I know over the past several weeks, I've posted on here alot. This one is likely to be a long one, so bear with me as I really need some well thought out advice here.
A bit about me, in case you are unaware. I am 36 years old and was diagnosed with breast cancer in September of 2012, when I was 35. Because of the type of cancer I had, mastectomy was my only treatment option. Because of my age and family history, I chose to do a double mastectomy. I did not require chemotherapy, radiation, or a hormone surpressing regime since my cancer was not invasive. My cancer, however, was hormone receptor positive for both estrogen and progesterone, meaning it was fueled by those hormones.
I had the breast cancer gene test done and mine came back as not having the two known mutations associated with breast cancer, but my gene isn't normal, it's what is known as a "variant". Basically that means the gene isn't normal, but there isn't enough data yet to make a positive determination that my particular variant is associated with an increased risk of breast cancer. Basically nobody knows what it means.
DH and I are finished having children and I've been trying my hardest to come up with a permanent form of birth control. I haven't taken birth control pills since my diagnosis (due to the hormones) and I am completely stressed out about getting pregnant. Not only that, it's possible (but nobody knows for sure) that I may be at an increased risk for ovarian and/or uterine cancer.
I am having a reconstruction revision surgery in September and have been trying to figure out if I want to do a permanent birth control/ovarian cancer risk reduction surgery in conjunction with it.
I spoke to my breast surgeon, consulted with my local obgyn, and consulted over the phone with my obgyn in New Orleans.
Here's what my options are according to them:
1. Tubal ligation with ablation. This is the least invasive of my options. Surgery is straightforward, recovery is minimal. My ovaries and uterus are left intact and there is no hormone disruption. Is a permanent birth control only, does nothing to reduce risk of any future cancer.
2. Partial Hysterectomy. Removal of the uterus only, leaves ovaries in tact. Reduces risk of uterine cancer, but not ovarian cancer. Is a slight possibility that ovaries would fail after this and I would be in menopause.
3. Total hysterectomy. Removal of everything, uterus, ovaries and tubes. Recovery is a few weeks. Originally I had thought it was inadvisable that I have hormone replacement therapy, but my docs seem to agree that a small dose of estrogen (something less that what my body would make on its own) is fine. ETA: Technically it isn't a total hysterectomy, but a hysterectomy (removing uterus) plus a oophorectomy (removing ovaries).
I'm going to be blunt here and the ONLY reason I hesitate about either the partial hysterectomy or the total is the potential negative effect on my sex drive. I have no issues with sex drive whatsoever and I don't want that to change.
My Docs are in agreement that any of these options are a reasonable course of treatment considering my history and genetic results.
Here's where I'm at, I think...this seems to change depending on the day. I am leaning towards doing just the tubal and ablation and putting off any type of hysterectomy. My thinking is that if it's reasonable now, it will be reasonable in 10-15 years as well. The problem with that thinking is by then it may be too late And if it were...I would feel AWFUL about not having done this when I had the chance.
So, if you've made it this far, any advice? What would you do if you were me? What would you tell your daughter to do?