1. < Breast Cancer

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.

katnotcat | @katnotcat | Nov 12, 2023
In reply to @fronterae "Hi @katnotcat, on December 2022 I was diagnosed with ALH in my right breast. I was..." + (show)
@fronterae

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.

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Thank you for sharing with me @fronterae. They consider the breast reduction I had excisional surgery. So now 1 year post op, they will have a true picture of what is going on. The baseline MRI and the mammogram that I had this year was basically wait and see due to cellular changes post op. It was explained to me that if anything shakes out at least I have already been taking Tamoxifen for 10 months. I have no idea if its even working besides the awwful side effects. So much anxiety with these precursor/risk factors. It's like something is chasing me.

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katnotcat | @katnotcat | Nov 12, 2023
In reply to @cindylb "My experience may be similar in some ways and not in others...but here's my experience. I..." + (show)
@cindylb

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

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Thank youso much for sharing your experience with me. I think ultimately I will be seriously considering the mastectomy if anything is found this week. I feels so out of sorts from the Tamoxifen and now have to take more meds gust to manage the side effects. I think you were absolutely right to be assertive. There are too many unknowns to manage this pretty much for the rest of my life, waiting for the other shoe to drop. Thank you!

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katnotcat | @katnotcat | Nov 12, 2023
In reply to @colleenyoung "Hi @katnotcat, so many decisions to be made with ALH and PASH. It's not easy and..." + (show)
@colleenyoung

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?

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Thank you! I am a hot mess of emotions. The MRI is this week at Dana Farber. I am worried and completely out of sorts, probably amplified due to the Tamoxifen. I am prepared though. I am ready to make tough decisions if I have to. It does not help that I lost my childhood friend in September to triple negative breast cancer at the age of 42. Unfortunately she had been told she was cured when the cancer came roaring back. I really hate when my anxiety drives the bus but I am scared.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 2023
In reply to @katnotcat "Thank you! I am a hot mess of emotions. The MRI is this week at Dana..." + (show)
@katnotcat

Thank you! I am a hot mess of emotions. The MRI is this week at Dana Farber. I am worried and completely out of sorts, probably amplified due to the Tamoxifen. I am prepared though. I am ready to make tough decisions if I have to. It does not help that I lost my childhood friend in September to triple negative breast cancer at the age of 42. Unfortunately she had been told she was cured when the cancer came roaring back. I really hate when my anxiety drives the bus but I am scared.

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Kat, I'm thinking of you as you get ready for your MRI this week. You got this!

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