Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Lauren, from Houston, Texas, is living with stage 4 breast cancer and stage 4 colon cancer. Her journey began in 2014 when, after breastfeeding her second child, she discovered a lump in her breast. As her doctor initially dismissed it as fibroadenoma, Lauren did not undergo further testing. Two years later, she developed pains in her breast and noticed that her left nipple looked strange, and upon further examination, doctors diagnosed her with stage 3 breast cancer. She underwent chemotherapy, a mastectomy, and radiation, followed by hormone therapy for several years.
In 2021, Lauren began experiencing stomach pains and noticed blood in her stool. Following a colonoscopy, she was diagnosed with stage 3 colon cancer after doctors discovered a cancerous lymph node. She underwent surgery and chemotherapy but struggled with side effects, particularly from the chemotherapy drug oxaliplatin. Lauren also began to explore alternative treatments like high-dose intravenous vitamin C and fasting, inspired by research on treating KRAS mutation cancers, which are known to be particularly aggressive and difficult to treat.
In 2022, after experiencing further stomach pain, a PET scan revealed that the cancer had spread to Lauren’s abdominal lining and spine. Her oncologist gave her a terminal prognosis, estimating that she had around 10 months left to live. Desperate, Lauren intensified her vitamin C treatments, fasting, and other therapies. Remarkably, by December of that year, her PET scan showed no evidence of disease, although her doctor cautioned her to remain vigilant.
Lauren’s journey took another turn when a biopsy revealed that her spinal cancer was not colon cancer but a recurrence of her breast cancer, which had resurfaced and spread while her immune system was weakened. Although she has had to deal with recurring spots of cancer in her spine, Lauren has successfully managed her colon cancer, with her tumor markers remaining low. She credits her alternative treatments, alongside traditional therapies, for keeping her cancer at bay.
Now, Lauren undergoes PET scans every 3 months to monitor her condition. While managing cancer has become part of her daily life, especially with gastrointestinal side effects from her colon surgery, she remains proactive in her treatment and hopeful for the future. Despite the challenges, Lauren emphasizes the importance of staying informed, advocating for oneself, and maintaining hope, especially for those dealing with KRAS mutation cancers.
Name:
Lauren B.
Age at Diagnosis:
31
Diagnosis:
Breast cancer
Colon cancer
Staging:
Stage 4 for both
Initial Symptoms:
Lump in left breast that grew
Strange appearance of nipple
Treatment:
Surgery (radical left mastectomy, lymph node removal; removal of part of colon and appendix)
Chemotherapy (Doxorubicin and Taxol; Oxaliplatin and Xeloda)
Radiation therapy
Hormone therapy
Complementary treatments (fasting, high-dose intravenous Vitamin C)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Nick’s symptoms began a year or two before his diagnosis, including changes in bowel habits, size, and consistency, blood in the stool, and abdominal pain, which he initially attributed to aging or irritable bowel syndrome. After experiencing fatigue and escalating pain, he went to the ER where he was diagnosed with diverticulitis and sepsis. Despite initial treatment, he required a laparoscopic washout due to a perforated colon and subsequent complications, including an abscess.
During a follow-up colonoscopy, doctors found a mass, which was later confirmed as adenocarcinoma. He underwent a sigmoid resection, removing part of his colon. While clear margins were achieved, 19 of 49 lymph nodes tested positive for cancer.
Nick began CAPOX chemotherapy, experiencing severe side effects like fatigue, neuropathy, and an acne rash due to the addition of Avastin (bevacizumab). When they noticed an elevation in his tumor marker and growth in his lymph nodes, he was switched to Keytruda (pembrolizumab), an immunotherapy, to reduce the cancer to a manageable level.
Nick emphasizes the importance of mental health support to manage anxiety. He advises listening to your body, advocating for yourself, and using support systems. He encourages seeking thorough medical evaluation for unexplained symptoms and finding strength in support groups, hobbies, and loved ones, stressing perseverance and finding reasons to keep fighting.
Name: Nick S.
Diagnosis:
Colorectal Cancer
Staging:
Stage 4A
Initial Symptoms:
Change in bowel habits, size & consistency
Blood in stool
Abdominal pain
Fatigue
Treatment:
Surgery: sigmoid colectomy
Chemotherapy: CAPOX (capecitabine & oxaliplatin),
Immunotherapy: bevacizumab, pembrolizumab
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
My symptoms started a year or two before diagnosis. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain.
Introduction
I’m a stage 4A colorectal cancer fighter. My wife and I live in Chippewa Falls, Wisconsin. We have a wonderful 28-year-old daughter.
I’m a full-time firefighter and critical care paramedic. I’ve been doing firefighting for about 16 years and paramedicine for about 13 of those 16 years.
Pre-diagnosis
Initial Symptoms
My symptoms started a year or two before diagnosis with stage 4A colorectal cancer. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain. I had some acid reflux type of reactions that my wife and I chalked up to aging and not being as healthy as I could be. My wife has irritable bowel syndrome and I thought some of it was IBS because some foods would trigger some reactions in me.
I was working full-time for the department for about a decade and a couple of years later, I decided to change over to a neighboring department. For these jobs, we have to pass a physical agility test.
I have been working by myself daily. I was in pretty good shape. The test is a pretty rigorous test to be able to do what we do. I was 48. I was doing this at an older age than the 20-year-olds they were usually hiring.
I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away.
A couple of months later, we responded to a house fire. At some point, my battalion chief pulled me off the line and said, “You look wiped out. I’m going to sit you out for a little bit to catch your breath.” I felt a little tired, but, again, I was getting a little older.
I sat out and went back in for another round. This time, the chief was on the scene and said, “Nick, take your gear off. You don’t look good. Go back to the ambulance. You’re going to be doing rehab, making sure everyone else is doing okay, but we don’t want you going back in.” I thought something was weird.
I called my wife to meet me in the ER. I didn’t know what was going on. I’ve got bad abdominal pain. I haven’t slept. I’m going to go get checked out.
Diverticulitis & Sepsis
I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away. They weren’t sure if surgery was going to be necessary, but they transferred me to another hospital. At that point, I was stable.
When I got transferred, I met with a thoracic surgeon and started to realize that things were serious. He said, “We’re not going to go in right away. We’re going to keep an eye on you tonight. Hopefully, things will subside with some more antibiotics and some steroids, if we have to. But we’re going to keep an eye on you and evaluate you. We’d like to avoid surgery.”
The next day, when they were getting my vitals, the nurses said, “We see you’re slated for surgery.” That turned into a laparoscopic washout. They found that I had a perforated colon in the sigmoid area, the area right before the rectum, but that had healed itself.
All of a sudden, I heard the doctors say, ‘That’s not good.’ I remember seeing a black mass on the screen.
They went in through a couple of small incisions, washed everything out to make sure there was no fecal matter, and stitched me back up. I had a couple of surgical drains. I was in the hospital for five or six days and then I was sent home to heal.
I ended up getting readmitted a couple of days later because I had some drainage coming from my drain sites. After a CT scan, they found I had an abscess. I believe E coli was one of the culprits. There was something else too, so they needed heavy-hitter antibiotics.
After another two weeks of antibiotics, the PICC line was removed. I met with the surgeon and everything was looking great. He said, “Let’s do a follow-up colonoscopy to check how the diverticulitis is.”
Colonoscopy
I wanted to sleep through it. I was joking with them and we were all relaxed when all of a sudden, I heard the doctors say, “That’s not good.” I remember seeing a black mass on the screen. He tried advancing past it and I said, “Ow,” but I didn’t feel it. I said “ow” instinctively. He said, “We can’t get past this mass. We’re going to pull out.” The tone changed. You could have heard a needle drop in that procedure room.
They wheeled me back into the recovery room where my wife was waiting. On the way there, one of the nurses handed me a polished stone that had the word “hope” stamped on it. I didn’t think that choked me up, but I carry it wherever I go. In hindsight, it meant a lot and drove home the seriousness of the situation. We didn’t know exactly what was going on, but something wasn’t right. I have enough medical training and field experience to read the room and know it wasn’t good.
The doctor eventually came back in and said they couldn’t diagnose it yet. They took a small sample to send off for testing to confirm what they thought it was. He wouldn’t say whether it was cancer or not.
The good news was they got the tumor with clear margins. They felt it hadn’t spread far…
Diagnosis
Getting the Biopsy Results
I was waiting for the results at home. When I finally got the notification on my phone, I checked it and it said adenocarcinoma. Now we know what we’re dealing with. It’s cancer of some sort. I never thought about it as a possibility.
Treatment
Sigmoid Colectomy
During the colonoscopy, he said we were going to have surgery because what it was had to come out. He referred me to surgery right away. Luckily, it was the same surgeon who performed my earlier surgery who I trusted with my life.
I met with him about a week later. They were going to do an exploratory surgery until they knew exactly what it was in there and then do their thing.
I remember being in the room when my mother-in-law came out too. My wife was there, of course. They wheeled me in, put in the IVs, and told me to start counting back from 100. I don’t think I hit 95. Hours later, I woke up in my hospital room with a slightly sore throat. They performed a sigmoid resection. I can’t remember how much of my colon they took out, but I didn’t require an ostomy, thankfully. They were able to resect it and reconnect it right away.
The good news was they got the tumor with clear margins. They felt it hadn’t spread far, at least in the tissue of the colon. But the surgeon sampled some lymph nodes right next to the tumor site. They took out 49 and 19 of them tested positive for cancer.
I stayed positive. The whole reason I’m in this fight is my family.
CAPOX Chemotherapy
At that point, I was referred to oncology. I met with my oncologist. His nurse was a former ER nurse who I was familiar with and seeing a familiar face went a long long way.
He explained what he planned on doing based on the CT scans. They saw some inflammation in other lymph nodes and they weren’t sure if that was post-surgical. They wanted to do another CT scan to check, but they were happy about the margins being clear. I was staged at 3C then. It metastasized a little bit past the point of origin but not very far.
The first day of chemo was going to include labs and a CT scan to see where we were at. The plan was to do CAPOX: capecitabine, an oral medication, and oxaliplatin, an IV medication. I would do the oral chemo for two weeks and then on the third week, I would go in for the IV chemo. They would do labs on those days to make sure everything was okay.
Unfortunately, the doctor didn’t like what he saw on the CT. He wanted to get a little more defined imaging, so he set me up for a PET scan and delayed the chemo. A couple of days later, we came back to start chemo again and get the PET scan read.
The doctor confirmed that it had spread to the lymph nodes in the abdominal area, along my aorta, and up to my left shoulder. It had spread a lot further than we thought it had.
I felt like every time we made a plan to move forward, we were getting kicked back a couple of steps, but I stayed positive. The whole reason I’m in this fight is my family. I believe that someday, this cancer will get me, but I’m not going down without a fight. I’m stubborn, so it’s going to be a long fight. I won’t go down without swinging.
I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.
Side Effects of CAPOX Chemotherapy
Chemo wasn’t fun. It knocks you out. I felt fatigued on the first day. For probably a week and a half, when you start getting the infusion, you can’t drink cold drinks. It felt like swallowing glass shards. A lot of fatigue and neuropathy kicked in.
I didn’t like being out in the cold and I love ice fishing. You’ll catch me outside at -20°F on a normal day, but with chemo, not a chance. I had to be bundled all the time.
My eyes were always drying out, so they hurt a lot. I had insomnia, joint pain, and muscle pain.
They added Avastin (bevacizumab), which is an immunotherapy, to my chemo routine. That caused a bad acne rash on my back from the waistline up to my neck. The doctor had never seen nor heard of it, but we can only attribute it to Avastin.
Working While in Treatment
I was able to go back to work full-time as a firefighter. I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.
My work was very accommodating. We’re firefighters, so we don’t sleep all day, but the chief said if I needed to rest, I could go to the dorm, which I appreciate. I never took him up on it. I tried to stay with my brothers and sisters training or doing calls, and that worked great.
I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.
Switching to Immunotherapy
The initial plan was for six months or eight cycles of chemo and Avastin. Unfortunately, because of the restaging, I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.
My tumor marker was through the roof when this all started and it was dropping with chemo. We were seeing shrinkage in the lymph nodes. Chemo sucks, but it’s doing what it’s doing, so we stayed very positive.
When we got to cycle six, we noticed my CEA was going up a little bit. We were doing CT scans every three months and we noticed some growth in the lymph nodes. The doctor said, “We’re going to stop the chemo. It’s not working. You can only receive so much oxaliplatin before it becomes completely ineffective. This saves us a couple of cycles where if we need to go back to it, we can go back to it. We’re going to switch over to an immunotherapy called Keytruda (pembrolizumab).”
The side effects of immunotherapy are supposed to be much less than chemo and I’m all for that. I switched from chemotherapy to immunotherapy in August 2023. I still have very slight neuropathy every now and then in my toes and my fingertips. Nothing debilitating but a reminder that I was on chemo at one point and that probably won’t get any better or any worse, hopefully.
Keytruda is a half-hour infusion. Side effects are minimal. Between cycles two and three, while we were camping, I noticed that my resting heart rate was higher than it should be. I was not exercising as much and a little out of shape, but I shouldn’t have a resting heart rate of 130-140 beats a minute. I was sweating a lot without doing anything, so I couldn’t figure it out. I talked to the oncologist and they ran some thyroid tests.
One of the known side effects of Keytruda is thyroid burn. It’ll cause hyperthyroidism until the thyroid burns out and then it’ll cause hypothyroidism.
The support of my family, my work family, and my friends is what gets me through this.
Treatment Plan
We want to do Keytruda for 18 more months. It’s a two-year plan. We’ll see what it does and go from there. Hopefully, the response brings everything down to normal levels, I won’t have evidence of disease, and I can ride that out for a while.
Fingers crossed, maybe Keytruda is the cure for colon cancer, but realistically, I don’t think so. I think it’ll be a lifetime battle, but it’s going to be a long life. The support of my family, my work family, and my friends is what gets me through this.
Managing Scanxiety
As a paramedic, I’ve dealt with patients with panic attacks and anxiety. Anxiety’s a real thing. A lot of times, it doesn’t seem like it with the patients you’re dealing with, but now that I’m put in that position, it’s a real thing. I’ve dealt with it even before cancer through another set of unfortunate circumstances and luckily, I have a great support group in place.
We see a lot of things as paramedics and firefighters, so after a while, you realize things aren’t normal. I had to start paying closer attention to my mental health. I started seeing a therapist and she’s great. She taught me how to deal with stress, anxiety, and my feelings.
What we go through as cancer patients is not something most people go through nor is it something they understand.
Stay strong and recognize that the stress is real. What we go through as cancer patients is not something most people go through nor is it something they understand. Take a deep breath. Listen to what your mind and body are telling you.
Your feelings are valid. Don’t try to brush it off and try to be strong by pushing your way through it. Rely on your support team. If you have a therapist, talk to that therapist.
Most oncology teams come with a social worker. Use that resource. Rely on your family for strength. Tell your spouse what you’re feeling even when you don’t want to. Sometimes talking about it gets it out there and puts it away, as opposed to it weighing you down.
What helps me is retreating home, spending time with family, or staying busy with work. Rely on your hobbies if you have any. If you don’t, find some. I’m a big fisherman. I love fishing. You could put me on a lake and even if I couldn’t catch a fish for days, I would be in my happy place. Find something that helps you disconnect from the cancer and what you’re going through.
Words of Advice
For anyone who might be experiencing symptoms that you’re not quite sure of, listen to your body. Talk to your doctor. Advocate for yourself. If you feel something’s not right, push for tests to try and figure out what’s going on. The answer, “We don’t know what’s wrong with you,” is not acceptable. Push to find answers.
For cancer warriors who are going through this, keep going. You’re not alone. There’s support beyond your family, friends, and coworkers. There are a ton of support groups online. There are social workers available. There are platforms like The Patient Story.
You’re not in this alone. Some days, it may feel like it. Some days, I get down in the dumps, but I find something to get me back up. I find a reason to keep going. There are a million reasons to keep going and even if you find just one, that’s all it takes.
Listen to your body. Talk to your doctor. Advocate for yourself.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Amy initially noticed a slight change in her stool consistency, which persisted despite normal test results. After a year-long delay due to the COVID-19 pandemic, a colonoscopy revealed a 6-cm mass in her colon. Although the initial biopsy showed no cancer, surgery confirmed cancer in the tumor center and 11 out of 21 lymph nodes. It was stage 4 colon cancer.
She began treatment with FOLFOX, experiencing severe side effects like jaw pain, cold sensitivity, and neuropathy. Despite completing the regimen, a slight increase in CEA levels prompted further tests. A CT scan and MRI revealed cancer in her liver, leading to a relapse diagnosis. Unhappy with her initial oncologist’s pessimism, she sought a second opinion and switched to a more supportive doctor.
Her new oncologist initiated FOLFOXIRI, which shrank the tumors but wasn’t enough to eradicate the cancer, leading to surgery and an ablation. When the cancer resurfaced, she joined an immunotherapy clinical trial. The difference between chemotherapy and immunotherapy was substantial, providing her with a significantly improved quality of life.
Throughout her stage 4 colon cancer journey, Amy emphasized the importance of a supportive medical team, listening to her body, advocating for her health, and maintaining movement and proper nutrition during treatment. She also stressed the need for open communication with healthcare providers about side effects and health concerns.
Name: Amy L.
Diagnosis:
Colon Cancer
Staging:
4
Initial Symptoms:
Slight change in stool consistency
Treatment:
Chemotherapy: FOLFOX, FOLFOXIRI
Clinical trial: immunotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.
Introduction
I’m from the Seattle Pacific Northwest area and I was diagnosed with stage 4 colon cancer.
Pre-diagnosis
Initial Symptoms
I only had one symptom, which was a very small change in my stool. It became slightly looser, but it wasn’t consistent. For most people, that might not be a big deal, but I hadn’t changed my diet. The first time I noticed it was when I had just come back from Spain and I thought it was from traveling. I gave it a few weeks, but it wasn’t getting better.
PCP Appointment
I listened to my body and talked to my doctor about it within a month of this first symptom. My doctor at the time thought it was food sensitivity. They did autoimmune testing for Crohn’s and celiac disease, but those came up negative. They did an allergy panel to see if I developed any new food allergies. That came back normal. I also had my first CEA test, but I had no idea what that was and that also came back normal.
I was blessed to have a doctor who was very proactive and didn’t ignore my symptoms. They knew that I knew my body. What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.
Unfortunately, they couldn’t get me in for a colonoscopy. They did the fecal immunochemical test (FIT) test. They did all these tests and everything was coming back normal.
He recommended me to a dietician who started looking at what I was eating and what we could change that might explain the stool change. My doctor said that since everything’s coming back normal, he wanted to do due diligence to make sure that there’s nothing they might be missing. He said, “Let’s get you in for a colonoscopy.” That was in the end of 2019.
They called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold… Unfortunately, I ended up waiting for a whole year.
Getting a Colonoscopy
They were booked back a few months. I wasn’t considered urgent. Nobody thought I had cancer. I was 39. They said they’ll get to me at the end of January or early February 2020. Then the COVID pandemic happened.
A week before my appointment, they called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold. They would call when they could make it happen again. Unfortunately, I ended up waiting for a whole year.
During that year, I was furloughed, so I was staying at home. My symptoms went away, which confirmed to me that maybe it was something I was eating since I wasn’t eating out.
By January 2021, I got a phone call asking if I wanted to schedule my colonoscopy again. I almost said no and that I didn’t need it anymore because the problem had gone away, but a little voice inside me told me to go ahead and do it. The “worst” thing that they could tell me is that nothing’s going on. I had nothing to lose, so I told them to go ahead and schedule it. They scheduled me for the first week of February 2021.
I didn’t have any other symptoms, like pencil-thin stools, bloating, or pain. Nobody was looking for cancer, especially colon cancer. Most people who get colon cancer are in their 70s and 80s. The first oncologist I had even told me that I was the youngest patient he ever had. Most of his patients were 60 and older, so it wasn’t on anyone’s mind that I could have cancer.
When I did the prep for my first colonoscopy, it was worse than the colonoscopy itself, but it’s a small drop in the bucket out of all the days in my life. On the day I came in, everything proceeded as normal. I got onto the table and they told my husband that the procedure could take up to 30 to 45 minutes. He couldn’t stay with me, so he dropped me off and left.
They put me in twilight sedation so I’m out of it, but the doctor’s voice and tone cut through. She turned to her nurses and said, “Where is her husband? Get him back here right now. Call him. We need him back here right now.”
She didn’t say anything, but because of her tone, I knew something was wrong. I felt my heart dropped to my stomach. I was half awake and the anesthesiologist was trying to put me back to sleep because my eyes were open and I was starting to ask questions. I didn’t feel anything, so it wasn’t traumatic.
The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes.
Diagnosis
Biopsy
When they wheeled me back into a curtained area, my husband was already there waiting for me. The doctor came and said they found a 6-cm mass in my colon.
I waited for the biopsy results to come back and when she finally called, she said they biopsied the tumor, but there was no cancer. However, they were extremely concerned given the size. It was either going to turn into cancer soon or there would be cancer in the center and not on the outside, so they wanted to get me in quickly. Everything was indicating that they had “caught this in time” and that I would just need surgery and might not even need chemo.
Surgery
They scheduled the surgery within three weeks of that conversation. They were on top of it and wanted to get it out.
The surgeon came in to talk to me. The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes. The tumor hadn’t broken through the colon, like they usually see with more advanced cancer, so they were not expecting to see cancer in my lymph nodes. He was very shocked it was stage 4 colon cancer.
I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more.
Oncologist Appointment
My mom was an ER nurse. She also has leukemia, so she hasn’t worked while dealing with that. My mother-in-law is a hematology-oncology nurse at the Mayo Clinic. I’m fortunate to have knowledgeable people who helped me through the next process.
They referred me to my regular oncologist and said he’d go through my stage 4 colon cancer treatment plan. I had a meeting with him and it went okay, but I ended up switching. He told me that I would need clean-up chemo or adjuvant chemotherapy. Everything looked fine. He wasn’t hugely concerned.
Treatment
FOLFOX Chemotherapy
They said I was going to do FOLFOX (folinic acid, fluorouracil, and oxaliplatin) and then we would do a CT scan. They did a CT scan right after the colonoscopy where they found the mass, but they didn’t find anything else. He said it’ll be good.
Getting a Second Opinion
I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more. I knew nothing. Is FOLFOX the standard treatment? What were my treatment options for stage 4 colon cancer?
Different doctors have different preferences and I wanted to ensure I was getting all the information. I made an appointment and brought all of my medical records to make sure. The doctor said they would do the same treatment.
I had a very rare side effect where I had jaw pain… This was a rare side effect of oxaliplatin.
Side Effects of FOLFOX
I did 12 and it was terrible. Before my second round, I had a very rare side effect where I had jaw pain. It was the most excruciating pain I’d ever experienced in my entire life. It radiated from my jaw back up around my neck and felt like somebody had put my head into a vice.
They didn’t know what was going on. I didn’t find out until I switched oncologists that this was a rare side effect of oxaliplatin. They sent me to a jaw specialist to make sure there wasn’t something else going on. I spent the rest of my treatment switching back and forth between morphine and oxycodone because the pain was so horrific.
On top of the nausea and hair loss, the cold sensitivity was bad. I like my drinks either really hot or cold. I don’t like lukewarm drinks. Chemo, especially oxaliplatin, made everything taste like pennies and dirt. I’m a big water drinker and I couldn’t drink water because the taste would make me gag. I started drinking electrolyte drinks to mask the taste. I don’t like sugary drinks, but I needed to get fluids in me so I don’t end up in the hospital. You have to do what you have to do to survive, I guess.
I also developed bad neuropathy in my hands and feet, and that came on suddenly. I was doing fine, but by cycle 10, the pain in my feet started to get bad. I was having trouble gripping things. I couldn’t wash the dishes. I would pick something up and drop it.
When the CT scan results came back, they found something in my liver… they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5.
Post-Treatment Follow-Up
After they finished, they did my scan and didn’t notice anything, so they sent me on my way and said they’d see me in six months. I wanted to see him in three, but he said he didn’t think that was necessary. I said I did, so he scheduled me for a three-month visit, which ended up being fine.
During my six-month visit, my CEA went up to 2 and that was my first flag. My CEA was still perfectly normal, but my CEA had never gone above 1.7. When I had the appointment with my oncologist, I told him this was concerning for me and he said it was a little concerning for him too. It’s a little bit of an increase, but it could still be normal, so he scheduled a blood draw after four weeks.
In four weeks, my CEA was 4.6 and that was abnormal for me. It was still within the normal range because anything under 5 is still normal, but I thought it was concerning. He said we could do another blood draw in four weeks.
By this time, it was around July and he said I wasn’t due for my CT until October. I said I didn’t want to wait until then.
Relapse
When the CT scan results came back, they found something in my liver. They thought it was a lesion because they said cancer usually looks like billiard balls but this looked like a zucchini. At that point, they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5, so something was going on.
They did an MRI and the results looked more like cancer. When they did a PET scan, the results looked even more like cancer. The biopsy confirmed it.
He said, “It’s looking more like it could be cancer.” They hadn’t done the biopsy yet at this point. He said, “If it’s cancer, there’s only a 20% chance you’ll make it to old age. That’s what the statistics tell us.”
I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me.
Reaction to the Relapse
I walked out, got in my car, closed the door, and broke down crying. I was done with this oncologist. This is a horrific journey in itself. I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me. I don’t care what the statistics say. There’s always somebody that’s on one side or the other.
Looking at Statistics
When you get these statistics, they mean something to doctors and researchers, but they don’t mean anything to people personally because you don’t know which side of that line you’re going to fall on. You could have the worst diagnosis and still survive.
I didn’t want to hear the statistics not because I was blind to it but because I knew it didn’t matter to me. The doctors are guessing which side of the line I’m going to end up on and I don’t want to hear their guess. I wanted to know if my treatment was working and if not, what my next steps would be.
She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there.
Switching Oncologists
I went back to the oncologist from whom I got a second opinion and she’s fantastic. She’s the best decision I ever made. One of the first things she did was get all of my scan results. She called my former doctor, requested all of my scan results, and sent them to a couple of different specialists so they could look at all of them. My new oncologist is on top of it and doing CT scans every eight weeks.
She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there. My first oncologist hadn’t even looked at that and it was one of the first things she noticed. It confirmed to me that I made a good decision.
I have this bad luck of getting things that look favorable but don’t end up being favorable. When I had my relapse, they looked at it and said I had a single liver lesion, which isn’t common. At that point, I was still considered curable.
Relapse Treatment
FOLFOXIRI Chemotherapy
She put me on FOLFOXIRI (folinic acid, fluorouracil, oxaliplatin, and irinotecan). I did FOLFOX a few times, but it wasn’t shrinking, so they added irinotecan and it started to shrink.
I went back on the full treatment for six months with very low node shrinkage but with slow growth.
Side Effects of FOLFOXIRI
I was miserable on oxaliplatin. It was terrible. I was sick all the time. The neuropathy in my hands had gotten better, but my feet had gotten worse. I could still do stuff with my hands, but my feet are pretty bad. I also had cold sensitivity, like not being able to eat cold food. Breathing in cold air was like breathing in shards of glass. My oncologist said they didn’t see any shrinkage with oxaliplatin, so she decided to remove it.
I had treatment until February 2023. It was shrinking and looking good, but it wasn’t going away, so they wanted to do surgery to remove the lymph system that had cancer in it. They did an ablation on one spot.
My oncologist wanted to do the ctDNA test to see if I had circulating tumor DNA in my blood. Four weeks later, that came out positive.
She said they usually wait 8 to 10 weeks before doing the first scan post-treatment, but she wanted to go ahead and do an MRI six weeks after surgery. She wanted to make sure because it looked like there was residual cancer.
Unfortunately, my liver lit up. They did a PET scan and there are a couple of spots now. I went back on the full treatment for six months with very low node shrinkage but with slow growth.
The difference between immunotherapy and chemotherapy is like night and day.
Joining a Clinical Trial
I started with an immunotherapy clinical trial in December 2023. The difference between immunotherapy and chemotherapy is like night and day. I’m not sick and tired all the time, so I’m able to go out and do normal activities. I feel like I’m able to have more of a normal life. It’s been fantastic, but I’m still fighting.
This is why it’s important to have a doctor who’s on your side. As soon as my recurrence happened, she went ahead and signed me up for every single trial that they offered. She didn’t ask me because she knew that these trials could have a year’s wait list. She figured that wherever I was, at least I was on the wait list. If a spot opened up, we could have a conversation about it.
When it comes to treatment, you do have a say. Your doctor may have a recommendation, but you have a say in what your treatment plan is going to be. You can tell them if you want an alternative.
A lot of people are intimidated, so they don’t want to tell their doctor what to do. It’s important to remember that your doctor is working for you. Find someone who’s working for you. My oncologist definitely was working for me.
Future Treatment Plans
My cancer is still growing. At any time, I can say I want to try something different. My oncologist and I have had those conversations. Because I’m on a trial, it’s not going to last forever. Unfortunately, I can’t be on this for the next five years. Having been off chemo, I’m hesitant about going back to it. I wanted to find out if there were non-chemo options we could explore, so we’ve talked about other options that are on the table.
With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.
Words of Advice
Know your body and trust your body. If something changes and there’s no warrant for that change, talk to your doctor. Don’t talk to your friends. Don’t go to social media. For everyone else, it might be normal, but if it’s not normal for you, it does warrant a conversation with your doctor. If it turns out to be nothing, you’re not out that much. I don’t think any doctor’s going to be mad that you wasted their time coming to them with your concern. Get rid of that fear. Know your body and know what’s normal for your body.
If anything comes up abnormal, don’t be afraid to go to your doctor and advocate for yourself. Tell them you want to find out what’s going on. With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.
People ignore the early symptoms. Maybe they’re busy, maybe they’re afraid, but I think primarily it’s because people think it’s not a big enough issue to warrant seeing a doctor. If it’s not normal for you, speak up and say something. The best thing that could happen is they tell you it’s nothing. The worst thing that could happen is they tell you it’s something, but maybe they found it before it’s something big and problematic.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Elizabeth was diagnosed with stage 4 colon cancer on March 14, 2019, and, after chemotherapy and surgery, was declared NED in July of the same year. On the first of July this year, she celebrated her 5th year of being cancer–free.
Elizabeth has something of a long history of cancer, having lost her mother to non-Hodgkin lymphoma just over 4 months after she was born; having been diagnosed herself with adenocarcinoma of the submandibular salivary gland, which very rarely affects children, at just 2 years old; and having had a basal cell removed from her face at 25. She has also had a long history of stomach issues. Her colon cancer was discovered when her condition worsened to the point that a CT scan became necessary.
Elizabeth has learned a lot from her experience, and is eager to share her story with other patients in the hope that she may be able to offer both guidance and reassurance.
Name: Elizabeth W.
Diagnosis:
Colon Cancer
Staging:
Stage 4
Initial Symptoms:
Irritable bowel syndrome (IBS)
Small intestinal bacterial overgrowth (SIBO)
B12 deficiency
Hypoalbuminemia
Treatments:
Surgery (removal of left side of liver and small portion on the right)
Chemotherapy (oxaliplatin and xeloda)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.
Introduction
Hi, my name is Elizabeth. I work in the TV industry.
On March 14th of 2019, I was diagnosed with stage 4 colon cancer.
After surgery and chemotherapy, I was declared NED (no evidence of disease) later that same year.
On July 1st, I will have been 5 years cancer-free.
History of Cancer
I have kind of a long history with cancer.
Ten days after I was born, my mom was diagnosed with non-Hodgkin’s lymphoma of the bowel. They gave her 2 years to live, but she made it to just 4 months after her diagnosis. Bone marrow transplants, which is what they do now, had not started yet. They actually started 2 years after she was diagnosed.
When I was 2, my dad noticed that I had a lump in my neck. I’d been born with a cyst under my tongue, so he thought that that’s what it was. It turns out that I had adenocarcinoma of the submandibular salivary gland. I believe I was the first child or one of the first children, at least, to be diagnosed with that type of cancer. It’s way more common in adults.
At 25, I had a basal cell removed from my face. So I joke that I’ve had cancer about 2 and a half times because a basal cell, it’s technically skin cancer.
Pre-diagnosis
So I always sort of had stomach issues. My sister and I, whether it was lactose intolerance or whatever, we’d get stomach aches. And very commonly for us, we would eat something and then we would almost immediately go to the bathroom. It was just something that we always did. And I didn’t really pay that much attention to it because I tested negative for celiac multiple times.
I went to a GI in my early 20s when I moved to L.A., and I tested negative for celiac twice. They gave me an irritable bowel syndrome (IBS) diagnosis, which is just a very blanket diagnosis of any sort of stomach issues.
I then started to get really bad stomach issues, later in my 20s and into my 30s. And at one point I was in Europe, my sister was coming to meet me, and I was in so much pain she had to bring me xiaxin, which is an antibiotic.
I would feel better on the antibiotic for a little bit after, and then the issues would just come back. Nothing seemed to make them go away permanently. As for my sister, she had done a round of vaccine for her stomach issues and they had just gone away.
I went and saw a GI because I was having trouble finishing going to the bathroom. I would go to the bathroom and I would feel like there was more that needed to come out, but I would have to sit and wait for a little bit for it to come out.
So the GI did an exam and he said, everything seems fine, but, I’d like to do a colonoscopy to rule out Crohn’s or colitis. And then he also did a bacterial overgrowth test.
So I got a call from my insurance that said that he was leaving the network the next week, and that I would have to find a different GI to do the colonoscopy. So I got a new referral to another GI. He looked at everything that the previous GI had done. He said, you have IBS with bacterial overgrowth because I tested positive for SIBO.
Then he wanted me to take an antibiotic every night for 6 months to a year. And what he said to me after that was, this is what I think is wrong with you, and I’m never wrong. I didn’t like that answer.
My work in TV keeps me filming about 8 months a year. Every hiatus in the spring, I would go see another doctor. So I got another referral to another GI. I went and met with her in Santa Monica and she said, I don’t think it’s Crohn’s or colitis, but we can rule it out by doing a colonoscopy. But she also said, well, you aren’t having symptoms right now, so let’s just wait until your symptoms come back. And it was my first time as an adult that I went an entire year without any symptoms.
That all changed on March 1, 2019, when I was at work. I will never forget it.
It was a Friday evening. I was standing in front of the house where we were going to film, and I felt like I had pulled a muscle in my side. And I remember saying to one of my friends at work, like, it feels weird because I didn’t do anything that would have caused that feeling. And from that day onwards, I started getting shooting pains from my left side towards my middle, and they would become more frequent and more painful as the weeks went on.
On March 11th, I was at work and I started to just feel ill as well. I took the next day off and went to see another GI. He did all these different tests, and he noticed that my blood work from January, from my physical, revealed that I had very low B12 and very low albumin, and nobody had followed up to do additional testing.
The GI said, you know, we’re just going to run some tests. I would like to do a colonoscopy. You probably have a mild Crohn’s and colitis. So the same thing that everyone else sort of thought was or wasn’t what I had.
Okay, well, I have a month left of work. Is it possible to do it when that’s when that’s done? And he said, oh yeah, of course, no problem. I said, as long as it’s not life threatening. He said, oh no, nothing like that.
The next day, I woke up in the most pain I’d ever been in—I was in so much pain that I could not stand up straight—and I drove 35 miles to Santa Clarita to go to work. But everyone at work was like, you have to go home.
My doctor called me and he said the inflammation levels in my blood were so high. He said, you have to have a colonoscopy on Friday (this was a Wednesday). I was talking to my parents and my dad, who’s a pediatrician, decided he was going to fly down because of how much pain I was in.
My GI initially had told me to start taking fiber on that Tuesday. And then on Wednesday, when he called me, he said, don’t take fiber, switch to Miralax instead. My first bowel movement post-Miralax on that Thursday was covered in blood, and it was the first time I had ever had blood in my stool.
I reached out to him and he said, that’s perfectly normal. It’s what we would expect because of the levels of inflammation in your blood. I wouldn’t worry about it, he said.
Discovery and Diagnosis
However, my GI and my dad had spoken on the phone and they decided they were going to send me for a CT test. So that Thursday, March 14th, I drove to UCLA to have my CT exam. My dad was flying in and was going to meet me at UCLA.
I had the CT exam, and when I was done, my dad showed up. I was still in pain and extremely nauseous. We drove to Rite Aid to buy something, but I was feeling so bad that I couldn’t leave the car; my dad had to run in.
When I got home I immediately ran into the bathroom and started throwing up. But in the middle of all that, my dad walked in with my cellphone on speakerphone because my doctor had called back.
The doctor says, I’m so sorry, but you have a tumor in your colon and spots on your liver and you have to go to the hospital.
And my dad whispered, it’s happening all over again. Because my mom had non-Hodgkin’s lymphoma of the bowel. It wasn’t connected through cancer, but it was in roughly the same location.
And then my doctor called me back, he was able to get me a bed. Just go to UCLA, he said. I packed and we drove over.
We arrived at UCLA and got settled. The next morning, they brought me in for the colonoscopy.
If you have a blockage in your colon, no matter what stage you’re at, if it’s bad enough, they’ll do an emergency surgery and just take out that part of the colon right away. They were successful and were able to place a stent.
The next day I met Dr. Agopian, who ended up being my liver surgeon. He had a refreshingly different approach from the others I had spoken with. He walked into my room by himself, sat down at the screen, and turned it to face me.
Dr. Agopian pulled up my scan and he said, you have three spots on the left side of your liver and one on the right.
Dr. Agopian said, I want to take out the whole left side of your liver and this spot on the right, it’s right on the edge. We’ll just cut it out. And then he looked at me and he said, let’s cure this thing. And he added, well, we’ll do a few rounds of chemo and then if it’s the same or better, you can have surgery.
Reaction to My Colon Cancer Diagnosis
So after I was first told I had colon cancer and spots on my liver, I remember sitting on the floor and there were a few first thoughts.
My friend Stacy was diagnosed with breast cancer when she was pregnant with twins, and she passed away before they turned two. At their first birthday, she had said to me that she had bone spots. I remember calling my dad and asking him what that meant. My dad had said to me that any time cancer leaves its origin, it’s only a matter of time.
So when he said I had liver spots, my first thought was, oh, I’m going to die. And then my dad left to go call my stepmom. I sat on the floor and my first thought was, this is so stupid. I just was like, I can’t. It just didn’t make any sense.
And then on the way to UCLA, I don’t remember if we really said anything. I remember having conversations with myself, and I was just sort of going through all of the things that I’d done. I’ve traveled a lot. I’ve been to all seven continents, like you’ve lived, you’ve had a really good life.
And we get to UCLA and headed to my room. The woman said that they were going to do a biopsy and colonoscopy in the morning, and so they were going to do 3 tap water enemas that night. My dad went to find lodgings for the night and my stepmom was going to fly in the next morning. So I was all alone in the room.
I just remember sitting in that hospital room and basically knowing already that I had stage 4 colon cancer. It’s a very strange thing because no one had confirmed anything yet and I didn’t have a biopsy, but I already knew.
For a period of time, I was explaining what was going on, but the minute that I would have to say I have stage 4 colon cancer, I would just lose it. And so I didn’t tell. A few people, like those from the show that I was working on, showed up in ways that they didn’t have to. They had always been extremely loving and caring towards me.
But Dr. Agopian made a real difference. He was the first person that sat down and explained things in a way that was practical and straightforward. Okay, here’s plan A, here’s plan B, here’s plan C. These are the options. These are the things that we can do. And I felt so disconnected from everything that was going on until this man walked down and just said, this is what’s happening. This is what we’re planning on doing.
He for me was like a light, like a beacon of hope that nobody else presented. And I held on to that so tightly because nobody was giving me anything else.
Treatment
I was in the hospital from Thursday to Sunday. I only stayed in the hospital as long as I did because I kept getting fevers at night. They couldn’t find any infections. They couldn’t figure out what my fever was caused by, either; there wasn’t anything else going on. I basically had to stay until I stopped getting fever.
And then I got better and was released. My parents initially told me to come to Northern California, where they live, because they knew the head of oncology at UCSF and they’re like, you’ll come up and do this at home. But I said, thanks but no, I’m not leaving my house. If I go home to do this, my entire existence revolves around me being sick, away from all of my things and my cat and so on.
So they gave me the names of a few different oncologists and reached out to their friend at UCSF for referrals to UCLA as well. They came back with two of the same three names. And after a couple of initial calls I finally got to talk to an oncologist, and my sister and parents flew down to meet him.
Chemotherapy
I had my first round of chemo on April 2019 and ended in November 2019. I took oxaliplatin and xeloda.
After that, I did a scan. I had been told, if my scans were good, we would cancel the chemo appointment. If they’re bad, then I’d need to stay and do another round of chemo.
And I had asked my doctor because the liver surgeon had said it just has to be the same or better. And I said, how often is it the same or better? He said 75%. I think it was 70 or 75% are the same or better on oxaliplatin and xeloda after three rounds. But I was taken aback when I got a phone call and was told that my appointment had been cancelled, my doctor was taking a leave of absence, and I had to find another doctor while he was gone.
So I paged my nurse practitioner, and I said, well, I want my scan results. And she said, oh, your colon cancer tumor, you can’t even really see it anymore. And all your spots shrank.
I then called the liver surgeon’s office, Dr. Agopian’s office, and was told that he wouldn’t be back until Wednesday. But then I got a phone call back and was told that I was going to have surgery and that I needed to meet Dr. Agopian and my colon surgeon on Friday.
I immediately called my friend who lived in Hawaii, and I scheduled a flight to Hawaii on Saturday, right after the meeting with the doctors, because I wanted to have a bikini vacation before they cut into my stomach.
Surgery
So during the Friday meeting, we scheduled my surgery for July 1st of 2019.
There was an initial concern about the date; my dad went, oh, it’s July 1st. It’s the day in every hospital where everybody moves up a level. A lot of people don’t have surgery on July 1st. But it turns out that none of the doctors assigned to me would be affected, which was great.
I underwent the surgery as planned on July 1, 2019.
Remission
One or two weeks later, I went in for my follow up appointment with Dr. Agopian. He came in and he said, is anyone giving you your pathology yet? I said, no.
And he said, the cancer cells in your tumors, they’re all dead. At that point I’d had 3 rounds of chemo out of the 8 that I was supposed to have, and I just sort of went, oh, okay.
And then a day later, I came in to see my colon cancer surgeon and he walked in and goes, Agopian stole my thunder. And they were like so excited. But again, my oncologist was gone and so I didn’t quite have that conversation.
I went to a new oncologist and he’s going through my file like he hadn’t even looked at it yet. And he was just like, oh, this is good, this is good.
And then he goes, you’re in remission. I called my sister after and I was like, didn’t sink in and it didn’t feel real. And then finally when my oncologist came back and said, you know, they say NED, which is no evidence of disease.
I finished my colon cancer treatment in November of 2019. I dropped the oxaliplatin because I had a allergic reaction on round 6 and broke out into hives. So I just did the xeloda for my last few rounds.
I got scanned every 3 months, and then it went to 4 months. And on July 1st when I go in to see my oncologist, for my 5 year scans, I then get a say in how long we’ll have a discussion of how often we’re going to do the scans versus the Signatera, which is the blood test where they can test for tumor markers in your blood.
… you will not always feel [bad] because in the first round you don’t know when it’s going to end and you feel like it’s never going to end.
Lessons Elizabeth would like to share
Radical Hope
During the course of my treatment, one of her friends had said it was really interesting because she was having conversations with one of her friends who was a doctor, and what the friend had said to her was, there’s no reason not to have radical hope.
So radical hope sort of became my thing.
I’m not religious. I don’t believe in God. But that being said, there is still a sense of whatever happens, happens, and what’s meant to be will happen. So that always gets very complicated for me.
The Possibility of Death
I was just very practical about it. Like most people don’t survive a stage 4 diagnosis. The statistic I think is, 12 or 14% of stage 4 colon cancer patients are alive 5 years after their diagnosis.
If you are a stage 4 cancer patient and you are friends with other stage 4 cancer patients, most of them are going to die. That was a really hard thing to deal with. And then I also struggled a lot because people kept saying things like, you’re the strongest person I know. If anyone can beat it, you can. And every time someone would say that to me, I’d be like, oh, I’m definitely dying.
It’s such a weird pressure because what if I die? Then have I let all these people down? Was I not as strong as they thought I was?
I’m not a warrior. It’s not a battle. It’s a disease. I didn’t sign up for this. I’m not a soldier. I think Norm McDonald said, um, when you die, the cancer dies with you.
I always appreciated that because I think that people mean well, again. But, like, I’m not a warrior. I’m not out fighting. I’m on my couch watching Parks and Recreation, trying not to throw up.
Putting up a strong front
It’s this idea that you have to be this strong front to everybody. And it’s like, no, we’re tired.
Like we’re tired and we’re cranky and we’re annoyed and like, I was so hot and people, very lovely people kept sending me blankets and I was like, I just, I’m so hot. And one of the main side effects of oxaliplatin is that you can’t eat, drink or touch anything cold. I had a very high cold sensitivity, so I was always having to drink hot drinks, hot chocolate, hot apple cider, hot water and lemon.
The last thing that I wanted was to be wrapped up in a blanket. But I really appreciated everybody that sent them to me.
If I am miserable on top of how terrible it is, what’s the point then? So I’m going to try to have the best time, like you’re going to try to make the best out of a bad situation. And it’s hard to do.
But I had incredible people that stepped up and came and took care of me, and there was so much good that I got to experience.
Reaching out, giving back
I recently donated my hair. I did it when I was diagnosed, also because with colon cancer, with the main chemo, you don’t lose your hair. But I was so overwhelmed with all of the love and the gifts and the things that were coming to me. I donated my hair after my first round of chemo, and then just 5 years later, I donated it again.
Any time that I felt like I could give back in any way, that was really important.
People are nice to you because you have cancer. Everyone seemed to go out of their way to offer things. And I think that’s also the other thing, it was really difficult for me to ask for specific things.
So everybody stopped checking in on me and it was like, oh, because everyone said, I don’t want to bother you. And I just would say, it’s not about like telling someone you’re thinking of them or, hey, I’m going to stop by with, you know, X, Y, or Z. I think those are sort of things that are super helpful.
And for me to be able to share as a stage 4 patient, to give hope to other stage 4 patients, that there’s someone in front of them who is going through it, who went through it somewhat recently and is okay. And that can be a little bit of pressure of like, I get nervous that if I do have a recurrence, I’m somehow letting everybody down.
It feels like a very strange space to live in. But again, things like this. I’m so grateful to be able to share my story with other people who will be able to watch this and know that there is a light at the end of the tunnel, or that there are things that they can do to help themselves.
I think that everyone’s experiences are going to be different. The fact that colon cancer is now the number 1 cancer death for men 20 to 40, and it’s the number 1 cancer death for men and women combined 20 to 40. And we still aren’t doing colonoscopies for people. I think that that’s the big thing that needs to be addressed.
Access to colonoscopies, access to Cologuard, access to things that are clearly needed because the number of people that reach out to me, women in their 20s on Tech Talk who will message me and say, I made my doctor do a colonoscopy, they said they weren’t going to find anything. They did a colonoscopy. They removed precancerous polyps and they said, you saved my life. And I think that the price of a colonoscopy, the access to health care, all of these things, it’s going to cause so much more issues because the number is rising. It’s something environmental. My geneticist says they don’t know what it is.
And for people that were born in the 80s and 90s, I just think that access to colonoscopies needs to be a bigger thing on everybody’s mind. I will also say that I did call my doctor’s office of the gentleman who said, this is what I think is wrong with you, and I’m never wrong. I spoke to the office manager because I wanted to make sure that he knew that he was wrong.
Mental health struggles
The big thing that people don’t sort of warn you about is that everyone’s around you and it’s very structured. And then once you finish, you don’t have that anymore. And that to me is when my mental health tanked.
I really struggled as my friends were starting to pass away from treatment, being a former stage 4 cancer patient who doesn’t have cancer any longer. But maybe it’s Schrodinger’s cancer, right? You don’t know until the day you have the test and the day you have the test. You know that that day you didn’t have cancer. That can be very difficult.
I started to have panic attacks and had to stop working on the show that I was working on because my mental health got so bad. Actually, I had a panic attack so bad I couldn’t drive for about six weeks. I didn’t think I’d be able to work again.
My primary care doctor at the time wouldn’t prescribe me anti-anxiety meds. He wanted me to rule out anything medical. So I went through endocrinology, ENT, cardiology, neurology. I had a brain MRI to make sure I didn’t have cancer in my brain. I saw every doctor under the sun. But the problem is, they were all specialty. They come in, they do their test, and if it’s not them, they just leave. So I was just constantly feeling abandoned by all of my doctors and my primary care doctors.
And then finally I made it through all the different doctors. I was feeling suicidal and was really struggling. It was really upsetting that no one was sort of listening or paying attention and feeling really guilty because I survived. I couldn’t live the way that I was feeling, the way that my brain felt. I couldn’t sustain that and I felt like nobody was paying attention. To anything other than their specialized thing. And so I had guilt on top of everything else. My brain just felt like it was fighting me all the time.
And the mental health aspect of chemo as well, which my friend Megan called black cloud days when you were having a bad day. I was talking to someone and I kept saying, it’s okay to have a black cloud day. And her husband kept saying, but we’re always going to look for the sun. And I was like, but you have to allow yourself to sit in what feels bad sometimes.
The better we felt, the worse we felt mentally during our cycles, because the better you felt physically, the closer you were to going back and having another round. You physically felt better, you were able to do more things, but you knew that the better you felt, the worse you were about to feel. And so I think that the structure of how you can help somebody who’s going through chemo and everybody is going to need something different.
Resources that can help
I think that whatever little thing you can hang on to and help you find your people, you should explore.
ColonTown is a great resource on Facebook. And TikTok has become another big thing for me. I created a TikTok account to spread awareness for colon cancer and young people, but also the idea of struggling with mental health after your cancer finishes because nobody talks about it. There isn’t as much support for that. There’s support when you’re going through it.
UCLA has free psychiatry, psychology services. You can get a therapist, and I had a great one. Not enough attention is paid to your mental state after your treatments are finished. And so that’s always been a really big thing for me, which is, people say, oh, but you’re better now. And it’s like, you’re never fully better. It never goes away.
I should also say that I craved oranges, and I learned later that oranges are an anti-nausea food, and pregnant women drink them and people on boats when they’re getting seasick.
Solutions
I had a meeting with a psychiatrist who I just saw to prescribe me meds that I should have been given six weeks earlier. And within two weeks it completely changed everything in my life. And I also now have a new primary care doctor who is lovely.
I’m wearing my Chadwick Boseman T shirt. It’s all of the lost potential of a human being that colon cancer took away. Like colon cancer took away massive potential not only from Chadwick himself, but from every person that that passes away.
And I think that the struggle of having cancer, of dealing with cancer, and then dealing with its aftermath is something that is really important, and I would love to figure out a better way to sort of platform all of that.
I’m going on a beach vacation with my sister and her friends, next week to celebrate five years, I have my scans on the 28th.
I’ll meet with my oncologist on the first, and it all seems like a fever dream, because when you first get diagnosed and when you’re in it, it feels so far away.
“Snowboarding”
When I went in for my first round of chemo, I sat next to a man who was a couple years older than me. His colon cancer had spread to his esophagus. And I was so scared and so unsure of what was coming and what to expect. And he was on his 5th round.
He sat there and walked me through everything that I could expect. He talked about the cold symptom called broken glass syndrome. If you eat or drink anything, even walking too quickly, the air that you inhale is too cold and it can set off different things. He just talked me through everything in such a gentle, sweet way.
I have shared with every single person that I have talked to about this because a lot of people reach out on TikTok or on Instagram, I have many conversations with strangers who have just been diagnosed, or have friends or family that have just been diagnosed, and I walk them through everything like he did for me.
What he said was, on my good weeks, I go snowboarding. And so in my first round when I was having my worst day and I felt like I couldn’t do anything and I couldn’t move, and I felt so terrible in my head, I just kept repeating, he went snowboarding.
He did not go snowboarding feeling like this. So you will not always feel like this because in the first round you don’t know when it’s going to end and you feel like it’s never going to end. And so I just kept saying in my head, he went snowboarding. And that to me was the hope that I would get better.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
Courtney, a high school English teacher from Spokane, experienced symptoms such as fatigue and blood in her stool that led her to suspect she had colon cancer. Despite initial dismissals from multiple doctors due to her age and lack of family history, Courtney persisted in advocating for herself, ultimately undergoing a series of tests, including colonoscopies and scans, which confirmed her suspicions. Diagnosed with stage 3A colorectal cancer, Courtney underwent surgery to remove the tumor and lymph nodes, followed by chemotherapy as a precautionary measure.
Throughout her treatment journey, Courtney faced various challenges, including side effects from chemotherapy such as hand-foot-and-mouth sores and neuropathy. Despite these obstacles, she pushed forward, continuing to teach full-time and engaging in physical therapy to regain her strength. Three years into remission, Courtney emphasizes the importance of self-advocacy, listening to one’s body, and pushing for answers, especially when faced with medical dismissals or ambiguity. She encourages others to trust their instincts, seek support from loved ones, and persevere in navigating the healthcare system to ensure proper diagnosis and treatment.
Name: Courtney H.
Diagnosis (DX):
Colon Cancer
Staging:
3A
Symptoms:
Blood in stool
Fatigue
Treatment:
Surgery
Chemotherapy
Capecitabine
Oxaliplatin
Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.
Courtney H.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
My name is Courtney. I am a teacher. I teach high school English – specifically honors 9 English and mythology. I am a big lover of reading. I like to play outdoor volleyball, garden, and explore. I live in Spokane, in the Pacific Northwest. It’s so beautiful. We have four seasons and lots of activities and different things to do. I like to spend time with my niece and nephew.
What were your first symptoms?
I took an anatomy and physiology class in college, and one of the only things I remember from that was that the professor said, “Most often when you have internal bleeding of some sort, it is your body’s inability to heal itself, and that usually comes in the form of a tumor.”
What had happened was I had gotten a teaching job in Othello, where I grew up, and I moved down there. This was August of 2020. I was a very busy new teacher. I was the head cheer coach for a cheer program. I worked a lot of jobs in grad school, and so I just was very used to being on the go all the time and having a busy and packed schedule.
I knew I was sick. I knew I had colon cancer, so I just kept pushing.
When I moved to Othello, I started showing one symptom – I had blood in my stool, and I instantly knew. I knew instantly that I had colon cancer. Moving down to Othello, I had to get all of my records and everything transferred down there, including all my medical stuff. So I wasn’t able to go in and see a doctor until October. My symptoms kept progressing, and I just knew when that started happening. I was trying to find somebody that could help me find the exact diagnosis. The answer.
Did you have any additional symptoms?
Just blood in the stool and fatigue. My friend’s mom, who’s a nurse, did a blood test on me and she said I was very anemic. What we ended up finding out when they had taken the tumor out is the blood flow was feeding the tumor, and that’s why I was so anemic.
The first general practitioner doctor I went to, he dismissed all my symptoms and said, “There’s nothing wrong with you. You’re thin, you don’t have a family history. You just need to make some dietary changes.” I was like, “Well, I’m going to keep trying to find answers.” It was in the middle of COVID, so everything was pushed back. Then symptoms kept getting worse. When I came home for Christmas break – home was Spokane – I saw a different doctor and it was the same thing. He spent about an hour with me, ran some tests, dismissed all my symptoms, but I knew I was sick. I knew I had colon cancer, so I just kept pushing.
The first doctor in Richland, he actually had put in a referral for me to see a GI specialist. I was able to see a GI in January of 2021 and [experienced] the same thing. She dismissed all my symptoms. Finally I said, “Listen, this isn’t about you being right or me being right. This is about figuring out what’s wrong. You’re speculating and I’m speculating.” They were all saying, “We think you have Crohn’s or diverticulitis, diverticulosis, or a bleeding hemorrhoid.”
One of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body.
I said, “No, I think that I’m sick. What can we do?” She said, “Well, we can give you a colonoscopy. You’re too young and they’re very expensive.” I said, “Well, I’m a teacher. I have great health insurance. We need to do this. I think it’ll give me peace of mind knowing that we have tried everything.”
Receiving a colonoscopy
Months later, she did a colonoscopy and found the tumor. That was February of 2021. That whole month and a half that I went through 9 different tests. I did 3 colonoscopies, a sigmoidoscopy, 2 CAT scans, a PET scan, and an MRI. There’s another one I did but I can’t remember the name of it. All of those tests brought me to the diagnosis. Now what are we going to do? What’s the plan of action going to be? I got a team together.
What tests did the first doctors do?
He did a blood test and some general stuff. He felt my stomach to see if I had any lumps or bumps. Then he went through and looked at family history. Obviously, I don’t have a family history of it. He said, “You’re thin, you’re not pre-diabetic.” I was in Richland, Spokane, and then I went to Kennewick. So three different cities, three different doctors. The doctor in Spokane pretty much did the same thing. They didn’t do anything extensive because you can’t really diagnose it unless you actually get a colonoscopy.
The problem was, neither one of those two doctors could perform that. Then they just dismissed my symptoms. They said, “Well, we’re not going to put in a referral for you to have a colonoscopy because we don’t think, from our experience, that you have it. I really had to beg the GI specialist to give me one.
We did a blood test with the first doctor and he didn’t see anything abnormal. Then the doctor in Spokane didn’t really see anything abnormal. But my friend’s mom, who’s a nurse, knew what to look out for because I told her what was going on. She did her own test and said, “You are severely anemic. Something’s going on.”
Did your insurance cover the cost of the colonoscopy?
I paid a little bit out of pocket, but it was mostly covered. The problem was, and this is something that I think a lot of people run into when they’re getting tests done, especially a colonoscopy or sigmoidoscopy. My insurance company did not want to pay for the right type of drugs. I didn’t know that. I didn’t hear the confirmation. They actually had to tell my parents, and it took 8 hours for the drugs that they gave me to wear off. So I actually didn’t find out about the tumor until the next day. My parents waited to call because they tried to talk to me after the procedure and I was just bonkers.
Surgery
The importance of advocating for yourself
They dismissed the symptoms because I didn’t fit the profile, but one of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body. I just knew I was sick. I had that feeling in my stomach. Sometimes science can only go so far, and sometimes you have to put it in your own hands and keep pushing for it. It was a unique set of circumstances, because when I did my colonoscopy, COVID cases were very light, so I was able to go in and get a colonoscopy. When I had my surgery, COVID cases were really light, so they didn’t push my surgery back. These were just perfect little windows where things ended up really working out in my favor.
Formulating a treatment plan
Because I didn’t have the right drugs, she couldn’t finish the colonoscopy. I would have to come back 4 days later and do another one. I came back that Friday. I had [the first one] done on a Monday, came back that Friday, and everything else looked clear. She said, “I’m 98% sure that this is a cancerous tumor. We’re going to send it off to have it biopsied.”
It took two weeks to get back. The next conversation, I said, “I know a surgeon who saved my dad’s best friend’s life. He had stage 4 rectal cancer and he’s been in remission for 20 years. I want that guy.” She was going to put in a referral for somebody else. I said, “No, I want this guy.” Then everything started to move, all the tests.
After all of the tests came back – because the original plan was to do some radiation, 6 weeks of chemo, and then do surgery after the MRI, – the radiologist called me and said, “This is miraculous, but your tumor is a lot smaller than we thought, so we’re going to operate. Nothing else is lining up in your body, so we’re just going to go for it and operate.” So they did.
Describe your surgery
Dr. Holbrook went in and did a lower anterior resection and took out part of my colon, 21 lymph nodes, and my appendix. He said, “I had a stage 4 appendectomy patient who’s 17 years old last week. I just thought I’d take your appendix out.” He spent about 4 hours in surgery. He just retired last year, but he’s one of the best in Spokane. I trusted him.
The prep work was I had to go onto a liquid diet about 48 hours before. They gave me some things that they wanted me to take prior. After I was in the hospital for about 4 days, I had a series of things that I had to go through to get out of there. I had round the clock bloodwork. They would come in at 2 a.m., they’d come in at 6 a.m.. They were checking fluids and different things like that.
As far as the procedure, he just went in. He didn’t tell me how much of my colon he took out, but he took out the sigmoid region of the colon. That’s the end. He took that part out and did the lymph node pluck. After that, I was on a liquid diet for about 3 weeks, giving my bowels a break and allowing things to heal. He was able to go in and do it minimally. The incision where he went in was about this big. He was able to go in right underneath my stomach and do it.
Chemotherapy
What stage were you in?
We got a really good prognosis back. I had a stage one tumor. There were just a few little cancer cells that had broken off and gone into one lymph node, so I had a really good prognosis.
Preserving fertility before starting chemo
I had my 3 week clearance from surgery, and then I actually harvested my eggs, and then I did chemo. It was boom, boom, boom. My body had been through some things. Harvesting your eggs is quite an interesting process. I didn’t know this. When you go through and you do all the things, they monitor you, they take your temperature, they do all the things.
The day before my procedure, they did a COVID test on me and it came back positive. I didn’t know I was asymptomatic. Seattle Reproductive had to fight with Seattle to advocate to harvest my eggs because it’s a $15,000 procedure. They ended up saying, we’re going to suck it up, risk it, and do her procedure. Then I started chemo right after I was cleared from COVID.
I didn’t have to do chemo because of my prognosis, but my surgeon and team recommended that I do it as an insurance policy. I was prescribed 2 different types. I had an infusion chemo which entered through a port and a pill chemo. I would do one infusion every 3 weeks. Then I was on pill chemo for 2 weeks at a time and I’d get a break at the end of it.
Which chemos were you on and did you have side effects?
Capecitabine. The infusion chemo was called oxaliplatin. I had side effects with each. With capecitabine, I had hand-foot-and-mouth, where you get really bad sores everywhere. The other chemo was oxaliplatin. It’s a platinum chemo. It had some really strange side effects. You couldn’t touch anything cold. You couldn’t ingest anything cold. I couldn’t drive in my car with the AC on or it could close my throat. Everything had to be room temperature or hot.
It was in the middle of the summer, so one of the biggest issues I ran into was I was dehydrated a lot. I was hospitalized 2 different times for dehydration which was scary. I lost a lot of weight. I think I lost about 25 pounds. I tried to eat when I wasn’t hungry. I had to watch what I ate. They tell you you can’t have raw fruits and vegetables while you’re on chemo, which is so weird because you should be eating healthy foods, and they said to eat what I could.
The first two days after infusion chemo and pill chemo, you’re the sickest, you’re nauseous. It’s really, really hard to get up and move around. With oxaliplatin, like I said, it’s a platinum chemo so it causes neuropathy. You have a lot of tingling going on in your body. It got to the point where my eyes were affected by it. I could taste it in my mouth. It was very all-consuming throughout my body.
Stopping oxaliplatin
I did my own research about my particular prognosis and I decided to stop oxaliplatin after 4 rounds. That’s the infusion chemo. A lot of patients push past that, and there are some patients that end up disabled from doing that chemo. I did not want to do that. I didn’t want to risk that. It was making me so sick that I could barely eat.
Did anything help alleviate your chemo symptoms?
When I was dehydrated, I would go in and get pumped with fluids. That helped. I did take Zofran to help with the nausea. You can’t be in the sun either when you’re on chemo. You have all these things that you can’t do.
The best thing that helped with the side effects was to get my mind off of it.
I think for me, the best thing that helped with the side effects was to get my mind off of it. I taught full time while I was on it. That was my choice. I didn’t want to lay in bed every day and dwell on it. That’s just my personality so I decided that I was going to work and let that be the thing that would help get my mind off of it. I did oxaliplatin for 3 months and capecitabine for 6 months.
When I went back to school to teach, I did physical therapy and that helped a lot. It helped me build up strength because I had lost so much muscle mass and lost so much weight and it helped with getting through those days.
Reflections
How long have you been in remission?
I am almost at the 3 year mark of being in remission. I count it as April. My oncologist counts it as November because that’s when I finished chemo, but I think that the surgeon got everything.
How often do you get scans and do you experience scanxiety?
I don’t think that it ever really leaves you. I think that it stays with you.
I just hit the 2.5 year mark, so now I go every 6 months. I think that’s one of the hardest parts. I was joking with a friend that I’m a part of an exclusive club now because it doesn’t really ever leave you. With scanxiety, I just do my best to just try and stay positive. It’s always quite exhausting because it’s a 4-day process – blood work, scan, and meet with your doctor.
My aunt is a phlebotomist, so she’s always encouraging, giving me tips on how to stay positive and hydrate, make sure you’re ready to go. But it is a real thing, and I honestly don’t think that it ever gets any better. I think that you learn how to manage, how to live with it. The farther out that you get, you feel better. But I don’t think that it ever really leaves you. I think that it stays with you.
What advice do you want to share with cancer patients?
Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.
You need to advocate for yourself and you need to be able to listen to your own body. Science only goes so far. Knowing, understanding, and listening to your body is really important. Because if you’re sitting in front of this doctor that doesn’t know you, you’re just a statistic. They’re trying to see where you fit, and if you don’t fit the category, you don’t fit the profile, of course they’re not going to suspect anything.
I also think that you have to hold on to your faith and keep pushing through roadblocks and things that are in your way. You just have to keep going until you find the answers that you really desire to have. For me, that was, I’m sick of hanging out in ambiguity. I know I have it. You are speculating, but that’s why we have science. That’s why we have these things. We shouldn’t be profiling people based on their age or the way that they look. We should be listening to the patient and to their concerns.
Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers. That’s why I’m alive and well today, because I advocated, and I continued to push until I got the answers that I needed. I don’t blame any of them. They’re doctors, they’re human, but I do think that they need to listen to patients better. I think that they need to listen to their patients, listen to the concerns that they have, and really do a better job of putting something in place that is going to help. Help eliminate this ambiguity. For people that may not feel as comfortable to advocate, you just have to remember that you know your body. So even if it’s something that’s totally foreign, talk to somebody about it and try and find those answers that you are desiring to look for.
Raquel first noticed symptoms in 2019, like pencil-thin stools, pain, bloating, and blood in her stool. She then started getting full quickly after eating.
When she finally went to the doctor after developing severe pain, she was dismissed and told, “It was just anxiety.” She then ended up in the emergency room and was later diagnosed with stage 4 colorectal cancer, which had spread to her liver, ovaries, and lungs.
In sharing her story, she aims to raise awareness about rising colorectal cancer rates in young people and the importance of listening to your body.
In addition to Raquel’s narrative, The Patient Story offers a diverse collection of colorectal cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Name: Raquel A.
Diagnosis:
Colorectal cancer
Staging:
4
Initial Symptoms:
Frequent bowel movements
Pin-thin stools
Mild red blood in stool
Treatment:
Chemotherapy: oxaliplatin, 5-FU (5-fluorouracil), and irinotecan
I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling.
I’m 33 years old with terminal colorectal cancer. It has been such a huge part of my life that I have to remind myself that there are other parts outside of that.
I currently work in the tech industry and I’m very blessed to be able to do so.
In my spare time, I like reading and drawing. I’m very artistic and very recently, I’ve been posting more. I’ve been finding great connections on social media with other people who are going through the same thing as me.
I didn’t take my symptoms more seriously because they would come and go.
Pre-diagnosis
Initial Symptoms
I first started noticing symptoms in 2019. I was roommates with my best friend and she started to notice how often I was going to the bathroom. At the time, I was working in restaurant management so I figured I was probably eating too much of the food at work or eating too many processed foods.
I started changing my diet, trying to eat healthier and more protein but also using fiber supplements. I figured I wasn’t eating enough fiber and that’s one of the first things you read online about how to resolve diarrhea or bowel issues. That did help. The symptoms went away, but they would come back to plague me again.
Symptoms Worsened
In 2022, I was working as a contractor in the tech industry. I made really good friends with people on my team. One of them noticed how often I was going to the bathroom and she said, “Raquel, are you okay?” I said, “Yeah, I’m fine. Maybe it’s the dairy in my coffee. Maybe I have a gluten sensitivity.”
At the time, I wasn’t concerned and wrote myself off. I dismissed my symptoms. But knowing what I know now, I was having classic colorectal cancer symptoms.
I experienced frequent bowel movements and pin-thin stools. In addition, any kind of blood in your stool is a huge red flag. It means something is wrong. The color, whether it’s dark or mild red, pinpoints where exactly that bleed is located. Mine was mild red. I didn’t have heavy bleeding, which is why I thought there wasn’t something wrong.
But another classic sign is getting full quickly after eating and that was a huge red flag that something was wrong. That happened from 2022 until when I got diagnosed in May 2023. Every time I took a couple of bites of something, I immediately felt so bloated.
I was actively dieting before my diagnosis, but despite how healthy I was eating, I could not lose weight, which I thought was strange. My stomach was so round and hard. I would later find out that the cause of some of my bloating was ascites. When you have cancer that is as advanced as mine, especially with colorectal cancer, the tumors start secreting free fluid. I had about a gallon of fluid in my stomach that they had to drain. That immediately relieved so many symptoms I was having with eating.
I didn’t take my symptoms more seriously because they would come and go.
They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.
Symptoms Dismissed by Primary Care Doctor
It’s important to note that as a millennial—and I have statistically looked into this—half of us don’t have a primary care provider. That was the story of my 20s. I was blessed to land a permanent role in the tech industry where I had good healthcare and was able to schedule my first physical in 10 years back in May of 2023.
When you don’t go to the doctor for that long, there is a lot to talk about. I let my primary care physician know all of my symptoms, especially my bowel symptoms, and that I had severe abdominal pain somewhat recently. It wasn’t in one spot and felt very abnormal.
When I was talking to her about this, I could tell that she thought it was in my head. She scheduled me for a psychiatric appointment after my physical because she thought I had anxiety.
But now that I know so much about my disease, I know that they were classic colorectal cancer symptoms. Because I was so young, a woman, and a minority, statistically speaking, even just one of those categories is going to make you more likely to be dismissed in a medical setting and that is absolutely what I experienced.
It was maybe three weeks after that physical when my cancer was found to be completely metastatic and had spread all over. I know that she probably felt some guilt because, after my diagnosis, they sent the information to my primary care provider before I was assigned to an oncologist.
I’m sure once she saw how bad it was, she felt guilty at the same time. She’s not the only doctor who has done that, especially when you’re young. Medical doctors are taught these statistics of colorectal cancer being an older person’s disease. They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.
It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.
Diagnosis
Getting the Cancer Diagnosis in the Emergency Room
I finally went to the ER. I remember that day so clearly.
I had severe abdominal pain that was migrating to my lower back and I almost fainted in my apartment. My intuition was saying that something was wrong so I went to the ER.
They did a full blood panel on me, which included the cancer markers CEA, CA 125, and CA 19. Mine were elevated. My CEA alone was in the 700s and anything above 30 is already a sign of cancer activity in your body. For mine to be that high means that my cancer was so advanced.
When I was in the ER, I felt that they took me seriously that’s why my cancer was found. The doctor knew something was wrong so she did that blood panel. I had an MRI, a CT scan, and an ultrasound. They did all those tests immediately.
The ER doctor told me that I had ovarian cancer because that’s where they found it initially. Based on the CT scan, the cancer was pretty advanced in my ovaries and my liver. It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.
The metastases are in my colon, ovaries, liver, lungs, peritoneal cavity, and omentum. They found them through those tests within a week.
Everything happened so fast. I feel truly blessed that when I went to the ER, my cancer and the type of cancer was diagnosed so quickly. They ran all these tests, found my cancer, and immediately referred me to an oncologist. The next day, I was talking to an oncologist who then referred me to have a liver biopsy. A couple of days later, they found the primary source of my cancer.
Even though it’s very, very unfortunate how late my cancer was found, what an incredible experience for them to take me so seriously and find out what was going on. Kudos to the hospital that I went to. They took me very seriously.
Reaction to the Diagnosis
I don’t think I reacted like a normal person would have and that’s because I’ve had a lot of things happen in my life. I have a very calm demeanor. When things go wrong, I’m your go-to person to think logically and that’s how I processed my cancer diagnosis.
Even the doctor seemed really surprised that she said, “Raquel, you’re not even crying. I’m so sorry I’m not telling you good news.” I said, “You know what? It’s okay because no matter what happens, I’m going to get through it.”
I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling. I feel like everything’s going to be okay. I told myself that even at the beginning of my diagnosis.
My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.
Treatment
The treatment protocol and how they’re going to approach your diagnosis depends on your hospital. When I first got diagnosed, I was at a different hospital but for insurance purposes, I had to switch to a different one.
My treatments would have been a little bit different if I stayed with the first hospital because they wanted to start surgeries right away. They said, “You’re going to have a full hysterectomy. I’m going to be doing this in collaboration with one of our very renowned liver surgeons and we’re going to do this at the same time.”
But then when I switched to a different hospital, they told me, “We’re going to focus on chemotherapy. Let’s see how you react, shrink what we can, and then talk about surgery.” I understand the reasoning for that because they want to shrink as much as they can to lessen things going wrong during surgery or make it a little bit less risky.
Because I ended up switching hospitals, I’ve just been primarily I’ve been chemotherapy.
Being on Chemotherapy for Life
I first started with oxaliplatin. The side effects are not pleasant. It causes neuropathy. Fortunately for me, we stopped that in December. I was on it for six months until the side effects started affecting my quality of life too much.
I have switched to 5-FU (5-fluorouracil) and irinotecan. They introduced irinotecan to see if that’s going to help my liver metastases because so far, I’m having a mixed response to chemotherapy.
My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.
I have chemotherapy bi-weekly and for Christmas, I pushed back my chemotherapy because I didn’t want to be sick during the holidays. My CEA, one of my cancer markers, jumped when I wasn’t strictly on my bi-weekly regimen. If I ever stopped chemotherapy, decided I didn’t want to continue, or changed my protocol at all, my cancer would jump at that opportunity to be aggressive.
I don’t have a choice as of right now. Chemotherapy is keeping me alive so I’m going to continue being on it bi-weekly. Fifty percent of people who have chemotherapy might need what’s called GRANIX shots.
The white blood cell count gets so low with chemotherapy that medications are needed to boost the white blood cell count to continue treatment. I, unfortunately, fall under that category so not only do I have my chemotherapy, but I have to have those shots to even have chemotherapy because my white blood cells get too low.
I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run.
Looking for Other Opinions
As of now, they’re telling me that they don’t want to do surgery because of how incredibly advanced my cancer is. They’re saying that it might not be worth it.
However, I’ve read and seen from other people with colorectal cancer that they have better survivability with surgery because the more cancer is in your body, the more opportunities it has to spread and be aggressive.
I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run. I will be traveling to MD Anderson and Memorial Sloan Kettering, hoping that they can do surgery on me, which will help extend my life. Even though I know it’s risky, I’m willing to do it because the alternative is being on chemo forever.
Getting Help & Support as a Cancer Patient
Having the support of family and friends has been such a huge help and I give so much thanks to the incredible people in my life who have helped me through this.
Some things have personally made it a little bit easier, like trying to buy foods that are pre-cut or pre-chopped. I like getting frozen oatmeal because I can just microwave it.
I’m sicker some days than others and I have found that it helps to have plastic utensils so that I’m not thinking about washing the dishes. To alleviate some of the guilt of buying disposables, I buy the biodegradable kind. You never think about how much something like that would make your life a little bit easier, but it does.
Give yourself grace and find the little things that you deserve to make your life easier.
If I had advocated for myself sooner, my cancer would have been found sooner… Listen to your intuition. You know your body more than anybody else.
Importance of Self-Advocacy
Self-advocacy has been such a big part of my cancer journey because if I had advocated for myself sooner, my cancer would have been found sooner. A lot of people who are as young as me or even younger don’t have a primary care provider.
Maybe they don’t have health insurance and I understand that there is a money barrier to getting treatment for a lot of people. That’s why I’ve been speaking to people who are younger than me and are getting diagnosed with advanced colorectal cancer because of those barriers.
One of the reasons why I started to be so outspoken about my diagnosis is to encourage people to go to the doctor. It’s never normal to have blood in your stool, even if it’s a little bit. Something’s wrong.
Unfortunately, if you’re young, a woman, or a person of color, you have to advocate for yourself so much more than people in different demographics. I hope to inspire people to get the medical help that they need for their symptoms because I was invalidating myself.
I went to my primary care provider and had my physical. I told her all of my digestive issues and bowel symptoms, and she said it was all in my head and that it was anxiety.
Other young people say in the comments on my social media, “This happened to me, too.” That’s one of the reasons why I’m trying to be so outspoken and raise awareness. I want people who have had the same experience to hear my story and say, “I need to take this seriously. Even if a medical professional says that I have nothing to worry about, I need a second opinion. I need to go to a GI specialist.” That is my goal in sharing my story. Don’t let anybody write you off. Get seen. Go to a GI specialist.
All it takes is one who will listen to you and help you. They’re out there. We just have to find them.
Words of Advice
Listen to your intuition. You know your body more than anybody else. A medical professional is diagnosing you based on generalities, but you know yourself better than anybody so if you are having these problems, you deserve to see a specialist and get a second opinion. Don’t listen to the first doctor. Get opinions from a second or a third, especially if your symptoms are persistent.
If your symptoms are persistent and aren’t going away, then something is wrong, especially if you have blood in your stool. That should never be written off. Any kind of blood in your stool is a huge red flag. Pay attention to it.
You deserve to be listened to and taken seriously in a medical setting. If the first doctor isn’t taking you seriously, all it takes is one who will listen to you and help you. They’re out there. We just have to find them.
If you have been invalidated about your bowel health or your symptoms, follow your intuition. As much as we want to completely trust that they have our best interests, that they went to medical school and they’re knowledgeable, that doesn’t mean that they aren’t sometimes wrong and don’t make mistakes or misdiagnoses.
Go out there and fight for yourself. Fight for your health. I hope everybody who hears my story feels very validated to go and seek help.
Dania, a 35-year-old mother of three, shares her journey of being diagnosed with stage 4 colon cancer that spread to her liver and peritoneum.
She experienced stomach issues since childhood but didn’t seek medical attention until her symptoms intensified. A visit to the emergency room revealed the shocking diagnosis of colon cancer. The news was initially overwhelming, but her faith and acceptance helped her face the challenging road ahead.
She began immunotherapy with Keytruda, responding well and experiencing minimal side effects. However, she faced complications, including a blockage that required an emergency ostomy.
During this time, Dania and her family made significant life changes, moving closer to her husband’s family for additional support. Her husband played a crucial role as her advocate, utilizing his medical knowledge to navigate the complexities of cancer care.
She emphasizes the importance of not taking health for granted, urging others to be proactive about their well-being. She advocates for increased accessibility to colonoscopies and encourages individuals to speak up and be persistent in seeking medical attention if something feels wrong.
In addition to Dania’s narrative, The Patient Story offers a diverse collection of colorectal cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Dania M.
Diagnosis:
Colon cancer
Staging:
4
Initial Symptoms:
Stomach issues like constipation & diarrhea, depending on the food
I’m 35 years old. I have three kids, ages 17, 12, and three.
I’m married. My husband works in the medical field. He used to be an oncology nurse, but he’s a case manager now so he’s still in the medical field but in a different branch.
I was in school prior to being diagnosed. Now I’m volunteering. I love volunteering at my church. I teach catechism and found that I really love working with children, especially adolescents.
I didn’t have alarming symptoms that made me think of cancer.
Pre-diagnosis
Initial Symptoms
I have always had stomach issues since I was little. Food wouldn’t sit right. I would eat carbs or bread and it would hit me hard in my belly then it would take days for my belly to go back. I’ve dealt with it for years and learned to live with it.
I learned what food would hurt me. If I ate it, I knew I was going to suffer later. I never thought to have it checked out or think that wasn’t normal. I didn’t have alarming symptoms that made me think of cancer, not until September.
Symptoms Intensified
We went to a wedding where I ate a lot of carbs and drank wine. At the end of the night, I felt a strange pain in my stomach, but I thought, It’s the food. I ate a lot today. Not the best, not the healthiest. I knew the process. It would take a few days of cutting out foods that hurt me and sticking to a clean diet so my stomach would get back to normal.
Only this time, it didn’t. The following day, I woke up feeling very bloated and uncomfortable so I thought, Maybe one more day, but it went that way the whole week. My husband, being a nurse, said, “This is strange. You shouldn’t be feeling this way. Not after a week.” He kept telling me to go to the ER, but I was hesitant because my idea was that the ER is for life or death and I didn’t feel like this was such a situation.
Scheduling a PCP Appointment
I made an appointment with my regular doctor. This was September. They didn’t schedule it until October. My husband said, “No, you need CT scans. You need additional testing.”
Finally, Saturday came and this was a week from the prior Saturday when I felt that sharp stomach pain. I woke up and was still feeling really uncomfortable. By then, my tummy looked a couple of months pregnant. It was so bloated and uncomfortable.
‘Everything looks good. Your blood work looks good. The real way to find out what’s going on is through a CT scan.’
Emergency Room Visit
I turned to my husband and said, “You know what? I should probably go to the ER.” He asked if I wanted him to come with me and I said, “No, it’s fine. I’m sure I’ll be back by noon.” We were having this conversation at around 8 or 9 o’clock. I even said, “Be ready. Maybe we can go out for breakfast or late brunch after.” I was thinking they were going to diagnose me with gastritis or some type of stomach issue.
I went to the ER and checked in. I even felt bad because there are other people who are sicker and here I don’t even have pain. I was bloated. Luckily, it wasn’t busy so they admitted me quite quickly. They did all the regular testing and blood work. Everything came out fine.
The doctor comes in, starts examining me, touches my belly, and we start talking. He was feeling the bottom portion of my belly and he said, “You know why I’m feeling there, right?” I said, “Yeah, in case my appendix is doing something.”
He said, “Yeah. Everything looks good. Your blood work looks good. The real way to find out what’s going on is through a CT scan. The only thing is that you’ll be exposed to radiation.” I said, “That’s fine. Let’s do it.”
Getting a CT Scan
He does the CT scan. I was still waiting by myself. I have the app for that particular medical group so I can get my results before the doctor can come in and tell me.
I had been looking at my blood test results, taking screenshots, and sending them to my husband who was home with my two girls. My 17-year-old son was out of town at the time. I thought, Maybe my CT scan results are in, so I check and they were.
Getting the Results
Everything was broken down. I didn’t understand the medical terms so I scrolled to the bottom because I knew it would have a conclusion where they give you the bigger picture.
I felt like a bucket of water had been thrown my way. I felt my heart skip a beat and drop. I don’t remember the exact words, but all I remember are the words “cancer” and “tumor.”
All I remember is him saying, ‘This is going to be a long road. There are so many things being done for cancer now.’
Diagnosis
Reaction to the Diagnosis
I froze. I took a screenshot and sent it to my husband. He immediately called me and I could hear the panic in his voice. He said, “Calm down. Everything will be okay.” I remember shaking. I was in shock.
At that moment, the doctor comes in. Poor guy. I’m sure that the last thing he wanted to do at that moment was tell a 33-year-old that she had colon cancer. I actually felt sorry for him. I’m sure it was hard.
I had my husband on speaker and I remember the doctor showing me my file. He asked, “Is this you?” I nodded. My eyes were glassy. I wasn’t crying yet, but I was about to.
He pulled up a chair and sat next to me. I honestly don’t even remember what he told me. All I remember is him saying, “This is going to be a long road. There are so many things being done for cancer now.”
Processing the Diagnosis
I was trying to process what I read. At that moment, my husband raced over to the hospital. He started calling my mom, my dad, and my siblings, and they all arrived and were very supportive.
Looking back, I don’t know if this was a symptom, but my stomach was so irregular. If I ate something like carbs, I would get constipated. If I did have blood in my stool, I thought it was constipation because it was so hard to go to the bathroom. It wasn’t something that would scare me or be a red flag.
Cancer never went through my mind. Nobody in my family has had cancer, any type of cancer. I’m the first one so it was a shock to everybody in my family.
I remember having a conversation with God and saying, ‘I give this all to you. I don’t know what my journey will be like, but I hand it all over to You. Whatever happens, let me have peace. Let my family have peace. You’re completely in control.’
Looking Back
Around that time, I remember being frustrated with everything and being uncomfortable with my stomach. I remember saying, “I’m going to make an appointment and get to the bottom of this. Maybe it’s a food allergy. Maybe I have something. Food isn’t sitting right. It’s hurting me. I shouldn’t be having this much pain or struggles with food. I should be able to eat normally and not have a bloated tummy immediately after eating.”
I remember saying, “I’m going to schedule an appointment. Maybe a nutritionist. Maybe I’ll see my doctor and she can run some tests or refer me to a specialist to see what it is that I have.”
They say that it’s such a silent killer. It doesn’t get diagnosed until it’s causing damage. At this point, it was already causing issues with my colon.
Admitted to the Hospital
After that, I was hospitalized for three days where they did a colonoscopy, a biopsy, and everything. I remember being on cruise control. I never really broke down and cried. I feel like I accepted it.
Leaning on Faith
I’m a practicing Catholic so my faith is a big part of my life. I don’t remember what procedure it was. It might have been my colonoscopy because I was going to be put to sleep.
I remember the countdown and having a conversation with God and saying, “I give this all to you. I don’t know what my journey will be like, but I hand it all over to You. Whatever happens, let me have peace. Let my family have peace. You’re completely in control.”
As I fell asleep, I felt so much peace. It helped me stay calm. At that time, I didn’t know what the stage was and where I was with the diagnosis. All I knew was I had a tumor and I had colon cancer, but I had a lot of peace after that.
I decided that I wasn’t going to be angry because being angry was going to feed this monster. I wanted to do what I needed to do. I gave it all up to God and I felt a freedom after that.
My children were going to see me at my sickest and that’s the only thing that tore me, but I was at peace.
Treatment
Discussing the Treatment Plan
At the ER, when the doctor came in to talk to me, he asked if I had any questions. At the time, I only had one. I asked, “Is it going to hurt?” I wanted to be prepared. I’m the type of person where I like to know.
I don’t remember exactly what he said, but he said, “That’s a very interesting question you’re asking. I usually get that a lot from older patients.” I don’t know what he meant by that.
I wanted to know what I was about to go through to prepare myself. I kept thinking my children were going to see me at my sickest and that’s the only thing that tore me, but I was at peace. I said, “Let’s go with it and see where I’m heading.”
Pathology Report
I was diagnosed on September 17th when I went to the ER. The next day, I received the pathology report, which confirmed the cancer. My tumor was at the top of my colon.
I don’t even remember them telling me. I remember briefly hearing conversations that it was stage 3 or 4. Finally, in one of my appointments and through seeing in my app, I saw stage 4 colon cancer with liver and peritoneal carcinomatosis.
Realizing the Gravity of the Situation
My husband was an oncology nurse and worked years in that department so he has been my biggest advocate. I understood that that was pretty late, but I didn’t understand the gravity of it.
I try not to Google because online, they will tell you the worst-case scenario and I didn’t want to know so much. I don’t think I understood what that meant until I had a conversation with my oncologist a few months down the road.
I was under the understanding that I would have surgery to remove the tumor and start treatment and all that. I asked the doctor when we would start thinking about surgery. She wouldn’t straightforwardly say we’re not looking at surgery, but the conversation led to that. Surgery was not on the table because my cancer had spread.
That’s when it hit me. My heart dropped. My husband was right next to me during the video call. After we hung up, I looked at him and asked him for clarification to see if I understood right and that’s when I broke down. I understood then that it was a lot more serious than I thought.
The CT scan confirmed that my tumor was blocking 98% of the colon. He said I would need an emergency ostomy.
Keytruda Immunotherapy Treatment
When I was diagnosed and while they were doing all those tests, they wanted to give me a first dose of chemo before leaving the hospital so they put in my port. My husband started talking to the doctors to see if I would be a good candidate for immunotherapy. The oncologist decided that they would wait for the pathology report to come back to see if I was indeed a good candidate and, thank God, I was.
I went home with the goal to start immunotherapy as soon as possible. I had my first immunotherapy on September 29th and that has been the only treatment I’ve been receiving.
I’ve been doing Keytruda. I haven’t had any side effects at all. I do feel a little tired, but compared to what chemo does to you, I’ve been so blessed. I am so thankful.
New Stomach Pains
I ended up going to the emergency room again at the beginning of October. It started with horrible stomach pain. It felt like contractions. I could not eat anything. The smallest thing I would vomit back up. My husband made me a smoothie, begging me to eat something.
I spent the whole Saturday in bed, in pain and extremely nauseous. We thought it was a reaction to the immunotherapy because I just had my first dose. But it was horrible. The pain was so excruciating.
On Sunday morning, my husband turned to me and asked how I was feeling. I said, “I don’t feel good. What do we do?” He said, “ER.” We headed to the ER. The same doctor that diagnosed me was there. As soon as he saw my name, he rushed into my room. After reading my symptoms, he had an idea of what the issue was.
He looked at me and said, “Remember that first day when I told you this would be a long journey and there would be some bumps in the road? This is just a bump.”
He thought it was a blockage. The tumor was already blocking the passage so I was eating, but nothing was coming out. The only way to confirm this was to have another CT scan and it confirmed that my tumor was blocking 98% of the colon. He said I would need an emergency ostomy.
My quality of life wasn’t good. I couldn’t do much. I couldn’t do basic tasks because I felt so tired. It hurt. I couldn’t lift.
Emergency Stoma Surgery
Having an emergency ostomy was harder than my cancer diagnosis because all of a sudden, I was pooping through a bag.
I had to learn how to clean it and how to take care of it. I’m a very squeamish person so this was a challenge for me. It was painful. To see part of my organ outside of my body was an adjustment.
But I have so much support. I would see my ostomy nurse two days a week. She would come to my house, help me change it, and educate me more on it. She was the sweetest lady. Love her. She was amazing.
She gave me my space. She understood that it was hard for me and let me drive this situation. She knew that I was struggling. She gave me time and, eventually, after baby steps, I was able to clean it. By the time we were done, I was doing it on my own and I learned to take care of it.
Prolapsed Stoma
Immediately after, I started having issues with my ostomy. It prolapsed so it was starting to come out. Mine started protruding. Eventually, it would get really big and would hang out. It was very painful. I started developing a pretty good-sized hernia right behind it. Once I lay down, it went back into my body.
It’s a blessing because, without this, I could have lost my life so I was very, very thankful for it. But it was very uncomfortable. I had to use a waistband to keep everything in place.
My quality of life wasn’t good. I couldn’t do much. I couldn’t do basic tasks because I felt so tired. It hurt. I couldn’t lift.
I said to my oncologist, “We have to fix this because this is not a good way to live. My future is so unknown. I want to be able to go to the park. I want to be able to do stuff with my kids. I want to make memories.” The conversation started happening about referring me to another oncologist for a second opinion to see what we could do.
We were heading in the right direction. This is from surgery being off the table to removing this tumor. It was such a blessing.
Getting a Second Opinion
The goal was to see if I could have surgery to replace the ostomy. I was referred to UCSF and I spoke to a doctor there via video chat. He saw my chart and said, “I don’t see why we couldn’t have surgery for this.” He said that we could pause immunotherapy and then have surgery, but he said that he would refer me to a surgeon there because they would know best.
I was referred to a surgeon and she was amazing. She gave me the worst-case scenario and the best-case scenario. After seeing everything, she said that she would try to see where the tumor was, and if everything wasn’t in my favor, she would remove the tumor or do a colon redirection and repair my hernia.
But if she goes in there and everything looks worse than what the CT scans have shown, then she would close up the stoma and place it somewhere else where it wasn’t likely to prolapse or cause another hernia. She said that as long as I had the tumor, the ostomy had to stay in.
I have been responding really well to treatment. Everything had shrunken significantly. But because of scar tissue and not knowing, we didn’t want to risk reversing the ostomy, having to go to the emergency room again with the same problem, and then having emergency surgery.
We scheduled surgery for June 12th. She came in, took a last look, and made markings. She was so amazing and so thorough. She wanted to cover her bases before going into surgery. She decided on a new stoma placement should we have the worst-case scenario.
Surgery
Colon Resection, Ostomy Reversal & Hernia Repair
Thank the Lord, everything came out great.
The first night was horrible. I had so much pain because it was a pretty big opening. She took out the main tumor and a big chunk of my colon, and she repaired my hernia.
I went back for my follow-up appointment to remove the drainage. She told me that the doctor had taken out everything. She focused on the colon. She gave me the great news that from stage 4, it had gone to stage 1. If the cancer hadn’t spread, that would have been the end of my cancer journey. We still had the liver and the peritoneal area.
The amazing news was that we were heading in the right direction. This is from surgery being off the table to removing this tumor. It was such a blessing. She also took out my appendix because it was connected somehow. She said that they went through it and they studied it and had no cancer, which is amazing news. The cancer stopped spreading.
I still needed to have PET and CT scans to confirm. But he said that everything looked great and that the immunotherapy and surgery were successful.
Seeing a New Oncologist
Another blessing of my husband working in the medical field was that he knew people and started asking for an oncologist referral. I got a new oncologist where we moved and he is amazing.
At my first appointment, he was very proactive. He said, “Let’s see what we can do with your liver,” because that was the next step. Immediately, he referred me to a surgeon at USC.
He explained that I was responding perfectly to immunotherapy. Everything was shrinking. The cancer could shrink a lot with immunotherapy, but there are still cancer cells there and the risk of it coming back is greater. He said that the best thing to do was to have surgery and remove that part of the liver so that’s what we did.
Partial Hepatectomy (Liver Resection)
We scheduled surgery again for September 20th. I mentioned to him about the lining of the stomach and he said he would look into it. He would check that out, too. The surgery date came, I had surgery, and it was successful. Thank God.
He said that everything looked great based on what he saw, but I still needed to have PET and CT scans to confirm. But he said that everything looked great and that the immunotherapy and surgery were successful.
Follow-up Appointment
I saw my oncologist recently, who scheduled me for a PET scan to see where we’re at, but he said that I look good and that everything looks great.
We decided to move, which was scary because I had to look for new doctors and everything.
Getting Support from Family
Moving Closer to Family
Around that time, we made a life-changing decision. We lived in Northern California and decided to move to Southern California to be closer to my husband’s side of the family.
My family had been great, but we needed a little more support with appointments. My in-laws are retired and they’ve been amazing. We decided to move, which was scary because I had to look for new doctors and everything.
Husband as Biggest Advocate
I knew nothing about cancer, just little things that my husband would tell me when he would come home. He would get close to patients that he cared for and when they would pass away, he’d come home sad and we’d talk about it.
Things would be different if my husband didn’t have the knowledge that he did. He’s been my biggest advocate. He understands so he can have conversations with the doctors and surgeons. I don’t know what my situation would have been like otherwise.
I saw a palliative care doctor and she would ask me how he was doing. She said that knowing works like a double-edged sword because he knows too much. He knew stage 4 was serious. He knows that this can go south fast so I can’t imagine what he feels being my husband and knowing all this information.
In a way, sometimes I feel like ignorance is bliss. I didn’t know much, which helped me because I didn’t realize the extent of my illness until I had that conversation with my doctor that one day. But having somebody who knows is big.
Things would be different if my husband didn’t have the knowledge that he did. He’s been my biggest advocate.
Words of Advice
Don’t take your health for granted. If you feel that something is wrong, have it checked out. I never thought in a million years I would be on this journey.
Be proactive and push. The day I went into the ER, the doctor didn’t want to do the CT scan because I looked fine, but I said, “It’s okay if I’m exposed to radiation. Let’s do this. I want to know what’s going on.”
Colon cancer is happening to a lot of younger people. This is not an old person’s disease anymore. I’ve read about people as young as in their 20s being diagnosed with colon cancer.
For some reason, it is so hard to schedule a colonoscopy. Whatever the reason is, that needs to change. It should be more accessible.
So many people are dying because they’re being diagnosed at such a late stage. It’s so silent at the beginning and you don’t know that there’s something wrong until it starts creating havoc in your body and that needs to change.
We need to have a colonoscopy or whatever testing is available at a younger age. My siblings were able to schedule a colonoscopy immediately because I have cancer. They became high risk. My sister had such a hard time scheduling an appointment because of insurance. That should change.
You have to advocate. Speak up and be firm. If something is wrong, don’t stop because the more you wait, the more this monster can mess with your health.
Don’t take your health for granted. If you feel that something is wrong, have it checked out.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
Jason Randall, A Stage 4 Colorectal Cancer Survivor
Jason’s Stage 4 Colorectal Cancer Story
Jason’s cancer journey began in 2005, in the middle of his Navy service. He began experiencing stomach issues and was diagnosed with GERD. Much later, in 2018, he was seen by his doctor when he developed severe abdominal pain and infrequent bowel movements. A scan revealed 80% of his liver was covered with metastatic disease, which led to a stage 4 colorectal cancer diagnosis.
After years of fighting Veterans Affairs to prove his cancer was connected to exposure to cancer-causing chemicals during his Navy service, restitution was granted through the Pact Act – an Act that grants better healthcare and funding to veterans exposed to toxic chemicals.
Jason shares his cancer journey, his work with COLONTOWN – a colorectal cancer support network, and how he overcame liver surgery and chemo after doctors said it couldn’t be done.
Just this year, Jason and his wife launched Kohala House of Healing, a cancer retreat in Hawaii. The lush hideaway is designed for those affected by cancer to find hope, healing, and renewed purpose.
At the Patient Story, we feature the real voices of cancer patients to empower and offer hope. Explore more Colorectal Cancer Stories for further inspiration.
My name is Jason Randall. I live in Eudora, Kansas with my wife and 3 children. We live on a hobby farm. I was in the Navy for 5 years from 2003 to 2008. After that, I went to school.
My wife and I were best friends in high school. After the Navy and college, we reconnected. When I came back from Hawaii for a semester at the University of Kansas, we started dating. My wife has our daughter from a previous relationship, who I’ve adopted.
We’ve lived on this hobby farm for 10 years. I’m a cartographer by profession. Technically, a GIS analyst. We like to fish as a family. We go to the gym and swim quite a bit.
When did you first notice something wasn’t right?
In about 2005, right in the middle of my Navy service, I had some stomach issues that they tested. They came to the conclusion that I had GERD reflux disease, so they put me on omeprazole and Zantac-type medications. It was fine for years after that.
About 2018, I was diagnosed with stage 4 colorectal cancer. It blindsided us. I say us as in my family because I always include caregivers. They are often overlooked in this process.
They saw that about 80% of my liver was covered in what appeared to be metastatic lesions…It started me in this world of advanced-stage colorectal cancer.
Two weeks before, I had some severe abdominal pain that I’d never had before and 2 weeks before that, I’d noticed that I wasn’t going to the bathroom at a regular frequency. Then it just stopped and I started getting abdominal pain. That’s when I thought something was wrong. I need to go get this checked out.
My mom had diverticulitis quite a bit over the last couple of decades and they said, “It’s probably that. Let’s get a CT scan just to make sure so we can put you on antibiotics for it.”
I had that scan on July 16th. They saw that about 80% of my liver was covered in what appeared to be metastatic lesions. That prompted a PET scan on the 17th which confirmed it. My liver, the large majority of it, was covered in metastatic disease. It started me in this world of advanced-stage or stage 4 colorectal cancer.
Was there any connection between your GERD and colorectal cancer?
I brought that up along the way many times after I was diagnosed. The doctors never put them together because they generally think, anything in the upper esophagus or upper GI tract is Barrett’s disease or esophageal cancer instead of colorectal cancer.
My colon, where we found the tumor was at the sigmoid part of my colon, right before the rectum. So there really wasn’t a tie to it.
Ironically, after I had surgery to remove 30 cm of my colon, my GERD completely went away. It cued me to ask, what’s going on here?
If you look at the history all the way back to 2005, I was on ranitidine, which is Zantac. Then when I got out of the military into the Veteran Affairs (VA) system, I was on omeprazole for 10 years. My doctor mentioned that the advanced stage of my disease and the extent of it [means] it had been in me for about 10 to 15 years at a minimum. That squarely placed it right in my military service.
Did the VA take responsibility for your diagnosis after your exposure to cancer-causing chemicals?
Not definitively. Presumptively, yes. I was fighting the VA for about 3 years, trying to tell them that everything lines up with the exposures I had while I was in the Newport News Shipyard.
After I got out of my basic and my school training, I reported to the USS Eisenhower in 2004, in what they call an RCOH overhaul, where they take an aircraft carrier in the middle of its life and completely redo everything. They take it down to bare steel. They replace the reactor rods. I was in that environment for about 2 years.
We had all sorts of chemical and toxic exposures. You can use PPE and try to protect yourself, but you still inhale it once you take the equipment off. I was also within the burn pit zones in the Persian Gulf from 2006 to 2007.
Finding help through the Pact Act
They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types.
Jon Stewart was one of the biggest promoters of this law called the Pact Act for Toxic Exposures and Burn Pits. It finally connected my service to my cancer diagnosis.
Because of the way the laws were written before, the burden of proof was on the person having cancer. They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types, like prostate, breast cancer, colorectal cancer, and all sorts of different things.
The law was really good to help veterans who have been struggling to get this care and to have the military take responsibility for that within their service.
Did you have any other symptoms before your stage 4 colorectal cancerdiagnosis?
The only other symptom was, before diagnosis, I had something in my belly button that would appear every 4 to 5 months. By the time I could get in [to the doctor’s office], it would go away. They’d say, come back when you can. By the time I could get scheduled, it would go away.
It only lasted for a couple of days and it was like a little bit of discharge from my belly button and a little bit of hair follicles. It seemed like there were hair follicles that would come out. It’s hard to explain, but something wasn’t right.
It turns out that’s right where my primary tumor was, along the sigmoid colon. It was like, this could be a correlation to that.
What happens, happens but I wish I could have got in when they could have examined that a little bit better.
Did you have bleeding?
They say the number one symptom of colorectal cancer is no symptoms at all.
You hear a lot of people with colorectal cancer say they had blood in their stool. I think I’ve only had it at one point and it’s because I ended up having an emergency stent placed shortly after diagnosis because of the situation at hand. Even then, it was a couple of times.
They say the number one symptom of colorectal cancer is no symptoms at all.
How did you react to receiving your stage 4 colorectal cancer diagnosis?
No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it.
It’s very vivid, even though in July, it’ll be 5 years now on this journey. I was diagnosed on July 17th, 2018. It was 2 days after my son’s second birthday, and my wife was pregnant with our third child.
I remember walking into the doctor’s office after the CT scan. They called about 15 minutes later and said, we need to see you tomorrow first thing. I go in and the doctor casually says, “I don’t know another way to put this, but you’ve got cancer and it spread to your liver.” I said, okay, took a minute, and then as soon as I walked through the doors leaving the place, it was like a rush of holy crap. I’m a dead man.
No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it. I thought I was dead.
I come from a large breast cancer family. I carry a BRCA1 germline mutation. The women in my family, if they’re a carrier, they’re almost guaranteed to get breast cancer. It’s not as prominent in men. My mom had cancer, and her mother passed from cancer. I have had exposure to this, but it was emotionally devastating.
My wife was at the bowling alley with the kids and a friend. When I called her, she completely lost it. It was a bad, very dark time. We ended up coming home that night, my wife and I. We had my parents watch the kids, and we just held each other thinking, how much time do I have?
With 80% of my liver covered, that’s not a good situation. And I had a fully blocked sigmoid colon so they couldn’t go in and remove the primary tumor. I had to have that stent open me up before I could pass stool. Everything from there was a whirlwind getting into doctors, and getting the stent placed. It was emotionally devastating.
Treatment
What were the next steps in your treatment?
That’s a little more vague to me. I do remember [the doctor] saying, we’re going to have to get you in for a PET scan, which happened the next day to confirm it was stage 4 colorectal cancer. After that, I was at my local hospital system near Lawrence.
If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.
Luckily, I have a doctor cousin who took me with his training. We called him and asked, “Do you have any advice?” He said, “I want you to go see Dr. Miranda at KU Medical Center,” which is the National Cancer Institute (NCI) here in the Kansas City area. It’s the only one in the Kansas City area.
He came with me to the appointment. That was a very pivotal moment in this. Going to one of the top centers in the area with that NCI rating, it’s important to have.
I work in the colorectal cancer support community and advocacy, and I heard the average time for people going from symptoms to starting chemotherapy is above 200 days, which is insane. I got in within 2 weeks. I was diagnosed on July 17th and I had my first chemo on August 1st, about 2 weeks later. I’m very blessed to have that team move that quickly.
A lot of it is very vague. It was just, go see this doctor, see this, get this scope. If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.
I’m very grateful my oncologist never told me an expiration date. They did say, “You have a terminal prognosis of chemo for life and are inoperable due to your extended disease. You’ll never get off chemo and you’ll never be operated on for a curative intent. Palliative reasons, possibly, but we’ll do everything we can to extend your life.” That was a big pill to swallow
How did you come to terms with a terminal prognosis?
I don’t know if I ever fully digested it. I never believed I had cancer. It was all very surreal. I thought, is this happening? Did I get phase-shifted into some weird parallel universe? This has to be a bad dream. When am I going to wake up?
It was a lot to process. Every time I heard it, I would sigh and griff and say, “No, I don’t want to hear this. This is not my fate. I don’t foresee this being me.” It was really hard to swallow, especially every time my oncologist said, “We’ll do everything we can to extend your life, but you will be on this forever.”
I was put on what they call FOLFIRINOX. Sometimes they call it FOLFOXIRI. It’s basically how the drug is administered. With colorectal cancer, if you’re not a candidate for immunotherapy, irinotecan, and oxaliplatin are the 2 big drugs [that are given], and 5-FU which has been a standard since the 70s.
I had what’s called the kitchen sink. It was a combo of those 3 drugs. I started on August 1st and I started with what would have been the first of 30 initial cycles. I did 9 of the FOLFIRINOX, then we paused to do Y-90, which is Yttrium-90. It’s a radioactive isotope of the element yttrium.
They go through your hepatic vein and your groin and they send a catheter up into your liver. It’s a liver-directed therapy where they drop millions of radioactive resin beads right into your liver where the tumors generally form based on where the blood flows. I had 2 of those in November and December 2018, then I resumed 11 more treatments of what they call FOLFOX, which is the previous one, minus the irinotecan. They wanted to drop down the irinotecan because of the 2 Y-90. It’s a lot to take on with the radiation.
It’s targeted radiation, so I ended up having 6 of the 5-FU, largely driven by blood numbers – whether my white blood cells were up or my platelets were high enough. My big issue was low platelets, something I still suffer from today, from all those treatments.
Switching treatments due to lung spots
In September of 2019, I had some lung spots show up so we switched the drug oxaliplatin. A lot of the time, oxaliplatin causes severe neuropathy. Luckily, I never had too bad of that and I ended up taking 20 cycles with that in the mix, which is a lot. Some people dip out after 4. Usually, it’s between 8 and 12 of those.
Then I started back on the irinotecan drug through a combo called FOLFIRI. We added a biological drug called Vectibix or panitumumab, an epidural growth factor inhibitor that prevents blood vessels from growing. I did 4 more treatments through December 2019, and then I stopped to break for Christmas.
Getting a second opinion led to new treatment options
Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life.
My story started to change through COLONTOWN, an online colorectal cancer support community. I learned about Dr. Fong who’s a liver specialist and surgical oncologist. He doesn’t do just the liver, he does a lot of stuff in the abdomen area minus the colon itself.
People kept saying, you need to go see him. I had scans in December at my local center. Even though I had a really good response to chemo, they told me, you’re going to be on chemo for life and inoperable. They were scared that if I did have liver surgery, the liver would grow back. It’s the only organ that does that and the disease would progress with that regrowth.
Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life. It led to a surgery that was 12 hours long in February 2020.
They removed my entire right side and a right hepatectomy and then a lower anterior resection (LAR). They removed 30 cm of colon and a quarter of my rectum with curative intent and also took my gallbladder. I had 5 ablations on my left side at the time. I had lost 110 pounds prior to that surgery.
What inspired you to get a second opinion?
It was the support group COLONTOWN. People kept mentioning it. I was holding out on hope at my current NCI center. I still actually see them to this day, but I was hoping that with that next set of scans, they’d say, we’re going to try. They never did.
Ultimately it was my wife who said, “You need to go do this. Let’s go out to California. What is the worst they’re going to say? No, and you’re still the same?” I said okay, let’s rule it out. If one of the top people in the world says no, then it’s my fate. Thankfully it wasn’t.
Cancer recurrence and COVID caused changes to treatment
That’s not where the treatments ended. I stopped chemo after that because I had 30 cycles and 2 liver embolizations and they said my body needed a break. About 6 months later it returned, but not in my liver or colon. It returned in my tailbone in October 2020.
I started back on the FOLFIRI with the Vectibix for 4 more cycles. On my very last cycle, my 34th chemo, 2 days later I tested positive for COVID. That was a crazy week. COVID delayed my radiation treatment.
In February and March of 2021, I had 28 full pelvic radiation sessions to the entire pelvic region, which destroyed my rectum. For 3 months, it was pretty rough. I was sitting on the toilet for 3-plus hours a day, not really living life, just stuck.
Finding hope after his son’s birth
Throughout January and February 2019, I was on a lot of treatments. My son was still in my wife’s belly at the time. I caught him about 2 hours after my eighth round of heavy chemo. That gave me a lot of motivation, wanting to see my kids grow older.
It’s a very powerful moment in my life. Seeing my son born and being able to catch him. Both my sons were born at this house. My wife did a home birth, bless her soul. I didn’t think it would work out, but it did and it really changed me. It gave me a little bit more hope in October 2018 when that happened.
Then it got dark again. I had surgery in January 2019 because the chemo destroyed my anus and caused a fistula to bore through. It caused a lot of pain.
In early February, I found an integrative medicine doctor through my dentist of all people. I went to see him and he joined my team. That was one of the biggest moments of my stage 4 colorectal cancer experience. Not just diet and exercise, which are important, but he also helped mitigate the side effects, which helped get through it and process it.
I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life.
One of the biggest things [he taught me] was the mind-body connection and meditation called Psychosomatic Wellness, which has a lot of science behind it. I wasn’t big into that kind of stuff. I thought, “This is heebie jeebie. This isn’t going to work.”
About a month into it, I connected to it. I went somewhere. I still don’t know what to call it. Some people may call it universal energy, God, chi, soul. Whatever you want to call it, I went somewhere and connected with something. It really helped me process things.
I was able to accept life, death, purpose, and what all this means. I was grateful for whatever was to come. I carried that into this second opinion. I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life. What do I have to lose? I went out to California and sure enough, it happened and here I am still.
Getting an Ostomy
Describe getting an ostomy bag
Back during the big February 2020 surgery, I had a temporary ileostomy placed which is where the small bowel dumps into a bag with a stoma. That was reversed in May 2020.
Fast forward to the radiation. In June 2021, I had an abdominal perineal resection (APR). It’s a surgery that’s known as Ken or Barbie butt. Imagine a Ken doll or a Barbie doll. They just have a straight stitch on the backside. They took my anus, my rectum, and in my case, my tailbone and part of my sacrum to get clear margins. It was successful, and it left me with a permanent colostomy bag but it’s been a blessing in disguise.
Having it removed has been great for me. I don’t sit on the toilet for 3 hours a day. I spend 60-90 seconds messing with bowel function now. I still swim 3 to 4 times a day. I get to play with my kids. I lost 110 pounds and I wasn’t sure if I’d ever gain it back, and now I’m on the other end of it. It’s been so good to me that now I need to lose a few pounds.
What types of ostomy bags are there and which do you use?
There are several types of ostomy:
The ostomy that comes off your small bowel and avoids your large intestine.
A colostomy, which can be placed along your transverse colon all the way down to your sigmoid.
One-piece open bags which have a little cut-off valve that you can drain as needed.
Two-piece drainable bags.
Two-piece closed systems in one-piece closed systems.
I had a temporary ileostomy. At first, they tend to be more of a liquid output. They’re always on because the way the bowel works is your ileo dumps into your cecum and that’s when your stool starts to form. Before that, it’s all liquid as your small intestine absorbs nutrients. [Ileostomy is] common when people have a large surgery over a colostomy.
If you’re removing the lower part, you tend to get a stoma. That’s the medical name for the exit point. The stools tend to be more formed, it’s more predictable. I find that [colostomy] systems are a lot easier to use than the ileostomy systems.
Considerations when choosing an ostomy bag
Any closed system is not a good idea if you have an ileostomy, because you’d be changing it all day long. Whereas with a colostomy, it’s a little more predictable. It’s easier to manage. People tend to go with closed systems for convenience.
I used to be a 2-piece ostomy person for both my ileostomy and my colostomy. I’ve had about 2 years of colostomy and 3 months of ileostomy. With the colostomy, I’ve gone down to a 1-piece system.
There’s usually, a flange that adheres to your stomach. Once that gets on, a lot of people use either pastes, barriers, or protective rings to help hold that on to prevent leaking.
Leaking is the #1 thing that gets people flustered. It’s like crapping your pants and no one wants to crap their pants. It’s one of the big anxiety drivers with an ostomy. Am I going to leak? How am I going to manage this?
Also when you have a peristomal hernia. The creation of a stoma is a hernia in itself. That can cause more herniations so you want to be very careful with your abdominal wall and building your core back. When you get a herniation, you can feel it. It can lead to blockages.
With an ileostomy, you have to watch your diet a lot more than with a colostomy. Things tend to get blocked more with the ileostomy. From my experience and hearing from others’ experiences with a colostomy, people can still get it.
Leaking is the #1 thing that gets people flustered…It’s one of the big anxiety drivers with an ostomy.
If you have an ostomy, make sure you have a good hernia belt. I’ve got several. I have several Stealth belts. I also have one called a Stomaplex, which is like a stoma guard for impact. You don’t want things to hit it because it can bleed. Some people also use a Nu-Hope binder. It’s like a taller binder that goes around with a hole in it to support that and push your abdominal wall together so that you don’t herniate as often.
Is colostomy irrigation an option for some?
You cannot do it with an ileostomy, but with a colostomy, not many people are aware you can do irrigation. Instead of having to worry about having a bag going throughout the day and finding a frequency, people that are more active tend to go the irrigation route.
Imagine an enema but for your stoma. It goes all the way up your bowel track and basically gets behind the stool and you force water through it and then drain it over the next 30 minutes to an hour after that. When it drains, your bowel is empty and you can put a stoma cap on it. A lot of people are able to go hiking for 24 to 48 hours at a time [after irrigation].
Has your ostomy experience always been good?
Go out there and explore, call, get samples if you can, and find the system that works for you.
I’ve had a very good experience with my colostomy and my ileostomy. A lot of people do have struggles though, so if someone’s out there and they’re asking, “Why does this guy have such a good experience?” You’re not alone.
I struggled the first couple of months with mine before I found a nice rhythm and system. Don’t be afraid to call the 3 big companies – Hollister, Convatec, and Coloplast – and request samples. It can be very good to talk to one of their reps to find out what system works for you.
Having an option between a flat bag and a convex bag can be a game changer. A lot of people get stuck and say, “This is what the hospital gave me. How do I deal with this?” Go out there and explore, call, get samples if you can, and find the system that works for you. Because what works well for me may not work well for you.
Post-Treatment Tests & Scans
A circulation tumor DNA (ctDNA) test helped catch cancer recurrence
In June when I had the APR, I got the colostomy, and my Ken butt, I had about a year’s worth of no evidence of disease (NED). Then I had a recurrence in my lung. A spot that had been on CT scans since diagnosis, which they thought was scar tissue, initially never responded to any other thing. After all the chemo I went through, it decided to grow in May 2022.
I didn’t go on treatment because we caught it very early. I’m on a circulating tumor DNA test (ctDNA) called Signatera. Another company, Guardant, has one called the Reveal. It’s the same test, different companies. They sequence the biology of your tumor, specific to the person and no one else. The signature will never pop up in anyone else.
It can detect circulating tumor DNA in your body. It’s not cancer itself, it’s just junk DNA our body puts off, but it has that signature of your disease and they can detect if you have a recurrence. My tailbone recurrence was caught by September or October 2020.
After I went through the radiation, the chemo and more radiation, and the second major surgery, I was about a year clear. Then I had that Signatera test which detected an extremely low amount.
Is a ctDNA test for everybody?
It’s still in the testing phase. Not everyone responds the same. Their bodies aren’t as sensitive to the test.
There are also different areas of the body that put off more ctDNA like the liver, whereas the perineal may not. It’s still in flux, but it can be another tool because the normal marker for me was never above. It was always within range and it still is. It’s never varied more than a point, so it was never really a good indicator. The Signatera test has been really important for that.
COVID delayed a necessary treatment
In May 2022 when I had a spot come back in my lung that grew, COVID struck again. When I went in to get it ablated, I’d had COVID 3 weeks prior. Even though I felt better, my lungs still had some junk in them covering up the spot and they can’t ablate what they can’t see.
Then in August 2022, I had a biopsy that confirmed it was colorectal cancer in my lung and I had an ablation the same day. I was in at 6 a.m. and I was out by noon, working at 12:30. It was the least invasive. It allowed me to skip treatments by detecting them so early.
As of Monday, I had a negative Signatera test come back and I had my CT scans showing that I’m 9 months no evidence of disease and I’ve been off chemo for 2.5 years.
How does it feel to be done with chemo?
Surreal. They told me I’d never get off of it, and here I am. 2.5 years off of chemo.
How often do you have scans?
Right now it’s every 3 months until I hit 2 years. Then it should jump up to every 6 months. In 3 to 5 years, they’ll jump it up to either none at all or every year.
I plan on setting records. I’m going to be the longest person NED ever. At least that’s the way I’m setting my mind up for it.
Reflections
Describe the work you’ve done since being diagnosed
I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.
I do a lot of work within the colorectal cancer support space. I’ve worked for COLONTOWN since July 2020, after I had my Dr. Fong surgery. Dr. Kaiser was my colorectal surgeon.
PALTOWN, which is the nonprofit for COLONTOWN, asked me to be on their leadership cabinet. They were forming a new leadership cabinet, a new model. There are 7 of us. I’ve been there ever since.
I do a lot of support work. I reach out to a lot of people. I do work for Man Up to Cancer. A primary goal is keeping men from isolating during a diagnosis.
I also do early-onset colorectal cancer awareness through the Colon Club. Through that group, I was in their 2023 On the Rise magazine. It lays out where we’re at and our story to raise early-onset awareness. It came with a photo shoot. I never thought I’d become a model but here I am.
I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.
The importance of expressing your emotions
Meditation, I went somewhere with it and that was my first foray into the emotional side of [my diagnosis]. I learned to accept that it’s okay to be emotional. And we should be emotional because if you push it down, it does nothing but hurt your mental health. Other people are going through this, and at this point in the game, if you have cancer, who cares?
It’s so much easier said than done, but you need to talk. Tell everyone how you feel. Some people are quieter than others. If you need to join a group and listen to other people do it, you don’t have to be active in those communities. Seeing what other people are going through can help your mental and emotional health more than anything. Some of us happen to be a little more vocal about it, but it helps to get people out of that bubble, that survival mode that we get stuck in.
A trip to Hawaii led to new revelations
In 2021, my family was gifted a vacation. During this trip, we realized that we weren’t living. We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.
It woke something up in us. We asked, what have we been doing? I’m doing all this support work, but we’re just going through the motions. We’re not really living our own lives.
We came up with the idea of going back to the Big Island of Hawaii. Then we said, we should move back there.
We came back [home], I looked at my wife and said, “I have this crazy idea. Would you ever move back, get a secondary house and host people to experience what we did?” I was thinking she was going to say, “You’re nuts, Jason. No.” And she said, “Yeah. I think that would be great.” So we started developing this plan.
I went to school for a semester on Oahu at the University of Hawaii Manoa studying anthropology and geography. It’s a beautiful place. If you’ve never been, I highly suggest going.
We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.
Connecting with a cancer retreat center
About 6 months into [developing this plan], I was looking for health care on the Big Island or through the VA because I’ll always need to go see doctors. I found this cancer retreat on the north side of Hawaii on the Kohala Crater. We said, “Holy crap. These people are doing what we thought of, except it’s a whole retreat center.” We reached out to them and they agreed to become our mentors.
Life gets busy with 3 kids and I was still worrying about that lung recurrence. Two days before or after my lung ablation, I finally had my VA claim accepted which lifted a huge medical burden off of my back because they’ll cover all my medical expenses. That freed up some resources.
My wife and I flew out in December to visit them as a patient and a caregiver to see what they had to offer. We really bonded with the couple. We shared our story with them. She was a cancer survivor. Her husband was on chemo for 12 years before she got with her current husband. He was a disabled veteran as well, and we really bonded.
We told them our dream and they offered to sell us the place. I went back for 5 weeks in April and March of this year to see what they meant by that, get more details, figure it out, and work on the farm. It’s also a sustainable farm that teaches food as medicine, and it has a temple that aligns with the integrative practices that I was doing, which was so beneficial to me.
After that trip ended, we came back and we now have a purchase agreement with a timeline to make that happen. We’ve got a little more money to raise and we have a timeline to do that.
My wife and I want to move our family out there, live on-site, and host cancer patients. Ultimately, it would be if we can find enough funding where it’s no cost to other people, but we’ll see how it goes once we get the next steps in place. That’s pretty active right now. We’ve formed an LLC and our nonprofit to make that happen.
What’s helped you stay hopeful throughout your cancer journey?
It’s hard to think in terms of hope when you are told you have stage 4 colorectal cancer, you’re not going to have any other options or it’s a grave diagnosis. Sometimes it’s hard to remove yourself from thinking way into the future. You have to just take it day by day. Take every day, even if it’s minute by minute, hour by hour. Do what you can to help yourself get through the day. Join support groups. That’s been such a big, thing.
The first thing you need to do is never look at Dr. Google. It’ll send you down a rabbit hole of despair. I had my first mental breakdown ever because I was looking at Google and looking at different statistics, then I started thinking about my kids. Avoid that.
Find your people. Find people that will lift you up and support you. A lot of people lose their support networks, especially once they’re out of treatment. Everyone thinks, I’m cured or thinks, you’re done. You’re never really done. Whether the physical stuff is over and the treatments are over, there’s going to be mental and emotional damage. Don’t dwell on that. Everyone goes through this with a cancer diagnosis. It’s okay to not be okay.
What advice do you have for someone recently diagnosed with cancer?
If I have any advice for anyone starting a diagnosis is, once you get diagnosed, it’s going to be rough at first. But once you get through that initial despair and anxiety, start setting goals. Future goals.
Something my integrative medicine doctor told me and it’s been my mantra ever since, he said, “Jason, set a goal and reach it. And once you reach that goal, set another one. Always keep your eye on the prize.”
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
