How many biopsies, surgeries and years?

Res112, I also opted for PBMX. I'm recovering from surgery now. I was on the frequent flyer close surveillance program for 7.5 yrs and after 5 core biopsies and 2 excisions with LCIS findings every time + extremely dense breast tissue. I thought I was managing the anxiety quite well until my last mammo. At that appt they nearly let me out the door and sent me on my way for another 6 mos, but at the last minute they pulled me back in for more images and then did an abrupt turnabout concluding that I needed 2-3 areas biopsied. That really gave me pause and concern about what could potentially be missed and the fact that at least in my case, none of the diagnostic methods are especially infallible. The dense breast tissue adds a special level of extra concern for me. I have had ultrasound, mammo and an MRI just this calendar year. For many reasons the SERM and AI drugs were not a good choice for me. I began to feel like I was living with a loaded gun and sure did not want to run the risk of waiting just one 6 mos checkup interval too long only too discover I had something invasive. Another thing that factored into my reasoning leading to PBMX is that I had felt okay for years biding time to see what new studies would turn up re: LCIS...but there really isn't any big new news. The new study that came out in Sept is a decent sample size and length of time and it seemed to confirm that your risk with LCIS never plateaus with age and that in fact it may be 2%/yr vs. 1%/yr higher than the average woman. The Univ of Pittsburgh study that came out in June hypothesized about 4 possible areas for investigation to determine what might trigger LCIS to become invasive but they were merely suggestions/theories and who knows how and when that will get picked up for serious research.

I would echo what the other posters said. Do your due diligence. Investigate all you need to and consult with whomever you need to on all possible choices, summarize the pros and cons and let your head digest the info you organize. Stew on it for a bit. Once you feel like you have done all the rational legwork, as a poster said, your gut will tell you ultimately what is right for you. Having the utmost confidence in your surgical team will go a long way towards helping you get to an answer.

FYI, I was able to have nipple sparing, skin sparing PBMX and am dealing with the reconstruction process now. I feel like I have wrested some control over these circumstances by making the choice before it got made for me. My pathology came back with more LCIS + atypia in the supposed "good" breast. I feel I made the right choice. Nothing invasive found and no need for long term drugs. I no longer have to live my life in 6 mos increments along with the anxiety of waiting for test results. It probably took me a year+ to wrap my head around the prospect of a PBMX. If you had asked me about it 2 years ago I would have been horrified. By the time I went for surgery, I was strangely calm.

This discussion board is so helpful.  Good luck to all of you with your decisions.  Go with your gut instincts which are always right.  I am sending hugs and positive wishes.

Hi Res112: The number of LCIS or ALH/LCIS women who accepted tamoxifen varies with the study you look at.

In this study, 20 of 200 pure LCIS patients (1990-2008) took antihormonal therapy (15 of these took tamoxifen.) http://www.ncbi.nlm.nih.gov/pubmed/25944033

In this study, Overall, 26% of the 219 women in the current study received tamoxifen for chemoprevention, a figure that is substantially higher than the 4.7% rate reported by Port et al.,14 and very similar to the 32% acceptance rate of women with atypia who were offered enrollment in the Breast Cancer Prevention Trial.15 ....

A comparison of the 38 women with LCIS or AH who accepted tamoxifen and the 30 with these diagnoses who refused the drug demonstrated no significant differences with regard to mean age, family history of breast carcinoma, menopausal status, or history of hysterectomy.

Overall, a family history of breast carcinoma, a history of prior breast biopsy, menopausal status, and having undergone a hysterectomy were not found to be predictive of the acceptance of tamoxifen. Four of the 57 women (7%) who accepted tamoxifen stopped the drug during the study period: 2 because of mood changes and 1 because of night sweats, and 1 patient opted to undergo bilateral prophylactic mastectomy for greater risk reduction.http://onlinelibrary.wiley.com/doi/10.1002/cncr.20...

While its interesting to see how many people with X diagnosis or Y characteristics accepted tamoxifen, that doesn't mean you should or shouldn't take tamoxifen. Its so very individual. I had almost no problems with tamoxifen (besides multiple benign uterine polyps), while others just could not tolerate it.

Wow, lots of food for thought coming from these postings. So very helpful for me to hear about the different experiences and decisions you've all had and made. I have an appointment to meet with my doctor to go over some details and schedule my surgery. I feel very right about my decision to go ahead with the PBMX. I'm getting loads of support from my husband and children which have made this easier to handle too.I wish I would have discovered this discussion board sooner.

Hi MrsGreenJeans, wishing you the best for your surgery and recovery! We'll have to compare notes afterwards ; )

Hi Commander and welcome to Breastcancer.org!

You're sure to receive incredible support and advice here from other members shortly. In the meantime, you may want to check out the main Breastcancer.org site's pages on Aromatase Inhibitors, and also the Prophylactic Mastectomy pages.

We hope this helps! Please continue to check back in and let us know what you decide, or if you need more help!

--The Mods