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May 6, 2017 10:22PM
H, Holly and Sue. I know about the anxiety that comes with LCIS, and what to do. I'm sorry you both have this stress.
I was diagnosed with LCIS with atypical hyperplasia 11 years ago at the age of 47. I had an excisional biopsy at that time. I was told then that I needed no further follow-up other than regular mammograms. Since I have extremely dense breasts I also added ultrasound. Last two years I noticed a dent in the same breast as the LCIS - mammograms and ultrasound clear both years. But because it seemed to be getting more pronounced, I was told that I should add MRI. I did genetic testing in order to see what my risk was in order for the MRI to be approved. Though I tested negative for an extensive number of genes that are linked to developing breast cancer my personal lifetime risk was 60%, mostly based on the LCIS, Atypia, and a family history, paternal aunt and her daughter, my cousin, if I add in the factor of my extremely dense breasts it brings it up as high as 85%.
High enough to add MRI to my screening regime. Did that in Dec. and on the way home got a call from my doc, yikes!, that there was a suspicious 4.5 cm tumor in the same breast. MRI guided biopsy then lumpectomy. Benign thank god, but a whole host of fibrocystic changes, (radial scar, papillomas, hyperplasia, calcifications). Because of my dense breasts none of these were seen on either 3-D digital mammogram, or the ultrasound, even when I've had diagnostic, two years running. The large tumor was causing the dimpling.
It has been a hard decision but I've decided to get a Prophylactic Mastectomy with immediate Diep Reconstruction. I am scheduled for May 25, at NOLA. I have seen a number of doctors here in the san francisco bay area, and in NOLA. None of them thought I was being overly aggressive, though I do have the option to be carefully watched on tomoxifen with screening every 3-6 months and annual MRI and thought very seriously about that, though I get migraines too so that's a concern.
The thing is that this last business started in December, and the surgical biopsy wasn't until end of March. That was three months of worry before I knew it was benign. So whether or not I ever go on to develop breast cancer, I will have to be watched so carefully that I will surely be undergoing more biopsies over the years since anything that lights up on the MRI will have to be removed to be sure. More waiting, more stress. Not for me.
I know it's very scary because sometimes it all just seems like guesswork, and it's all very subjective. The thing to remember is that you have time to figure out what to do. LCIS is not cancer, but a marker that you are at an increased lifetime risk. There are lots of factors that factored into my decision, not just the LCIS. Genetic testing is helpful. Talking with a top breast specialist or two (or 6 like I did !), asking for review by a tumor board etc. are places to start. Just be proactive.