Hereditary Cancer, My Story
This week is National Hereditary Cancer Awareness Week. Here’s my story.
When I learned of my cancer diagnosis in September of 2021, I was simultaneously not surprised and surprised. Not surprised because I had these vague, annoying symptoms: bloating, fullness, no appetite, and fatigue for at least several months. But they were so benign in my mind that I felt silly making an appointment with my physician, so I didn’t. My mistake. Once I was diagnosed, a lightbulb went off and all those months of not really feeling well but not feeling sick enough to see my doctor made sense.
What I was surprised about was that my cancer was genetic. As far as I knew there were no other females on either side of my family that were diagnosed with ovarian cancer. I have four aunts, ten female first cousins and almost too numerous to count second and third cousins. They are older and younger than me. No cancer. But there was a history of cancer from my father’s side of the family. Prostate cancer. A male cancer. Since I was a female, I didn’t think that I had to be concerned about a history of prostate cancer for me personally. Well, that’s not exactly the case.
I have been diagnosed with the ATM genetic mutation. The ATM genetic mutation was discovered a year after my father’s death. Since my father and my mother were not able to get tested prior to their deaths there is no way of knowing from which parent I received the mutation from. During genetic counseling I was told that the mutation most likely came from my father’s side of the family, but that they could not rule out that it came from my mother’s side either. The thing about genetic mutations, there a several and they are all different, is that they can predispose you to a variety of cancers, not just the cancer that the person you inherited it from had. In my case the ATM genetic mutation predisposes me to prostate, ovarian, breast, and pancreatic cancer. So unbeknownst to me, I should have been concerned with my father’s prostate cancer history.
So why am I telling you this? Well first off, please don’t have a false sense of security like I did that there is no family history of, in my case prostate cancer, therefore I don’t have to be worried about ovarian cancer. Wrong. And while only 10-20% of all cancers come from an inherited genetic mutation, if you are in the 10-20% and get diagnosed with cancer you will second guess yourself and lament that you should have been more aware.
The second thing I want you to know is if there is a family history of a certain type of cancer typically associated with one gender, don’t think you are out of the woods because you are a different gender. My father’s prostate cancer can be from an inherited genetic mutation that predisposes me to ovarian cancer. A mother’s inherited genetic mutation can predispose her son to breast cancer (yes, men can get breast cancer too). I think you get the idea. Knowledge is power.
But the biggest thing I want you to know and the reason that I am sharing my personal health information with you is to encourage you, if you are worried about your risk and want to know more, to speak with your physician, a genetics counselor, or an expert in genetics. If I had known I had a predisposition to cancer would that have prevented my cancer, probably not but who knows. If knowledge of the mutation caused me to preventatively remove my fallopian tubes (studies show most ovarian cancer starts in the fallopian tubes) or have a preventative hysterectomy, then maybe it would have prevented my cancer. If knowing I had the mutation caused me not to dismiss my symptoms and go to the doctor sooner, then maybe I would have been diagnosed at an earlier stage. The thing is, it’s all speculation at this point BUT, had I known, I could have been more aware of my symptoms and could have taken preventative steps AND steps to get diagnosed sooner. We all know, the earlier the diagnosis, the better chance for a good treatment outcome.
If you want to know more, check out FORCE at www.facingourrisk.org . There you will find a plethora of information about genetics and cancer. Talk to your doctor and if genetic testing is recommended, to a genetic counselor to talk through your questions and/or trepidations about getting tested before you decide if it’s right for YOU. You also may be eligible for free or low-cost genetic testing. The Ovarian Cancer Research Alliance at www.ocrahope.org just launched a pilot program to provide free genetic testing to qualified individuals. They too have a world of information on their website. I’m sure there are other wonderful organizations out there getting the word out that I don’t yet know about too. The main message is don’t be afraid to ASK if you are concerned about your risk. Get tested if you qualify and if it is right for you so you can learn how to reduce the risk of cancer for you and for other family members. Knowledge is power.