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

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 discussions

– 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?

Hello,

I had a breast reduction in Oct 2022. ALH was incidentally found in my left breast and PASH in my right breast. I have an oncologist at Dana Farber in Boston and i am on a high risk protocol (my mom had DCIS). I had a baseline breast MRI in January and then started Tamoxifen in February 2023 (its not fun). I have gained about 13 lbs since the tamo and am worried that my chest will get bigger. Lately I have been experiencing sharp pains in my left breast (prob for last 3 weeks but recently its been consistent throughout the day). The anxiety around all this is the worst. My mammogram in May took a couple of weeks to report because of cellular changes due to surgery (the baseline MRI had same result). My oncologist wanted to wait until this coming breast MRI (november) to see what shakes out. Im very nervous that there was something else left in my breasts that will need further treatment. I am at the point that I would elect to have the masectomy if anything else is found. Has anyone had a similiar experience of wait and see? From what I have read ALH can quickly progress into IBC? Also, read that PASH is benign but its noted in all my medical records. Not sure why its so important other than its pretty rare?
Ive only been dealing with all this for a year...I cant imagine dealing for an extending period of time. Or having to have further, intensive treatment.
Any advise would be appreciated!

Hi @katnotcat, so many decisions to be made with ALH and PASH. It's not easy and anxiety-inducing for sure. I'm tagging fellow members like @fronterae @delormv @cindylb @casa @tommie57 @sorrel who can share their ALH experiences with you. And @annac3 has PASH.

You may also be interested in these related discussions:
- Atypical lobular hyperplasia: Did you have surgery?
https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia/
- Tamoxifen yes or no?
https://connect.mayoclinic.org/discussion/tamoxifen-yes-or-no/
- PASH with invasive ductal carcinoma
https://connect.mayoclinic.org/discussion/pash-with-invasive-ductal-carcinoma/
When will you have the breast MRI? How are you doing?

My experience may be similar in some ways and not in others...but here's my experience. I have had a bi lateral mastectomy for invasive Lobular Carcinoma (in 2015). In 2013 I was diagnosed with LCIS (lobular carcinoma in situ). I did 6 month check ups and two years later had invasive cancer, Stage 1. I think, at the time, it was reasonable to wait and see but if I knew then, what I know now...I would have opted for the bi lateral mastectomy in 2013....but I didn't and the doctors couldn't know. I was lucky my cancer was caught early but I hit some bumps along the road. First, I worried a lot, second the lymph node biopsy of the Stage 1 bi lateral mastectomy resulted in lymphadema of my right arm, which has caused me many problems over the years and third....the oncologist who I was seeing for check ups ignored my breast lump I found and told me to 'wait'. I didn't wait and I'm grateful I asserted myself because I would have been much worse off if I hadn't moved forward as quickly as I did. It should be noted that my 2013 LCIS diagnosis was in my right breast and my invasive cancer was in my left breast. Lobular Hyperplasia seems to show up in both...hence, the reason I opted for the mastectomy. I was in my mid 50's at the time and I opted not to get reconstruction. The extra surgery, time and pain wasn't something I wanted to experience. I don't regret that decision...especially now that I am diagnosed with two autoimmune conditions. My body probably wouldn't like foreign objects inside my chest wall. Heck, at this point....my own body doesn't even like itself, ha ha. Push for your rights, be your own advocate, get second opinions, reach out to others (as you're doing) and research on safe, reputable sights and get a good idea of what many medical professionals feel. Do what your instincts tell you to do as well. You know your own body and mind. Hugs

Hi @katnotcat, on December 2022 I was diagnosed with ALH in my right breast. I was 50 at the time with very dense tissue and family history(sister with DCIS at the age of 36, she did double mastectomy). My breast surgeon did a excisional biopsy. I had Genetic Test in January results negative. I am in a close surveillance monitoring with alternating MRI’s and Dx mammograms every 6 months. I went to an oncologist that suggested to take Tamoxifen, I decided not to take them because all the side effects and just to keep monitoring with MRI’s and Mammograms. On June I had my MRI and was ok, but in July I had a follow-up mammogram after surgery and they found more clusters of microcalcifications in the same breast. They did a biopsy in two different areas. Both of them with ALH. The doctor told me that I don’t need surgery. I have another Dx mammogram in December 5th and appointment with the Nurse Practitioner the week after.