Port insertion has been scheduled for Wednesday, May 11, at the same hospital where the bilateral was done. I will be put under, but it’s a WAY shorter procedure and I can go home afterwards. Tom has to drive me.
Now some more about repurcussions of the BRCA1+ discovery.
The genetic counselor told me about the ovaries/uterus/fallopian tubes surgery (there’s a shorter word for the surgery, starting with “ooph” but I forget the whole word and I cannot find it on WebMD right now) back at my initial consult in March–so this was not a shocking bit of news for me. He also told me then (as well as at yesterday’s appointment) that this is by no means an emergency situation. That they are all happy to wait to do the ovaries etc. surgery until after it is clear that we are done having children. The five-year timeframe is because it is very strongly recommended that the surgery be done pre-menopause. And it seems like my mom and grandmother had a bit of an early menopause (early 40s) so I really can’t sit on this too long.
Now, you might ask, what about the More Children thing? Is that even possible After Cancer? Well, there is a strong possibility that chemo itself may put me into menopause. It could be temporary (some call it “chemopause”) or not. We won’t know until later which one it’ll be for me.
[side note: The good news for me WRT my ovarian cancer risks is that I took birth control pills/was on Depo-Provera for about six-eight years during my 20s. Why good? Because studies have shown that when women take ovulation-suppressing meds such as BCP or Depo, that can reduce their chances of developing ovarian cancer. Those studies, unfortunately, are for the "general public," and not for women carrying the BRCA1 mutation, so we don't know if it'll help ME out, but anyway, we're choosing to look at it as a helpful thing.]
Okay, so back to the More Children thing. I have talked about this with the oncologist, as some women with breast cancer are advised to not get pregnant, ever again (not just, obviously, during chemo treatment). This is because there are some types of breast cancer that, essentially, feed on pregnancy hormones (such as progesterone and estrogen); like the cancer might not have happened if not for the presence of all those extra pregnancy hormones. HOWEVER, my type of cancer is not one of those kinds–I was ER/PR negative, meaning my cancer doesn’t really notice if estrogen or progesterone are around. [This is a con in one way because it means I'm not a candidate for tamoxifen (long-term cancer treatment), but a pro in that another pregnancy would not trigger a recurrence of the cancer.]
All of this is to say that the Ovaries Etc. surgery is too big of a decision (and recovery) to make right now, and so we’ll revisit it in a few years. Several doctors have pointed out that I could actually have another baby in two-three years and–since I had a c-section with the twins, I’d have another one with any future baby–the Ovaries Etc. surgery would be done concurrently with the c-section. Since Tom and I have always assumed that I’d be having my tubes tied when we’re positive that we’re done having children, the bigger surgery isn’t as upsetting to me.
[BTW, the reason for not stopping with removing the ovaries but going for the whole package is because the fallopian tubes touch/grow into the ovaries at one end and the uterus at the other end. So in order to feel like they've gotten all of the troublesome ovary cells, the doctors must remove anything "tainted" by the ovaries.]
Onto next questions. What does this mean for my younger (half) sister, and for our twin sons?
Well, my sister has a 50/50 chance of having inherited the BRCA1 mutation from our mother. She will (as will the other women in our family) have to decide for herself if the gene testing is something she wants to have done. Beyond gene testing, she’s found a pro-active breast surgeon in Manhattan who is ignoring her young age and concentrating on the family history and will be doing aggressive surveillance (mammograms, etc.).
Our boys also each have a 50/50 chance of having inherited the BRCA1 mutation. Currently, gene testing is not generally done on children unless there’s an obvious and pressing need. The boys can decide at age 18 if they want to be tested. If one or both of them have the mutation, they will be at an increased risk for both male breast cancer and for prostate cancer. The stats for men with BRCA1 are not as scary as for women, but still significant (to me): BRCA1 men have a 10% chance of developing male breast cancer vs. men without the mutation who have a 1% chance. I would like to believe that by the time the boys reach the age of 18, medicine and cancer research will have progressed so far that those stats are laughably outdated.
p.s. Completely forgot this: when the oncologist walked into the consult room yesterday, the first words out of his mouth (after “hello”) were: “Quick–Who sang ‘Freedom’s just another word for nothing left to lose.” Do y’all know? Answer tomorrow and why this was meaningful to me.
