LCIS--close monitoring

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Comments

  • leaf
    leaf Member Posts: 8,188
    edited September 2009

    Hi Chris.  I wouldn't assume that people with LCIS (and nothing worse) either do PBMs or tamoxifen.

    I know this is a small study, but in this 2005 study, apparently, 30% of LCIS patients chose no mastectomies, and no hormone modulators. http://www.ncbi.nlm.nih.gov/pubmed/15862506

    It has been shown that most people who post on on-line support groups have special reasons for doing so -  they usually have an unusual problem, or have additional, special reasons for going to the trouble of posting. (Since it takes time and effort to search them out, they have more of a reason to post.)  Most women, even with invasive breast cancer, stop posting here after a few years.   The posts you see here are NOT representative of the general population of people with LCIS and nothing worse.

  • DRT
    DRT Member Posts: 25
    edited October 2009

    I agree with leaf. Most women with LCIS don't develop breast cancer, but many of us with extenuating circumstances do choose to be proactive and take action.

    I was dx'd 4 years ago at time of elective breast lift. I saw ONC who offered the usual; close monitoring, hormone modulators or PBM. BTW, I am also an MD, as is his wife. When I asked what he would chose for her, he replied, BPM. (We are all in our late 40s, married, done with kids, etc). I opted the monitoring route initially, but that is where things did not go as planned. First, my mammos are snowstorms of calcification so are basicially useless. I have never had palpable masses.  I started then with MRI monitoring, but had an allerigic rxn to the contrast (gadolinium)  and since I am still pre-menopausal there was a ton of hormonal effect on the images. On repeat (with huge prednisone and benadryl doses pre-test), two 1 cm lesions noted. Bx were fortunately benign. Follow up 6 mo later, MRI ok, Now, new MRI shows new bilateral lesions, enlarging, irregular etc.

    I reconsulted my GYN, my hubby, (also MD) and my heart and decided to go ahead with PBM. Oh yes, I am also adopted so have no idea of fam. hx risk, although I am BRACA neg. I am post op day 9, no drains since day 3, and was lucky enough to have one-step reconstruction with silicone implants at time of MX. I feel fine, just a bit tired, breasts are tingly, stretchy, etc. I plan nip/areola recon when all healed and am so thankful that my path returned without any signs of cancer.

    Pain is not bad at all (much less than previous tummy tuck!) but still need something to sleep at night since I am a stomach/side sleeper) but daytime managing on ibuprofen and occ. half vicoden or valium if the girls are  really achy.

    For me, the peace of mind was well worth the surgery. I just could not continue with MRIs, biopsies, serious allergy concerns, and no real ability to 'closely monitor'. Everyone needs to really listen to their inner voice and trust advice of docs you trust. There is no right or wrong approach with this tough situation.

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