High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS

Posted by elsie37 @elsie37, Feb 22, 2019

I know this is a breast cancer discussion site, but there are many women with conditions that put them at high risk for invasive breast cancer, even if it is not currently present or diagnosed. Thought I'd reach out for your input, your stories, your treatment plans, your concerns, your thoughts overall.

I have ALH, ADH, LCIS (6 foci that I know of at this point, both breasts affected), diagnosed at 58 (left) and 59 (right). Am working on taking the drugs but have had several failures over the past year. Will try the new low-dose Tamoxifen.

I'm doing alternating MRI and mammogram every 6 months with an additional breast exam by a professional 3-4 times/year. I've had 3 biopsies with a 4th coming up next month in under 2 years. The experts tell me once both breasts are fully checked out, the frequent biopsies will cease, which makes sense. What has your experience been with surveillance?

The risk of invasive cancer with LCIS, ADH, ALH seems to vary from about 20%-60% over a lifetime depending on the source of the stats. That's a huge discrepancy and not reassuring. All guidance, whether through my research or from interacting with doctors is, "Do the increased surveillance and do the drugs if you possibly can. Avoid a prophylactic bilateral mastectomy."

There are so many encouraging advances coming out all the time. The new lower dose of Tamoxifen that may be more tolerable is an example of a recent development and I have read that lower dosages of other drugs are on the horizon. Also in the works are topical tamoxifen and innovations in screening such as in this study that determines which lesions pose the highest risk, "Osteopontin and Premalignant Breast Lesions,” from Oct. 24, 2018 issue of The British Journal of Cancer http://healthnews.uc.edu/news/?/30292/ Or a full scan of the breast in 15 seconds with photo-acoustic computed tomography https://www.nature.com/articles/s41467-018-04576-z

Still, a prophylactic bilateral mastectomy reduces risk 95%+ immediately, no waiting for promising advances.

What is your approach to living with high risk of breast cancer?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

I hadn't heard of those upcoming treatment options or advances with breast cancer. Thank you for sharing. I'm certainly going to do some research. It sounds like they are making more headway and that's good.
I had atypical lobular hyperplasia, found with micro calcifications 5 years ago, biopsy confirmed ALH and I was screened for two years. That was the left breast. Then three years ago I found a cyst, got concerned (despite Mammograms showing nothing) and requested an ultrasound. Under my cyst was invasive lobular cancer. I had a bi lateral mastectomy and my on going risk at this point is 4-8% recurrence. Once you have a mastectomy all of your tissue is studied and in my case I had invasive lobular, atypical ductal, atypical lobular, cysts, small fibroids (not cancer) and a few other rare but quite early bad 'actors' in there.

Both of my breasts were involved and I was concerned about missing on going cancer so I opted for the mastectomy to reduce my risk and worry and on going testing (although I still see my oncologist every 6 months for checks, blood work and so far ultrasounds and soon MRI's…just to make sure.

It is every woman's personal choice how to proceed. I chose to remove my breasts because I didn't want to go through more lumpectomies and more tests and the subsequent worry (heck I still worry right before my 6 months checks now). My lymph nodes were not involved…there was no spread (Stage 1) and that was the outcome I was thankful for. I wasn't willing to trust science to find this in time for my sense of well being. That said, bi lateral mastectomies are a major choice and they come with the risks of surgery and recovery.
Good luck with your decision and your journey. Hugs to you!


Also, I was never able to take the AI type drugs or Tamoxifen due to side effects so I didn't get the advantage of reducing my ER+ status as I was progressing from Stage 0 (LCIS) to Stage 1 Invasive Lobular Cancer. FYI…………


Thank you for all the details, Cindylb. Good thing you pursued your concern even after a mammogram showed nothing! A good lesson to trust your instincts.


@cindylb, bravo for following your gut. I had a bilateral, Prophylactic Mastectomy almost 7 years ago. I did NOT have breast cancer. I also had none of the currently known gene mutations, but a strong family history and dense tissue. I had the procedure done 5 years before my familial age of onset. I had skin, nipple sparing direct to implant.
My situation is out of the norm. I was back to work in 10 days and within 3 months had 90% sensation. It has not been clear sailing, unrelated health issues and capsular contraction in the right breast.
I would do it again without hesitation. And yes, the breast MRIs are no fun,


@elsie37, the Breast Cancer group is the best group (at present) to have started this discussion. I also want to make you aware of the following related discussionsL

– Anyone dealing with Atypical Ductal Hyperplasia (ADH)? https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/
– ATM Gene Mutation and Care https://connect.mayoclinic.org/discussion/atm-gene-mutation-and-care
– High Risk Mutation (ie. BRCA, ATM, RAD51D) https://connect.mayoclinic.org/discussion/high-risk-mutation-ie-brca-atm-rad51d/

Discussions around gene mutations, cancer risk and treatment options are so important. Decision-making is tough and it helps to talk with others who have been there.


I’m wondering how many of you gals had ADH in both breasts? I have a long story but to make short of it- Feb 17’ found large lump, rt breast, under nipple. Had first mammo and US ordered by primary for lump. US was suspect, mammo showed nothing even tho US showed 2.5 cm. I have dense/extremely dense breasts so I couldn’t be seen on mammo. Dr said it had both benign and concerning findings on US. Had BX a week later. Path came back fibroadenoma. It was causing pain and almost was poking out. I also had implants at the time which is probably why it was so prominent. The implant pushed it out as it was growing right on it. The dr said I could have it removed in a excisional BX. I did that in August 17’. Path came back much to the surprised of my surgeon with 2mm ADH growing within and CCH in adjacent tissue. She didn’t really recommend anything else except yearly mammos cause I have no family history. FF to March 18’. Had yearly mammo. Now I have left sided enlarged axillary nodes. I had noticed some achy pain there. Weird. Have another US. US shows several lymph nodes full of silicone. That first mammo ruptured my left implant. Have MRI next and it shows bilateral axillary lymphadenopathy due to silicone infiltration as well as some questionable spots in the left. In May 18 I have the implants removed as well as a large lift to remove as much tissue as possible to reduce risk. Loved this surgeon. He was amazing. He called me three days later saying I also had ADH in the left breast in the path report. Probably one of those spots on the MRI. By now, I have huge swollen nodes in BOTH armpits and my chest hurts. I apparently have silicone in my chest nodes too. These were also gummy bear implants, put in in 2013, that were not supposed to do this. So now FF to Dec 18 and I have three of the largest nodes taken out of the left side for symptom control only to now develop lymphedema bilaterally and in my left flank due to still having silicone infiltration and now missing nodes. My upper lymph system is messed up bad. All of this on top of ADH in both breasts. My new breast surgeon says 3D mammo yearly is enough of a watch for me. I’m concerned that even with 3D, they can’t see enough. Anyone else have silicone infiltration and/or ADH in both breasts?

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