Next steps after they found ALH on core biopsy

I know how you feel . My story is different but similar in many ways. I haven't opted yet for the double PMX but I feel like I'm sitting daily on a powder keg waiting to explode.

Genetic testing may help you make these decisions. I did this online on my own no doc or insurance involved through Color Genonics. Came up negative for 29 genre tested. All maternal family members died of either breast or ovarian cancer... BRCA1. Ashkenazi Jewish ... No break in the line. It was/ is a no brainer

Gosh - I could have written your story. Scary family history with earliest onset being 27 yrs. Twenty years of high risk screening. I always said if anything came up I'd have them removed. ADH and ALH did come up. PBM but with the outcome no one wants to hear. A hiding IDC was found in the final pathology. Besides complete devastation I was soooo angry and embarrassed that I "let" it catch me. My next thought was "oh why, oh why couldn't it have been DCIS?" No mutations in 19 gene panel. My BS sent me to a genetic counselor after they found the ALH/ADH. He gave my a 50% risk.

It's all good now. I was so hoping get out from under the shadow of BC that I lived under my whole life. Not possible now, but then again, I faced the monster and he's just not that scary any more. He may be able to take away some things, but he can't take away the 55 great years I've had.

Thank you- eot28 - it really is all good. Funny, it took getting cancer to lose much of my fear of it. My case is not the norm, most women who choose this route get a good report. I tell you though - the absolute best feeling inthe world was waking us from surgery "knowing" I'd outrun the beast. One thing I learned on these boards is that tamoxifen can reduce breast density. I might not have chosen the mx if I knew they could see something besides all white on the screening. No one wants to take the drug, but it really is amazing in what it can do. There is a lovely lady on these boards AWB who took it preventively for lcis plus family history and is now taking an AI preventively. She has done really well on it.

We ladies who know something is going on are in a very lucky minority. A good friend of mine from these boards had a surprise dx after a PBM (Again not common, but the similar dx has made us lifelong friends) commiserated with me that we are the luckiest unlucky people in the world.

Hang in there. Continue to be your own best advocate. Get those MRIs and ask for all reports! Take care. I'm here if you need me.

I'm pretty sure that Anne, like me, is now taking Evista. I don't know if Evista reduces breast density . I also have dense breasts. What I wonder sometimes is: who doesn't have dense breasts ? Seems like it's very common for everyone , not just for people on these boards

Yes, eot28, this whole thing has brought back lots of difficult memories. My dad died from pancreatic cancer a year after my mom died. I spent the first couple years of marriage thinking I was going to be the next one. Not really rational, but I already had a lump they were watching, so I felt like a time bomb. They decided to remove the lump because of family history and it was a benign fibroadenoma. After that I decided to stop living in fear. I had my base line mammo at 33, and was told I didn't need to come back until 40 (which was not the best advice). Now, here I am. Back for my first mammo and its all starting again.

Some of the problem is that the doctors all started with worse case scenarios. I was called after my biopsy that it was carcinoma in situ, early cancer, probably just a lumpectomy and radiation and tamoxifen. But they needed to do more staining. Then I was told no, it's LCIS, not DCIS. We still want it out. But go for genetic testing. And then they laid out the surgeries they would suggest if I was positive. They really thought I would be positive. So I spent weeks of waiting, preparing mentally for surgery, only to be told now that I'm negative and they don't want to do anything but watch and wait. So, while its good news that nothing worse is there right now, it's a bit of a pulling the rug out feeling.

Before I found out my lifetime risk, I was told that I should look on the bright side of the number. Look at the % likelihood that I won't have breast cancer in my lifetime. Ok. There's a 33% chance I won't have invasive breast cancer. Not so encouraging.

Anyway, I don't want to hijack your topic. Thanks for letting me vent. Let me know what you decide. I'll keep in touch as things progress. I'm still waiting to hear about a reread of my films.