I know I promised an entry about some of what I call the "side effects" of my cancer but that's going on to the back burner for now because yesterday I got my results of my genetic testing.
We did the testing because of my family history. One aunt recently passed away after battling the disease for several years, yet she did not have the genetic mutation. Her sister, had a pre-cancerous condition, but she too did not carry the mutation. They were both tested, so we know this for a fact. But it wasn't their generation that caused concern; it was my grandma's. You see my grandma was the same age I was when she was diagnosed with breast cancer. I knew that. She also had a sister who died when I was eight from either ovarian cancer or cervical cancer (there's some open discussion on that). But what I didn't know was that my grandma had a sister, who died in her 30s of ovarian cancer. That's where the concern lay as far as my genetic counselor was concerned.
Okay - let me step back on this too. And I apologize now for the disjointedness of this entry because my thoughts are still running around in my head, unorganized. I went to see a genetic counselor two weeks ago at the Cancer Institute of NJ where I met not only with her for two hours but also another oncologist, Dr. T., who specializes in genetic cancer. We went over my family history as far back as we could and as wide as we could. And afterward, that's when they told me I was a good candidate for the testing - my family history and my type of cancer (triple negative on the hormone receptors) - you see that form of cancer is usually associated with this genetic abnormality.
It was also during this session that I learned that I don't have a gene that causes cancer but a mutation in a gene and it doesn't so much cause me to get cancer but it prevents my body from suppressing tumors. The BRCA-1 and BRCA-2 genes are tumor suppressors. Because mine are "mutated" they're not doing the work they're supposed to do. Stupid genes.
But here's the kicker and here is one thing I want you all to pay close attention to. This was not my mother's mother we're talking about. This was my father's mother. Which means, assuming my father has the gene mutation (and good odds he does), I inherited it from him. So believe me when I tell you, contrary to a misconception out there, you can get this gene mutation from your father. Years ago I had one doctor tell me you couldn't. Boy was he wrong. The reason people don't think it comes from the father is because men rarely get breast cancer. But check out this stat. In the normal population less than .5% of men get breast cancer but those with this gene mutation have a 6% chance of getting it (so 12 times more likely - thanks Al!). In men, this gene mutation has also been tied to prostate cancer.
So where was I?
Okay - so two weeks ago I met with the counselor and the doctor and decided to have the test done. There was a lot of talk about the cost of the test, especially because there are two versions, one initial screening and then a more detailed sequencing, and not all insurance covers these tests (which can run from $600 - $3000) but so far, it seems like my personal medical history qualified me with our insurance, so we opted for the full gamut .
Yesterday a friend and I went for the results. And sure enough I have a BRCA-1 mutation.
What does that mean?
Well, there are a lot of stats and studies I can quote but I'm getting tired and I may write more about this later, so I'm holding off. In the short term, I'm going to have an oophorectomy, which I think is one of the funniest sounding words ever but it means I'm having my ovaries removed. You see this gene mutation isn't just related to breast cancer, it's also related to increased chances for ovarian cancer, and since there's no good detection method for the big "OC", the oncologists I've talked to have said they need to go. I agree. Kind of feels like a ticking time bomb inside of me.
After that, there are basically two paths to follow, one of increased observation or the double mastectomy and reconstruction. I'm considering my options on that now.
But needless to say, it feels like once more I'm heading to "war." Only this time, my enemy doesn't get a surprise attack, so that's one in my corner.