I don’t know what being a BRCA mutant is for everyone. . . but I’d like to share what it’s been like for me. I also should tell you that the one really positive Super Power I have as a BRCA Mutant is Prevention of a Monumental threat to me and to my family.
I will fight dirty with a preemptive strike on cancer!
I’m going to be a Previvor. Yep, that’s a thing :-)
The BRCA test itself was easy - a quick blood draw. The results, not so easy. Up to 84% chance of getting breast cancer! These numbers JUMPED off the page, and given my family history on both sides of my personal gene pool. . . . . the anxiety started pretty quick.
These are SOME of the thoughts I started to have about WHEN I would get cancer:
I suck at self-exams - I could easily miss the warning. . . . , and what if it’s aggressive, and what if the professional screenings don’t find it either. . . what if it spreads to lymph nodes, to other organs. Chemo will SUUUCCCCKKKK and so would radiation - BURNS!. . .. I don’t want to have Coralie go through what we did with my dad if I can help it at all. OH CRAP, I really want to be around for as long as I can for Cora, for myself, for life. . .. DAMN IT, I’m probably going to get cancer. . .. is 6 months too long between tests. . oh NO, now a BIOPSY?!!?? Oh, it’s clean, fine - Cheers! . . next test coming up. . . . SERIOUSLY ANOTHER BIOPSY. . .what will chemo be like, will I be so tired I can’t function, when will I lose my hair, will I become a puker, how many surgeries will I have, will I be more high risk when I do get cancer? how long could I or would I survive? What would it be like for Coralie if/when I got cancer – how much would I miss of her life if I was weak from chemo and couldn’t go to her show, game, graduation, take pics of her events, or dances, recitals, whatever she's into. . . . or would I be there to give her advice - wanted or unwanted (ha!), or what if cancer just takes her mama out of the picture altogether? Etc. etc. etc. I think you get the idea.
To be clear, thoughts like these happen EVERY DAY (and have for five years so far) – not JUST around testing times, although they usually accelerate around each mammogram, MRI - sometimes a biopsy, physical exam (and prior to last year, ultrasounds and blood tests for the ovarian part).
Of COURSE, not every person who is BRCA + (has a gene mutation) will get cancer. I get that in a part of my brain, BUT there are lots of parts of my brain and most of them don’t care about that “maybe you will just be okay” possibility. Plus, my odds are not good.
I mean, would you get on a plane if it had an 84% chance of crashing? Would you get on a plane if it had a 50% chance of crashing?
What to do. . . what to do. . . .
Preemptive Strike #1: Last year, I had my ovaries and tubes removed because there is not ANY good screening for ovarian cancer. Here’s a link to more on that part: My First Preemptive Surgery
Preemptive Strike #2 : I’m going to have a Prophylactic Bilateral Mastectomy with Reconstruction using my own tissue.
Yes, I AM TERRIFIED OF SURGERY. This is not a decision that I made quickly or lightly - or alone. It’s going to HURT. The recovery is going to be LONG & HARD.
My surgery will be longer than most of your work days. In Part 1, he is going to scrape out anything that looks like or could be breast tissue – roughly 2.5 hours. In Part 2, the next surgeon will take tissue and blood source from my abdomen to reconstruct – 8 + hours probably for this part.
This ain’t no “boob job” people – not an augmentation or “mommy lift” or anything like that.
I will be in the hospital for 4- 5 days – including one night/day in the ICU.
Why the HELL would I do this you ask?
I don’t want to live in fear and anxiety all the time. Anxiety like that can be hard on a person – on the physical body, on the mind, on relationships. It can be paralyzing. It’s just hard on life - and isn’t there enough other “hard stuff” in life already?
I want to do EVERYTHING I can do to be around for my sweet Coralie!
I want to enjoy the good stuff as much as I can for as long as I can! .
You might ask: Can’t I just calm down and hope surveillance finds cancer “in time”?
Remember, I tried that for years already & the anxiety isn’t calming down with surveillance.
Even if they find it "early" on “in time”, it still is cancer. There is still surgery PLUS Chemo and radiation, plus it COULD be aggressive and it MIGHT not be found until it’s already spread at least to some lymph nodes. Finding it “in time” still sucks - ask a cancer patient.
The doctors, PAs, nurses and cancer patients have told me that surgery recovery is better than Chemo, and cancer complications. I believe them.
Also, there are too many stories of people who “wait and see”, and then get cancer. Then, I would be suffering from cancer and treatment while kicking myself for not doing everything I could to prevent it.
When/If it happens, I probably won’t have the same options for reconstruction, and my surgery may be higher risk depending on age and many other factors. I will repeat - finding it “in time” still sucks - it still blows up your life in most cases.
So, there you have it. June 28, 2017, I will "go under".
They will take these ticking time bombs off/out of my body. I will HOPEFULLY wake up (yes, that’s my biggest surgery fear – the not possibly not waking up part.
After recovery, I can at least live with a lot less fear and a TON less anxiety around getting breast cancer since I will be going from "you'll probably get it" to "you probably won't" - no guarantees, but a lot better odds!!!
For more great information about Hereditary Cancer, check out FORCE - Facing Our Risk of Cancer Empowered!
To assess your risk try the tool on Bright Pink - click here: Bright Pink Breast Cancer Risk Assessment
Of course, talk to your doctor too!