"It Runs In The Family"
Not long after I had recovered from my radical cystectomy, the medical team at Emory University asked that I have a full genetic panel completed. My medical team was dumbfounded by how someone so young and with no risk factors developed bladder cancer. In preparation for the meeting with the geneticist, I needed to gather as much family history as I could find. This is when I discovered that cancer actually runs in my family.
Collecting my family history of cancer
When I sat down with the geneticist and we got around to filling out my family tree with everyone’s medical conditions and history, I promptly pulled out 2 pages worth of notes.
- My paternal grandad had throat cancer.
- My maternal great grandfather had a rare stomach cancer.
- My maternal grandmother had uterine cancer.
- My mom’s sister had breast cancer.
- My cousin had renal cancer.
- My mom has thyroid cancer.
Although I had a significant list of cancer fighters in my family, none of these cancers were the same or necessarily hereditary. So we were still at a loss.
I wish I had this information earlier
After gathering my family’s medical history I realized it would have been so beneficial to have this information when I first went to my gynecologist to complain about the bleeding I was experiencing between periods. I knew about my mom and aunt’s cancers, but with that limited knowledge, my gynecologist only drew blood, ran a thyroid test, and counseled me on being tested for the BRCA gene. A more complete family history may have spurred her on to doing a complete blood panel and listening more to the symptoms I was describing. We are also very positive having this information on hand would have cut down on the back and forth in the ER over whether my mass was cancer or not.
Testing positive for Lynch syndrome
When my genetic panel came back, the only thing they discovered was my tumor tested positive for Lynch syndrome. Although this predisposes me towards any number of cancers, with my family's varied diagnoses, everyone would need a genetic panel to confirm if Lynch syndrome was the culprit. I may not have inherited a specific cancer, but I could have inherited Lynch syndrome.
Getting other family members tested
Knowing what I know now, I’ve passed along my genetic information to my family. We hope to have as many of us tested for Lynch as possible, to not only find out if that is what caused my cancer, but to help my loved ones have the information to monitor more closely for cancer themselves.
Have your views towards bladder removal changed since you were diagnosed?