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Jan 16, 2008 04:16AM
Jan 16, 2008 05:30AM
Your choices may be influenced by what your docs/insurance are willing to do, too. I don't have the family history you do, either, but my breast surgeon 'does not want to do any further surgery on me' (i.e. even if I want no reconstruction), and my 'major institution' consult recommended no MRIs because I have so much scar tissue. (Right now I'm on tamoxifen + yearly mammos + biannual clinical exams.) It sounds like there is a great variety in what docs do with LCIS.
If you have choices, there is no right or wrong answer. There is only the best choice for YOU, that only YOU can judge.
I think most breast surgeons insist that women wait several months before they have BPMs so the patient is more sure that is what they want. It is, of course, an irreversible decision. I think studies have shown that most women who want BPMs are happy with their choice if it was from their own desire initially.
There is a LOT of controversy about LCIS. There is hardly any factor that is NOT a controversy about LCIS. There is controversy on what it should be called (LCIS vs lobular neoplasia), whether is should be classified as a cancer or not (most oncologists consider it a benign condition), the risk it imposes for breast cancer (because we don't know how many women have it), and the suitable treatment.
LCIS used to be routinely treated with BPMs, because they didn't know the natural history of the disease. Then, when they started doing lumpectomies for small invasive cancers, most breast surgeons thought it was overkill to do PBMs for LCIS.
LCIS is *usually* not detectable under clinical exam, mammos, ultrasounds, or MRI. It is normally found as an incidental finding after biopsy. So they don't know how many women (AFAIK they haven't found it in men) are walking around with it and don't know it, because most women haven't had a breast biopsy.
***********If you haven't had a surgical excision, then most docs want you to have a surgical excision to make sure there isn't something worse going on. I think this is VERY important. They find something worse maybe 10-20% of the time***************.
Now it appears that under **some** circumstances that LCIS may be a **nonobligate** precursor to bc. This means that (probably a small) portion of cases LCIS **may** be precuror to cancer, but most of the time it isn't.
The number that my oncologist gave me, which corresponds to the recent Port study, is that the risk for breast cancer for LCIS may be about 1% per year. The average age that LCIS is diagnosed is in one's 40s or 50s, so for an average lifespan, this would mean a 30-40% lifetime incidence. This includes DCIS.
I have LCIS and a weak family history, but I have been given lifetime figures as low as 10% (no increased risk), to when you put my numbers in one model, 85%. But models are crummy. I saw one paper that said the prediction of breast cancer, even for the Gail model, which is the standard bc model (which specifically excludes LCIS on the NCI website), is, *for the individual*, 'only slightly better at predicting bc than the toss of the dice.'
Whatever the risk is, the location of LCIS is often bilateral (ie they find LCIS in both breasts) and usually multifocal (there is more than one spot of LCIS.) But this makes little difference, because even if you have 1 spot of LCIS in one breast, it puts both breasts at risk. (Yes, its a weird disease.) That's why they normally recommend whatever they do for LCIS to do it bilaterally. In other words, they normally do NOT recommend unilateral mastectomy. Since lobules are found all over the breast, and you usually cannot see LCIS under imaging, the 'only way' to remove almost all the LCIS for sure is to do mastectomies. I have not seen it recommended that LCIS be excised to the borders in any paper. I think that would be difficult to do without doing a mastectomy. They often find LCIS not *at*, but *adjacent to* the 'lesion of concern'. So they don't know a lot about LCIS.
With your family history, you may want to consider getting genetic counseling from a board certified genetics counselor. These are usually found at major universities. In the Port study, I don't think there was an increased incidence of bc in women with a family history of bc. But the numbers were way too small to reach statistical significance.
As others have said, there is no rush to these decisions. It is a very personal, individual choice.
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov
12/8/2005, LCIS, ER+/PR-
1/24/2006 Lumpectomy: Left
7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)