After prophylactic BMx, did anyone take tamoxifen or AI's?

light1candle

I am considering prophylactic bilateral mastectomy for LCIS and am wondering about what comes after. I understand that most women don't have regular imaging afterward, just maybe clinical exams or self exams. But what about anti-hormonal drugs?

This may be kind of a dumb question, but I was wondering if anyone who has had a *preventative* bilateral mastectomy took anti-hormonal drugs afterward? I know that one of the primary reasons women choose preventative mastectomy is so they WON'T have to take these drugs, but I was wondering if taking them has any benefit at all, seeing as how BMx does not reduce risk to zero? Did anyone have a doc who recommended taking them after BMx?

Shadie

I started taking Raloxifene after I discovered I was BRCA+, right after I had an oophorectomy four years ago-did it to reduce the chance of BC, as well as to counter the potential impact of ovary removal on the bones and heart. Am still on the drug, even though my PBMX was more than a year ago. I have had no reaction/side effects from the drug, so continue to take it.

light1candle

Hi Shadie. Thanks so much for taking the time to respond. It’s good to hear of someone who has not had adverse side effects from their SERMs/AIs. With the increased risk of being BRCA+, it seems wise to do all you can to be proactive to prevent cancer and it sure seems like you have certainlydone that. Again, thanks for sharing your experience.

AliceBastable

I thought the anti-hormonals were to prevent not only recurrences, but mets. That wouldn't really have much to do with the type of surgery you had. And even recurrences can show up after a mestectomy, like in the scar tissue or chest wall.

Beesie

AliceBastable, what you said is true, but if the surgery is truly prophylactic and no cancer is found in the final pathology, then there is no risk of mets and no risk of a localized recurrence in the scar tissue or against the chest wall. The only risk after a PMBX is the risk to develop a new primary breast cancer. For most women, after a BMX, the risk will be only 1%-2%, although those who are BRCA positive (or who have another genetic mutation) the risk will be higher.

light1candle, as an FYI, even for women with DCIS who have a a BMX, endocrine therapy is rarely recommended. The exception would be for those who are BRCA positive or who have close surgical margins. It's a simple risk vs benefit equation. If the risk of a localized recurrence is only 1%-2% (for those who had DCIS) and the risk of a new primary is only 1%-2%, Tamoxifen or an AI can reduce these risks by 50%, which at most is a 1-point risk reduction for each of these risks. These risks are for a localized cancer, which in most cases can be caught early and is treatable. By comparison, the risk of serious side effects from these meds falls in the 1% - 3% range (all possible serious side effects combined), depending on the age of the patient and other health conditions she may have. Some of these side effects, though rare, can be very serious, such as DVT/PE and endometrial cancer (for Tamoxifen) and heart problems (for AIs). That's not considering the quality-of-life side effects.

Even women who have DCIS-Mi who have a BMX usually are not prescribed endocrine therapy. With DCIS-Mi (my diagnosis), there is a very small risk of mets but the risk reduction from these drugs for someone who had only a microinvasion is just a fraction of a percent, not warranting the risks from the drugs themselves.

I had a UMX for DCIS-Mi and while my oncologist would have prescribed Tamoxifen if I'd insisted, he did not recommend it. From reading this board, his position seems to be pretty common.

So endocrine therapy after a PBMX when no cancer has been found and there is no genetic mutation present... I doubt that any responsible oncologist would recommend it.

light1candle

AliceBastable and Beesie: Thanks to both of you for weighing in here. Beesie, your observations about the limits of chemoprevention for a prophylactic BMX in cases like minewere very helpful. Just the kind of feedback I was hoping for. Thank you both.

Gndvll

I know the whole question can be confusing, but treatments are so individualized.  I had a very aggressive tumor, DCIS, which we caught early. I did chemo, then had a bilateral mastectomry, R side  prophylactic.  No nodal involvement, no mets, so I'm glad we did chemo first.  I'm 58, and I'm on anastrazole for the next five years, at least.  After that, my odds go down, (E0%P<5%, BRCA -, Genetic profile, neg.  I just want to never have to deal with recurrence again.  So far, I've had a post chemo/surgery pneumonia and heart attack.  I'm ready to feel better, dang it!!!

But, I still have to decide about a TAHBSO and reconstruction.  No implants, but maybe a flap.  We'll see.

---Gina

Beesie

Gina, are you referring to your treatment for a previous diagnosis of DCIS, or your current diagnosis?

Your signature line indicates that you have a Stage IIA invasive cancer. DCIS is pre-invasive and is always Stage 0. Because DCIS is a localized condition, chemo is never given for DCIS. Quite often an area of DCIS is found together with invasive cancer, but when this happens, the DCIS is incidental to the diagnosis and is ignored, except for ensuring that the DCIS is surgically removed. In situations where both DCIS and IDC are present, staging and treatment are based entirely on the invasive cancer diagnosis, which is the more serious condition.

Good luck with the rest of your treatment and your decision making with regard to reconstruction.

light1candle

Hi gndvll. So sorry to hear of your post chemo/surgery trials. Thank you for posting your thoughts. Yes, each person’s journey is very individual, and we all must make the best choices we can with the information we have. Since your IDC was so aggressive, I think you were wise to treat it aggressively. Hopefully, you are through the worst of it! Here's hoping you are feeling so much better very soon.

My situation is different. With LCIS I may never go on to actually get invasive breast cancer, but my risk for it is higher and the risk is bilateral. I am considering preventative BMX to reduce my risk. (Other health problems make me uncomfortable with just doing surveillance.) I am just trying to understand what imaging/treatments would be recommended after mastectomy should I choose to go that route. In situations like mine, it sounds like the BMX is pretty much it, unless there is a later lump