What % of women with ADH contract breast cancer

bd2486 @bd2486

Mayo Clinic and John Hopkins web site quote similar percent of future cancer.
7% after 5 years
13 % after 10 years

What the web site does not give is details of what population the statistics are based on, Is this all women with and without treatment? With or without surgery ?

Discuss with your onocologist the risk with and without treatment.

Here is Mayo's web site that discuss complications (risk):
https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/symptoms-causes/syc-20369773#:~:text=At%205%20years%20after%20diagnosis,be%20diagnosed%20with%20breast%20cancer.

Laurie

So, I was pre-menopausal and had extensive ADH but it was mis-dx as high grade DCIS w/ necrosis. Actually, there was a large disagreement between four institutions about it--I challenged a disagreement re grade before the recommended mastectomy (I had small breasts and the calcs were all over the place) and only afterwards when my breast was on the slab did they think to send it to a guy at Vanderbilt who determined it was "florid hyperplasia" w/ ADH after all, which meant I'd just stopped everything to go through this massive scare about potential invasive cancer, chemo, had to drop out of a doctoral program, etc., when in fact my push to do watchful waiting was in fact RIGHT.

I know people go into this field to mean well, but given that many women aren't recommended to have mammograms after 70, and you've got other health issues, recommending surgical tx of a pre-cursor pre-cursor to me, well, TO ME, literally, would represent iatrogenic harm.

I had microcalcs recommended in 2013 in my contralateral breast for surgical biopsy and insisted on watchful waiting--turns out 10 years later I was right. They're stable. However, I now have two new invasive lobular lumps (Stage 1 so far) in completely different places that, get this--were only found by me, because even now they still don't show up on mammogram and didn't two years ago, when I felt I was kind of fobbed off by a satellite clinic of my famous treating institution. Had I counted on the "system" I would have been _under_ diagnosed with the full-blown cancer I have, and these babies would be a few cm bigger before someone decided they were worth further imaging.

This is all to say that these are very, very imperfect health systems, full of well-meaning people (and people worried about litigation), and in the end, to me, it's very important to do what you're doing, and also go straight to the peer-reviewed literature and read the latest debates and decide for yourself. I have some methodological training, but it's really not necessary--anyone w/ a 4-year-degree or whose motivated to do a little self-education can figure out abstracts and discern the latest debates--meaning, the leading areas of uncertainty, where THEY aren't sure what's right.

There's overtreatment, undertreatment, invalidation, amazing supportive care, getting lost in the cracks, getting cynically exploited for profit, getting amazing free treatment by generous health care providers supported by generous donors. and every permutation of human and organizational behavior in between . . . and only you can weigh the risk you're willing to tolerate against the benefits and very real side effects from treatment. To me, the big problem is that patients do not get fully informed about these realities--not by physicians or by most of the official breast cancer orgs--and are usually minimized when they independently investigate these realities for themselves.

If it were me, I'd certainly use watchful waiting for ADH, esp w/ concurrent health issues. In fact, for me, I'd choose watchful waiting even for DCIS--at least for the first 6 months--to see if it's stable. I've also got an invisible, very challenging disability--one that was in fact triggered by the original mastectomy 17 years ago-- and overtreatment for me exacts a worse toll than the risk of invasion.

AND, the very system that overtreated me before was MISSING my current truly invasive cancers that were only found because of my own advocacy. There's no great conspiracy of bad people here--just an overly complicated multi-institutional "system" that introduces unfortunate limitations.

Glad you're here--your self-advocacy is to my mind the most important step. It means, just for today, which is all we have, you're taking responsibility for your health and therefore your quality of life, and that's ultimately what it's all about.

God bless and good luck--

Eight years ago when my ADH was found I was told 13-15% risk of future cancer. This winter I read an article that the risk increases with inflammatory autoimmune disease which I have. I asked for my risk to be recalculated -breast center agreed it was higher and followed up with diagnostic mammo/mri order and cancer was found. I had not missed a mammo in those eight years.

In a 12 yr study I came across, only 20% of ADH women advanced to cancer - even without preventative strategies. (National Library of Medicine - breast cancer research)

And age and other health issues should always be part your decision making. I am sure you would feel differently if you were 28 instead of 78.
Your decisions have to be the best for YOU. Have you discussed this with your doctor?

I saw a breast surgeon in San Diego, he said 15% chance . I have 2 spots. He wasn’t sure if that increased odds. I have read research that says no. But 3 spots would be a yes. I have not been referred to oncology by Sharp. I have to have a surgery to show if I have CANCER first, then I can see oncology. I have aMSN and research review experience. I was given no information about anything and had to find it on my own. The biopsy was 12 vacuum assisted samples & The needle 9 gauge. This is good - and I had more tissue taken and studied. The areas are about 2-3mm. So I independently advocated for a MRI and was granted one. ( I am concerned for the contrast- and will see if I can have it without). I have 2 parents who died of kidney failure so I am reluctant to have general anesthesia. I was refused local. But I am going to seek a second opinion from UCSD. Also I am getting a pap and a genetics test before any surgery. And am also asking for a colonoscopy. Rationale is if I have any other issues better to do this all at once. I am 52 and very healthy. I use a small amount of Bioidentical HRT. And I used BCPs for many years. So I have not had any counseling about that - but for now I am weaning off. I really hope there is an ADH support group. We are a lost bunch. I was lucky to have one friend who has experience. She had mastectomies after 3 spots and a BRCA positive diagnosis. This whole process is frustrating and the medical professional support is absent. I was sent a surgeon referral and had to wait 6 weeks to find out anything other than my own searches. In the meantime I was told absolutely nothing.
I would like to see a place where all current ADH articles are linked and explained. Because we with ADH don’t have any other insight into our condition.

I am very sorry you aren't getting the information that you need. There are many of us with ADH. I had a annual mammogram when a radiologist notice very small calcifications. I was sent for additional mammogram, then a stereostatic biopsy, and was sent to a breast surgeon for a lumpectomy. ADH was the diagnosis and no cancer. However, I was sent to an oncologist and put on anastrozole for 5 yrs. I would suggest that you go to a breast cancer surgeon and get a second opinion. I agree that they don't tell you much about ADH. Hopefully you will get some answers here on this forum. Best of luck.

Were you also suggested to do increased monitoring (e.g. MRIs and mammo every 6 mos)?

Yes, that’s part of the plan.

Elliejk,
My breast surgeon had me have a mammogram 6 months after the lumpectomy and I have my annual mammogram in 2 months. I have not had an MRI. I quess I will be given additional instructions after my annual mammogram.