20-year-old patient: You’re never too young to get colorectal cancer
I was just coming off of my first year playing college basketball in August 2021 when I was diagnosed with stage IV colorectal cancer.
I felt scared and very confused. I’ve always watched my weight and cared about what I put in my body. So, I didn’t understand how I could have colon cancer at the age of only 19.
I learned the reason right after my diagnosis: genetic testing showed I have Lynch syndrome. It’s a hereditary condition that makes me more likely to develop multiple cancers over my lifetime. I am the first person in my family to have it.
Glad to be the only one in my family with Lynch syndrome
Because I tested positive for Lynch syndrome, genetic counselors recommended that the rest of my immediate family get tested, too. I was relieved to learn that no one else had it.
Hopefully, this means that none of them will have to go through what I did: the extreme back and hip pain that eventually led to my diagnosis, the surgery needed to remove the golf-ball-sized tumor embedded in almost eight inches of my colon, and the chemotherapy/immunotherapy combination I’m still receiving that initially gave me such severe diarrhea that I lost 45 pounds in just under three months.
Since I’m the first person in my family to have Lynch syndrome, I’ll also know to look for it in future generations. But I found out while looking into fertility preservation options before treatment that there’s existing technology that can modify the Lynch syndrome gene in sperm before it gets used for egg fertilization. So, theoretically, I could have children someday without passing the Lynch mutation on to them. That’s a huge relief.
How having Lynch syndrome has helped me
If there’s anything good to be said about having Lynch syndrome, it’s probably that it made me eligible to participate in a clinical trial at MD Anderson. My local doctors had a treatment plan laid out after my surgery, but my family and I wanted a second opinion. We knew MD Anderson is the best place in the country for cancer treatment. So, that’s where we went.
We met with medical oncologist Dr. Michael Overman. He said my tumors are considered microsatellite instability-high. This means the cancer cells have a hard time hiding from the immune system. That was great news, because the immunotherapy clinical trial he recommended would strengthen my own immune system to better fight off the cancer.
He also said that some participants were seeing very high success rates, but that the research is still ongoing. That was all I needed to hear. I joined the trial on Oct. 11, 2021.
My colorectal cancer treatment on a clinical trial
I’ve shown no new growth or metastases since the surgery I had on Aug. 13, 2021. But I’m not going to lie: my treatment days are long and hard. I spend one out of every 14 days receiving drugs intravenously at the hospital. Then, I go home with a chemotherapy pump that runs for 46 hours.
Making peace with life after a Lynch syndrome diagnosis
At my age, I should still be playing college basketball and hanging out with my friends. Instead, I’ve been getting colorectal cancer treatment for six months and spending a lot of time home alone.
I’m no longer able to play basketball competitively. So, I couldn’t return to Manhattan Christian College in Kansas. But I’m taking a full load of online courses now locally. And I’m able to enjoy my social life again with no restrictions.
I’ve made peace with the fact that I’ll probably never play college basketball again. It was my dream to do that ever since I was a little kid, but I actually got to do it for a while. That’s enough. Now, I’m continuing to work hard toward my degree in communications. That goal hasn’t changed. I’ll also keep making the most of every day, because each one is a gift, no matter what.
It feels great knowing I’m contributing to cancer research. Doctors are diagnosing more and more people under the age of 50 with colorectal cancer each year, but my age still makes me a very unusual case. That’s why I get a sense of security in knowing I’ll need close monitoring for the rest of my life. If anything else ever shows up, it will be taken care of quickly.
If there’s one thing people can take away from my experience, it’s that you’re never too young to get colorectal cancer. So, if you feel like something’s wrong, talk to your doctor. And take any and all symptoms seriously. It might just save your life.