Diagnosed with ADH and ALH and FEA

onvaca

Hi, I had a 2cm cyst removed and my surgeon decided to take a total of 7cm of dense tissue out. I still have 5cm of dense tissue left in the breast. The pathology came back as ALH. I decided to send my slides to another facility to have them reread. That came back as multifocal ALH, focal ADH, focal FEA and dense stomal fibrosis. I had since left that facility and went to another breast facility for another opinion. Nobody seemed to care that this new finding of ADH was there. THere approach is lets just wait and see every 6 months. My question is wouldn't I need another excisonal biopsy to make sure all the ADH was taken out? All I was told is go on tamoxifen and wait and see. I guess my fear is they were never looking for atypical cells just taking a cyst out. How do they know if they got everything and could it of been the tip of an iceberg. Nobody cares and they think I am being ridiculous because I don't have cancer. I just don't like not knowing whats in there and what was left behind. Anyone else with this problem?

Becky

Anonymous

Becky----the reason for an excisional biopsy is not to remove all the ADH/ALH, but just to make sure there is nothing more serious in there along with it. So since you have already been that route and they did not find any LCIS, DCIS, or invasive bc, you now need to just be vigilant with your regular breast exams and mammos. (another excisional biospy is not needed). Tamoxifen is certainly an option you might want to explore, especially if you have any family history of bc (especially in a primary relative such as mother, sister, or daughter, which would raise you from a moderate risk to a higher risk level overall). I was diagnosed with LCIS 10 years ago and my risk is further elevated by my mom's ILC history, so I do high risk surveillance and preventative meds (tamox 5 years, now evista), but my situation is very different (LCIS is a step further along the bc spectrum with double the risk level). I'm here to help if you have more questions.

Anne

MelissaDallas

The goal is to take a large sample in an excisional biopsy, not remove a mass with clean margins, so no, they don't go back in. Since nothing worse was found, you will just be followed closely as high risk. In reality, especially the lobular stuff tends to be diffusely through both breasts and there are probably other areas that don't show up on imaging, so a total mastectomy would probably be the only way to get rid of all that's going on. Since neither LCIS or DCIS was found that would be way more than indicated. The lobular stuff is actually considered higher risk than the ductal, but even LCIS is only about an additional 8% risk factor, so the hyperplasia is considerably lower than that.

MelissaDallas

i agree with Anne, and it appears we were posting at the same time.

onvaca

Thank you Anne for your words of wisdom. I have recently had a MRI that came back with stable regional non mass enhancement and bilateral nonspecific site enhancement. Stable sub centimeter right sub pectoral lymph node without a definite fatty hilum visualized of uncertain etiology. It's all so confusing. I'm sure things are stable but I feel as if I have so much going on with these breasts that its a disaster waiting to happen. I am generally a very positive person always seeing glass half full, but in this case I feel like a ticking time bomb. I can not take tamoxifen because of any side effects I will definitely have the reaction to it. Had to take a drug for reoccurring kidney stones that left me getting my gallbladder removed so I am really hesitant on any other type of drug. My other question is if you are diagnosed with these aytpias do they ever go away on there own?

Becky

Anonymous

I'm not familiar with all the terminology from your MRI report, but overall it sounds quite stable. I'm not sure if atypia ever "goes away on its' own", but realistically, I don't think so. Some people can have ADH/ALH/LCIS (and in some cases, even DCIS) for their lifetime and it never goes on to become invasive bc. Some day, hopefully soon, they will be able to predict with more accuracy which cases will progress and which cases will not, but for now they just don't know for sure. So in the meantime, those of us diagnosed with conditions that confer increased risk have to be extra vigilant with our screenings and careful with our lifestyle choices; and the decisions about preventative surgeries and preventative meds are so personal and individual. We are kinda left "in the grey area" with a lot of difficult decisions to make on our own. As far as the tamoxifen, you could try it and see how you tolerate it.

anne