I Was Diagnosed with Stage 3 Colon Cancer at Age 34
After feeling "off" for nearly a year before a stage 3 colon cancer diagnosis, this mother of two shares her harrowing experience.
While it’s true that more men are diagnosed with colorectal cancer than women, the risks are virtually the same, according to the American Cancer Society: 4.3 percent for men and 4 percent for women. And among adults under 50, this cancer is on the rise: It’s now the number one cause of cancer-related death in men, and the third leading cause for women.
Young adults tend to be unaware of their risks or downplay colorectal cancer symptoms when they do appear. That was the case for Amy Hart, 35, who knew that something wasn’t right for nearly a year before demanding the tests she needed. Here, Hart shares her journey with colon cancer and how she’s adapting to a new normal.
No time to be sick
I used to say, “I don’t have time for a sniffle,” and it was true. I had a fast-paced job with long days and lots of moving parts and I lived for it. When I had my two girls, I found a way to keep going in my industry. I hadn’t had the flu in at least five years. I went to the ob-gyn every year and I saw a regular family doctor when I needed to. But overall, I was very healthy and had a strong immune system.
Even when I first started to feel the nudges that something wasn’t right, which was back in 2018, my first thoughts were no, I have my business, I have my girls who need this, this, and this, someone has a dentist appointment next week…when will I go in and get looked at?
Telltale signs of colon cancer
At the beginning, I really just didn’t feel like myself, which was frustrating. I felt tired a lot more and I was struggling mentally. I just didn’t feel good and I didn’t know why. Every doctor I saw during this time looked at my bloodwork and everything about me and thought it was anxiety.
They pushed me toward getting help for the anxiety I had around losing my mom to uterine cancer when I was young. I did seek help—I went to therapy to see if I was just not satisfied with my life. I think therapy is super helpful and it did get me feeling better about my anxiety…but I still wasn’t feeling like myself.
Then a few months later, about a year in, I started to have symptoms of bleeding when I was going to the bathroom. That was when I got indignant because I knew that didn’t happen to normal people. I knew it meant I was very sick.
Demanding a colonoscopy
A week later I got in to see a gastroenterologist (a GI doctor). I told him what was going on and he looked at my tests and said it might be an infection in my bowel or it might be stress.
It could also be a number of other things, and he said he didn’t want to give me a colonoscopy because of my age. So I sat there in his office and said, “call security then, because I’m not leaving unless you schedule me for a colonoscopy.”
What happened when I woke up after the procedure? They told me they didn’t even need to wait for a biopsy because they knew it was advanced colon cancer. It was like the most vindicating, disgusting lemon I’ve ever eaten in my life. I had known something was wrong for months, but when I got that news I didn’t want it. I was so afraid.
Personalized treatment for Lynch syndrome
I had the colonoscopy in mid-November of 2019 and began a six-week daily regimen of chemotherapy and radiation on December 9. A really good friend of mine, who was just a casual mom friend at the time, found out about my diagnosis. A radiologist at a local hospital, she called me and said you need to come to my people for your treatment.
I always say I have the best worst luck, but I’m not sure I would be alive if she weren’t involved. A few months later, after they’d stopped allowing visitors to the hospital because of Covid-19, she was still able to come and see me and it made a world of difference.
My initial chemo was oral, so I had to take six chemo pills a day, then I had radiation treatments.
Originally I thought I might have surgery first, but they had to approach my treatment a bit differently because I have something called Lynch syndrome. Lynch syndrome is a genetic mutation that predisposes you to a family of cancers.
Colorectal cancer is the biggest one, but you also have an increased risk of endometrial, stomach, breast, ovarian, intestinal, pancreatic, prostate, urinary tract, liver, kidney, and bile duct cancers.
Since my mom died of uterine cancer and there was a history of different cancers in my family, my surgeon suggested I get genetic testing prior to starting treatment, which was when I found out about my Lynch syndrome.
Becoming a cancer patient
After I started chemo and radiation, my identity really began to waver. I was always the healthy, happy helper who was there for everyone else, and I struggled to understand who I was if I wasn’t productive for everyone else and able to express my love in that way.
The treatments were hard physically, but for me, it was more of a mental thing. Going in to get radiation every day really makes you feel like a cancer patient and I struggled to separate myself from that.
Undergoing abdominal surgery
I completed my first round of treatment in January of 2020, then I had six weeks off to rest, recuperate, and let the radiation do its job. Radiation continues working in the body long after your last zap.
In February, I went in for a scan and there was no visible tumor, which was really good news. Next on the schedule was surgery, which would come the following month.
On March 19, I went in for open abdominal surgery. Because of my Lynch syndrome, they removed my entire digestive system below my small intestine. They also did a hysterectomy, removing my uterus as a preventative measure.
My colon was the next target: My original tumor was a stage 2 tumor, but I had lymph node involvement and my genetic predisposition meant that my cancer was technically staged 3B. So I had them take the entire colon because I didn’t want to live in fear.
After surgery, they biopsied all the tissue they could but there was no tumor left. Not even a lymph node or any piece that came back positive for cancer. The radiation had done its job, and the news was as good as I get after surgery.
Learning to live with an ostomy bag
Since I had the total colectomy (the procedure where they removed my colon), I also needed an ileostomy, where they connected the end of my small intestine to my abdomen so I could excrete waste into an ostomy bag. Learning to live with the bag was mind-blowing.
I had always been really hard on myself and never let my body be good enough—and at the beginning, I felt like the bag was going to make me a monster.
I tell people that when you first hear you’re going to need an ostomy bag, it’s OK to absolutely hate it. It’s even OK to hate yourself a little in order to process the idea of it, and I think I did that.
But then I started waking up every morning, looking at myself in the mirror and saying through gritted teeth, “This does not matter. It’s not that scary. And it means that you get to be alive.”
From the beginning, I made myself touch it and look at it and do everything myself. The first few weeks, whenever I emptied it or changed it, I considered that a success. Sometimes I would put on a super cheesy song from the ’80s that I loved and sing along while I changed my bag.
Sure, there were days when I cried on the bathroom floor, but then I would get up and see my girls and know I could do it for them.
The way I see it, if I either have a really rough road or no road at all, I’m always going to choose the road. No road was never an option. I’d take 100 bags before I say goodbye to my girls voluntarily.
Clean up chemo
Three months after my big surgery I started intravenous chemo. This was part of my Lynch syndrome diagnosis as well; it was a way to blast everything so that if there was a rare cancer cell somewhere in the body we would find it and get it, just to be extra cautious.
They called it clean-up chemo, and I had to do six rounds. I got to keep my hair, but it was really rough stuff.
I finished the clean-up chemo in September and I’m now on hiatus waiting for my next scan, which is coming up in April. I’m not expecting bad news—I don’t have a colon left to have anything in there—but I’m still a little worried. Right now, I’m working on how to live my normal, daily life without constantly thinking about it, but I’m hopeful that it will get easier.
Physically, I get worn down a lot easier than I used to. I used to be like an ever-charged battery, sneaking in a happy hour one day and being ready for soccer the next, but I’ve had to realign what recharges me and doesn’t drain me.
Sometimes that means saying no and disappointing people, but I’m working on finding worth and value in what I can do, not just in how much I can do.
Leaning on love and hope
More and more young people are dealing with cancer diagnoses while also trying to process the complicated world we live in. And especially when it comes to women and colorectal cancer, it’s insane how much higher our risk is than our moms’ and grandmas’. I’ve even met people who thought that only men got it, which obviously isn’t true.
Even I was pretty oblivious before I went through this and I have a family history of cancer. Knowing the right doctor to talk to or the right thing to look for is so important, and then it’s just persevering. Leaning on the ones you love and doing it for them and then rebuilding your lifestyle in the way you need and deserve.
If there is a moral to my story, it’s to listen to your body and not try to explain away symptoms. Early-onset colorectal cancer is on the rise, and the young people who are diagnosed tend to be diagnosed with late-stage disease. Don’t hesitate to get checked out.
—As told to Alyssa Sybertz