One of the first questions I’m always asked, no matter what I may be discussing – “Are you BRCA too?” And the answer is “No, I am not. There is no genetic reason to date that I ended up with Ovarian or Endometrial cancer.” “Then why did you have a preventative double mastectomy?” Simple, you can’t always rely on genetics to determine whether or not you will be diagnosed with cancer – family history is as important since only 5-10% of all cancers happen due to a genetic mutation. I only have a handful of friends in my cancer circle who actually have a genetic predisposition to one cancer or another – the rest of us really don’t have a reason as to why we’ve developed cancer at all – we’re what they like to call head scratchers.
I am a HUGE proponent for genetic testing – currently there is a MAJOR gap between women being diagnosed with ovarian cancer and having had genetic testing done. I am sure this is true across the board, but am only familiar with the numbers on the ovarian cancer side of things. If you’ve been diagnosed with cancer, PLEASE ask your medical team for genetic testing – it could help your other family members if you do in fact carry a gene that explains your diagnosis. I wanted to get all of this out of the way before explaining the why’s behind how 20 months post-diagnosis I found myself in the “previvor” category (individuals who are survivors of a predisposition to cancer but who haven’t had the disease – honestly, I don’t know how I feel about this word, but I’m going to use it).
Between chemotherapy #1 and #2, I had my genetic testing done – at my oncologist’s advice as to what next steps needed to be, if I in fact had a mutation of sorts. There were several reasons for this – first, my own health, we needed to make sure there wasn’t something else at the time we needed to be worried about me being diagnosed with. Secondly, if I did have a mutation, we needed to determine what parent it was passed down from, and if my brother had been effected as well. And lastly, I have two children that I needed to make sure would be okay if they’d inherited something from me. The results came in while we were on Spring Break and to all of our surprise, they didn’t find anything, except for one gene which at this point in time isn’t linked to anything I’ve been diagnosed with, or breast cancer. At that point in time, no one in my immediate family (parents, brother or children) had been diagnosed with anything that would raise an eyebrow to make us look at anything outside of us. Okay, so you’re fine…I still don’t get it, then why did you have it done? As I said, I have a STRONG family history of cancer on one side of my family…it will take two more diagnoses before things would start to click.
August 2017, as I’d gotten my drain removed, my dad was diagnosed with non-Hodgkins lymphoma – I made sure at that point in time there was nothing we needed to worry about – anything that changes with my family I make sure Dr. H knows right away. So dad under went the treatment, responded to chemo with flying colors and he was in remission. And then at his first three month post chemo checkup this year, he was diagnosed with prostate cancer – I think it was in the May. It was a mix of low and medium grade and the lesion he had, had made it to the outer wall of the prostate, but had not “escaped,” so he got off VERY lucky. So, I still don’t get it..no breast cancer. You’re correct, no one in my immediate family has been diagnosed with breast cancer.
About a month after my dad’s diagnosis I did what I advise more people not to do – I took to Google and typed in “prostate cancer and ovarian cancer”…and as luck would have it, one of the following things I read included something along the lines of women who’s father or brother had been diagnosed with prostate cancer can have a higher risk of developing breast or ovarian cancer, and my stomach sank. Dr. H already knew all of this was goin on (remember, I tell her EVERYTHING that transpires with my family regarding health related things), and she said we’d talk about it more at my appointment in July and figure out what to do, but I needed to confirm what I’d read wasn’t something we needed to worry about. So I typed out the following in a text “…I just read that women who’s father or brother have been diagnosed with prostate cancer can potentially have a higher chance of developing ovarian cancer or breast cancer. What happens to that daughter who’s already been diagnosed with ovarian cancer?” And shortly after hitting send I’d get a response that included, “but your grandmother doesn’t have breast cancer, does she?” And my stomach dropped again, “yes, 5 times…” “Okay, we’ll talk about it when you come in.”
The plan that we’d originally come up with would be shifted slightly. Instead of waiting for my dad’s genetic panel to come in to see if something would pop on his if we did a significantly larger number than we had on me, that we might find something (I had 42 genes tested). Instead, she’d recommend the breast surgeon oncologist she wanted me to meet with to discuss options and what my risk might be given all of my history coupled with my dad’s and his mother’s. You see, my grandmother has been diagnosed with breast cancer 5 times, her mother and her mother’s mother also had breast cancer. This is why knowing your family history as far back as possible is important! And although my medical team had all of this information, there was one key thing missing at that point in time, which would flip the scale – all of my father’s diagnoses within a year.
Heading into the appointment with Dr. M, I already knew what my decision was going to be if she told me I was high risk and I knew the chances of her telling me otherwise were pretty slim. So when she confirmed I was most definitely high risk with the information we had, and the model would under estimate my risk due to not having an immediate family member with breast cancer, I told her I knew what route I’d like to go, and things moved forward from there.
So although genetic testing didn’t necessarily find anything, I think it’s extremely important for everyone diagnosed with cancer or any other rare disease for numerous reasons – to possibly benefit the rest of your family members being at the top of the list. Always remember to keep your medical team apprised of any and all changes in your family history – had I not, we may not have reached the conclusion we came to for me…and I wouldn’t realize until this past Friday how critical it really was (more to come on all of that). As I always say, use your voice, it’s there for a reason. A huge THANK YOU to Dr. H for ALWAYS listening to me, even though I know at times I tend to panic, and to Dr. M for allowing me the opportunity to make the decision I did, and do so in a somewhat quick fashion.