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Mar 5, 2020 10:28AM
Mar 5, 2020 10:38AM
Hello Singing Cat,
A diagnosis of LCIS can send you reeling at first. But you have plenty of time to explore options of what to do or not to do. No urgency.
"Should I just cool my heels & be happy with the annual mammograms plan? Or should I go to my GP and ask for more? (And what more?)"
I'm in your situation and I personally did more. But one of the options provided to me by the surgeon who excised my LCIS was "nothing really to worry about & that I would need annual mammograms. That was it, no follow up appts." I'm in the US but I have a travel acquaintance in the UK who is a radiologist and he emphasized not doing anything drastic for LCIS and suggested I NOT take the drugs. He also reminded me to do my own monthly breast exams.
After a lot of research and trial and error with several of the anti-estrogen drugs, I settled on one and am taking it. Most women (depending on the particular study consulted, at least 70%) do not take drugs for the condition we have. At 43, if you are pre-menopausal, the only anti-estrogen drug available for you would be Tamoxifen. Last year studies came out showing that a low dose of 5 mg of Tamoxifen was as good as the normal 20 mg dose in reducing breast cancer risk. Good news for you, if you go the Tamoxifen route.
I get an MRI on an annual basis, 6 months after the mammogram, so I am being tested 2x/year, every 6 months. By the way, I make sure I get the 3-D Tomosynthesis mammogram, which has higher resolution.
The IBIS breast cancer risk assessment model has been mentioned here and if you go to a high risk breast clinic, Singing Cat, it will likely be part of your consultation. I see you have already run the numbers and come up with 56%. Every "breast professional" I have been in contact with--and it is over half a dozen--has explained this model way overestimates risk. When you mention going to your "GP to ask for more," your GP may not be all that informed on this unique condition. They may refer you to a high risk breast clinic/specialist.
If possible, I do think you should get genetic testing to see if you are at high risk genetically. That info can help guide you in what to do or not to do. I did pay for the genetic testing and am glad I did. It showed no genetic predisposition to breast cancer.
Best of luck to you and this is a good forum for info and support.