So what we talked about were two things. (1) The spot on my ovary and (2) the option of prophylactic bilateral saplingectomy as a form of ovarian cancer risk reduction.
(1) The spot on my ovary.
She is not concerned. They have had radiologists review my various imaging studies and she does not think there is any reason to be concerned about the spot. The radiologist noted that it looked like a scar (eggs leaving ovaries can leave scars) and upon review, it seemed not changed in any way that concerned them. She said that if I wanted, they could do another imaging study on the ovary. I asked her if she'd get another one done, if it were her. She said no. I'm not going to do one. There isn't any harm in doing one - no radiation or anything, it's just ultrasound. But I don't enjoy doctor's appointments, and I'm not really as worried about the spot as about the potential scary stuff. They say the spot is OK, and they're very concerned about ovarian cancer (so would tell me if there was anything to be concerned about)... well, then, the spot is OK.
OK, so number (2). That's what I'm worried about.
(2) Prophylactic bilateral saplingectomy.
Saplingectomy is the removal of a Fallopian tube. Bilateral means both. Prophylactic means as a preventative measure. It's not a clinically-tested thing, really, yet. There are some clinical tests going on to determine whether it will be a beneficial thing. But they are still in the data-collection phase. There is some data that some/most ovarian cancers actually arise in cells found in the Fallopian tubes. I'm not sure how strong the data is or what it really means -- neither are the scientists. They need to study it. It certainly isn't the standard of care right now, to remove Fallopian tubes prophylactically to avoid ovarian cancer. The doc said that these days, if she were doing a hysterectomy (with or without removing ovaries), she would remove the Fallopian tubes too. But, absent indication for going in, in the first place, she wouldn't do in just for that.
But what about my increased risk of ovarian cancer? My grandmother died of ovarian cancer at age 63, and I was diagnosed with breast cancer at age 37. That's enough to get me into the clinical study to get extra monitoring. But - apparently age 60+ death of ovarian cancer is old enough that it could be a one-off, and age 37 breast cancer absent BRCA1/2 mutation (and I am absent BRCA1/2 mutation) is not enough to prompt an oophorectomy. Put together, the doc says that at some point, I'll want to have a hysterectomy with bilateral saplingo-oophorectomy. But that point will come after I stop ovarian suppression. If I stay in menopause, that would the point -- five years from now. If I come out of menopause (once they stop chemically keeping my ovaries asleep), then the point will be when I age back into menopause. And if anything else happens where some sort of -ectomy is indicated, then they'll take out the tubes at the same time.
The side effects of oophorecotmy (irreversible menopause++) are more significant than the side effects of ovarian suppression. Also, it is permanent. So not really on the table. I hear a lot of women regret doing it prophylactically, although I've seen comments online going the other way too -- didn't do it for years, dealt with suppression, did it eventually and wished they had done it from the get-go. I don't know. I'm not really qualified to make these decisions, but I have chosen qualified medical providers so I'm just going to go with them on that one. I have to put up with the shots to suppress the ovaries, but I'll take that down-side over something permanent I might regret.
The saplingectomy is harder, because I am willing to put up with a potentially unnecessary surgical procedure which seems to me to pose little risk beyond surgery (some risk of interrupted blood supply to ovary), but potentially a big upside (lower risk of ovarian cancer). But then the doc said it doesn't work like that. It's not linear. Getting rid of the tubes doesn't mean I've actually reduced my risk 50%. So long as I have the ovaries in place, my risk is my risk. There is no proof that removing the tubes works to reduce risk. Unlike some of the other decisions I've made -- e.g., lumpectomy + radiation v. mastectomy -- there also isn't "negative" proof. That is, no proof that the more drastic intervention (there, mastectomy) doesn't improve outcomes. [Edit: Confusing sentence! No proof here regarding better outcomes, but there is evidence that mastectomy is not better than lumpectomy + radiation to prevent local recurrence.] I mean, I just want to confidently decide. Proof that something doesn't work is just as good as proof that something does work, when it comes to making decisions. But in the absence of data, here, the decision is not to act.
All of this medical math is so weird. I mean, really - it's so complicated, and some of it contradicts other of it, and none of it follows the laws of Newtonian physics as far as I can tell -- and then you're supposed to make decisions. I wish it weren't my life I was deciding about. Little decisions at each doctor's visit, adding up to life or death. When it's all on your shoulders, you want to do everything you can to make sure you won't later think back, "I wish I had done something more."