Diagnosed with Atypical Hyperplasia

What kind of hyperplasia do you have? Atypical ductal hyperplasia? Atypical lobular hyperplasia? Some other kind? What kind of biopsy did you have? Depending upon what kind of hyperplasia you have, it is not necessarily possible to remove all of those cells, short of a bilateral mastectomy, and even then it is impossible to remove every trace of breast tissue.

The oncologist you are being sent to for antihormonals is a medical oncologist and they typically do not do surgery so probably no point in discussing wanting surgery there. I think you need to go back to a breast surgeon to discuss this further

Hi bellasmomma,

Apologies to all for my long post, but this is my first time here so I feel the need to explain a little more. I'm newly diagnosed with ADH, and a bit surprised that your surgeon didn't want to do surgery since people at the hospital I had testing at insisted on it--I literally ran out of the place, even though everything I've read on it since indicates it. I share your aversion to Tamoxifen and such after everything I've read in that area as well. I had a hysterectomy at age 25, and was on massive hormones until 5 years ago, when I developed the first of 2 blood clots within a year, and was pulled off them. I have no wish to go on any hormone suppression drug and re-experience it all over again, plus the horrible side effects those drugs have. Some of them are even more dangerous than blood thinners. But the bigger issue in my case is that I likely won't be a candidate for them anyway due my history of blood clots. However, I have known other women who were on Tamoxifen without major issues, but I think it comes down to what a person can tolerate as well as being cognizant of the risks over a 5 year period.

I only just received copies today of my diagnostic tests, biopsy and pathology done 3 weeks ago since the hospital who performed all of these things never allowed me to look at my studies, gave me any documentation, nor did a doctor ever speak to speak to me after the diagnosis. All I was told over the phone by a technician was I have ADH on August 8, and see the surgeon they set up--which I canceled. After reading all the results on what was done, I'm struck how simple and non-technical nearly all of them are--which rather surprises me compared to many other women's reports I've seen posted on this forum. And I must say I am a quite disappointed in the lack of descriptiveness when it came to the pathology report--zero description of cells, anomalies, histology. I certainly expected better due diligence all-round from a big regional hospital. Needless to say, after fleeing that hospital, I did some serious research on the subject of ADH as well as the best breast hospitals I could find near me (I'm a retired academic librarian). I contacted a major renowned teaching hospital two hours away from me to get an 2nd opinion. They offer a lot more options. They immediately requested all the pathology slides and diagnostic tests from the other hospital for review--which I am ecstatic about. Have a preliminary short meeting with chief breast cancer surgeon next week, so I hope they will take me on since my medical situation is a bit complicated due to the blood thing, and feel I need a hematologist on board to test and advise me on medications.

However, to all the rest of you ladies out there who might know, please explain these two parts on my pathology report which are unclear to me:

Clinical information: right breast calcifications suspect FA change R/O DCIS ( I figured R/O means rule out, but not sure what FA means--perhaps focal atypia? I know the number of foci is the determining factor in ruling whether it's ADH or DCIS since they are so closely related)

Microscopic diagnosis: focal changes compatible with atypical duct hyperplasia with associated calcification (step sections performed block A)

Radiology determination indicated excision, though it appears to me from the 5 or 6 pieces they only took out during the biopsy since the calcifications were so small, it may have cleared out the entire area--which sounds much like bellamomma's case. Has anyone heard of this before? I was somewhat amazed they labeled it a lesion since I was not told that. But assumed they did it to justify that expensive stereotactic biopsy because the calcifications were pleomorphic, plus I'm the exact median age for cancer--61.

Best wishes to you bellasmomma---and to all the ladies who participate in this great forum. It's been a tremendous source of knowledge and comfort for me the last couple of weeks just reading the posts and knowing I'm not alone in this condition.

thanks awb----I think you're right. Sounds more like focal or foci atypia.

Hi momoschki,

That's terrific that got it all. I did read a couple of papers that indicated in small areas, the size/gauge of the vacuum needle used often cleans it out, so further excision isn't necessary. Those darn calcifications are much more serious than they look, aren't they? But I also know from all pathology studies and dozens of medical papers I read, that I fully expect to hear excision will be required just to be sure nothing is left behind. I had a hard time accepting another surgery, but it's not a choice with this disease. It's a lot more serious than it appears. From everything I'm come across, the rate of what could still be in the area is anywhere from 14-36%--and sometimes includes more ADH, LCIS, DCIS, invasive, or a mix. The first 5 years after diagnosis are the most dangerous from what I've read--the risk of invasive being 75% by then. So I know this condition is nothing to play around with. It also carries a 3-5X lifetime risk in both breasts.

And I totally agree momoschki--the more opinions the better. I feel a lot better since I trusted my instincts made the decision to go elsewhere and seek out a teaching facility with more options and expertise--even if it does mean a longer drive and hotel fees. I asked to see the Chair of Surgical Oncology, and look forward to what he recommends after reviewing my pathology slides. They use a team approach. Several physicians meet to review all cases, make recommendations, which is another reason I'm decided to try them. They even took me without a physician referral which is quite unusual. I wrote them on their website and they called me the next day. Then they contacted the other hospital and faxed authorization for all my records. They really work fast--that impressed me a lot, too.

I'm so glad to see this thread as I've had different reactions from BS and oncologist and Johns Hopkins "Ask an Expert". My ADH at excision was focal, 1 mm, so very small. Breast surgeon and Johns Hopkins both said hormone therapy is probably overkill as I don't have a family history of breast cancer and few other risk factors besides age (62) and having taken HRT. My oncologist said she feels I would have major SE's from tamoxifen or AI due to my bad menopause experiences, particularly in cognition. Recommended we wait a year for new genomic advances to see if that can pinpoint more accurately the chances of my particular ADH becoming cancer, since the accepted figure is that only 25% of ADH diagnoses actually develop cancer. My understanding is that is the latest area of investigation (and my doctor is also a researcher) has already determined at least three subsets of ADH, and are trying to work out which are relatively benign and which are truly biomarkers for cancer.

I really don't want to take the drugs so I'm OK with that, but hadn't seen the figure that it's more likely to develop within 5 years? My Gail score was 3.7% within 5 years (I think the regular is 1.7%) and 16% within 20 years (vs. 8.1% for average). So even using the drugs only cut the relative risk by a few percentage points.

Sorry, long message, but it's so frustrating to have so little real information on ADH. And sometimes I feel guilty that I'm so worried about something that's not really cancer when so many are dealing with the real thing.

Casey, I'm very interested in the 3 subsets of ADH you mention as stratifying risk. Since you mention that your doctor has been involved in this research, I'm wondering if you can provide a citation? I'd love to read more about this

Momoschki: there is nothing published on the 3 subsets to my knowledge. I go to a university medical center where my oncologist's offices are; she told me a researcher there had been studying ADH and these were his conclusions (i also did sign a release that they could use any of my tissue from the excisional biopsy for study so I know they've been studying it.) Not sure how they'll use this; if they're waiting to see which women develop disease it could take years -- you know how these studies follow developments 5 to 10 years out before they reach conclusions. Because of that I said I thought any genomic testing possibilities being accepted as standard practice would be too late for me. She disagreed, saying she said she thought we'd see something much sooner. I'll be honest -- it got my hopes up but I've learned not to trust in too-optimistic outlooks.

It depends on the area of concern and if it's single or multi-focal. I feel for you as I searched everywhere prior to my excisional biopsy trying to find the same thing and there's no information out there as everyone is different. Your mileage may vary on this, but I heard the average - average, mind you - could be from a large olive-size (I think that's about 3 cm) to 4 cm, which is what the radiologist told me. I expressed my concerns over this to my surgeon as i have small breasts, one a definite 34C cup and the other sort of a C- cup size. She really did listen to me and wound up taking 2 cm in the biopsy but insured there was enough margin around it to be sure all the affected area was covered. It did put me down a cup size, just because that breast was smaller than the opposite to begin with. Will it "fill in" the way they said it would? Not so far at 7 months out; I use a silicone insert if I'm wearing something tight that collapses the bra cup, otherwise I just live with it. But we'll see. This is probably the first surgery for a lot of us so I think it bothers us to not know what to expect. Good luck -- find a surgeon you trust and talk, talk, talk.

Casey, yes, the amount removed by the lumpectomy depends on the size of the lesion. In my case, I'd say it was about a marble sized area removed. Over 5+ years the indentation isn't visible but if I feel around, I can still find a kind of "empty" spot

Casey4---another great tip I'm jotting down to look into beforehand. My breasts are primarily fatty so dropping in more fat from someplace else off my body is totally OK with me! But I'll definitely check that with my insurance before asking the BS about it.

Another thing I'm wondering about is if something more sinister happens to show up during lumpectomy, they'll likely prescribe some sort of radiation in my case since I'm not a candidate for the standard anti-hormone treatments. Downsides to standard radiation are a lot of driving since it involves 5 days over 6-7 weeks, plus the burns and breast shrinkage of the breast from this method. Mammosite--a form where they insert a balloon in the tumor/lesion site after surgery, and deliver radiation pellets over 5 days, then take it out sounds more appealing. It involves women over 45 with tumors/lesions 2-3 cm. Plus, since they only treat part of the breast it doesn't cause as many of the side effects as standard radiation. Seems to have caught on as more doctors are recommending it over standard radiation. The other form called brachytherapy I'm still reading on, but sounds more like a one shot deal where several pellets are inserted after surgery, sealed, and stay in for the long term. Has a lot less follow-up visits, and but seems to be used for more advanced cancers.

However, I'm wondering if insurance does happen to cover filling in the lumpectomy site, if that will take treatment such as Mammosite off the table since the tumor/lesion site will be filled with a balloon to administer radiation. So that leads to another question to ask the BS--if filling in the hole/site could be done after radiation.

Has anyone else on this thread had any experience with Mammosite therapy? Or known someone who has?