Double mastectomy /Estrogen positive DCIS and increased arthritic pain

@snowdown I am unclear about some things in your post. You said all of your estrogen tissue was taken out? What does that mean? Mastectomy does not remove estrogen tissue. Do you mean there is now less breast tissue containing cancer that is fed by estrogen?

I had mastectomies but still did estrogen blocking meds for 5 years. Is there another reason you are not doing meds?

@snowdown I had a double mastectomy in 2013, stage 1, BRCA2+ and even had my ovaries removed at the same time so instant menopause. I was advised I didn't need to take an estrogen blocker. My breast cancer returned 7 years later. My new oncologist and surgeon told me I received bad advice about skipping the estrogen blocker. They said it would have reduced my chances of recurrence by up to 50% (estimates vary). Your body still has some estrogen even after menopause. Consider a second opinion about the estrogen blocker. Blessings, Zebra

Well I was told that since all the breast tissue was removed I didn’t require estrogen blocking to prevent further breast cancer. So I guess in relation to breast cancer I would not require estrogen blocking therapy.

… fat tissue does hold estrogen. I do not have BRCA genes. Thanks and both my surgeon and oncologist were in agreement. I have family risk factors with stroke and have some osteoarthritis (which has seemed to have flared since my surgery).

@snowdown I read a great article about how surgeons should not say "we got it all." The estrogen that is targeted by meds post-menopause is produced by the adrenals.

I have never heard of a doc saying that after a mastectomy you don't need estrogen blockers. The meds are meant to address local, regional and distant recurrence. There could be rogue cells. And there could be residual cells. Noone can predict, even if your chances are excellent.

Did you have an Oncotype done? Generally the meds reduce risk by 50% or so. I don't know your situation but hope you get a second opinion.

These comments were very helpful. Starting tamoxifen soon and this makes me
Realize I better take it. All the side effects scare me! 😟

I had a double mastectomy in October and they did not find node involvement so no radiation BUT I am on estrogen blocking medication, Tamoxifen, that I was told reduces reoccurrence by 50%. I hope you get a second opinion about medication after mastectomy.

Many women have no side effects or very mild. Also, after 3 months if you are experience any side effects that you feel are hindering your lifestyle then you can switch manufacturers of your Tamoxifen. There are different fillers in the medicine that may be causing issues. Hope you are one of the many women who can take Tamoxifen without issues! 😉

That makes sense. I have been taking synthroid for 20yrs and can only take the brand type not the generic. Although, I never thought of manufacturer. Thanks! 🙏

I saw my plastic surgeon and she advised that I was most likely over compensating with my hand since the double mastectomy / replacement surgery and that I probably felt so much better after the surgery due to the pain meds. Makes perfect sense. Also was in a car accident last July and broke my sternum. Also contributing in the same way(probably more so.)