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May 2, 2014 02:17PM
I only have classic LCIS, but my breast surgeon (who did my breast excision) totally refused to do 'any further surgery' on me. Her first words to me (before she even asked about my family history) was 'If you want prophylactic mastectomies, I'm going to sit down in a chair.' I can't get along with her at all. If I would have had a significant family history, then I think the story really changes, even if you're against giving PBMs to classic LCIS women. So, yes, some breast surgeons refuse to do PBMs on LCIS patients. If she would have been willing to do PBMs, I would much more likely to have them. As you found, if you can't find a surgeon to do the surgery, you aren't going to have the surgery.
Of course, the choice for PBMs is very individual, but I'll tell you, for me, if I had PLCIS, I'd be really searching for a surgeon to do them. For me alone, if I couldn't get a breast surgeon to do them, I'd be hunting for a general surgeon who would, not caring if they were an excellent plastic surgeon or not. I would make sure, though, that both your surgeon is willing to do the operation, and that your insurance will cover it. Many physicians and hospitals are getting paid less with the Affordable Care Act, and if you have a higher co-payment, I'd sure want to know before rather than after. Several women here have said they didn't have trouble getting covered for PBMs for LCIS, but I don't know if they had a significant family history, and insurance companies may be looking for cutting benefits now. Maybe I'm an old-fashioned stick-in-the-mud, but I'd really want to know my financial burden (if any) beforehand.
One woman here (sorry, I can't remember which one) pointed out that PLCIS not only have the 'subsequent cancers often appear in areas in the breast that looked totally normal on imaging' and the increased risk of ILC (aka 'the sneaky one') that classic LCIS women have, they also have the increased potential aggressiveness of a 'DCIS-like' condition.
I can certainly understand why PBMs may not be a good choice for some people. They may not be able to be off work that long, they may not get the cosmetic results they want, they are at risk for infections, they often loose a significant amount of sensation, they may be a poor surgical candidate, it may be too expensive, etc.
When I had genetic counseling, my genetic counselor pointed out that there are some women who, even though totally BRCA positive, and have ~85% lifetime chance of getting breast cancer, still choose to not have PBMs. I may not totally understand that choice given the risks of some of these people, but I certainly support whatever choice people make for their own situation.
I would only encourage everyone to look at all the risks and benefits of their choices, look at both their brains and hearts, and make the best choice they can.
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)