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Feb 4, 2020 09:22AM
"I don't even know what I want to ask."
It is overwhelming and scary. Sorry you find yourself in this situation. It's good you have supportive friends and especially a good boyfriend.
Inquire about genetic testing which is done with a blood sample. This will let you know if you have the BRCA gene which would further increase your odds of bc and affect how you go from here. Other genes are also tested for that might affect your decisions. Your family history is in your favor.
There are different kinds of LCIS. Ask if it is classic or pleomorphic. In fact, ask for the pathology report so you have all the facts. And from now on (if you have not been doing this) ask for the radiology report for each mammogram or MRI. Also get the pathology report from your excisional biopsy.
See if you can get annual MRIs (check insurance) and make sure your future mammograms are 3-D tomosynthisis, which you may be getting already.
It does not hurt to seek a 2nd opinion if you can afford it. Another point of view is always helpful I find. That second opinion might be from a "high risk breast clinic" with a nurse practitioner. It looks like you are following this option with your appts with 2 surgeons. You are being proactive.
In addition to surgeons, you may be referred to an oncologist to discuss preventive medications. One warning on any assessment tools the oncologist --or any of your docs--will likely use to estimate your future breast cancer risk: The most common assessment tools for women with atypia (such as LCIS) WAY overestimate the risk of future invasive breast cancer. Every "breast professional" I have dealt with and that total is over half a dozen, has emphasized this overstatement to me. It can be a shock to see numbers well over a 50% lifetime risk of breast cancer. But that high number, even if not accurate, can help you get additional screening such as an annual MRI, with insurance coverage.
I like to ask my doctors, "What would you suggest for yourself/mother/sister/wife (depending on age & gender of the doctor) if they had this diagnosis?"
"I wonder what I may have done to help this along, diet, supplements, stress etc."
A common reaction is to blame ourselves. Probably nothing you have done. Just like in the vast majority of cancer cases, people can't blame themselves for "giving themselves cancer." But a healthy diet and some stress management, along with exercise and limiting alcohol, can only help you going forward. No guilt.
"One thing I want to ask - did anyone actually feel something in their affected breast prior to diagnosis?"
I did not feel anything prior to my LCIS diagnosis and feeling something is not typical from what I know.
My doctors office said I needed surgery and then we'd discuss chemo or radiation.
As mentioned above, the surgery is to be sure there is no cancer lurking around the LCIS. Odds are with you that there is not. My surgeon said 80%-85% of the time, no cancer is found, which matches the statistics on most breast cancer sites. The chemo/radiation discussion would be IF the surgery found cancer.
Good luck to you.