Hannah’s story begins in 2014 or 2015, when she first experienced symptoms such as pelvic cramping and bloating. Over time, her symptoms worsened, leading to more frequent UTIs and alarming signs like blood in her urine by 2022. Despite these symptoms, doctors initially dismissed her concerns, attributing her issues to common health problems or “white coat syndrome.” It wasn’t until December 2022, when her blood pressure spiked significantly, that a trip to urgent care led to a CT scan. It revealed a mass on her appendix, which doctors suspected was cancer.
Hannah describes the emotional toll of waiting for a diagnosis, especially the fear and uncertainty that followed the news that her cancer had likely spread. In late December, she received the devastating diagnosis of stage 4 appendix cancer with signet cell ring features, a rare and aggressive form. After an underwhelming and confusing initial consultation with her doctors, she and her husband sought a second opinion at Mayo Clinic, where a specialist provided a clearer plan of action and more promising news. Although her cancer was high grade, only 50% of it showed the signet cell features, which gave her hope.
Hannah’s treatment plan included 5 rounds of chemotherapy before undergoing a complex 12-hour surgery in April 2023. The surgery involved removing several organs, including her ovaries and uterus, as well as parts of her colon and ureter. This news was particularly hard to process, as it meant the end of her hopes for having biological children. She also had to deal with various physical challenges during recovery, such as learning to digest food again, managing pain, and dealing with temporary tubes and a catheter.
Despite the overwhelming circumstances, Hannah continued to push herself, slowly regaining strength with the support of her husband and sister. She also found solace in connecting with others through appendix cancer support groups, which helped her cope with the isolating nature of her rare diagnosis. Genetic testing confirmed that her cancer wasn’t hereditary, and a follow-up test after surgery indicated she was cancer-free at that time.
However, in early 2024, doctors detected a small spot on her lung, which they suspected was a recurrence of the cancer. She underwent 5 rounds of radiation, which she described as the easiest part of her treatment. Though her recent scans suggest another recurrence, Hannah remains focused on living fully, cherishing her relationships, and advocating for herself in the medical system.
Hannah’s key message to others facing similar health challenges is the importance of self-advocacy, seeking second opinions, and doing thorough research.
Name:
Hannah R.
Age at Diagnosis:
30
Diagnosis:
Appendix cancer (mucinous adenocarcinoma of the appendix; appendix cancer with signet cell ring features)
Staging:
Stage 4
Initial Symptoms:
Bloating
Fullness
UTIs
Blood in urine
Painful intercourse
High blood pressure
Spotting
Treatment:
Surgery (appendectomy, cytoreductive surgery)
Chemotherapy (FOLFOX, HIPEC)
Radiation to treat recurrence
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers Treatments: Hyperthermic intraperitoneal chemotherapy with mitomycin C (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
Symptom: Severe abdominal pain Treatments: Surgery (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with bevacizumab & capecitabine)
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.
Brittany’s Stage 4 Liver and Gallbladder Cancer Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Brittany, a nurse who works in surgical oncology and a proud mother of 2, was diagnosed with stage 4 hepatocellular carcinoma (liver cancer) and cholangiocarcinoma (gallbladder cancer). She is now officially “no evidence of disease” (NED) thanks to surgery and immunotherapy.
Brittany’s story starts about 3 years ago, when all of a sudden, she stopped menstruating. A pelvic ultrasound failed to turn up any potential cause. In September 2021, she began to lose appetite and her weight began to drop, and she ended up losing a total of 15 to 20 lbs. Her PCP ran a full array of lab tests, but they all came back normal.
In January 2022, Brittany started experiencing bad pain in the upper right quadrant of her abdomen. She rushed herself to a hospital where she had more lab work done and, this time, a CT scan of her chest, abdomen and pelvis as well. Once again her tests failed to turn up anything–but the CT scan found a 10cm mass on her liver.
Brittany transferred to a larger hospital where she spoke with a specialist in liver surgery. A few days later he and his team operated on her to remove the diseased portion of her liver (which amounted to 60% of the organ). However, they found out that her gallbladder had also been affected and portions needed to be removed too, and moreover discovered lesions on her lungs. Further testing finally revealed the true nature of her cancer, and the lesions on her lungs determined that it was stage 4.
Though Brittany’s doctors were optimistic about her chances, they were also realistic, given that liver cancer is not easy to treat and that cholangiocarcinoma is known to be extremely aggressive. But Brittany was determined to beat the odds and overcome her cancer.
Brittany began to undergo immunotherapy in April 2022 and was administered atezolizumab and bevacizumab every 3 weeks. Her cancer responded favorably to the treatment; her liver has been cancer-free since the resection, and all the lung lesions have disappeared.
Brittany’s last treatment was administered in December 2022. Since stopping treatment, she has gotten a CT and MRI with lab work every 3 months; these have recently been spaced out to every 6 months for surveillance.
Brittany would like to share that her experience has definitely changed her life. She refuses to take things for granted any longer, makes sure to enjoy every moment, and is intent upon giving back as much as she can. She also urges fellow patients to take full charge of their own healthcare, to educate themselves fully, and to be their own advocates. “Don’t believe the statistics!” she adds–they’re really just numbers.
Name: Brittany B.
Diagnosis:
Hepatocellular carcinoma (liver cancer) and cholangiocarcinoma carcinoma (gallbladder cancer)
Staging:
Stage 4
Initial Symptoms:
Amenorrhea
Unexplained weight loss
Loss of appetite
Pain in right upper quadrant of abdomen
Treatment:
Surgery: removal of portions of liver and gallbladder
Immunotherapy: atezolizumab and bevacizumab
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.
Samantha’s Stage 4 ER+ PR+ HER2+ IDC Breast Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Samantha’s journey with stage 4 breast cancer began in March 2019 when she was 22. Living in Virginia with her husband and young daughter, she first noticed a lump in her breast. Initially dismissed by her primary care physician and an ultrasound tech as an infection, a biopsy eventually confirmed her cancer diagnosis. Despite the initial belief that her cancer was at stage 1, further tests revealed it had spread, making it stage 4 breast cancer.
Her treatment plan involved chemotherapy, which she had to stop early due to severe neuropathy, followed by a lumpectomy, radiation, hormone therapy, and targeted therapy. Despite significant side effects, she managed to maintain no evidence of disease (NED) for some time. After two years of hormone therapy, Samantha decided to take a break to try for a baby, which led to a successful pregnancy in April 2022.
However, during her pregnancy, she and her family moved to Alaska. While there, Samantha’s cancer recurred, causing severe back pain due to lesions in her spine and pelvis. Unable to travel back to Virginia without stabilizing her spine, she underwent surgery and later radiation before returning to her oncologist for a new treatment plan. She joined a clinical trial involving a new radium drug for bone metastases but had to leave it due to mixed results.
Samantha then resumed hormone therapy and targeted therapy with different drugs than before. Throughout her treatment, she emphasized the importance of careful decision-making, the support of her family, and maintaining a positive outlook.
Name: Samantha L.
Diagnosis:
Breast Cancer
Invasive ductal carcinoma (IDC)
ER+
PR+
HER2+
Staging:
Stage 4
Initial Symptom:
Lump in breast
Treatment:
Chemotherapy
Surgeries: Surgery: lumpectomy, spinal surgery (fractured vertebrae)
Radiation
Hormone therapy: anastrozole & letrozole
Targeted therapy: abemaciclib & ribociclib
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I went to my regular doctor who said it was nothing. I was so young that it couldn’t be breast cancer.
Introduction
My husband and I live in Virginia and have a 1-½-year old daughter. I was diagnosed with stage 4 breast cancer at 22 in March 2019.
Pre-diagnosis
Initial Symptoms
It was the day after Valentine’s Day. My husband and I weren’t married yet. He was my boyfriend at the time. My mom loves to celebrate Valentine’s with the family. The celebration had ended and we were watching TV. He hugged me from behind and squeezed me tight. When he did, I felt some pain in my left breast. I realized there was a lump.
PCP Appointment
I went to my regular doctor who said it was nothing. I was so young that it couldn’t be breast cancer. They told me to put a warm compress on it, but that didn’t do anything. They put me on antibiotics thinking it was an infection and, of course, that didn’t help.
They finally sent me for an ultrasound and the ultrasound tech looked at it and said, “This looks like an infection. You’re 22 and I’ve never seen breast cancer in a 22-year-old, so that’s not what it is. But just in case, you can get a biopsy if you want.”
Getting a Biopsy
I almost left the hospital and went home without doing anything about it. He said it wasn’t urgent, but there was an opening so I got the biopsy done.
When you’re 22 and recently graduated college, cancer is not on your mind at all.
Diagnosis
Biopsy Results
The results revealed abnormal cells, so I had to go in for a second biopsy. That was the one that told us that I had breast cancer.
Reaction to the Diagnosis
When you’re 22 and recently graduated college, cancer is not on your mind at all.
My breast surgeon called me on the day the abnormal cells came back and said, “You need to come in again.” I went in and that’s when she started to prepare me that it could be cancer. She ended up calling me when she found out that it was.
She told me she cleared out an appointment for me at the end of the day and that we should get more information about the hormone receptors at that point. She scheduled an appointment so that I could talk to my family and get all of our questions written down before the appointment.
Treatment
Discussing the Treatment Plan
I didn’t know anything. I thought it was stage 1. I went through it in stages, always thinking that it was the least concerning thing. I don’t think there’s a big shock. It came about over time as we had more questions and learned more about it.
She was suspicious right when I walked in. She wanted to check the lymph nodes under my arm because that’s the first place cancer spreads. My boyfriend, my parents, and a friend who’s a doctor came to the appointment with me. They all had questions and wanted to help me and know everything. They went into a separate room and she took me back and did the biopsy under my arm.
When we went back, she laid out a plan. It was March and she said we should be done with all active treatment by Christmas. She said the standard is chemotherapy and then surgery, which was going to be a lumpectomy or a mastectomy, and then radiation. Since my cancer was hormone-positive, I would be on hormone therapy for some years after.
The spot was more contained. They said it was probably cancer because the chemo shrunk it. Then we realized I was stage 4 breast cancer.
Chemotherapy
There were a few hiccups. I had to stop chemo early because Taxol (paclitaxel) was causing neuropathy in my fingers. It got too bad and my oncologist didn’t want permanent nerve damage to happen. I was a little bummed about stopping Taxol early because it made me feel like I wasn’t doing everything that I could, but it’s what happens when your side effects get too bad.
Originally, all of my doctors wanted me to do a double mastectomy because I was young. Younger women tend to choose a double mastectomy because it gives people peace of mind to make sure all of the breast tissue is removed and there’s no place for cancer to grow.
I had a scan where they saw a spot in one of my ribs. They weren’t positive it was cancer and it was in a weird location that they wouldn’t be able to biopsy it. We talked to neurosurgeons about removing it, but we weren’t sure if it was cancer.
When I had chemo and scans again, the spot was more contained. They said it was probably cancer because the chemo shrunk it. Then we realized I was stage 4 breast cancer.
Lumpectomy
At this point, mastectomy isn’t going to matter too much because the cancer has already spread past the breasts. If I do a lumpectomy, the recovery time is shorter so I could get started with radiation immediately after. They wanted to do radiation on the rib to target the spot that was seen in the scan since it couldn’t be removed with surgery.
I ended up doing a lumpectomy, which is weird because when you think about cancer when you don’t have it, you think you’d do the most drastic option possible. But when you’re faced with your options, you’re not always picking that for yourself and your situation.
Radiation
After the lumpectomy, I did radiation and finished that in November.
My case wasn’t as bad of a stage 4 breast cancer case, so we were hopeful that I was cured at that point and that getting pregnant would be fine.
Hormone Therapy & Targeted Therapy
I started hormone therapy and targeted therapy after radiation and did that for two years. Since I had radiation on that tiny spot on my rib, I had no evidence of disease (NED) on scans.
I was having a lot of side effects with hormone therapy and targeted therapy. Being NED for so long, I didn’t even know if these therapies were doing anything or just making me miserable. It was causing a lot of physical and mental side effects that were the hardest time in my life so far. Way harder than chemo, radiation, and the rest of it.
I wanted to stop early. My oncologist wanted me to get to three years, but I could only make it two.
Fertility Post-Treatment
I wanted to try having a baby so I asked him. He cited some recent studies about women who had breast cancer, stopped hormone therapy after two years, took a break, got pregnant, and then went back on treatment. The chances of their cancer reoccurring didn’t increase. Some people had their cancer come back and some people didn’t, but getting pregnant didn’t affect that.
However, the study was for stage 3 and below and not stage 4 breast cancer. Since I only had a tiny spot of cancer and it wasn’t in multiple places throughout my body, my case wasn’t as bad of a stage 4 breast cancer case, so we were hopeful that I was cured at that point and that getting pregnant would be fine.
I got off hormone therapy and targeted therapy. I started in November 2019 and ended in October 2021. I wasn’t having periods the whole time and then my cycles returned to normal. I felt amazing. I think it was because I wasn’t on hormones anymore. Then I got pregnant in April 2022.
You can’t let the fear of cancer coming back control your life. You can’t make every decision based on whether your cancer comes back or not.
Pregnancy was great. I still had all of the same pregnancy side effects, like nausea, but I was so used to being nauseous from treatment that it didn’t affect me. I just felt good that I wasn’t on medication. There were lingering side effects from both chemotherapy and targeted therapy. I still have hot and cold sensitivity in my fingers, toes, ears, and teeth. I have dry eyes.
It can be difficult because people don’t want their cancer to come back. They don’t want their child to be left without a mother. That’s the main worry people have. My philosophy on it is that you’re not a statistic. You don’t know what could happen in your life and you can’t let the fear of cancer coming back control your life. You can’t make every decision based on whether your cancer comes back or not.
If I can, then I will. If I feel good, then I’m going to do this or that. It’s not a decision that I made easily. My husband and I talked through it and we spoke to our doctor about it. We did what was best for him and what was best for our family specifically. It’s not for everybody. You have to figure it out for yourself.
There are all these medical questions that you need to ask your doctor, but it can be a good thing and possible. There’s a lot of new research coming out. You don’t have to be afraid of having hormones in your body after having hormone-positive cancer.
Moving to Alaska
In the middle of my pregnancy, we moved to Alaska, so we were away from my oncologist for a while. I was still keeping in touch with him, but we were hopeful that I was cured since I had scans that showed no evidence of disease for so long after my daughter was born. I was breastfeeding, so we didn’t do a lot of monitoring because I was still feeling good and there were no new symptoms.
Several lesions throughout my spine and pelvis were found on the MRI.
Cancer Recurs
We were on a mountain one day taking family photos when I collapsed to the ground. My back hurt so bad that I couldn’t get up. Five guys had to carry me to the car. I went to the ER that day and eventually had a scan. The results showed a fracture in my spine because there was cancer growing in it, crushing the vertebrae, and causing the pain. Several lesions throughout my spine and pelvis were found on the MRI as well.
I couldn’t get on a plane to fly back to Virginia because they were worried that if something shifted, I could be paralyzed, so I needed to have surgery to stabilize my spine before moving back. We couldn’t even think about treating the cancer until that happened. It was scary because we weren’t doing anything to address the cancer.
I had surgery in the middle of August followed by a very painful recovery. I was already in a lot of pain beforehand, but I needed two weeks of recovery. When we got to Virginia, I met with my oncologist and came up with a new plan.
New Treatment Plan
They thought I needed radiation on the vertebra that had the fracture because there were other spots throughout my spine and pelvis, but that was the biggest and causing the most problems. We did three rounds of radiation on that first.
My oncologist knew that hormone therapy and targeted therapy made me miserable, so he gave me three options. He said I could go on hormone-targeted therapy, I could take a chemo pill called Xeloda (capecitabine), or I could get on a clinical trial.
I couldn’t start the trial until 14 days after my last radiation, so for two weeks, I wasn’t doing anything and I could feel things getting worse.
Joining the Clinical Trial
He was excited about the clinical trial because it used a new radium drug targeting bone metastases. It was already an approved treatment for prostate cancer with lots of success and this trial was testing it on metastatic breast cancer patients. We went with that because he said it could eliminate what’s in my bones.
The problem was that I didn’t know which group I would be in. They were going to tell me, but I was either going to be in the group getting chemo or in the group getting chemo and the radium drug.
That was a stressful time because there was a period when I had to wait to get approved for the trial. I couldn’t start the trial until 14 days after my last radiation, so for two weeks, I wasn’t doing anything and I could feel things getting worse.
I ended up in the radium arm of the trial, which was good, and I did that for a while. It helped with my pain a lot and decreased some of the markers in my body.
I ended up having to go off the trial because my scan showed mixed results. Some areas were better, but some areas were worse. I think it’s because my original scan was in September and not right before I started the trial. There was that two-week period when things got worse, but there’s no way of knowing if that was it or not.
Hormone Therapy & Targeted Therapy
After the trial, I talked with my husband and my family and decided that I was going to give hormone therapy and targeted therapy another try. My oncologist recommended trying a different drug than what I was on before, so that’s what I’m doing now. I’m on anastrozole and abemaciclib, which is slightly different from the letrozole and ribociclib that I did in 2019.
The whole point of stage 4 treatment is to find a treatment that you can tolerate for the rest of your life.
Treatment Decision-Making
People don’t realize how much thought is put into treatment-decision making. You think about it for days, weeks, and months, talking it through and talking to doctors. I think that experience was good because it led me to my decision and made me realize that I’m exactly where I should be.
Having a Strong Support System
I have a supportive husband and family who help talk through things with me. I think about things a lot, pray all the time, and try to get the wisdom to make all these decisions in a way that’s going to be the best for myself, my husband, and my daughter.
It’s not just about patience. It takes a lot of work and it’s not something that you make a split-second decision about. There’s a lot of thinking and praying.
The whole point of stage 4 breast cancer treatment is to find a treatment that you can tolerate for the rest of your life. When we went to a new center, found out all the information, and talked with my oncologist more about whether this was realistically going to be the best option for me, that’s what made us think that this is what’s going to be good.
It wasn’t just me. My husband was so afraid of me being on it again. He knew how much I suffered when I was on it. It affects both of us. Going on it for the second time around was nice. It was working better. I don’t know if it’s because I went through a pregnancy, I’m older, it’s a different drug than before, or if I have a different mental attitude towards it.
If I didn’t have a baby who was so dependent on me, I don’t think I would’ve even considered going back on hormone therapy.
Everything happens for a reason. Some people thought it was a dumb decision for me to get pregnant, but having her is what made me do this treatment in the first place. If I didn’t have a baby who was so dependent on me, I don’t think I would’ve even considered going back on hormone therapy. I would’ve done the chemo pill. It could have worked, but it could not have worked. Having her around gave me this huge drive to live for as long as possible. It’s what made me even try it again in the first place. I wouldn’t have even known that it would be better this time around.
A cancer diagnosis is harder on the family than on the person going through it. Your family loves you. A lot of family members feel like they’re being pushed away and that they’re not wanted. My instinct is to do that because I don’t want to put a burden on them. But at the end of the day, it’s important that they’re there. The best thing that a family member can do is be there and listen. What to say and do is going to be different for everybody, but being there is a good place to start.
Words of Advice
Don’t wait. If you want to do something, do it. You never know when your life is going to dramatically change. I didn’t realize how much I enjoyed picking up my baby and rocking her to sleep then all of a sudden, it’s taken away from me.
When we moved to Alaska, people asked why we were going. We had an opportunity, so we’re going to move to Alaska for a year. We probably could never do that again because now I need all this treatment so I’m back in Virginia where my original team is.
If you want to do something, do it while you can because you never know when you’re physically not going to be able to do it.
Don’t wait. If you want to do something, do it. You never know when your life is going to dramatically change.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Nine years ago, Alli was diagnosed with colon cancer, but what she actually has was appendix cancer–and she only found that out many years later. She is currently NED, or “no evidence of disease,” and in her words, “It’s taken a lot to get here.”
Alli had initially experienced intense abdominal pain, which had been diagnosed as appendicitis. Her appendix was successfully removed, but its “angry” appearance led her doctors to send it to pathology for a closer look. It was initially diagnosed as colon cancer because it behaved like colorectal cancer. She then underwent surgery to remove a portion of her colon.
Alli was declared NED and enjoyed 7 years of being cancer-free before she experienced what seemed to be a recurrence of her colon cancer–but her doctors finally determined that what she had was actually stage 4 appendix cancer.
Alli is sharing her story with us today not only to stress the importance of proper diagnosis and treatment as well as advocating for oneself, but also to help shift perspectives regarding stage 4 cancer and how it may not necessarily be a death sentence; to establish the importance of properly listening to one’s body; and to reframe healing after cancer as an opportunity to build a better, more complete version of the person one used to be.
Name: Alli M.
Diagnosis:
Appendix cancer
Staging:
Stage 4
Symptoms:
Severe abdominal pain
Treatment:
Surgery (right hemi colectomy, appendectomy, HIPEC)
Chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with avastin and xeloda)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers Treatments: Hyperthermic intraperitoneal chemotherapy with mitomycin C (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
Symptom: Severe abdominal pain Treatments: Surgery (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with bevacizumab & capecitabine)
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
