Cancer affects everyone. Whether it’s you, a parent, a sibling, your neighbor or a helpless child in your community, it’s always concerning, if not traumatizing.
Growing up in a tight knit Jewish community made it difficult to hear the news of someone unfortunately falling victim to this dreadful disease. In the 70’s and 80’s, when I was young, people were quiet about cancer. Fortunately, today, we are no longer shielded, and we are no longer silent. There is so much more awareness about cancer and people have become public about their journeys. We talk about it, raise awareness by running half marathons, walk 5k’s, and wear specific colors to signify our fight against specific kinds of cancers. It’s part of society and we don’t feel the need to hide away from it anymore. We are still, however, afraid. At least I am.
Over ten years ago my father was diagnosed with pancreatic cancer. One of those silent killers, just like ovarian cancer. It was devastating, both to watch and experience. He lived and fought for 18 months. A time during which my family was inseparable.
As the years passed after his death, my sister had more children, and I got married and had beautiful children of my own. Cancer was now mentioned in a more casual way, sometimes jokingly and sometimes not. We talked about who would get what (g-d forbid) and who might not get anything at all. The one thing we all agreed on however, was that we needed to get genetic testing because of our family history.
We assured our mother we would do it, over and over. After all, she’s the pioneer of our entire family and was rightfully concerned. And so this year we finally decided to meet our fate head on and get tested.
Genetic testing is great, seriously. It puts you into two groups – a high risk factor group, or an average risk factor group. In my case, I was convinced that I was a carrier of genetic mutations because of my family history of both ovarian and pancreatic cancer.
I met with a wonderful geneticist who asked me a series of questions regarding my family history. My father died of pancreatic cancer, which is the PALB2 mutated gene. His mother died from ovarian cancer which is the BRACA1 gene when he was in his twenties. Based on this information, the geneticist reviewed a panel of diseases with me that she felt I should be tested for, plus 10 additional mutated genes which are common among Ashkenazi Jews.
My mind was pretty much already made up about what I would do, even before I received any sort of information. I informed my family that I would be removing my breasts and ovaries, as soon as possible. I wanted them off, in fact I wanted every imaginable organ that I didn’t need in my body out, and I wanted it done as soon as possible.
All I kept thinking was “what if” – what if I couldn’t be here for my children; what if I couldn’t grow old with my husband etc. Our dreams, our late night thoughts, our plans, hopes, all of it came to mind.
After I took the genetic test, waiting became difficult. During this waiting period, I had meetings with my breast care specialist, as well as the surgical gynecologist’s nurse to discuss my thoughts.
When I met with my breast care specialist, I blatantly declared that I wanted my breasts removed because I was an Ashkenazi Jewish woman with a family history of cancer, with dense breasts, that have been found to be lumpy. She looked at me with a blank stare, much like a deer in headlights. My breast doctor made it clear to me that physicians are not allowed to encourage “self-mutilation” surgeries and that there really wasn’t a need to have my breasts removed, especially if I turned out not to be a carrier of BRACA.
In that meeting, I felt like no one understood me. Is this really something that I needed to argue for? Since when is preventative medicine self-mutilation? I was trying to take control of my life.
My next meeting was with my surgical gynecologist’s nurse, regarding the possible removal of my ovaries. I was met with a different kind of resistance this time. I was told that the surgeon would not meet with me unless I had a letter from my insurance company stating that insurance would not cover this procedure, and that I would be entirely, financially responsible. I could not even speak with the gynecological surgeon unless I had an insurance note. This was truly unbelievable.
Fortunately, much to my surprise, after waiting a little over 3 weeks, the genetic testing result came back negative. Am I relieved? Slightly. Does this stop the worrying? Truthfully, no.
What I can say for sure is that I have a much more proactive outlook about my health now, and I guess that’s all you can really do to protect yourself.
Despite my negative results for pancreatic and ovarian cancer, I have still had in depth conversations with my health care providers on what I can do to limit my chances given my family history. I want to work with them and tackle this as a team. However, my views on what the next steps should be are not shared by many medical practitioners.
What I know for sure is that I will eventually have my ovaries removed – I am 100% certain of this. Perhaps in 5 years, definitely within 10 years. As of now, my doctors have refused to perform this surgery for me. But I am not giving up the fight. I have agreed to re-evaluate my situation in 5 years. In the meantime, I will continue to go for semi-annual breast and ovarian screenings and continue to work with my health care team to find a solution I can live with.
I may not have the mutated gene, and I may not be in the high risk group, but I am a woman who is looking to avoid a silent killer. While medicine today may not share my thoughts, something tells me that in 20 years from now, removing your ovaries will become a common procedure among women over 40.