A while back I told readers that I had a genetic problem with BRCA. I tested positive for an abnormality of my BRCA gene that is strongly associated with breast and ovarian cancer. I was tested because I have a very strong family history of breast and ovarian cancer, and unsurprisingly I was told I had it. I slowly came to terms with it, accepting that while I didn’t want to have this, I wanted to know and to have surgeries to remove and rebuild my breasts and remove my ovaries to avoid getting cancers of my breasts or ovaries more than I wanted to have cancer and chemo and have these things taken out anyway because they were killing me. I’ve seen cancer. And honestly I figured I’d kill myself when I was ready if it came to that. I had this whole thing about how I want to be able to choose and to die with dignity. Anyway.. knowing I had BRCA was a chance to not have all of that. It sucked, but it also meant that I might actually live like other people.
I have always understood that people in my family don’t live that long. Both of my grandmothers were dead by the time I was a small child. One of them I can’t ever remember meeting. I understood that with both grandmothers and my mother having had breast cancer, and one grandmother having also had ovarian cancer, and another female relative dying young to ovarian cancer, my odds weren’t good. I knew that between the cancers and the diabetes in my genes that I was toast. I wouldn’t say I accepted it, but more than I just knew it. I didn’t accept that there is a sky or that objects fall to the ground when you drop them. These are just the facts. Then I learned I could be tested for the gene. My doctor offered it and I said yes. Fairly shortly afterwards I got the results. I had it.
I have spent the last few months calculating risk and learning about this gene.. weighing odds and wondering. Shortly after I tested positive I had a bigger meeting with my genetic counselor and with my family history and the prior results they decided to test la-t-dory everything. There are two kinds of BRCA and where the mutation is on the gene determines how much risk I had and what my options were. Looking at my choices and the range of options it seemed that the best course of action for me was to have preventative mastectomies (removal of both of my breasts). How bad the risk was would determine if I would keep my nipples, or have my ovaries removed, or how long I could keep my ovaries.
Turns out there are actually a number of cancer associated genes. This second test was a sequencing test. They ordered the full panel of them and I was tested for something like 57 cancer-associated-genes. This test is a lot longer because they completely sequence all the exons and flanking introns of these genes AND detect large deletions, duplications, and mosaicism. In “human” talk, this means they look at each little piece of 57 genes and they’d tell me which kind of BRCA I had and if I had any others. They took the blood in December and expected to call me in February or March with the results. They could tell me on the phone, and I’d figure out which appointments I’d need to make depending on those results.
And they called me today.
And I don’t have ANY cancer-causing or cancer-associated genes. None. Zip. Nada. Zero. Nunca. I boggled at this, talking to my counselor. “What the holy living hell does that mean?”, I thought. My mouth moved and nothing came out. I finally said “Well.. that’s, no it’s… it’s totally good news. Right?”. The genes I was tested for and the one the doctors had said I had are associated with with breast, ovarian, cervical, colorectal, endometrial, pancreatic, endocrine, or melanoma cancers. I do not have these. I have none of these.. including BRCA. I don’t have BRCA or anything else.
It turns out with my first test that every now and then a BRCA test is positive because of a “polymorphism on the gene in the test that isn’t clinically significant”. Meaning… the first cell had a wonky bit, maybe, but they have observed and sequenced all those exons and flanking neurons and mine are NORMAL.
I literally cried with joy after that sunk in a little.
I had understood that at a minimum I would have to have one to two surgeries to remove my breast tissue and then either have expanders for weeks and implants or direct to implant surgery. With all of the breast tissue removed it’s a little more complicated than a boob job. They have to make space under the muscle for the implant. Or they can cut a large flap of skin and muscle from another part of the body and create breasts out of it and tattoo on or create nipples. I could have lovely breasts, and survive, but the tag on that seemed hefty.
And now I don’t need that. The months off of work and the pain and the surgeries and anxiety and risk will not happen. And had my risk been worse I’d have lost my ovaries, maybe as early as this year. The fear and pain and results of menopause so early aren’t going to be mine. All of it is just lifted. I honestly do not have words for what this means. When I heard I had BRCA I kept boggling about what this means.. what this means. It’s huge really. And it’s huge again.
It means I don’t have that worry and that fear and that pain and that process. I won’t have the effect of that on my relationships or my job or my overall health. And more than that too, this means that I have the benefit I might have gotten from all of that effort and pain, but with something closer to a magic wand. It’s just.. gone. Gone. I have LESS odds of cancers now than the normal population who might have these genes because I do not have any genes that we know are associated with cancer. I’ll still get screened with mammograms and such often because of my family history.. but.. but.. this changes everything. I won’t necessarily be like my grandmothers or my mom AND I keep my tits. And I keep my ovaries. Everything I’ve come to accept and understand I’d endure just isn’t going to happen. The curse was lifted.
And now I love my tits. They are no longer a little bit too small or too droopy or feeling like ticking time bombs. I was looking forward to having tits that were actually beautiful, and hoping I could have them created after all of this mess, a sort of booby-prize, if you will. (I had to.) But I don’t even care about that now. I will happily, giddily, merrily keep my less-than-perfect breasts. I love them. I’m keeping them.
I joked about getting myself a celebratory boob job now that implants would be easier to insert with my natural breast tissue.. but you know.. I think I might celebrate with a really really good push-up bra instead. Where does a person get a truly great push up bra?
On my way home I bought a lottery ticket. Today was just my day. After I heard I didn’t have a cancer gene, I also got resolution to a financial thing that’s been 5 months in the making, AND notice of my bonus for a great rating at work appeared in my personnel file. I figured a lottery ticket was a good idea. It’s okay I didn’t win. I feel like I won the lottery today.