him grow up. I want to be the cool, tatted grandma and witness my child grow up and be a husband and a father. I want to see all his big life moments and be there to support him. I want to spend the rest of my life with my spouse. We have so much more time and so many more memories to make.

Advocating for yourself is the most important thing when it comes to your health.

Feeling Different

My body is so exhausted. It’s not the body that I used to have. I always joke with my spouse and say I’m an old woman now because I get fatigued so easily. After doing one task, I feel like I did a whole day’s worth of running errands.

I have a lot of things that are going against my energy. Without a stomach, I’m not able to absorb B12, so I have to do B12 injections once a month, but those wear off. I’m not getting the maximum absorption of iron, so I’m anemic and struggling to absorb iron. That’s also making me exhausted. With my ovaries gone, I’m going through menopause and my hormones are going crazy.

Because of the after-effects of chemotherapy and immunotherapy, my body is tired and I can feel that. It’s a bit frustrating because I’m a very independent person and I like to take care of things.

Alyssa B.
Alyssa B.

Words of Advice

Self-advocacy is so vital. You have to make sure that you’re advocating for yourself at each appointment. You know your body. Unfortunately, doctors get a lot of patients and they’re very busy. It’s not all on them. Sometimes, we have to reiterate, “This symptom is concerning because of this. This is what I need from you.” We forget that we have that power.

We go into the doctor’s office wanting them to give us answers, but they don’t have all the information and that’s not their fault. Sometimes, we don’t have all the information but make sure that we are pushing for more.

If they can’t do something for you, then get a second opinion or ask them to put you in touch with someone who can do that for you. Advocating for yourself is the most important thing when it comes to your health to make sure that you are getting the right treatment that’s specific to you and your needs.


Alyssa B. feature profile
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More Stomach Cancer Stories


Lauren C., Stomach Cancer, Stage 1, CDH1 Mutation



Cancer details: CDH1 mutation led to “hereditary diffuse gastric cancer” (HDGC)
HDCG cancer risks: 
“Frequently, HDGC-related cancers develop in individuals before the age of 50” (NIH)
Treatments: 
Total gastrectomy (surgery to remove whole stomach)
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Viola K., Stomach Cancer, Stage 4



Symptoms: Persistent fatigue, Weight loss, Occasional pain, Persistent weakness
Treatment: Chemotherapy (FLOT), HIPEC (Surgery + Hot Chemotherapy), 2nd intestinal surgery

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Alyssa B. feature profile

Alyssa B., Stomach Cancer, Stage 4



Symptoms: Fatigue, elevated resting heart rate, heartburn, difficulty swallowing, weight loss
Treatment: Chemotherapy, surgery (gastrectomy & oophorectomy)
...

Categories
Breast Cancer Chemotherapy Cold Caps Combination Types Cytoxan (cyclophosphamide) Mastectomy Patient Stories Surgery Taxotere (docetaxel) Treatments

LaShae’s Stage 2B Multicentric ER+ IDC & DCIS Breast Cancer Story

LaShae’s Stage 2B Multicentric ER+ IDC & DCIS Breast Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

LaShae R.

LaShae, a PhD student in cancer prevention research, shares her journey with breast cancer. She initially dismissed a small, movable lump she found in her breast due to her busy schedule, but when the lump grew and she felt pain, she sought medical attention.

Her doctor referred her for a breast ultrasound and mammogram, revealing multiple masses and widespread calcifications. A biopsy confirmed cancer with a high likelihood of malignancy and a breast MRI revealed the spread in her breast and lymph nodes.

She had a mastectomy on her 27th birthday. Currently undergoing chemotherapy, she continues her fitness routine despite the side effects. Her experience has deepened her commitment to cancer research, particularly for adolescents and young adults (AYAs), highlighting the importance of self-advocacy and support groups.


  • Name: LaShae R.
  • Diagnosis:
    • Breast Cancer
    • Invasive ductal carcinoma (IDC)
    • Ductal carcinoma in situ (DCIS)
    • ER+
  • Staging:
    • 2B
  • Initial Symptom:
    • Lump in breast
  • Treatment:
    • Chemotherapy: TC (Taxotere and cyclophosphamide)
    • Proton radiation (scheduled one month after chemo ends)
LaShae R.
LaShae R. timeline


I found a small lump about a centimeter in size… I thought I had nothing to worry about.

Introduction

I live in Miami, Florida, but I was born and raised in Nassau, Bahamas, so I am a Caribbean girl.

I’m currently doing my PhD in cancer prevention research.

LaShae R.
LaShae R.

Pre-diagnosis

Initial Symptoms

I found a small lump about a centimeter in size. I didn’t think much of it. I did some research and found out that if the lump was movable, it had a lower likelihood of being cancerous. At that time, mine was movable so I thought I had nothing to worry about.

I hadn’t been doing much cancer research yet. I was looking at obesity research and now I’m at a parallel where we’re looking at exercise and diet and how they can impact cancer outcomes. I was still a baby when it came to cancer research, so that’s a big reason I pushed it to the side.

When my PhD started, a lot was thrown at me at once. Anyone who has done any graduate degree knows. I wanted to be the best student that I could be and the best person I could be for the new lab that I was in, so I prioritized those.

Sadly, like a lot of us, health was put on the back burner, so I forgot about the lump. I’m also a powerlifter. I bench press close to 300 lbs, so if I feel any tension or pain in my chest area, I attribute it to that.

In late 2023, I felt a lump again and wondered if it was the same lump. To this day, I don’t know if it was, but it grew in size so I thought that something was wrong.

I felt pain and that was what alerted me. I scheduled a wellness exam, but I had to keep postponing it because I had a lot of things coming up for my degree. I finally got in to do it in early January 2024 at the student center.

She said they were only going to schedule the ultrasound because I didn’t need a mammogram. I was too young.

Breast Exam

The doctor did a pap smear, vitals, and all the basic things done at a wellness exam, but she didn’t perform a breast exam. When she was about to leave, she asked, “Is there anything pressing that you want to discuss or want me to do for you?” I mentioned the lump and she immediately took it seriously. She put on gloves and performed a breast exam.

She wasn’t sure what it was, but she put “Mass?” on the paper and said, “I’m going to go ahead and be extra cautious. I’m giving you a referral to get an ultrasound and a mammogram.” She gave me instructions on the things that I needed to do and told me where to call, which was very helpful. To this day, that visit and that doctor were a part of the team that saved my life.

LaShae R.
LaShae R.
Breast Ultrasound

I called to schedule my ultrasound and mammogram. The person on the phone said I was young to be scheduling a mammogram and ultrasound. She asked if I had any symptoms. When I listed them off, I mentioned that I had a palpable mass and pain. She said they were only going to schedule the ultrasound because I didn’t need a mammogram. I was too young.

I’m very persistent and cautious. At this point, I was taking this seriously. You might think that I’m wasting your time because I’m too young and you probably think I can’t get cancer, but I’m going to waste your time.

When I went in for my ultrasound, I was filling out a form and it asked if I was of Bahamian descent. Women from the Bahamas have a higher likelihood of getting breast cancer and having more aggressive cancers due to the BRCA mutation, among other mutations.

They said it would probably going to take about 15 minutes. When the tech started the ultrasound, the moment she put the wand on, her eyes became wide and the same with the person assisting her. I knew that there was something there because it was palpable, but what was going on?

The radiologist came in and said, ‘You have multiple calcifications throughout all four quadrants of your breast.’

Every time they see something, they would take a picture and measure it. They did about 10 of those. Then they asked, “How long have you had these masses?” I replied, “Masses? Plural? As far as I know, I just have one lump.”

Before the ultrasound ended, they brought in someone to do the 360° view because they said they hadn’t done that. As someone who knows about cancer and who’s pursuing cancer research, I knew it meant that it’s spread all over the place. It’s in four quadrants.

When they went over to the left, there was nothing there. It was quick. Then they came back to the right and got another person to come in and help. What was supposed to take 15 minutes is taking 45 minutes now.

I started to gather my stuff to leave and they said, “No, no, no! You can’t leave. We’re about to do a mammogram now. You need to do a mammogram.”

LaShae R.
LaShae R.
Mammogram

I immediately got pushed to the top of the line and had a mammogram that same day. When I was done, I started gathering my things again and they said, “No! You can’t leave. The radiologist is going to talk to you right now. They’re going to talk to you today before you leave.”

They took me to a quiet room. The radiologist came in and said, “You have multiple calcifications throughout all four quadrants of your breast.”

I couldn’t believe what I heard. I started to get dizzy. I power lift daily. A couple of weeks prior, I bench-pressed 292 lbs, squatted 440 lbs, and deadlift almost 500 lbs that I had to get drug tested.

They start looking at you with that look of pity. After that, I asked what the next step was and they said I needed to do a biopsy.

When I found out the results, I felt a little better than having all of that anxiety trying to figure out what I had.

Biopsy Results

MyChart popped up and I saw the notes from the ultrasound and mammogram. It said fine calcifications throughout all four quadrants of the breast spanning 12.7 cm. Then it said it was in my lymph nodes and that I was BI-RADS 5. I looked it up and it meant at least a 95% chance of having cancer. I’m waiting for the biopsy results and now I’m stressed out.

Diagnosis

Getting the Results

Three days later, I got a call. They said, “Hi, I’m calling about your results,” and asked if I had a place to sit. Every time, they give you hints. I said, “Let me try to find a place,” and then they said, “We can call you back if you like.” I’m like, “No, no, no, no, no, don’t call me back. You already just made my brain explode. What’s going on?” Then the doctor lets me know that she doesn’t have good results. It was malignant.

LaShae R.
LaShae R.
Reaction to my Stage 2 Breast Cancer Diagnosis

When I found out the results, I felt a little better than having all of that anxiety trying to figure out what I had. Hearing that was a relief. After I got the phone call, the surgeon’s office called and I made an appointment.

Breast MRI

The breast MRI was very uncomfortable. Based on the results, they let me know that it was confirmed. I do have widespread, cancerous-looking things throughout my breast and in my lymph nodes.

I had my mastectomy on my 27th birthday. At first, I was upset, but I think it’s good because I would always celebrate when they took the cancer out of my body.

Mastectomy

After the MRI, the surgeon let me know that I didn’t have that many options because it was in all four quadrants of my breast. Usually, people can do a lumpectomy or certain types of mastectomies, like skin-sparing or nipple-sparing. I had to do a simple mastectomy, so it’s a flat closure along my sternum to my underarm or axilla. I think that was better than having to make a bunch of decisions.

She also told me I would be doing a PET scan. When I got the results, it was localized to my breast and nearby lymph nodes, so that was a big relief.

LaShae R.
LaShae R.
Pre-surgery Tests

I did a chest X-ray, EKGs, blood work, blood typing and cross-matching, and other tests before surgery.

I also worked out a lot because I wanted to prepare my body for the battle. One of the things I learned is that as you go through treatment, your body goes through a lot and you can lose muscle, which is detrimental to your outcome. I kept powerlifting and retaining muscle right up to the surgery.

I had my mastectomy on my 27th birthday. At first, I was upset, but I think it’s good because I would always celebrate when they took the cancer out of my body. After the mastectomy, my surgeon came in and explained that she removed the cancer. Two lymph nodes were positive and from what I know, that’s a hit or miss. Based on the final pathology, I can either have chemo or not, but I would definitely need radiation.

When I got home, that’s when the side effects kicked in. Fatigue was number one. I immediately had to shower and then I fell asleep for 18 hours.

Treatment

TC Chemotherapy

I was passed off to the medical oncologist. I met with her after my surgery and she’s the one who’s going to be spearheading the chemo, radiation, and hormonal treatments.

She let me know from the get-go that I would need chemotherapy and that’s the standard of care. I also would need radiation and hormone treatment because my stage 2 breast cancer was ER+, so I’m going to need to be on hormone treatment for 5 to 10 years.

It was a toss-up between A-CT (Adriamycin, cyclophosphamide, Taxol) or TC (Taxotere and cyclophosphamide). I needed chemo because of the lymph node involvement and my age. The longer you live, the higher the likelihood of recurrence simply because you’re around longer.

I’m currently undergoing chemo. We decided to do TC based on the results from additional testing. We did a MammaPrint® and I was found to be at high risk for recurrence.

Chemo was what I feared the most from the beginning. I had to get to my first chemo appointment early because I was doing scalp cooling. It didn’t take that long and it wasn’t as scary as I thought. They give a lot of pre-medications. I had never taken Benadryl at that dose so I was dizzy and sleepy. It knocked me out.

LaShae R.
LaShae R.
Side Effects of Chemotherapy

Less than 24 hours after chemo, I went to the gym and power lifted because I wanted to keep doing what I do. I felt solid, but when I got home, that’s when the side effects kicked in. Fatigue was number one. I immediately had to shower and then I fell asleep for 18 hours. It was brutal.

I had GI side effects. It wasn’t good. I got a headache and my whole body felt sore. I work out a lot, so I know what soreness feels like, but it had nothing to do with my workouts. It was a general, full-body soreness that even my bones were hurting. I had to take Zoladex to preserve my ovaries so that I’m able to have children after this. A lot was going on.

The side effects lasted for about five days. Over a week after chemo, I feel great. I was able to do a workout and not crash afterward.

This has opened my eyes to a new group that I had no idea was part of a disparaged group: AYAs or adolescents and young adults.

Cancer Research

I’m in a unique situation as somebody who wants to do cancer research for their entire career and is in the middle of a PhD focused on cancer prevention. It was very surprising, but it helped me get to my diagnosis. I would not have taken this seriously or even known I had alarming signs if I didn’t have that base knowledge.

When I think about what has happened, all I think about is how I’m going to be a much better researcher. I knew I wanted to work with marginalized and disparaged communities to help those who needed help the most. I’ve always believed in doing that and helping the less fortunate.

This has opened my eyes to a new group that I had no idea was part of a disparaged group: AYAs or adolescents and young adults. I’m going to include them in anything that I do in research and want to do community work with that group because being a part of that group, I understand now that these are unique circumstances.

LaShae R.
LaShae R.

When you’re a young adult, you are just starting your life. When you go to the doctor’s office, you’re the youngest. When I went to one of my appointments, the medical assistant asked where the patient was. I was right there, but she didn’t expect me to be the patient. Sometimes I go with my mom and they think she’s the patient.

This is very emotional and very isolating. Cancer in itself is isolating, but you may also be the only one in your age bracket going through this. When you go to the doctor’s office, people feel sorry for you more because of your age.

My experience is going to make me a much better researcher. It’s going to make me more invested and make me an advocate. I used to want to be an advocate, but now I want to be a research advocate and living proof.

Cancer is very emotional from when you get the diagnosis and throughout the whole process. This is a journey. You go through different emotions. I deal with it by taking deep breaths. That helped a lot.

I joined my AYA support group. Joining support groups is vital because they are going through the same thing. They’re at different stages of the journey, so they’re able to guide you and help you get on track because you’re pulled in so many directions and it’s overwhelming.

Caribbean people tend to have more aggressive cancers when it comes to certain types and they’re diagnosed at younger ages.

Genetic Mutations

Caribbean people tend to have more aggressive cancers when it comes to certain types and they’re diagnosed at younger ages. At the Sylvester Comprehensive Cancer Center in Miami, they asked me ahead of time if I was of Bahamian descent because they’re aware of this.

We’re known to have the BRCA mutation and other mutations. I got the comprehensive panel done and it turned out negative for all. I didn’t have all the common risk factors. I’m the first person in my family to ever get breast cancer, so I could not tell you at all why I got this.

LaShae R.
LaShae R.

Words of Advice

For patients undergoing chemotherapy, come in with an open mind. You’re going to be scared, but don’t stress out because stress is not good for you. It won’t help with your outcome.

Get some ice compression for your hands and feet to prevent neuropathy, depending on the type of chemotherapy that you’re going to have to get infused. Taxotere has been linked to neuropathy, so I did that.

Try to eat bland foods when you’re going through chemotherapy. If you don’t eat, you’re going to feel terrible. I know all these things are going on, but you’ve got to eat something. Whenever I didn’t eat, I would feel terrible. I started to feel better when I did. Nutrition is so important.

Advocate for yourself because only you know your body.

When you feel good enough, go outside and take a walk. I’m not saying do what I did 24 hours after chemo, but go out and move because it’s been linked to way better outcomes.

Advocate for yourself because only you know your body. There are a lot of professionals who are trained to diagnose. I do research and I know the statistics. But if we rely solely on the numbers, I’m not supposed to have cancer. I’m not even supposed to get screened.

No matter how young you are, make sure to go to your physical exam every year. Be in touch with your doctors. Eat well and exercise to be the strongest you that you can be.

LaShae R.

LaShae R.
Thank you for sharing your story, LaShae!

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More Breast Cancer Stories

Natalie
Natalie W., DCIS, Stage 0, ER+; Paget’s Disease



Cancer Details: Only 1-4% of breast cancer cases also includes Paget’s
1st Symptoms: 2cm lump found in right breast
Treatment: Lumpectomy, double subcutaneous mastectomy, hormone therapy
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast, left nipple inverting
Treatment: Double mastectomy, chemo (AC-T), Radiation
Tina C., DCIS & LCIS, Stage 3A, ER+



Cancer details: Both ductal and lobular, estrogen receptor positive. Different than breast cancer Tina’s mom was diagnosed w/ twice.
1st Symptoms: Sunken in nipple of right breast
Treatment: Double mastectomy, chemotherapy, radiation, hormone therapy

Cat L., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast radiating from lump
Treatment: Bilateral mastectomy, chemotherapy
LaShae R.

LaShae R., IDC & DCIS, Stage 2B, ER+



Symptoms: Lump in breast, pain
Treatments: Chemotherapy (Taxotere and cyclophosphamide), proton radiation

Categories
Bowel Chemotherapy Colorectal FOLFOXIRI Hemicolectomy Immunotherapy ipilimumab (Yervoy) nivolumab (Opdivo) Patient Stories Surgery Treatments

Sophie’s Stage 4 Bowel Cancer with BRAF Mutation Story

Sophie’s Stage 4 Bowel Cancer with BRAF Mutation Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Sophie U. feature profile

Sophie was diagnosed with stage 4 bowel cancer after experiencing symptoms for almost a year. Initially thought to have Crohn’s disease, her condition was finally identified after having a colonoscopy, a CT scan, and an MRI. The diagnosis revealed multiple lesions and a significant tumor, leading to a hemicolectomy.

Post-surgery, Sophie underwent aggressive FOLFOXIRI chemotherapy due to her BRAF mutation, enduring severe side effects like neuropathy, extreme fatigue, and significant weight loss. Despite the grueling treatment, the initial response was positive but when the chemotherapy failed, her oncologist pursued a different approach with immunotherapy drugs nivolumab and ipilimumab.

The immunotherapy had manageable side effects and led to significant improvement. After two years of treatment, Sophie was declared cancer-free following a PET scan and liver surgery biopsy confirming the absence of cancerous cells.


  • Name: Sophie U.
  • Diagnosis:
    • Bowel Cancer
    • BRAF
    • MSI
  • Staging:
    • Stage 4
  • Initial Symptoms:
    • Vomiting
    • Anemia (found in blood test)
  • Treatment:
    • Surgery: hemicolectomy
    • Chemotherapy: FOLFOXIRI (folinic acid, fluorouracil, irinotecan hydrochloride, and oxaliplatin)
    • Immunotherapy: nivolumab & ipilimumab
Sophie U. timeline


I went to my doctor because I felt something wasn’t right.

Introduction

I’m from Warwickshire, England, and I was diagnosed with stage 4 bowel cancer in 2018.

I’m married with two kids and I currently work in Motorsport.

Pre-diagnosis

Initial Symptoms

It was a Monday night. I went up to bed and vomited all of a sudden. There was no reason for me to be sick. I’d eaten nothing suspicious, so it seemed a bit off.

It didn’t happen again until nearly the weekend. It was a bit strange because it was a single occasion both times. It happened again the week after, but it came out of both ends this time, so I thought I’d eaten something bad.

Sophie U.
Sophie U.

The following week, I went to my doctor because I felt something wasn’t right. I wasn’t vomiting a lot, but it didn’t seem normal. The doctor ran some blood tests and then we would go from there.

She called me the next day and told me that I was so anemic, she wondered how I was still walking. I was almost at the point where I needed a blood transfusion. My son was two then and wasn’t a good sleeper, so I was always tired.

In hindsight, they thought the tumor had gotten so big by that point that it was stopping food from going down. Before that, I hadn’t noticed anything.

Luckily, I had a great GP. She wanted to get to the bottom of things and was willing to go the extra mile.

Unfortunately, I didn’t have any typical symptoms, so that led us down a different path, thinking it was a stomach issue. We tried an elimination diet because we thought it might be an intolerance. She referred me to have an endoscopy, which showed nothing. We did all kinds of things, but that was it as far as symptoms for the first few months.

I was in a lot of pain. My stool wasn’t bloody, but it looked red.

Symptoms Intensified

When we went to Disneyland Paris in February, I was getting bouts of diarrhea. It wasn’t consistent, but I was in a lot of pain. My stool wasn’t bloody, but it looked red. 

When I got back from the trip, I told my GP. I went to see her for something else but told her what I noticed while on our trip. She said, “Now I can refer you to the inflammatory bowel clinic because it’s moving towards that. It might be something like Crohn’s or colitis.”

It takes a while for the referrals to go through. That was February, but I didn’t see him until April or May. He was convinced it was Crohn’s disease, so he wanted to get all the tests done to get them out of the way and confirm the diagnosis so we could move on.

Sophie U.
Sophie U.
Colonoscopy & MRI

He ordered a colonoscopy and an MRI. That ended up happening in June. I had the colonoscopy on a Friday and then the MRI the following Monday. By this point, my stomach pains were getting worse. I couldn’t eat much because I wasn’t keeping anything down.

The colonoscopy was so painful. I didn’t realize what was going on at the time because I was under a lot of medication. I could see it on the screen, but I didn’t know what I was looking at although I knew something looked different. They said, “There’s a lesion and we can’t get the camera past it, so you have to talk to your doctor.” I didn’t know what lesion meant. I thought it was a cut or something. I started searching online, but cancer wasn’t in my mind at all.

It was a relief in some way to know that there was something wrong with me. I just didn’t want it to be that.

Diagnosis

Getting the Official Diagnosis of Stage 4 Bowel Cancer

They didn’t tell me at the time what it was. They called me the next day and said I need to have a CT scan before I see the doctor on Thursday. I thought it was another thing to get done.

I was really sick at that point, so I asked my husband to come with me. At no point had we’d been thinking it was cancer, so no one told me to bring him with me. He came because I couldn’t physically move. I had my CT scan then we walked to the IBD doctor and that’s when he told us.

They staged me at stage 4 bowel cancer. I did all the tests for Crohn’s disease, so they could see where it spread. There were multiple lesions in my liver, all throughout my torso, and a lot of my lymph nodes. No other organs. The tumor was tennis ball sized.

Sophie U.
Sophie U.
Reaction to the Diagnosis

To be honest, it was a massive shock for it to be cancer because I thought it was Crohn’s disease. It was a relief in some way to know that there was something wrong with me. I just didn’t want it to be stage 4 bowel cancer.

It wasn’t the IBD specialist’s area of expertise. He hadn’t had to give that kind of news before, so I don’t think he handled it in the best way because he didn’t know how to say it. It was delivered in quite a shocking way. He wasn’t an oncologist, so it wasn’t very sensitive, I guess.

The tumor was so large that it was almost cutting off my bowel and that’s why I was being sick.

Treatment

Hemicolectomy

I was told that I’d be assigned an oncologist and have a multidisciplinary (MDT) team. They were going to meet with me the following week and come up with a plan, so I didn’t get to speak to my oncologist until the week after. He said I was going to have surgery first because the tumor was so large that it was almost cutting off my bowel and that’s why I was being sick. Nothing was getting through. He said, “For you to get through any chemo, we’re going to have to get rid of this first.”

The surgery was called hemicolectomy and it happened the week after, around 10 days from when I was told I had cancer. I was in the hospital for about a week. It was quite “messy,” they said. It spread back towards my spine and wrapped around blood vessels. They removed a few lymph nodes and had to cut off part of my stomach because it attached itself to my stomach. It was quite a rough recovery, to be honest.

Sophie U.
Sophie U.
FOLFOXIRI Chemotherapy

I was told that I’d be put on the strongest chemo they could throw at it. Because of my age, they thought I could handle it. They were able to do a biopsy and found out that I had a BRAF mutation, which is very aggressive and has the worst prognosis of a bowel cancer diagnosis but because of that, they could also add another type of chemo.

The median survival rate of stage 4 bowel cancer is 8 to 12 months. My doctor didn’t know anyone with a BRAF mutation who survived. It’s known for not having good survival statistics, especially back then. More recently though, a lot of people have been living a lot longer because they’re finding out different treatments for it. It’s still not a great diagnosis, unfortunately.

I had a portacath fitted because they said the chemo was too strong to have in my veins. I had that done about three weeks after surgery and then a week after that, I started my chemo.

I was put on FOLFOXIRI, which is a combination of FOLFIRI (folinic acid, fluorouracil, and irinotecan hydrochloride) and oxaliplatin. I would go to the hospital and have an infusion for about six hours. I would come home with a pump attached to me that would stay on for the next 48 hours before I go back and have it removed.

Chemo was the most horrific thing I’ve had to go through… I was probably just surviving by the end of it.

Side Effects of FOLFOXIRI to Treat My Stage 4 Bowel Cancer

It was rough on me. During those 48 hours, I was horribly sick. The first cycle wasn’t too bad, but I was sick a lot. I also recently had bowel surgery, so they were expecting that. I had bad diarrhea. I was very tired all the time. It progressed because the side effects from the chemo were cumulative.

The oxaliplatin also gave me neuropathy. My feet weren’t so bad. I was having chemo over winter, so my hands were like needles and on fire. I couldn’t put them in the fridge.

They reduced the amount of chemo I was getting and extended my time, so I ended up being at the hospital for eight hours plus the 48 hours after. Honestly, chemo was the most horrific thing I’ve had to go through.

I lost my appetite and my taste of things. I lost a lot of weight. I was probably about 40 to 50 lbs lighter. I couldn’t eat anything. Nothing tasted like anything. Bread and pizza were like cardboard. I was probably just surviving by the end of it. I was living off nutrition drinks.

Sophie U.
Sophie U.

I had such bad brain fog that I couldn’t even talk to people anymore. I would try and say something, but I would forget what I was saying mid-sentence and be so exhausted that I couldn’t be bothered to correct myself.

I would sleep most of the time. My kids at the time were 6 and 3. My daughter was at school, but my son was at nursery. They were lovely enough to take him on for additional hours so I could sleep all day.

For the two days I had the pump at home, I would not be able to keep anything in my body. By the end of it, it was coming out both ends horrendously. I couldn’t leave the house because I had to be near a toilet all the time. I couldn’t even drink water at the end because it was like everything was being rejected.

I didn’t lose my hair, but it did thin quite a bit. I lost a lot of muscle. I melted away and became weak like an old lady. It was horrible because I couldn’t do anything for myself. I couldn’t look after my kids and that was the hardest thing.

One thing I wish I’d done is accept help more and ask for it… I was exhausting myself.

I wish I’d known that it affects everyone differently. If you go on social media, you see people dancing around their chemo poles. I couldn’t even stand up, let alone hold my phone to make a video or take a photo. I was asleep all the time. If I’d known that there were people like me, then I probably wouldn’t have felt so bad.

One thing I wish I’d done is accept help more and ask for it. People always offered to help. It’s hard to admit that you need help, but at the same time, I realized I should have done it because I was exhausting myself.

I only had eight cycles in the end. I was supposed to be on it indefinitely, palliatively. My first scan showed that it shrunk a lot. In bowel cancer, some of the CEA is measured and with me, it was a good indicator of how things were going. When I was first diagnosed, it was off the charts at around 7,000. The chemo got it down to 650 after my first scan. After that, I went downhill rapidly.

I had my last chemo session on New Year’s Eve 2018. The week after, I ended up in the hospital because I couldn’t eat anything or keep anything down.

Sophie U.
Sophie U.
Immunotherapy

We had time between having surgery and starting treatment, so my husband was looking into what else we could do. He read about immunotherapy and that it had been successful in the US. I was looking into it and we were seeing if we could go to Germany and get it done there.

We talked to my oncologist before I started chemo and my husband brought it up. He said he’ll look into it, but because of how far off in the distance it is treatment-wise, I wouldn’t be alive by the time it would be available. We would either have to go to Germany or see how we could afford it because it costs over $190,000 to get this treatment.

When the chemo failed, I met with him and he said he had been working behind the scenes with a different oncologist who was looking for someone like me with BRAF mutation and MSI. Most bowel cancer patients are MSS. I don’t know how it works and why immunotherapy works for people who are MSI, but that’s generally what they figured out.

The drugs were called nivolumab and ipilimumab. The plan was to have both for four cycles and then after four cycles move down to nivolumab alone.

They tested the immunotherapy in melanoma patients and there was something that we have similarly that it might work. They were working with Bristol Myers Squibb, so I could get the immunotherapy on compassionate use if all my other treatment options failed. My oncologist knew this, but he didn’t tell me until it did fail. At the time, that was the only treatment available for BRAF mutation. He said that now it’s failed, he can refer me to get the immunotherapy.

I had to transfer care to another oncologist, which was a further away hospital. The drugs were called nivolumab and ipilimumab. The plan was to have both for four cycles and then after four cycles move down to nivolumab alone. I had the first cycle every three weeks and then nivolumab every two weeks.

Because of the newness of the treatment, they didn’t know how it was going to affect me. I was having the dual drug, so they said I had double the chance of getting any autoimmune disease, which could happen at any point. They had to do blood work every time and check everything. If I noticed anything different about myself, I had to report it to them. They would then report back their findings to the drug company.

Sophie U.
Sophie U.
Side Effects of Immunotherapy

The immunotherapy compared to the chemo was night and day. I was only there for a couple of hours and that was it. The infusion was around an hour and a half to two hours for the first one and then it eventually dwindled to an hour. I could drive out of there when I was done. With chemo, I couldn’t drive out of the hospital. I was barely moving. With the immunotherapy, I felt a little bit sick and a bit tired, but that was it.

After I had the PET scan, he called me up the next day and said, ‘Nothing’s showing on your PET scan. No cancerous cells anywhere.’

Being Cancer-Free

I’d been on immunotherapy for two years. They didn’t know where to go with it because there weren’t many people in front of me, but they knew it was getting to the two-year mark.

I asked my oncologist if I could get a PET scan because they don’t do PET scans so much over here. He wouldn’t do it at first until he agreed eventually. After I had the PET scan, he called me up the next day and said, “Nothing’s showing on your PET scan. No cancerous cells anywhere. It looks like those are dead tumors and we think that your lymph nodes are probably filled with white blood cells and that’s where they’re showing on the CT scans.”

There wasn’t a defining moment of being cancer-free. The only moment I can say that did happen was after I had my liver surgery. My surgeon said they had the biopsy results back because he wanted to wait to make sure. Sometimes when they cut them out, there can still be cancerous cells in the middle. He said they didn’t find anything. He said, “I can tell you now that that means you’re cancer-free.”

It’s a great feeling. I was happy. When I got out of the hospital and sat in my car, I called my husband and cried. That was probably the first time I cried out of relief because it was unbelievable.

Sophie U.
Sophie U.

Words of Advice

Appreciate and enjoy life. We’re all so busy doing things and thinking that we’re living when we’re not. You don’t want something like a terminal cancer diagnosis to make you realize that, but sadly, it does take that for a lot of people. It’s not until you get to this point that you realize how much we’re not living and how much we should be enjoying everything and everyone. Be kinder to each other and enjoy what you have.

We’re all so busy doing things and thinking that we’re living when we’re not. You don’t want something like a terminal cancer diagnosis to make you realize that.


Sophie U. feature profile
Thank you for sharing your story, Sophie!

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More Colorectal Cancer Stories

Allison

Allison R., Colorectal Cancer, Stage 2C



Age at Diagnosis: 32
1st Symptoms: Extreme fatigue, unexplained weight loss, blood in stool, "blockage" feeling after eating
Treatment: Concurrent adjuvant (oral) chemotherapy + radiation, colectomy, oral chemotherapy
Michelle C. feature profile

Michelle C., Colorectal Cancer, Stage 4



Symptoms: Felt like either a UTI or yeast infection
Treatment: Chemotherapy (carboplatin and paclitaxel), surgery (hysterectomy), and radiation
Kelly shares her colorectal cancer story
Kelly S., Colorectal Cancer, Stage 3 Diagnosis: Stage 3 Colorectal Cancer Symptoms: Constipation, blood in stool, abnormal-smelling stool, fluctuating appetite, weight lossTreatment: Dostarlimab
Jason shares his colorectal cancer story

Jason R., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, diarrhea, tenesmus, feeling run down
Treatment: Chemotherapy, radiation, HAI pump
Raquel A. feature profile

Raquel A., Colorectal Cancer, Stage 4



Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatment: Chemotherapy (oxaliplatin, 5-fluorouracil, and irinotecan)
Andrea P., Colorectal Cancer, Stage 3
Symptoms: Frequent blood in stool, lower back pain, rectal pain
Treatment: Chemotherapy (5-FU), radiation, surgery
Steve S. Diagnosis: Stage 4 Colorectal Cancer Symptoms: blood in stool, changes in bowel habits, feeling gassy/bloatedTreatment: Surgery to remove tumor, Chemo: FOLFIRI, monoclonal antibody: panitumumab, liver transplant

Categories
Breast Cancer Ductal Carcinoma In Situ Mastectomy Patient Stories Reconstruction Surgery

Erica’s Stage 0 DCIS Breast Cancer Story

Erica’s Stage 0 DCIS Breast Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Erica, who lost her mother to breast cancer over 20 years ago, shares her stage 0 DCIS breast cancer journey. After a decade of concerning mammograms and due to her mother’s history, she remained vigilant despite negative BRCA results. Following her biopsy diagnosis, she was overwhelmed by the treatment choices but ultimately opted for a double mastectomy to minimize recurrence risk.

Choosing to undergo a double mastectomy including nipple removal provided Erica with confidence and a cancer-free peace of mind. She subsequently underwent reconstructive surgery and as she embraced her new body, she was more excited about having no fear of recurrence.

She completed her transformation with a 3D nipple tattoo from a specialized artist, providing closure to her journey. Leading a nonprofit for kids with cancer, Erica supports other women and caregivers, emphasizing the importance of trusting oneself and the process when navigating cancer treatment decisions.


  • Name: Erica C.
  • Diagnosis:
    • Breast Cancer
    • Ductal Carcinoma In Situ (DCIS)
  • Staging:
    • 0
  • Initial Symptom:
    • Indeterminate calcifications found on a routine mammogram
  • Treatment:
    • Double mastectomy

While cancer is a club you never want to join, once you’re in, there are some silver linings, like the people you meet and the life perspective that you get, and those are true gifts.

Erica C.
Erica C. timeline


I had increasing scans over the years, but I’d never had a biopsy and that was when I thought this was going to get a little bit more serious.

Introduction

I live in Minneapolis, Minnesota. I’m a breast cancer survivor. I lead a nonprofit that helps children with cancer and their families. I’m also a cancer orphan because I lost my mother to breast cancer over 20 years ago. These multiple perspectives on cancer make me incredibly interested in other people’s journeys and sharing my journey to help other women who come after me.

Erica C.
Erica C.

Pre-diagnosis

I was diagnosed in 2018 and it came after about a solid 10 years of “scary mammograms.” Because my mother died of breast cancer, I was on high alert. I met with tons of doctors who said I have the same risk as any other human in the population. I underwent genetic testing and I wasn’t BRCA positive, but I still didn’t feel good about my health journey given my mother’s unfortunate diagnosis and death.

Over the years, I’ve had mammograms, ultrasounds, and MRIs. They would always see something a little bit scary, ask me to come back for a higher level of screening, and then say it’s fine. It built up this anxiety over the years because they started to see some abnormal things, particularly calcifications, which are potentially early signs of breast cancer.

It got to the point where I thought, When are we going to take this a little bit more seriously? I was getting routine mammograms every six months and one time, they said, “Let’s have a biopsy.” I had increasing scans over the years, but I’d never had a biopsy and that was when I thought this was going to get a little bit more serious.

While stage zero sounds great, it still requires a fair amount of intervention and a fair amount of choice.

Diagnosis

Looking back, I’m not sure if I was surprised by the diagnosis or if I felt like, “Finally.” After the biopsy, I received the diagnosis that it was DCIS, which is ductal carcinoma in situ. It’s an early-stage breast cancer. Many people can say that’s a good kind of cancer, but there’s no such thing as a good kind of cancer.

While stage zero sounds great, it still requires a fair amount of intervention and a fair amount of choice. Being presented with all those choices became the most overwhelming part because it was starting to come at me like a fire hose.

Erica C.
Erica C.

Treatment Decision Making

The choices that I had to make ranged from doing nothing to a double mastectomy and everything in between. I was given the choice of a lumpectomy to remove the part of my breast that showed early-stage breast cancer. I was also given the choice of hormone therapy. I was given a choice of radiation, even the choice of some chemotherapy. It all ranged amongst a spectrum.

My mother’s journey had been a painful one because hers also started as early-stage breast cancer. At the time, doctors said it wasn’t a big deal. As you know by the results, it became a big deal. She relapsed four times over her journey and it came back bigger, stronger, and more invasive every time.

I had all these choices of less aggressive treatment, but I wanted a double mastectomy because I didn’t want this to come back.

For me, it became this choice of how to rewrite the story. How do I advocate for myself in a way that maybe my mom didn’t? Maybe she didn’t have the right information at the time.

I felt more confident facing all these choices and because of what I’d seen with my mom, I went straight to a double mastectomy. I got a lot of eyebrows raised. I had all these choices of less aggressive treatment, but I wanted a double mastectomy because I didn’t want this to come back.

I had all the statistics and all the advice, but within about a week, I became pretty firm in my decision to choose a double mastectomy. People questioned me, but it was the best decision I ever made.

Erica C.
Erica C.

Double Mastectomy

A double mastectomy is a pretty radical choice. Once you choose a double mastectomy, they remove your breast tissue. A choice that you get to make is whether you want to also remove your nipples or if want to try to keep them through a nipple-sparing surgery.

For me, this was a fear-based choice. If I was going to do such an invasive surgery to essentially remove two near-lifetime body parts, I wasn’t going to leave anything to chance, so I chose to have my nipples removed as well.

I chose to go under the chest muscles, which is more painful but ensures the longer-term security of the implants.

Reconstructive Surgery

The other choice I had was whether or not I was going to have reconstructive surgery. I can buck the stereotype and say I don’t need breasts. I’ve already had children and was done breastfeeding. But I chose to have reconstructive surgery.

At the time, it was a very extensive surgery. It’s done in two parts, which is what I didn’t realize at first. I was in surgery for 8 to 10 hours. The first four were simply removing my breasts. I had a breast surgeon who was going to take out everything and some lymph nodes to test. Then the breast surgeon handed me off to a reconstructive plastic surgeon.

To me, plastic surgery sounded vain and unnecessary, but I had to get comfortable with having a breast plastic surgeon come in. For the next four hours, that surgeon cut into my muscles. I could have gone over my chest muscles, but I chose to go under the chest muscles, which is more painful but ensures the longer-term security of the implants.

My surgeon said, “It sounds like you’re all in and that you’re confident. This is going to be more painful, but you will have a better outcome with the implants. They’re not going to move around. They’re going to be secured into your chest. Trust me.” For somebody who I’ve just met to say, “Trust me,” is quite possibly the greatest leap of faith.

Erica C.
Erica C.

At the end of that surgery, not only did he cut underneath my chest muscles, but he essentially put two deflated balloons under my chest muscles and then sewed me up.

After that eight-hour surgery, my job was to heal and make the choice of what I wanted my breasts to look like afterward because, over time, he would fill those balloons with saline to expand my chest. If you’ve ever had dental braces, that’s the kind of soreness and pain you feel when they’re expanding your chest over time. It’s a wild ride and it was painful.

I didn’t realize how much I used my chest. When you raise your hand, that’s your chest muscle moving. I couldn’t touch my nose so when my nose itched, I had to have someone else scratch my nose for me. It was scary and painful, but I still stand by it being the best choice I ever made. I healed and have full mobility now. I can work out, do push-ups, and everything.

They look great. I can wear a bikini and you would never know.

Post-Mastectomy

Right after surgery, you start flat-chested with what looks like Frankenstein stitches. They are not pretty. What’s interesting is that every week, when I would go to the nurse or the doctor, they would say, “Oh, this is going to look amazing. I could see it.”

These sort of deflated balloons come with what seems to be a metal top that’s placed under my skin. Every week, they would put a magnet on my chest to find where that metal piece was and that’s where they would pierce my skin and inflate the balloon with saline a little bit at a time. This took about three months. It’s quite painful to stretch your skin and your muscles at the same time when this massive scar is healing.

As they’re slowly inflating these balloons with saline, I start to see what’s happening and start to see them look real. I’m still wearing loose tops and tops that zip up because I don’t have full mobility of my chest, but I was starting to feel normal again.

They were hard massaging my scars, which I couldn’t even believe. There are also certain oils you can apply. I even had a laser procedure done to reduce some of the scars. I ended up with this really beautiful chest—just without nipples.

Erica C.
Erica C.

I had to have another surgery, which was supposed to be easy but there’s no such thing as easy in this journey. They had to take out the temporary balloons and put in a permanent implant. They also did a fat graft by taking fat out of my belly and putting it around the implant so they looked natural. I walked out of the second surgery looking like someone attacked my breasts and my abs. Liposuction was so painful. I couldn’t even breathe. It’s not easy, but it was so worth it.

I wear the exact same bathing suit that I wore pre-surgery. I wear the exact same tight dresses. But here’s the kicker: I don’t have to wear a bra. My implants don’t move so I get to wear backless dresses with nothing. I get to wear fancy dresses that I wore before and not have that feeling at the end of the night when my bra is too tight and I can’t wait to take it off. They look great. I can wear a bikini and you would never know. 

The biggest reason I’m so excited about this is because I have no fear. I have no fear of reoccurrence. The mental game that I had to go through to get here was hard. You heard about the physical pain. The procedures were challenging, but my mind is cancer-free and that is the most beautiful thing. I don’t worry about reocurrence. I can’t get breast cancer. I don’t have to get mammograms. I don’t worry about it and that to me is the greatest gift.

Between a lumpectomy and mastectomy, I’m confident in saying a double mastectomy.

I did get mental health therapy at the request of my breast plastic surgeon. He said, “You look great, but I’ve been around the block. I encourage you to get some therapy.” I’m a proud person and said I didn’t need it. I needed it. I absolutely needed it.

In the beginning, I had a fear of relapse. My therapist and I talked through some ways and some strategies to get around that. My body is cancer-free, my mind is cancer-free, and that is the greatest choice I made.

If I had had a lumpectomy, I’d be subject to continual mammograms and we all know that those are anxiety-inducing. I’d be subject to hormone therapy. I’d be on high watch. It would not be worth it.

A lot of people who are newly diagnosed reach out and ask what they should do between a lumpectomy and mastectomy, and I’m confident in saying a double mastectomy.

Erica C.
Erica C.

Lumpectomy vs. Mastectomy

A lumpectomy is a minimally invasive surgery where they take out the area that has the cancer and the surrounding tissue. It’s “easier,” although I’ve heard lumpectomies are still not easy.

A lumpectomy can be done outpatient, but depending on the diagnosis, there is typically some follow-up. For quite some time, you have to come in every day to have it taken care of.

With mastectomy, they remove the entire breast. Depending on whether or not that cancer has spread outside the breast, there could be chemotherapy as well.

You might need to have radiation to make sure they got everything and radiation can be painful. There’s also hormone therapy, which involves taking some drugs to make sure that some of your hormones are not feeding the cancer.

It was unclear whether or not I was going to get sensation back in my breasts and to be able to feel the pain of the needles of a tattoo was relieving.

Getting a Nipple Tattoo

I read an article about a tattoo artist who specialized in nipple tattoos. It was a beautiful article about how much compassion he had for breast cancer survivors so that’s where he dedicated his career.

I originally wasn’t going to see him because I’d have to fly across the country. It seemed to be a big hurdle and I was going to have it done at my plastic surgeon’s office where a nurse practitioner said she could do it. I kept hemming and hawing about it and I realized that I wasn’t ready for the journey to end because the last step of the entire journey was the nipple tattoo. I decided to get some mental health therapy first because I didn’t think the journey was over for me mentally.

On the day of my appointment, I canceled with the nurse practitioner. When I talked to my therapist, she said, “It sounds like this is a big thing for you. Tell me more about it.” I told her I had the dream about getting this fancy tattoo artist to do it for me. She said, “Well, then you go do that,” and so I did. It was the celebratory closure for me.

Erica C.
Erica C.

I drove up there and there was no fanfare. I was alone going to a tattoo parlor in a strip mall outside of Baltimore. I’ve never had a tattoo. I was afraid of needles and pain but here I am, about to get a tattoo, which was quite ironic.

Part of reconstructive surgery is that you lose sensation. I couldn’t feel my breasts. As I was sitting with the tattoo artist, he said, “You probably won’t feel a lot of this because you’re still in the reconstructive phase and your nerves are still healing.” Sure enough, it was painful. It was unclear whether or not I was going to get sensation back in my breasts and to be able to feel the pain of the needles of a tattoo was relieving.

The tattoo artist approached the process quite clinically. He looked at my breasts and said, “Okay, I think I’m going to do this. I think I’m going to do this.” He didn’t ask my opinion. He just asked, “You want 3D? You want it to look real?” I said, “Yes, I do,” and he went to town. Twenty minutes later, I put my shirt back on and it was over. It was truly over then.

My mission to support other women and caregivers because of the many gifts that I have been given by other cancer patients.

Life’s Mission

Cancer changed my life. I lead an organization that helps kids with cancer and their families, but that journey started when I was right out of college and didn’t have a lot of purpose. I didn’t love my first job and volunteered at a sleep-away summer camp for kids with cancer. I took a week off of work and would be the mom to these kids, whether they were seven-year-olds or teenagers. Those were some of the most life-changing experiences I have ever had.

When I was diagnosed, I realized it’s what I’m supposed to be doing. Not only is it my career now, but it is my mission to support other women and caregivers because of the many gifts that I have been given by other cancer patients.

I spent a lot of time with my mom in the hospital where I met other cancer patients. While cancer is a club you never want to join, once you’re in, there are some silver linings, like the people you meet and the life perspective that you get, and those are true gifts.

Erica C.
Erica C.

Words of Advice

Trust the process and trust yourself. No one better than yourself knows what’s right for you. While I recommend having a mastectomy or someone may have said something, ultimately, trust yourself and trust the process. That will get you through.


Thank you for sharing your story, Erica!

Inspired by Erica's story?

Share your story, too!


More DCIS Breast Cancer Stories


Erica C., DCIS, Stage 0



Symptoms: Indeterminate calcifications found on a routine mammogram
Treatment: Double mastectomy
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast, left nipple inverting
Treatment: Double mastectomy, chemo (AC-T), Radiation

Alison R., Partially Differentiated DCIS, Stage 4 Metastatic



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in underarm/breast
Treatment: Chemotherapy, surgery, radiation, targeted therapy

Categories
Endometrial Cancer Patient Events

Endometrial Cancer: Know Your Treatment Options

Endometrial Cancer: Know Your Treatment Options

Discover the Latest Developments Used to Treat Advanced or Recurrent Endometrial Cancer

Edited by:
Katrina Villareal

Patient advocate Tiffany Drummond and gynecological cancer expert Dr. Brian Slomovitz of the Mount Sinai Medical Center in Miami, Florida, discuss the latest treatments for endometrial cancer.

Develop a comprehensive understanding of advanced and recurrent endometrial cancer, enhancing your knowledge about the disease’s progression and challenges. Learn about the current treatment protocols and how they offer hope and recovery to patients dealing with this severe form of cancer.

Explore how immunotherapy is transforming the treatment landscape, providing new avenues for potentially more effective and personalized care. Discover cutting-edge developments in the field, including promising clinical trials that could offer new hope and treatment options for patients. Gain insight into advances in robotic surgery, including techniques using the da Vinci Surgical System, which offers precision and reduced recovery times.


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.



Introduction

Stephanie Chuang, The Patient Story Founder

Stephanie Chuang: I’m the founder of The Patient Story and a cancer survivor. Mine was non-Hodgkin lymphoma. During that time, I realized how important connection was and that became the genesis of The Patient Story. This multi-channel community seeks to connect, educate, and empower patients and care partners. We do this primarily through in-depth patient story videos and educational programs with a thread of self-advocacy, asking questions, and sharing more about what you’re experiencing with your medical team, which is so important in cancers, especially like endometrial cancer where it’s critical people understand what is available to them and what to ask their doctors.

Thank you to Karyopharm for its support of our independent educational program, which helps us host more of these for free for our audience. The Patient Story retains full editorial control of all content. While we hope you walk away with more understanding, this discussion is not meant to be medical advice or a substitute for your medical care.

Stephanie Chuang
Tiffany Drummond

The discussion will be moderated by Tiffany Drummond, who has more than 15 years of experience as a clinical research professional. Tiffany lost her mother Leonora Jean Drummond to endometrial cancer in 2016 and ever since, her mission has been to promote women’s health and wellness. Tiffany works with ECANA, the Endometrial Cancer Action Network for African-Americans, which is incredible in helping to create community.

Tiffany Drummond, Patient Advocate

Tiffany Drummond: As a clinical research educator, I’ve been doing hematology-oncology research for about 20 years, and most importantly, I’m a patient advocate and daughter of someone who I lost to endometrial cancer.

Endometrial Cancer - Know Your Treatment Options
Dr. Brian Slomovitz, Gynecologic Oncologist

Tiffany: Dr. Brian Slomovitz is a gynecologic oncologist at Mount Sinai Medical Center in Florida. He’s a nationally recognized expert in robotic surgery, sentinel lymph node evaluation, and immunotherapy, and has led a number of clinical trials specifically in endometrial cancer. Dr. Slomovitz, what drew you to this field?

Dr. Brian Slomovitz: When I was thinking about which specialties to go into, I enjoyed surgery. I also enjoyed the why and the how of things and what we can do for the complete care of our patients not just surgical management, medical management, or preventative management.

As a gynecologic oncologist, I focus on complete patient care, including prevention or early diagnosis, initial treatment options, cure, and survivorship. I also focus on how to manage recurrent and advanced disease, improving one’s quality of life while trying to control cancer, and ultimately leading a woman through her disease course.

For me, it’s promising and rewarding. One of the things that was introduced to me in this area is clinical research and the importance of research in offering the best care for our patients.

Dr. Brian Slomovitz
Endometrial Cancer - Know Your Treatment Options

What is Endometrial Cancer?

Tiffany: What is endometrial cancer?

Dr. Slomovitz: In gynecologic oncology, we deal with three major types of cancer: ovarian cancer, cervical cancer, and endometrial cancer. Endometrial cancer is the most common gynecologic malignancy. It’s much more common than ovarian cancer and cervical cancer.

Historically, we didn’t think about it as much because most women with endometrial cancer do well from their disease and will die of something else. But as we focus more attention on it, we’re learning that endometrial cancer has a subgroup of patients with metastatic or recurrent disease that represents an unmet need. We need to come up with better treatment options for them and that’s what I’m focusing a lot of my time on.

Endometrial Cancer - Know Your Treatment Options

In 2024, the number of deaths from endometrial cancer will outnumber the deaths from ovarian cancer, which highlights the unmet need. We need to do better. We always thought about ovarian cancer as a “killer.” The fact that there are more deaths from this disease is something that frustrates us and something that we need to do something about.

Symptoms of Endometrial Cancer

Dr. Slomovitz: Abnormal bleeding is a symptom of endometrial cancer. A lot of times, people think it’s postmenopausal bleeding, which is true if you’re in menopause and have spotting. It would be best if you had an appropriate workup with a provider who does gynecologic exams. Some people see their family practice doctor or primary care doctor, but it’s important to see a gynecologist or someone who does gynecologic exams, which would include an endometrial biopsy as well as an ultrasound.

Endometrial Cancer - Know Your Treatment Options

Other symptoms include pelvic pain, pelvic pressure, and abnormal pap smears. Any symptoms that last from 10 days to two weeks or get progressively worse need to get checked. We need to encourage women to see their healthcare provider, but abnormal bleeding is the number one issue that we worry about.

Tiffany: For my mother, it was postmenopausal bleeding and I’m not sure why, but she didn’t think it was something that needed to be looked at. She thought it was normal. I say this for women in general: our GYN care is going to help us throughout our lives. It doesn’t stop when you go through menopause. Always be aware of that.

Endometrial Cancer - Know Your Treatment Options

Current Treatments for Endometrial Cancer

Tiffany: What are the current standard treatments for endometrial cancer?

Dr. Slomovitz: For women who are initially diagnosed, the first step is usually surgery. After we get imaging, like a CT scan, a lot of these patients will have clinical stage 1 disease surgical resection, which is a hysterectomy. Traditionally, we did these with an up-and-down incision. Patients would be in the hospital for a long period of time. Now we’re doing most things minimally invasive.

Endometrial Cancer - Know Your Treatment Options

I do mine robotically with a da Vinci robot. We’ll remove the uterus, the tubes, the ovaries, and the cervix. The advantage there is less blood loss, less pain for the patients, and a quicker recovery. It’s a little easier for the surgeon too, which I don’t mind. It’s best for our patients. They can go home the same day or the next day.

We do a sentinel lymph node biopsy using the Firefly technology. It’s like using night vision goggles to identify nodes that are most likely involved.

Tiffany: I’m so glad that these advancements exist.

Endometrial Cancer - Know Your Treatment Options

Advanced & Recurrent Endometrial Cancer

Tiffany: My mother had recurrent endometrial cancer and was diagnosed at stage 3. Can you talk to us about recurrent and advanced endometrial cancer and the current options for them? When we say advanced and recurrent, what do they mean in terms of endometrial cancer?

Dr. Slomovitz: Women who are diagnosed with stage 1 endometrial cancer will make up 80 to 90% of the patient population. It’s the patients with advanced disease that we’re worried about. Similar to your mom, lymph node positivity stage 3, widely metastatic disease stage 4, and the subgroup of patients with earlier stage disease that recur represent a diagnostic or treatment challenge and an unmet need.

Endometrial Cancer - Know Your Treatment Options

Traditionally, we would use chemotherapy, but as we’re learning more and more about the disease and being able to look at the molecular subclassifications of endometrial cancer, we’re learning that different types of tumors can respond differently to different types of therapies.

Immunotherapy was originally found to work extremely well in non-small cell lung cancers and melanomas. When we learned more about endometrial cancer, not only did we find that there’s activity of immunotherapy in endometrial cancer, but there are distinct subgroups within patients with recurrent or metastatic disease that respond more favorably to immunotherapy. Those are areas that we need to exploit, taking knowledge that we have, and then pushing that forward into the clinical setting.

Not all patients are the same. We need to offer more unique, personalized medicine, and to do so, we need to better understand the biology of the disease to execute a better treatment strategy.

Endometrial Cancer - Know Your Treatment Options

Biomarkers in Endometrial Cancer

Tiffany: We’re hearing about biomarkers and a lot of patients are becoming more familiar because they’re being told that they either have or don’t have certain biomarkers. Can you break down the biomarkers dMMR and pMMR and why they are important in guiding treatment decisions for our patients?

Dr. Slomovitz: When cells divide, normally there are errors in the process. Cell division isn’t a perfect process. The body normally recognizes the errors and corrects them. The team of proteins that does this is called the mismatch repair (MMR) proteins. If cells are proficient in mismatch repair proteins, they’re more likely to be able to repair those cells and move forward. That’s pMMR.

The dMMR is a different subgroup deficient in mismatch repair proteins. These are the ones that the body’s unable to fix. By not having these “fixed cells” or cells that look normal, these cells look like they shouldn’t be there. They look more like non-self instead of self, so they respond better to immunotherapy.

Endometrial Cancer - Know Your Treatment Options

Immunotherapy is not a poison that we give cells. Immunotherapy is sort of a stimulant of the body’s immune system to fight off something that shouldn’t be there. When we think about tumors or cells that are more responsive to immunotherapy, it’s more of the non-self cells, cells with a high mutational burden, or cells that have some different molecular characteristics. DMMR is more responsive to immunotherapy. PMMR, while they still respond to immunotherapy, they don’t respond as well. We need to treat them differently.

Endometrial Cancer - Know Your Treatment Options

Tiffany: I’m assuming the typical first-line treatment approach is immunotherapy. Are there other alternatives?

Dr. Slomovitz: For the dMMR population, the best treatment option for patients with advanced or metastatic disease is chemotherapy in combination with checkpoint inhibitors. Over the last year and a half or so, we’ve had landmark trials looking at drugs including pembrolizumab, dostarlimab, atezolizumab, and durvalumab, which are all checkpoint inhibitors. Given in combination with chemotherapy, they have shown unprecedented improvements in overall survival and progression-free survival in patients with dMMR tumors. There was a 70% reduction, which is remarkable.

Endometrial Cancer - Know Your Treatment Options

Tiffany: What is a checkpoint inhibitor?

Dr. Slomovitz: A checkpoint inhibitor is a medication given to a patient that helps to stimulate the immune system to better fight off things that shouldn’t be there. When we give it to a patient to attack a tumor, the dMMR tumors are recognized by the body as something that shouldn’t be there more than the pMMR tumor, so that’s why checkpoint inhibitors work better in that setting.

Highlighting Endometrial Cancer Clinical Trials

Tiffany: Let’s talk about the changing treatment landscape. Immunotherapy is likely to become a more common treatment for women with advanced endometrial cancer. Following the results of these clinical trials that you were talking about, can you talk more about this and what these breakthroughs were with these results?

Dr. Slomovitz: The initial results showed that giving immunotherapy with chemotherapy works better. As we move forward, what we’re focusing on is to see if we can give combinations or single agents in the first-line setting before chemotherapy to eliminate the use of chemotherapy but to get the same effectiveness.

Endometrial Cancer - Know Your Treatment Options

Recently reported was one trial looking at a combination of pembrolizumab and lenvatinib in the first-line setting. That didn’t meet its statistical endpoint, but that looked at all comers, pMMR and dMMR.

There are two ongoing trials now: one’s completed accrual but hasn’t read out and one’s still accruing, looking specifically at the dMMR population to see if a checkpoint inhibitor alone can work in those patients. I’m the global lead on one of those. We’re looking at pembrolizumab in patients with dMMR tumors and comparing it to chemotherapy to see if we can get rid of chemotherapy for that population. Now if we can, it’ll be amazing.

Tiffany: Very promising. This is why I’m such a proponent of clinical research and increasing diversity and participation, so we can get good data.

Endometrial Cancer - Know Your Treatment Options

Tiffany: Let’s talk about adding immune checkpoint inhibitors, like pembrolizumab and dostarlimab. What is the conversation about this becoming the new standard first-line treatment for advanced or recurrent endometrial cancer patients with dMMR tumors? Is this something that needs more research or more data to fully understand the scope?

Dr. Slomovitz: I would say with certainty that for the dMMR population, unless there’s a contraindication to immunotherapy checkpoint inhibitors, those patients deserve or should get checkpoint inhibition as the standard of care based on the promising results. It’s not as much of a slam dunk for pMMR, but for the dMMR population, treatments should include a checkpoint inhibitor, without a doubt.

Endometrial Cancer - Know Your Treatment Options

Maintenance Therapy Options in Endometrial Cancer

Tiffany: Let’s talk about some clinical trials that are actively enrolling in the advanced and recurrent setting, with late-stage endometrial cancer, such as selinexor as a first-line maintenance therapy. What trials are ongoing that people can learn about and be eligible for?

Dr. Slomovitz: In addition to leading the division of gynecologic oncology at Mount Sinai Medical Center in Miami Beach, I also serve in the GOG Foundation and lead the uterine cancer clinical trial portfolio. In that capacity, we have a lot going on in uterine cancer, which is exciting. Wearing my Mount Sinai hat, we’re excited that most of those trials are opened up at Mount Sinai.

Endometrial Cancer - Know Your Treatment Options

Selinexor is a nuclear transport inhibitor. This is for pMMR, most likely p53 wild-type, which is a biomarker in the cell. The trial doesn’t require pMMR but knowing that they get checkpoints, it’ll probably all end up being the pMMR population. Chemotherapy versus chemotherapy and maintenance selinexor.

Endometrial Cancer - Know Your Treatment Options

Now we did the preliminary trial, called the SIENDO trial, where we looked at all comers, whether they’re p53 wild-type or mutated, and found that the primary outcome didn’t benefit the selinexor group. But if we did a subgroup analysis, if we looked at patients with p53 wild-type tumors, there was a big difference in outcomes. Outcomes improved in patients treated with selinexor.

We then went to the FDA and said, “Wow, look at this outcome. This will be better for our patients.” The FDA agreed, but appropriately, they said we needed to do a separate study looking at that to see if it works and that’s one of the trials that we have open accruing globally. It’s called the XPORT-EC-042 trial. We’re looking to see specifically in chemo-naive, p53 wild-type patients if adding selinexor can help improve outcomes.

Endometrial Cancer - Know Your Treatment Options

Other areas are taking off in endometrial cancer. There’s a class of drugs called antibody-drug conjugates (ADCs), which is a novel class of drugs. They have three components. They have an antibody that’s attracted to a protein on the tumor cells. Then there’s a chemotherapy kill, the part that helps kill the cell. The third and most important part is the linker.

When the drug is given, it travels throughout the body and only goes to the cancer cells because of the antibody-protein interaction. Once it gets there, the linker lets go of the chemotherapy, which then goes in and kills the cells.

Endometrial Cancer - Know Your Treatment Options

In endometrial cancer, we recently got FDA approval in all comers for trastuzumab deruxtecan (T-DXd) based on the DESTINY-PanTumor02 data, which is an ADC that’s attracted to the HER2 protein on tumor cells. That had unprecedented response rates in the recurrent setting.

Tiffany: We have a lot going on in the clinical research world with endometrial cancer. I’m so excited because it wasn’t always as robust, so I’m glad to see researchers taking steps to improve that.

Endometrial Cancer - Know Your Treatment Options

Endometrial Cancer Treatment Side Effects

Tiffany: Let’s talk about clinical trials in terms of side effects. We know that a lot of these drugs are toxic and have a lot of side effects.

Dr. Slomovitz: Clinical trials allow patients to get a drug that they normally wouldn’t be able to get, which hopefully, improves outcomes. New drugs can have new side effects that we need to be aware of. One of the things that I talk to my patients about when they go on a clinical trial is they get two teams of healthcare providers following them. It’s not only me and my team with our nurse practitioners and nurses, but the whole clinical research team.

Endometrial Cancer - Know Your Treatment Options

Clinical research is like following a cookbook. To get FDA approval, we try to make treatment as homogeneous as possible without a lot of differences. We follow the cookbook to say dosing, when should things start, when to hold the dose, when to reduce the dose, how are the side effects being managed, and all those things. Between the research team and the clinical team, we communicate closely with our patients. We follow the side effect profile. We look for new signals.

Tiffany: That’s an excellent point you made. When I listen to the experiences of people in clinical trials, they tend to have the sentiment that they get more comprehensive care because they have this whole team of people including other providers outside of their GYN oncology. One of the benefits of clinical research that I think a lot of people don’t know because they’re afraid to jump into the unknown is that you’re getting looked at a lot more than you probably would.

Endometrial Cancer - Know Your Treatment Options

Dr. Slomovitz: It’s important to highlight one of the fears patients have in going on clinical trials is not the side effects they’re going to get; it’s getting a placebo. Whenever patients are on a clinical trial, they’re at least getting the standard of care.

We do not experiment on patients. We do clinical research and study if the new treatment options do better, the same, or worse than the standard of care. Unless the standard of care is observation, we don’t give a placebo. I have to highlight this in every single talk I give.

I don’t want patients to think that if they’re going on a clinical trial, they’re actually getting worse care or they’re being studied incorrectly in a way we did historically. Over the last 20 years, the way we do research in the country has been completely revamped to be ethical, sound, and looking out for the best of our patients. There’s an understanding that we need to do better and make sure we give patients at least the standard of care. We need people to acknowledge that in the research community, we’ve changed. At worst, they’re getting standard of care, but even with the standard of care, they’re getting two teams watching.

Tiffany: I’m so glad that you brought that up. I drive that point home every time I’m talking as well because a lot of patients, specifically on cancer trials, do think that they don’t want to be experimented on. At the minimum, you’re going to get whatever the standard is. Thank you for driving that point home.

Diversity, Equity & inclusion (DEI) in Cancer Trials

Dr. Slomovitz: There’s something that we often mention in the last five minutes of these interviews that needs to be mentioned in the first five minutes. Diversity.

Once you talked about a patient signing on and not getting a placebo, patients need to know that they’re being represented on these trials and that they’re not the only person from their community from coming in on the trial. They’re equally represented. It’s crucial. We need to make sure that the results of the trial translate across different populations.

I’m going to throw the numbers out there, which are disturbing to hear but are facts. Black women are nearly twice as likely to die from endometrial cancer than white women. There’s no other way to say it. We need to do better. 

In these research trials, we need to make sure that there’s an appropriate representation of all different diversities for the results to translate to those groups. If we have a clinical trial with 100% white women and it works, that doesn’t mean it’s going to work in Black patients, Hispanic patients, or Asian patients.

We must have this conversation at the beginning of the interview because we have to focus on it. We need to increase the diversity in our clinical trials and then we could ensure not only to get better outcomes but better outcomes across different populations.

Tiffany: A man after my own heart. This is something that I have a personal and professional passion for, increasing diversity in clinical trials and how important it is that when we look at these approvals, it’s representative across populations. The FDA came out with guidance that when you’re submitting investigational new drug applications, you need to have a diversity plan. I hope that researchers and investigators measure their success with that and not simply saying they tried but didn’t make it. Thank you for being a proponent of that.

Endometrial Cancer - Know Your Treatment Options

Dr. Slomovitz: Patients need to reach out to their providers to talk about the option of clinical trials. As physicians, we want what’s best for our patients, even if it means taking care of a patient with the best standard of care at the hospital down the street if there’s a clinical trial available. We’re working towards having a community to be able to offer patients clinical trials. Fortunately, we have a lot going on at Mount Sinai Medical Center, which I’m able to offer to our patients.

Making patients aware of clinical trials is important. How do we do that? We have to go into different settings and different areas where we’re not used to. We used to put up a flyer on the wall that said, “Come to the hospital to learn about clinical trials.” We have to understand that certain populations either can’t get to the hospital, don’t want to go to the hospital, or don’t know what’s going on in the hospital. Going out to community centers, advocacy groups, churches, and places like that is extremely important to help overcome those barriers and biases against clinical research.

We don’t realize there’s not only the fear of research but there’s also the practicality of research. For example, sometimes we send our patients a questionnaire to fill out before an online visit. A lot of patients still don’t have access to Wi-Fi, so what do we do about that? Or we ask them to come to the hospital for a three-hour appointment. Who will take care of that person’s children or sometimes their grandchildren when they’re the primary caregiver? What if that person works and if they don’t, they can’t afford dinner? Those are things we need to do better at.

We’re working closely with sponsors to help overcome some of the things that we can overcome. We can’t do everything, but if it means having a sponsor pay for four hours of child care to get a patient on the research, it’s important to do that. The DEI plans that you mentioned include some of these ways to overcome the barriers associated with research to increase diversity, which will make the outcomes of trials better.

Endometrial Cancer - Know Your Treatment Options

Setting Expectations for a Patient’s Clinical Trial Experience

Tiffany: Hearing the word “research” can be scary, but what can someone who has endometrial cancer expect when they go on a clinical trial?

Dr. Slomovitz: There needs to be an understanding that they’re going to get at least the best care if not better care than they would get off a clinical trial. They need to be comfortable in the environment.

Here in Miami, much of the population doesn’t speak English, so we need to educate patients about clinical trials in their language as best as we can. The cold comfort is the fear of the word research and fear of not being able to understand the information, so all of our consent forms and patient information are offered in multiple languages.

They need to understand that they’re watched closely. They may have some side effects that we’re not expecting, but just the same, they may have some outcomes that we’re not expecting either.

They need to know that it’s not a lifelong sentence. Part of the consenting process is if they decide to back out, they could back out. We’re not here to force people to do anything. We’re here to recommend. We’re not here to be paternalistic. Patients sometimes ask, “What would you do if it’s your family?” We’re honest with them about that, but we need to make it an experience that patients appreciate.

There are better rewards than a patient not responding to a trial, but a patient who’s not responding to a trial who says, “Doc, what’s next? What’s the next clinical trial for?” That means we’re doing a good job in offering that patient a trial. We knocked down barriers and that’s a patient who wants to do the best for herself.

Tiffany: I do tell people who are thinking about participating in a trial as well that they’re not only doing it for themselves, they’re doing it for future patients. If we’re altruistic, then participating in clinical trials is one thing that we can do to help others.

Endometrial Cancer - Know Your Treatment Options

Requirements and Responsibilities of a Clinical Trial

Tiffany: Let’s talk about the actual procedures and tests that are done. People might be surprised that they already get these done anyway. What can someone expect?

Dr. Slomovitz: There are some similarities and some differences. Similarities include blood tests, appointments with doctors, signing consent forms, and answering questionnaires. These things take a bit longer, but they’re part of the process that we need to go through to get them on a trial. Those are things that we normally do but they’re a little bit more intense in a trial. It’s part of the standard of medical care not only of research care.

In addition, there are tests that we need to do that are outside the standard of care but important for a particular trial. For example, we don’t normally have to do a heart scan and an echo, but for a certain drug, we might have to do them.

The most annoying thing patients may need to do will be an extra biopsy. A lot of our trials now are biomarker-directed and some of these biomarkers are novel, so we don’t have that information unless we do a new biopsy. Any procedure you do has its risks and benefits. Fortunately, a lot of times, biopsies are relatively straightforward.

diverse group of women

Improving Diversity in Clinical Trials

Tiffany: How can we improve clinical trial awareness and education in underserved communities?

Dr. Slomovitz: When we talk about a cancer that’s deadly and may end their life prematurely, it’s important to know all the options from the beginning, even if they’re not coming to the office from day one and thinking about or eligible for a clinical trial. Maybe not now but in the future. It’s the education process that says we have things on the standard of care and off the standard of care. It’s important to share the results with our patients so they see that we’re moving forward, knocking down some of the biases.

We talked about things like financial toxicity, time toxicity, and effort toxicity, and helping to overcome those barriers. There are resources out there. Sometimes patients can’t drive. Some of the car companies have different deals. The American Cancer Society supports that and things like that.

It’s a process. We’re getting better, but we still need to do better. I’m not going to be happy until we have a clinical trial option available for all of our patients with advanced recurrent disease to allow them to get the best standard of care before they are defeated by cancer.

Tiffany: The average life cycle of a clinical trial, from the time it starts to the time it gets market approval, could be anywhere between five-plus years. But if you are participating in that clinical trial, you get first-hand results on what’s going on in your care and that data is going to be used to push those approvals.

uterus

June is Uterine Cancer Awareness Month

Tiffany: You and I are very passionate not only about diversity in clinical trials but also about education and promoting clinical research. June is Uterine Cancer Awareness Month. Can you talk about that and why that’s important? What are you and Mount Sinai Medical Center doing to promote Uterine Cancer Awareness Month in June?

Dr. Slomovitz: We saw an unmet need. There’s Cervical Cancer Awareness Month in January, Ovarian Cancer Awareness Month in September, and Breast Cancer Awareness Month in October. We needed to make Uterine Cancer Awareness Month, so we started that in 2023.

Mount Sinai is making a big effort here and leading it in South Florida. They also have been supportive of my work with the International Gynecologic Cancer Society, the global leader in gynecologic cancers.

Endometrial Cancer - Know Your Treatment Options

Final Takeaway

Tiffany: What is your takeaway for patients who are newly diagnosed and starting this journey?

Dr. Slomovitz: It’s important to describe why they got it or if we can know why. Sometimes these are obesity-related, hereditary, or caused by other factors. What can they do to get the best treatment options?

Make sure you’re comfortable with your care. Many patients can get a second opinion to make sure that they’re getting the best care. If they’re uncomfortable with the first opinion, seek out a second opinion because this is an important decision. It’s not only the surgery but the follow-ups. Not to say that the first doctor may have done something right or wrong, but when there are different options that patients weren’t made aware of from the beginning, it’s extremely frustrating.

Make sure that clinical trials are an option. If your doctor doesn’t do clinical trials, make sure that he or she is willing to send you to a center that has some of those clinical trials.

Create your medical team. That includes the patient, the patient’s family, friends, doctors, nurses, and navigators. It takes a team to defeat cancer.

Tiffany: Share this discussion with your family, friends, and loved ones. As Dr. Slomovitz said, don’t be afraid to have these discussions, especially when it comes to GYN care and health. A lot of times, we don’t want to talk about that as women and that’s something that we need to get around as well.

If you have a symptom that you know is not normal for you, speak up. Go to your provider and get the care that you need.

Dr. Slomovitz, thank you for the work that you do at Mount Sinai Medical Center in Florida and around the globe. Keep pushing the needle forward. I’m very hopeful that five years from now, we’re going to be in a whole different space with endometrial cancer, so I can only imagine where we’ll be 20 years from now.

Dr. Slomovitz: Tiffany, thank you so much. The future is bright and I’m excited about what it brings. I look forward to talking with you in the future when we talk about our victories too.

Stephanie: Thank you so much, Dr. Slomovitz. I couldn’t agree with Tiffany more. Thank you for being a global leader in this space. The rapid pace and shifting of the landscape of treatment options and all the research that’s happening is incredible. Please continue to do the great work that you do.

Thank you also, Tiffany, for leading this conversation to infuse that patient-care partner voice, which is so important for us here at The Patient Story and our community.

Check out ECANA: Endometrial Cancer Action Network for African-Americans and the work that they do. They create a community for African-Americans who have endometrial cancer or have been impacted by an endometrial cancer diagnosis.

Thank you so much for joining us. We hope to see you at another program.


Karyopharm Therapeutics logo

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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Categories
Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Patient Stories Targeted Therapies

Michael’s Relapsed Diffuse Large B-cell Lymphoma (DLBCL) Story

Michael’s Relapsed Diffuse Large B-cell Lymphoma (DLBCL) Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Michael E. feature profile

Michael recounts his journey with diffuse large B-cell lymphoma (DLBCL) alongside his wife and care partner, Kimberly. He was initially diagnosed in 2016 but after experiencing pain in his lower back and leg coupled with severe itching, it led to a diagnosis of a relapse.

After undergoing chemotherapy, he faced severe side effects including weight loss, itching, and pneumonia. He then underwent CAR T-cell therapy, experiencing a brief remission. Michael tried a drug through a clinical trial but saw limited success. Eventually, he turned to epcoritamab (EPKINLY), which has brought about significant improvement without notable side effects and improved his quality of life.

Michael emphasizes the importance of advocacy, seeking multiple opinions, and maintaining hope throughout the challenging journey. His wife Kimberly stresses the crucial role of care partners in managing and supporting treatment and well-being. She emphasizes the significance of self-care for caregivers and persistence in seeking answers and treatment options.


Genmab

Thank you to Genmab 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: Michael E.
  • Diagnosis:
    • Relapsed Diffuse Large B-cell Lymphoma (DLBCL)
  • Initial Symptoms:
    • Back & leg pain
    • Rash
    • Severe itching
    • Decreased appetite
    • Weight loss
  • Treatment:

    • Chemotherapy
    • CAR T-cell therapy
    • Clinical trial (no improvement from study drug)
    • Immunotherapy: epcoritamab

Michael E.

Michael E. timeline

Michael E. timeline



I was having lower back pain and an incredible amount of pain down the front of my right leg.

Michael

We knew two issues were going on, but we had no idea that they were pointing to the same thing.

Kimberly

Introduction

Michael: I was born and raised in Ravenna, Ohio. My wife Kimberly and I have six daughters and 10 grandchildren.

Kimberly: I didn’t know I would be a care partner when we got married, but it was a role I took on. I did it willingly, but it was a rough road.

Michael E.

Michael E.

Pre-diagnosis

Initial Symptoms

Michael: I was having lower back pain and an incredible amount of pain down the front of my right leg. I thought it was a pinched nerve or I’d done something wrong while working out.

Kimberly: We thought it was back trouble. That was coupled with severe rashes and itching. At that time, the two didn’t seem related. We knew two issues were going on, but we had no idea that they were pointing to the same thing.

Testing

Kimberly: The back and leg pain started around Labor Day and the rash started in October. By November, we noticed weight loss.

The Friday after Thanksgiving, he consulted with an orthopedic surgeon since we presumed it was back trouble and the surgeon ordered an MRI.

Michael: My wife pushed, so we got in sooner than scheduled.

Michael E.

They began treatment with the inclination that it probably was going to be diffuse large B-cell lymphoma.

Kimberly

Michael E.

Diagnosis

Kimberly: Based on Michael’s previous history, the doctor said, “We’re seeing enlarged lymph nodes. You have a lot of tumors pressing on your spine and that’s why you have this pain. We’re pretty sure your cancer is back.”

After the MRI, we saw the oncologist he had previously worked with.

Michael: I was diagnosed with DLBCL in 2016.

Kimberly: They ordered a biopsy, but because it was so severe, they began treatment with the inclination that it probably was going to be diffuse large B-cell lymphoma. They didn’t want to hold off on treatment. He had two rounds of chemo when the results of the biopsy came back and confirmed that it was DLBCL.

Michael: We didn’t find out what was going on until we went to Columbus. I will always be grateful to the oncologist in Akron because he had the wherewithal to say, “This is beyond me and I don’t know what to do with this.” He put us in contact with the hospital in Columbus and we met Dr. Voorhees, who took the ball and started running with it.

Kimberly: He was malnourished and dehydrated because of severe weight loss. The majority of the weight loss happened within three weeks.

Michael E.

Michael E.
Reaction to the Diagnosis

Michael: We were not expecting to hear that. When you hear something like that, it sets you back on your heels.

It’s scary because you don’t know what’s going on. Most people who get a cancer diagnosis start by looking for answers and don’t expect it to be serious. Most people think, I’ll get this taken care of and then we’ll move on the next day. Our next day turned into a 2 ½-year journey.

Kimberly: In the beginning, you don’t process because you’re on autopilot and doing everything you can for your loved one, like getting them to treatments and making sure they’re comfortable. Oftentimes, the reality of what’s happening doesn’t sink in.

An example is when we spent Christmas Day in the hospital. That was his initial stay from being dehydrated and malnourished and when he received his first round of chemo. I cooked him a quasi-Christmas dinner in the visitors’ lounge of the hospital.

Looking back at pictures of him, he was on the edge, but because I was so in the moment and going through everything a day at a time, I didn’t realize it then. A lot of the processing didn’t happen until later on.

One of the side effects I had was some of the worst itching of my life.

Michael

Treatment

Chemotherapy

Michael: We started with chemotherapy. I received a high amount of chemotherapy and I about died twice from it. Looking back, it was necessary to save my life.

I wasn’t in very good shape at all. I started at around 240 lbs. By the time we got to Columbus, I was down to 150 lbs. Being in that state physically is not a good place to start.

Michael E.

Michael E.
Side Effects of Chemotherapy

Michael: One of the side effects I had was some of the worst itching of my life to the point where it was causing me to have a different outlook on things. It was horrible. I’ve never experienced anything like that in my life.

Kimberly: When they started a second round, the reactions got worse. That’s when his skin started to blister and he was treated as a burn patient.

At that point, his doctor said, “This is way more than I can handle. I want you to go to the James Cancer Center.”

Michael: They had to come up with other treatment options. Thankfully, they got us through. It was like going through stages. Everything we went through got us to the next step. Then from there, we’d go to the next step. It went on down the line like that for a while. They kept me alive and kept me moving.

CAR T-cell Therapy

Michael: Our main goal was to get to CAR T-cell therapy, but we had to choose interim treatments in order to keep the cancer at bay long enough.

I asked Dr. Voorhees, “What do I have to do to be eligible for CAR T-cell therapy?” He said, “You have to be able to walk into my office.” Ten days later, by the grace of God, I was able to walk into his office. I went from being flat on my back to walking into his office.

I didn’t know anything about CAR T-cell therapy. We learned quickly, especially my wife. She’s a detail-oriented person and because of who she is, we learned quite a bit about how CAR T-cell therapy works. She has a curious mind and doesn’t accept not knowing things whereas I’m more of a big-picture guy. Tell me where we’re going and I’ll be there to do my part.

Michael E.

At the 100-day mark, I had a PET scan and they told us that my cancer had returned.

Michael

Michael E.
Post-CAR T-cell Therapy Monitoring

Michael: At that time, we thought CAR T-cell therapy was our cure-all. We believed that. But it turned out to be another step to get us to where we needed to be.

Relapse

Michael: At the 100-day mark, I had a PET scan and they told us that my cancer had returned. I didn’t feel any symptoms. My energy level was starting to increase. My weight was starting to come back. I was feeling good.

Reaction to the Relapse

Michael: When I receive information like that, I go quiet. I’m an internal processor and I think things through before I comment. I felt angry and frustrated. That was a bad day.

We believed that CAR T-cell therapy was a cure-all. We didn’t know that it only had a 47% success rate. Nobody told us. I don’t know if it was an oversight or nobody thought about it, but to be honest, there was some bitterness on my part because no one told us. But there comes a point where you have to accept things, move forward, and start looking at other options.

The next time we met with Dr. Voorhees, the first thing I asked him was, “Why didn’t somebody tell us that the success rate was less than 50%?” He said, “I don’t know why that didn’t happen.” He didn’t dodge the question. He was very honest with us about it. You don’t want to hear bad news, but you need to hear everything so that you can make good decisions.

I never allowed myself to think that there would be anything negative coming from that. We did everything that’s been asked of us. We trusted it and believed it would work. For 100 days, it was great.

Michael E.

Michael E.

Joining a Clinical Trial

Immunotherapy

Kimberly: We’re thankful that in today’s world, multiple options are available. His oncologist, who we started working with prior to and after CAR T-cell therapy, is always great at providing options. He felt that our best chance for controlling the lymphoma and giving Michael a quality of life would be to go on a trial.

There was a trial that he was aware of, which had some results, and he thought that would be best. We’re very adventurous and very aggressive, so we said, “All right, let’s do the trial.”

He was trying to keep my cancer under control until we could get to the point where we could find something that would work well.

Michael

Michael: I took eight pills a day and had to be monitored. Thankfully, I didn’t have any side effects.

Kimberly: Every day, I’d say, “Oh, you look a little better,” or, “Oh, you gained a little weight.” After several months, it was obvious that it wasn’t having an effect.

Michael: A PET scan showed that the disease progression slowed down but not to the degree that they had hoped. He was trying to keep my cancer under control until we could get to the point where we could find something that would work well. He said, “We’re going to try to move on to some other things because that wasn’t working.”

Kimberly: The good news is that it wasn’t necessarily worse, but there was no change, and there definitely still was active disease so we had to do something else.

Michael E.

Michael E.

Bispecific Antibody

Kimberly: Dr. Voorhees presented us with three options, but he felt that two of them were not viable.

His number one option—and the one I wanted Michael to pick—was another round of chemo because that’s a sure thing. We knew that it would control the lymphoma but not sure how it would play out.

A second option was to have a round of immunotherapy, which he responded to before but wasn’t a sure thing. Michael chose immunotherapy because he said, “Why would I want to be alive if I can’t have a quality of life and actually live?”

That was hard for me as a care partner because I wanted the sure thing. We knew that chemotherapy would knock out the lymphoma and keep it under control, but as a care partner, I also had to respect his wishes.

Michael: I love Dr. Voorhees dearly. He’s a good man. He makes you part of the process. If you start getting off the path a little bit, he’ll gently steer you back on, which I’ve always been grateful for and appreciated.

Kimberly: Based on Michael’s previous response to CAR T-cell therapy and the information from ongoing trials, epcoritamab seemed like it would be our best hope. Dr. Voorhees was confident that we would see at least some response.

Michael: He laid out the options. It was my choice. The choice I made was something that I thought would work best for me because of how my body handled CAR T-cell therapy. Bispecific antibodies were very similar so we went in that direction.

Kimberly: I read about the trial on epcoritamab and I felt that everyone who participated was identical to Michael. They had been through very similar things and that was very encouraging at that point.

We had to apply for compassionate use from the FDA because it was still waiting for approval. Michael had to have some additional treatment.

Michael E.

I thank God every day for the people who came up with the medication that saved my life.

Michael

Michael E.

Michael: I’m on epcoritamab (EPKINLY). One of my greatest hopes and prayers is that people have the opportunity to continue on to tomorrow, to enjoy life, and to enjoy their families.

Right now, I take epcoritamab once a month. I started with one a week and that went on for a while, then it went down to one every two weeks, and then we got to the point where I’m at now. The process takes 30 minutes. I used to take a couple of pills before I received the injection, but I don’t have to do that anymore. I go there, they give me my injection, then I go home.

From where we live, it takes between 2 ¼ to 2 ½ hours each way to drive to Columbus for a five-minute injection. It’s a very small price to pay for the results that we’re getting. Compared to everything else that we’ve been through, that is a very easy solution.

I thank God every day for the people who came up with the medication that saved my life. It was a very long ordeal for us and, thankfully, because of a lot of very intelligent people, epcoritamab was developed, is working for us, and makes a big difference.

Response to Epcoritamab

Michael: Within a month of receiving epcoritamab, my weight started coming back. My strength returned and I was able to do things that I hadn’t been able to do in quite a while. I’m back to 238 lbs and getting to do things that I never used to do.

I’m back to working out a lot, which I enjoy. My wife and I ride bikes, kayak, and play with the grandkids. We love to ride roller coasters and we like to travel. We live life and that’s something that was taken from us.

A lot of things were stripped from me when we went through cancer. I like to have the right to make my own choices and that was very hard for me to accept. To this day, when I think back on what happened, it doesn’t sit well with me. You have to learn to deal with it and get to the point where you find the goodness in things.

Michael E.

Michael E.

Kimberly: The immunotherapy did its job. It was almost as if I could see him transforming weekly. His energy level was up. He was able to resume his activities.

The day that I knew that we had hit a turning point was when he worked for about 10 hours in our yard. He loves landscaping. He’s an arborist by trade. He came inside and said, “I’m exhausted.” The red flags went up and I said, “Oh, no, here we go.” And he said, “No, I’m not cancer fatigued. I’m exhausted from working hard in our yard.” That was the moment I knew that we had turned a corner.

Side Effects of Epcoritamab

Michael: There were supposed to be some side effects, but I didn’t have any. It operates in a similar way as some of the medications that worked well for me, so I thought, If that worked really well, we’ll go ahead and have a go at this. It was a medication that my body accepted and that worked well. I have been at full tilt ever since. It’s a true blessing for us.

Don’t be afraid to ask all the questions that you want to ask. Make sure that you’re getting the information that you need.

Michael

Words of Advice

Michael: Part of the reason why my wife and I are doing what we’re doing is to help. We don’t want anybody to go through what we did. If there’s anything that we can do to help somebody look in another direction, hang on one more day, or give them a little hope that there is a better tomorrow out there, then that’s what we’re doing. We want to help and this is one of the ways that we’re doing it.

Don’t wait. Go see a doctor. If the physician that you are seeing now is not the right one for you, don’t be afraid to switch. At the end of the day, it wasn’t just about me. It was about my family and continuing on to be with them.

When you get to a hurdle that you need to cross, be your own advocate. Be involved in your own care. Find a doctor who will talk to you, not at you. Find a physician who will work with you.

Michael E.

Michael E.

The oncologist that we were seeing in Akron said that this was beyond him and what he was accustomed to dealing with. Once he got the PET scans, the test results, and the first attempt at chemotherapy, he said this was beyond him. I admire him for that because he could have said, “We can try this, this, or this,” but he cared enough about us to say, “This is beyond me.” I have always appreciated that about him.

I’ve always been grateful that he had the courage to say that he wasn’t the person who could do this for me. He could have been prideful and said, “I can handle this,” but he didn’t. He had my best interest at heart. We got pointed in the direction we needed to go, so I’ll always be grateful to him.

Before going to the James in Columbus, we did some research and, for us, it’s one of the premier centers in the United States for cancer treatment so we were very comfortable with that decision.

Everybody we met at the James was wonderful—the doctors, the nurses, the people who make the food, the people who clean the rooms. They were all wonderful people, very kind, very loving, very patient, and not afraid to answer questions. I can’t tell you what a really good organization they have down there so I have no regrets going there. Because they took care of me, I’m here today and I get to enjoy my wife, my family, and my friends. I get to enjoy life. Two years ago, that was not the case.

Don’t be afraid to ask all the questions that you want to ask. Make sure that you’re getting the information that you need. You owe yourself that much.

Don’t be afraid to change. Don’t be afraid to try things. Rely on your family and friends because they want to help. They may not always know how, but they want to help. Allow them to be part of the healing process. It makes a big difference.

There has been some goodness that came out of all this and we’re trying to focus on that now. I’ve tried to forget some of the things that happened because they were so bad. I’m trying to look toward the future and enjoy life the best way I know how.

Have things to hold on to, whatever it takes for you to hang on for one more day. For me, it was religion. If you’re a religious person, God is your rock. We’re a religious family and that was something that helped us get to the next day.

Have hope. I know that’s going to be hard at times, especially if you’re getting bad news after bad news after bad news. Sometimes that happens. Don’t give up. Everything that we did that didn’t work was a stepping point for us to get to the next step, to the next day, and to where we are today. Do everything in your power to not give up.

Michael E.

You and the people around you are a lot stronger than you realize.

Michael

Michael E.

There’s nothing to be ashamed of when it comes to talking to a mental health professional. They can help make a big difference. Sometimes you need to talk things out. You and your family are under a lot of pressure and stress.You have a lot of questions and maybe wondering if you’re going to have tomorrow. That is another avenue that you can take to help you clarify and focus on what you have to do to get to the next day. Being prideful that you don’t show your emotions is not a good thing. No one can do that. Sometimes things come out and that’s okay.

Value your family, the day that you have, and the life that God has given you. Be glad to get up in the morning and see the sun come up. Be happy with small things.

You and the people around you are a lot stronger than you realize. I learned that about my children. You try to protect your children by keeping things from them because you don’t want them to feel pain, but I learned that you don’t have to keep things from them to protect them. They’re there to help you and they will help you in ways that you never thought would happen.

My grandkids would always write me little notes and tell me, “You can do this!” They were right. Family is everything and everything like that matters. The things that used to matter to me are not very important anymore. It helps you focus on what matters.

Michael E.

Michael E.

It has been an experience, but at the end of the day, it’s been a good one. I’m grateful for everything that everybody has done for us and for where we are in life right now. It’s good to be alive, so I’ll do the best I can to enjoy life every day and be happy.

We want to help and that’s why we do what we’re doing. If this makes one person’s day a little better, then we’ve accomplished our goal.

Figure out a way to take care of yourself. It may look different to you than it does for other people, but it’s important and it’s okay to think of yourself.

Kimberly

Kimberly: Advocate for yourself and for the person who you’re going through this with. We all assume that medical providers know everything. They know a lot and we’re thankful for them. However, they’re not with our loved ones day in and day out. They don’t see the subtle changes that happen day in and day out. There are things that you can bring to their attention that they may not catch. It’s not that they don’t know their job. It’s not that they don’t care or that they’re in a hurry. They’re just not with them.

Ask questions. If something doesn’t seem right, ask. The worst thing that’s going to happen is the doctor is going to say, “No, this is correct,” or, “I’ve already taken that into consideration.” The best thing that’s going to happen is you’re going to bring up something that they were unaware of and that could make a difference in care.

Michael E.

Michael E.

I encourage care partners, whether you’re a spouse, a family member, or a friend, to figure out a way to take care of themselves. They say to get rest and ask for help because you can’t give if your tank is empty. All of those things are true, but no one tells you how to go about that.

It’s different for each person. Oftentimes, it’s difficult to think of yourself because you’re healthy and not the one going through treatment or constantly wondering what’s going to happen tomorrow. It’s important that you figure out a way to take care of yourself. It may look different to you than it does for other people, but it’s important and it’s okay to think of yourself.

We were dealing with a recurrence so there were things that we needed to be aware of that someone who is getting a first diagnosis may not.

All the little things matter. If something is persistent, you might think it will go away and it might, but it’s better to find out. If something is persistent and you can’t get any answers, keep asking and keep looking. Don’t defer to, “This is the best we can do,” “We’re not sure,” or, “Try this.” Keep asking.

On this side, it’s easy to say, “You have to have hope. Hope is what got us through.” It’s true. Having hope keeps you going. However, when your husband’s glucose levels are so low that he shouldn’t be able to open his eyes or breathe and you’re not sure how many more breaths he has, hope is hard, but you have to find something to hold on to.

With a terminal diagnosis, that hope may be that you get to spend five more minutes with that person. It might be that you get to spend one more day with that person. Our mantra through the whole thing is that life is good as long as we’re breathing the same air. It didn’t matter if it was hospital air, Hawaii air, bedridden air in our home, but as long as we were breathing the same air, there was hope and that’s what got us through. Find whatever hope is for you.

Michael E.


Genmab

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


Michael E. feature profile
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Michael E., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss
Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)
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Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1



Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation
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Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
Harriet C., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Weight loss, difficulty walking, stomach pain, feeling unwell Treatment: Chemotherapy, EPOCH, methotrexate
Sammie shares her non-hodgkin's lymphoma story
Sammie F., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Chest pain, back pain, bump on neck, night sweats Treatment: Chemotherapy, CAR T-Cell therapy
Alesia A., Diffuse Large B-Cell Lymphoma (DLBCL) Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Fatigue, shortness of breath, swelling, night sweats, anxiety Treatment: Chemotherapy
Tony W. feature profile

Tony W., Relapsed T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL)

1st Symptoms: A lot of effort needed cycling, body wasn’t responding the same; leg swelling
Treatment: R-CHOP chemotherapy, CAR T-cell therapy

Jonathan S., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Severe shoulder pain
Treatment: 6 rounds of R-CHOP chemotherapy, 10 rounds of methotrexate, 12 rounds of focal radiation, autologous stem cell transplant

Leanne T., Follicular Lymphoma Transformed to DLBCL, Stage 3B



1st Symptoms: Fatigue, persistent cough
Treatment: R-CHOP chemotherapy, 6 rounds
Paige C.

Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy
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Stephanie Chuang



Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Kris W.

Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
Robyn S. profile

Robyn S., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL), Stage 2E



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: R-CHOP, R-ICE, intrathecal, BEAM; autologous stem cell transplant, head and neck radiation, CAR T-cell therapy

Barbara R., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Abdomen and gastric pain



Treatment: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851

Luis V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Persistent cough, fatigue, unexplained weight loss



Treatment: Chemotherapy R-CHOP and methotrexate

Nina L., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor

Shahzad B., Refractory Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
FDA approved: October 2017

Erin R., DLBCL & Burkitt Lymphoma, Stage 4



Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)

Emily G., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Pain in left knee
Treatment: R-CHOP chemo (6 cycles), high-dose methotrexate chemo (3 cycles)


Categories
Carboplatin Chemotherapy GemCarbo (gemcitabine, carboplatin) Gemzar (gemcitabine) Kidney Patient Stories Squamous Cell Carcinoma Treatments

Kirsty’s Stage 4 Squamous Cell Kidney Cancer Story

Kirsty’s Stage 4 Squamous Cell Kidney Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Kirsty N. feature profile

Kirsty, a single mother of two from East Yorkshire, England, was diagnosed with a rare and aggressive form of kidney cancer. Reflecting on her journey, she realized that she had been experiencing symptoms for years. During a 2021 check-up for endometriosis, fluid was discovered in her left kidney, but no further investigation was done. For two years, traces of blood in her urine were dismissed as part of her endometriosis.

In May 2023, Kirsty experienced constant flank pain on her left side after a bicycle fall. She also suffered from backache, fatigue, and significant weight loss. Persistent pain led to repeated visits to her general practitioner. In October, an ultrasound showed significantly more fluid in her kidney and a CT scan with contrast revealed the spread of cancer.

On December 1, 2023, Kirsty was diagnosed with stage 4 squamous cell kidney cancer that had spread to some lymph nodes. Though surgery was not a possibility, she began chemotherapy, which significantly reduced the tumor but came with severe side effects such as fatigue, nausea, and nerve pain. Despite the initial plan to do six cycles, she stopped after five due to the intensity of the treatment.

Kirsty was open with her children about her diagnosis, providing emotional support and encouraging them to express their feelings. Inspired by her mother’s battle with cancer, she focused on creating lasting memories with her children. Her approach to life shifted to prioritize meaningful experiences.

She advises others to listen to their bodies and seek medical attention when symptoms persist. She stressed not taking loved ones for granted and valuing time spent with family over work. Through her journey, Kirsty aims to inspire others to cherish every moment and prioritize what truly matters.


  • Name: Kirsty N.
  • Diagnosis:
    • Squamous Cell Kidney Cancer
  • Staging:
    • 4
  • Initial Symptoms:
    • Constant left flank pain
    • Backache
    • Fatigue
    • Weight loss
    • Traces of blood in urine
    • Fluid in left kidney
  • Treatment:
    • Chemotherapy: GemCarbo (gemcitabine & carboplatin)
Kirsty N.
Kirsty N.
Kirsty N.
Kirsty N.
Kirsty N.
Kirsty N.
Kirsty N.
Kirsty N.

Thank you for sharing your story, Kirsty!

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Bill P., Papillary Renal Cell Carcinoma, Stage 3, Type 1



Cancer details: < 10% of kidney cancers
1st Symptoms: Kidney stone, lower back pain, sore/stiff leg, deep vein thrombosis (DVT) blood clot
Treatment: Nephrectomy (surgical removal of kidney and ureter)
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Burt R. feature photo

Burt R.



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

Kevin R., Transitional Cell Carcinoma



Cancer details: Also known as urothelial (invasive), 5-10% of kidney cancers
1st Symptoms: Blood in urine
Treatment: Nephrectomy (surgical removal of kidney and ureter)
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Kirsty N., Stage 4 Squamous Cell



Symptoms: Persistent left flank pain, backache, fatigue, weight loss, traces of blood in urine, fluid in left kidney
Treatment: Chemotherapy (gemcitabine & carboplatin)
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Laura's kidney cancer story

Laura E., Type 2 papillary renal cell carcinoma, Stage 4



Cancer genetics: hereditary leiomyomatosis and renal cell cancer (HLRCC) (Reed’s Syndrome)
1st symptoms: profound fatigue, hypertension, high red blood cell count, severe back pain, badly swollen legs
Treatment: Cabometyx (cabozantinib) assigned under S1500 PAPMET clinical trial
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Laura F., Renal Cell Carcinoma (Clear Cell), Stage 4



1st Symptoms: Severe headaches



Treatment: Partial nefrectomy (surgical removal of one kidney), Gamma Knife brain radiation, stereotactic body radiation therapy (SBRT), nivolumab (Opdivo), Avastin, cabozantinib
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Nina

Nina N., Chromophome Renal Cell Carcinoma, Stage 2



Cancer details: Rare, 5% of malignant kidney tumors
1st symptoms: Blood in urine, blood clots, intense abdominal pain
Treatment: Partial nephrectomy (surgical removal of right kidney)
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Rachel R., Renal Cell Carcinoma, Stage 2



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Kidney Cancer patients describe their first symptoms that led to their diagnoses. Read their full patient stories.
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