Cancer? You're Too Young For That...
As young adults with cancer, this is by far the most common reaction I get when I explain my colon cancer diagnosis, especially since this particular cancer is seen as an "old person's disease." So what do you do when even your doctor has that attitude?
I cannot remember exactly how many times in a five year period that I heard this phrase from a doctor, but it was a lot. There were many diagnoses thrown at me, including Ulcerative Colitis, Leaky Gut Syndrome, hemorrhoids, or a small intestinal tear. When I would ask about the possibility of colon cancer, that's when the phrase would come.
"You're only 17, you're too young for that."
It didn't seem to faze them that 13 of my family members had received the dreaded colon cancer diagnosis, including one cousin in his twenties. In fact, no one even asked about my family history; I had to insist that they listen to it. I knew that daily rectal bleeding was not normal for a 17 year old, but none of the doctors I visited seemed at all concerned.
I insisted on a colonoscopy at my first appointment and they reluctantly obliged me, but it failed to show anything. For the next five years no one would order another scope even though the bleeding continued.
Right after my 22nd birthday I visited a new doctor because my symptoms had worsened. Even before my appointment I knew without a doubt that I had colon cancer. I was sleeping sometimes 18 hours a day, my abdominal pain was almost unbearable, and I had not used the restroom in almost two months with the exception of passing blood clots.
When I reached the doctor and relayed to him my symptoms and how they had worsened over the past five years I was once again told it was probably Ulcerative Colitis. When I mentioned the possibility of colon cancer he literally laughed and then said "the phrase"..."You're too young for that."
I wish I could have seen his face when he found the tumor during my colonoscopy.
Here are some tips I've picked up since my experience:
Be Your Own Advocate
It took me five years to learn this, but no one knows my body as well as I do. None of my doctors follow me around and see how I feel all day, every day. These are things that I must tell them, and if they choose not to listen then I must either make them listen or find someone else who will. We must advocate for our own health because at the end of the day we are the only ones that must live with how our bodies feel.
Ask About Genetic Testing
The fact is, there is a genetic mutation called Lynch Syndrome which runs in my family, causing our colon cancer risk to rise to 85% chance in our lifetime. This specific cancer syndrome also increases our chance of other cancers such as endometrial and ovarian, among others.
Armed with this new knowledge I was able to evaluate my options and make the decision to change my treatment plan. Instead of just surgically removing the tumor I decided to undergo a total colectomy, or removal of the entire colon, to be preventative. This lowered my risk of future colon cancers from 85% to about 5%. Seeing a genetic counselor or a geneticist and having your family history evaluated can be life saving and empowering.
There are many hereditary cancer syndromes that exist and can be tested for besides Lynch Syndrome, including Familial Adenomous Polyposis (FAP), BRCA1 and BRCA2, Peutz-Jeghers Syndrome, Fanconi Anemia, and many more. The choice to learn this information might seem daunting, but it also opens up screening options that could save your life.
If you are at a high risk for colon cancer, or any cancer for that matter, be vigilant about screening; early detection can be life saving. Find a medical team who understand your risks and will be happy to offer you screening based on your family history and established national guidelines.
You are your best advocate. Research your options, listen to your body, and remember that knowledge is power.
Reagan Barnett is a 30 year old, stage II colon cancer survivor living with Lynch Syndrome. She was the December 2012 model for the Colondar and is an alum of First Descents. This whole cancer thing caused an early life crisis which resulted in her pursuing her PhD in cancer biology and kicking her shyness to become a public speaker for genetic cancer awareness. You can follow her on twitter at @genesdontfit , subscribe to her blog whenmygenesdontift.com and find her on I Had Cancer at rbarnett16.