High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS
I know this is a breast cancer discussion site, but there are many women with conditions that put them at high risk for invasive breast cancer, even if it is not currently present or diagnosed. Thought I'd reach out for your input, your stories, your treatment plans, your concerns, your thoughts overall.
I have ALH, ADH, LCIS (6 foci that I know of at this point, both breasts affected), diagnosed at 58 (left) and 59 (right). Am working on taking the drugs but have had several failures over the past year. Will try the new low-dose Tamoxifen.
I'm doing alternating MRI and mammogram every 6 months with an additional breast exam by a professional 3-4 times/year. I've had 3 biopsies with a 4th coming up next month in under 2 years. The experts tell me once both breasts are fully checked out, the frequent biopsies will cease, which makes sense. What has your experience been with surveillance?
The risk of invasive cancer with LCIS, ADH, ALH seems to vary from about 20%-60% over a lifetime depending on the source of the stats. That's a huge discrepancy and not reassuring. All guidance, whether through my research or from interacting with doctors is, "Do the increased surveillance and do the drugs if you possibly can. Avoid a prophylactic bilateral mastectomy."
There are so many encouraging advances coming out all the time. The new lower dose of Tamoxifen that may be more tolerable is an example of a recent development and I have read that lower dosages of other drugs are on the horizon. Also in the works are topical tamoxifen and innovations in screening such as in this study that determines which lesions pose the highest risk, "Osteopontin and Premalignant Breast Lesions,” from Oct. 24, 2018 issue of The British Journal of Cancer http://healthnews.uc.edu/news/?/30292/ Or a full scan of the breast in 15 seconds with photo-acoustic computed tomography https://www.nature.com/articles/s41467-018-04576-z
Still, a prophylactic bilateral mastectomy reduces risk 95%+ immediately, no waiting for promising advances.
What is your approach to living with high risk of breast cancer?