May 7, 2019 01:17PM - edited May 7, 2019 09:22PM by leaf
I have LCIS, ALH, DH (not ADH). Its the 'atypical' in ADH that significantly puts you at higher risk. I did antihormonals and do screening.
The usual choices for ALH/LCIS are
a) Screening, usually at least annual
b) Screening, usually at least annual, plus antihormonals
c) Prophylactic bilateral mastectomies - usually recommended for people who are at very high risk for other reasons, such as known BRCA-1 and/or BRCA-2 mutation positive, or a STRONG family history (such as most/all of your female blood relatives, especially first degree-mother, sister, daughter -had - especially premenopausal - breast cancer or ovarian cancer or male relative had breast cancer.) Some people have family histories that make it more difficult to estimate their risk for genetic mutations, such as they were adopted, or their father and mother had no sisters or siblings, or have a small family. Genetic testing is MUCH cheaper than it was say 10 or 20 years ago, and if you do choose to get genetic testing, I would highly recommend seeing a board-ceritified genetic counselor before testing.
LCIS and ALH are often in both breasts. They know this because before the ~1990s they normally did bilateral mastectomies on all LCIS patients, and they could do pathology on the mastectomy specimens. Usually LCIS and ALH are multifocal (meaning they occur in many different spots in a breast) and often bilateral (in both breasts.) They can't RELIABLY detect if/where you have ALH or LCIS without taking a tissue sample and put in under the microscope. LCIS is considered a 'nonobligate presursor', which means it puts people at higher risk for breast cancer, but, if you are one of the people that later goes on to get breast cancer or DCIS, the breast cancer or DCIS is often not AT the site of known LCIS, but at a spot that looked totally healthy under screening.
Just because you have LCIS AND ALH AND ADH, that does NOT mean your breast cancer risk is higher than someone who 'just' has LCIS alone.
Do your research. Look at both your heart and head (emotions and rational facts, such as they are.) There's no rush to make a decision, and at least for options a) and b), you can choose to switch to another choice sometime in the future. There is NO right choice for everyone.
You may get numbers as to your future risk of breast cancer, but, unless you are at VERY high risk or have a BRCA mutation, they really don't know those numbers well; there is a lot of uncertainty about that number, or range of numbers. Most numbers, at least for CLASSIC LCIS, suggest that Roughly less than half of women with LCIS will go on to get breast cancer in their lifetime. Note that even if you DO get breast cancer, that does NOT automatically mean you will die of breast cancer.
Whatever your choice, you will get support here. I guess I would not comment on someone who had LCIS and choose NOT to get any screening, even every other year, or mastectomy, unless they had some other dire medical condition where it wouldn't change their outcome if they got breast cancer, or were quite elderly so they would likely die of something else such as old age before they died of breast cancer.