8 days to decide. Keep ovaries or not. Hi risk breast cancer. No HRT.

I thought I had things figured out, but met with my breast oncologist yesterday. I have had atypical hyperplasia and am very high risk for breast cancer. Could not tolerate tamoxifen. She said having the ovaries out could reduce my chances of breast cancer. She says I will not be able to have HRT. When she found out I am now taking Effexor she sounded like I might be able to keep the ovaries and try tamoxifen again. It had really messed me up - making me nearly suicidal - and the lexapro and related drugs they tried with it only made things worse! I stopped taking Tamoxfin and felt like myself again 2 days later!
I am so confused. I don't want to go through more problems with medicines - I am extremely sensitive to them. On the other hand I don't want to be thrown into surgical menopause with no HRT.
Dr. says with the ovaries out there are other cancer prevention drugs I could use that are more easily tolerated. But there are so many other health considerations, I feeling so overwhelmed.
I have to decide what to do before my preop on the 31st. Help!!??

You have a tough decision!! Keep researching as much as you can looking for answers. There is a forum for surgical menopause no HRT on here. Maybe browse some threads there and see what you can find.

How old are you?

Hi (((Morning_glory7))),

Was your pathology ADH (atypical ductal hyperplasia) or ALH (atypical lobular hyperplasia)? They are very different and mean different things. I have had both, and like you, tried Tamoxifen and could not tolerate the very severe side effects. The difference is, I had already had a hysterectomy and both ovaries removed before my diagnosis and was (still am) on HRT.

At the time, when it became clear that I could not function on Tamoxifen, my DRs told me that it would be pointless to try Arimidex (is that the med your oncologist was referring to?) because the side effect profile is very similar, so I never tried it.

Have you considered getting a second opinion on whether or not you'd be able to use HRT afterwards if your ovaries are removed from a different oncologist? They do differ in their thoughts on this. Current research seems to indicate that estrogen does not cause breast cancer, but it can accelerate the growth of existing cancers. The risks/benefits differ by individual, and the age at which you have your ovaries removed is also a factor. Look at the other long-term health risks of not using estrogen versus the likelihood of being diagnosed with breast cancer; also, in the WHI Study, the women who were diagnosed with breast cancer who were on estrogen-only HRT had higher overall survival rates than women who were not on any HRT. The types of cancer we (post-oophorectomy women on HRT) who are diagnosed with tend to be more survivable (typically DCIS, which is usually detected early and has a 99.9% survival rate).

I realize time is short, but keep in mind that you can also always decide to have your ovaries removed later if you're not ready to make the decision now; there is nothing that requires you to do both surgeries at the same time. Once removed, though, it's not possible to put the ovaries back.

Good luck with whatever you decide to do.

(((hugs))),
-Linda

ALH is what I had. Thank you for your reply. This has been such a crazy ride. I just found out Wednesday that my hemoglobin was down to 7.9 despite all the iron I have been taking. Had to get 2 units of packed red blood cells. Now they are saying no work. Stay inside and rest. I'm going to be sick of resting long before my surgery on the 4th 😏

Hi Mornin_glory7

I am sorry your hemoglobin was down. I hope that gets better. Follow your doctors orders, and maybe the long weekend rest will help.

I moved you back to pre-op forum, so you can continue to get support for any of your concerns.

We are here to help and support you so you. I know this can be such a tough experience to go through.

(((Hugs)))

I agree with the others that say research and get a second opinion. Not only do we all make better decisions for our bodies when we are well informed, but we also feel more at peace with those decisions.

Sometimes it just helps to know what others would do in your shoes, if it were me at your age with your diagnosis, I'd have my ovaries removed just to be safe, but women go into menopause naturally early in my family (mom was 47 and sister was 46), so I'd already be naturally menopausal at your age.

As far as no HRT, does that mean none at all or just no oral and/or patch? Would estrogen vaginal suppositories be safe to use? When I was in my mid 20's, my ovaries shut down. I had terrible hot flashes, but the worst of it was the urinary burning I had from the lack of estrogen. It was like a bladder infection that wouldn't go away. Estrogen vaginal suppositories completely took care of my urinary pain, vaginal dryness, and vaginal atrophy. Most of the hormone stays locally, but some does enter the systom, I just don't know if it would be enough to raise your cancer risk or not, but if not it could make surgical menopause a bit more bearable.

I had my hysterectomy due to adenomyosis. Many women in my position could have maintained their symptoms with hormonal birth control, but they made me extremely depressed. I even stopped exercising, something I did 6 days a week before the pill. So, I had to make my decision about surgery based off how the medication alternative made me feel. But another thing to consider and to discuss with your doctor is will you get really depressed if you lose your ovaries and have no HRT due to the lack of estrogen?

Depression runs in my family. My sister has had 3 suicide attempts. After 3 different hormone birth controls made me depressed, my doctor felt it was unsafe to try another one. When I stopped taking the last pill, 2 days later it felt like a dense gray fog lifted from me.

My thoughts and prayers are with you and I hope you end up feeling you've made the best decision for you.