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Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Breast Cancer | Last Active: Sep 11 9:29pm | Replies (227)

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@monical

Hello everyone - I just found this forum and I am so glad that I did. After a stereotactic biospy in January revealed that I have ADH my head has been spinning. I am having my excisional biospy a week from tomorrow (Saviscout marker going in morning of surgery) and I am trying very hard to keep my anxiety in check. My genetic testing is negative, but I'm at high risk because of family history of breast cancer. I already consulted with a medical oncologist to discuss my options and prophylactic medication was addressed. I was instructed to get an MRI and I brought up my concerns w/ the contrast and was told it wasn't a big deal if I didn't have kidney disease, so yesterday I was at the hospital to get the MRI and at the last minute I was given a sheet about the contrast, Gadavist, that made me walk out of the door. It really upset me that I had to find out the potential side effects and that this contrast can linger in your body for months or years at the last minute. So I've decided to deal with the surgery first, get the results, and then have a clearer picture of the risks/benefits of the MRI. Just taking one step at a time...Thanks for "listening" ...

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Replies to "Hello everyone - I just found this forum and I am so glad that I did...."

Walked this path just this past December. Stereotactic failed to get the calcifications seen on Mammogram. ADH found incidentally in the ‘missed’ biopsies. Had savi scout and lumpectomy Jan 3rd. Calcifications benign but more ADH AND ADL.
diffuse enough to put my risk of development into cancer at 49%. I too am negative for BRCA. Have only a paternal aunt who died at 32.
I’ve elected to have prophylactic bilateral mastectomy, including nipple removal. Above pectoral round implants. (I’m v athletic - need my muscles more than my breasts). With Aloderm (cadaver donated skin complex to buffer between my skin and the implant. I’m thin - no fat layer to either graft from, or cushion the implant). Non textured (aka smooth) implants as I don’t wish to take on the possible additional risk of contracting lymphoma (seemingly associated with textured implants). I would’ve preferred teardrop shaped implants(I think) but they’d have to have been textured in order to stay in place. And (see above on textured) Surgery set for March.

Lots of researching. Interviewing multiple surgeons. Introspection.
It’s the right choice for me.
And rest assured you’ll find the right one for u too.
There are a number of FB closed groups that offer terrific support too. Lmk if you’d care fir the names.
Hugs. Keep breathing.

monical..........We're all glad you found this forum as well. It's been a great source of support for me. I had a pretty 'traditional' treatment plan......stereotactic biopsy, excisional biopsy - ALH (lobular vs. ductal) on my left breast. That was 5 years ago. 3 years ago (following testing each 6 months I found a lump, which was a cyst. The doctors sort of wrote that off but I'm glad I insisted on an ultrasound which found a suspected cancer, which in fact was invasive cancer, Stage 1. )
I found the process of the two biopsies and MRI's to be a lot more painful and anxiety producing in many ways that the bi lateral mastectomy I chose. (My issue was Lobular Hyperplasia in the left breast and lumpectomy ultimately and the invasive cancer in the right breast.....so off with my breasts. I am holding at 3 years and counting now with no new signs of cancer.)
As you move along this journey there will be tests and most of them have some level of fear and possible 'issues'. I didn't like the MRI and the contrast dye made me feel very odd (during the test) but it's very sensitive and picks up lots of smaller things that might be missed otherwise. Just something to possibly consider. I will have a follow up MRI possibly this year or next just to make sure I too worry about the effect of the dyes and possible complications but sometimes they can detect something early and that's a big plus.
Hugs..........people here have very diverse and helpful experiences. Keep posting and people will be there for you.