Growing up, most of us were thought to believe that cancer is an “old person’s” disease. After being diagnosed at the young age of 35 with breast cancer, I now know that is not true at all. With the advancement in medical technology and research, we can begin to tackle this awful disease head-on and even before it happens. This comes with not only preventative medicine but the little talked about, unknown world of genetics. Genetics, doctors and researchers are realizing, plays an important part in why some of us are “predisposed” to certain diseases, including cancer.
Take myself for example, about ten years ago my dad told myself and my siblings that we should go see a Genetic Counselor to have genetic testing done because he tested positive for Lynch Syndrome, aka: Hereditary Nonpolyposis Colorectal Cancer (HNPCC). My dad grew up in a family with fifteen brothers and sisters whom most of them, including my dad have either had cancer or passed away from cancer. When he was in his early 40’s, part of his colon was removed due to a tumor as well as multiple polyps being found every year afterwards.
His Oncologist knew this wasn’t just a coincidence; something had to be the reason why. The Oncologist urged my dad to have genetic testing to see if the reason for these multiple polyps might be Lynch Syndrome. Once Lynch Syndrome was declared the actual cause, this helped paint a clearer picture for him and his medical team. They know not only what to look for, what tests need to be completed so we can hopefully get in front of this before it is too late.
But there is a flip side to this and I can attest to that feeling; knowing you have a gene that predisposes you to cancer and that one day you might get cancer and possibly die. I understand why some folks do not want to have genetic testing. It is easier to walk within the unknown rather than to face a fear. It’s like staring down the barrel of a gun waiting for someone to come and pull the trigger. However, think about the control and power you have with this information. You can direct your healthcare (which you all should be doing by the way) as well as make sure your medical providers stay up to date in how you should be treated.
When I was first told I had Lynch Syndrome, I was upset and angry. Instead of stewing in those emotions, I empowered my medical team to make sure I had all of the correct testing completed every year so if anything arises, it is caught, hopefully early. They also make a point to research, each year what advancements have been made and if any additional testing should be done when I see them.
Lynch Syndrome predisposes both women and men primarily to colon cancer and it is most prevalent in people of color. Because of this, I have a colonoscopy every year and while most might balk at this, let me just say the drugs are good! Probably the best sleep I get all year! Lynch Syndrome also predisposes women to ovarian and endometrial cancer. Each year at my annual, I have extra testing completed as well as a pelvic ultrasound. To some, this can be time consuming and not comfortable, but I would rather be safe than sorry.
When I was diagnosed with breast cancer, I told all of my doctors I firmly believe Lynch was the cause of my cancer. Most dismissed my assumption and said there was no way possible. Three years later, researchers are now discovering this might be true; Lynch Syndrome may cause breast cancer as well. My hope is that more research is done to see if there is a link between breast cancer and Lynch Syndrome. This way young woman like myself, will not have to go through what I did or at the very least be able to have mammograms at a young age that is covered by their insurance.
The thing about this gene is it is fairly new when it comes to known gene mutations. Many do not understand it and most have never heard about it. But those of us who have this gene mutation can not only get the word out but demand more research is done so we can save lives.
Genetic testing can be expensive and some insurance companies may not cover it but there are ways to work around this. If you do have a gene mutation and there are research studies in your area, Sign Up!! Researchers cannot figure out how to combat this without our help. For example, I was on a research study for ovarian cancer because I have this gene. No, I did not have ovarian cancer but because I was predisposed to it, I was able to be on this study. Not only did I help the researchers but I helped myself. Every few months I would get my blood drawn and have a pelvic ultrasound, where they would monitor me, At. No. Cost!!
What I want you to takeaway is this: If you have any cancer in your family, get genetic testing, it could possibly save your life!
