Question on ADH

Twinmar

I have posted this in a couple of topic areas but have no response so am trying here.

I had a very small DCIS low grade tumor removed four years ago. Had 7 1/2 weeks of radiation. No side effects whatsoever. I barely turned pink and had no problems with fatigue etc. Last month during an annual mammo I needed to return for more pictures and a stereotactic biopsy due to microcalcifications. My pathology report says atypia due to radiation - no malignancy identified. However, I needed to see a breast surgeon due to the atypia cells and now am scheduled for an excisional biopsy at the hospital on June 3. The breast surgeon I met with said there could be something else lurking along with the atypia (ADH) cells. In fact he said this happens close to 20% of the time. ADH was not mentioned at all on the pathology report - just that there were atypia cells due to radiation - the cause of the calcifications were due to trauma from radiation, lumpectomy and fat necrosis. When I had my initial radiology visit four years ago all that was mentioned for side effects were burning skin, fatigue and that was about it. No one discussed any long term problems. My sister-in-law who had almost the exact same diagnosis but almost 20 years ago, ended up with a lung cancer as a direct result of the radiation she endured. She is fine after having a simple lung operation. I'm wondering if this has happened to anyone else. If something is found after the excisional biopsy I will need a mastectomy since I cannot have any more radiation. Although I will be happy with an all clear - only ADH cells fully removed - I wonder if I will be going through this every time I have a mammogram and will need many more biopsies. Has anyone else had ADH after a simple lumpectomy and radiation for low grade DCIS?

Update: in the meantime I have contracted shingles This is supposed to be a happy time for me - my son is getting married in a month and I have two vacations scheduled but I am miserable with the waiting and wondering. I have only confided in my husband and daughters I don't want to worry my son.

Thank you.

farmerlucy

Pathologically ADH and DCIS are very close. Often times pathologists have trouble determining which is which. That happened to me in my excisional biopsy. One pathologist called it ADH/ALH another DCIS/LCIS. The tie breaker second opinion called it ADH/ALH. I have no knowledge re: radiation but I would find one doctor I really trust and have him explain things.

I_Spy

I only have experience with ADH, like Farmerlucy, not "ADH caused by radiation" -- I've never even heard of that as a thing! How could the pathologist tell what *caused* the ADH? Here is my suggestion: I saw an article or interview with a breast cancer pathologist, who said he was under-utlized when it came to talking to patients; in other words, pathologists are WILLING to talk to patients, but no one ever calls them. The pathologist's name should be on the pathology report. Google his/her name along with the name of the facility where it was done. Often there will be a staff directory, or if not just call the main number and ask for him/her. Get him/her on the phone, and say "Hi you examined my specimen and I have a couple of quick questions" (especially if you have to leave a message). When you get them on the phone, then say "What made you think it was caused by radiation? Does it look differently under a microscope? Why am I being sent for an excisional if it is just caused by radiation? Or is atypia the same no matter what caused it, and there could be DCIS lurking nearby and therefore we need a bigger sample?" Write down your questions ahead of time so you are succinct. Be professional and intelligent (like all bco users) and you will get your answers!

I call radiologists and "back room" doctors all the time. They actually like it. Try it and then let us know!

ps I had ADH on sterotactic biopsy, and when they did the Excisional biopsy they upgraded me to DCIS. It has to do, literally, with the number of atypical cells in a given area. Like 5 is ADH and 6 is DCIS (I'm making up the numbers, but you get the idea). So if it doesn't matter what caused it, then yes you need to see if there is more nearby. No matter what the answer is, you will get through this just like you got through it before; so sorry it is happening at a time when you are supposed to be having fun (boo shingles) -- my favorite saying is: "Man plans and God laughs," also: you play the cards you're dealt. Ok done with platitudes; this sucks, and let us know what happens if you call the pathologist!

Italychick

I second calling the pathologist. I called mine, and he was very helpful

Ddw79

I too was never told what caused my ADH. I too have had shingles. I'm sorry about all this . You are right it should be a happy time. I hope you get some good news before the wedding

farmerlucy

Yes, Yes isby! I called my pathologist just this year (four years later). The chief of staff called me back, pulled my slides and answered all my questions. They DO like to talk to patients!

Twinmar

Thanks to everyone for your suggestions. I'd never considered speaking with the pathologist. What a good idea. Will let you know.

Twinmar

Just a follow up. I did speak with a pathologist who said, while this doesn't happen in a lot of cases, yes radiation can induce changes in the treated area (usually within 2-5 years after) and show atypical cells - also just the lumpectomy itself can cause all sorts of strange things to happen with scar tissue, debris etc. He said yes you should still get the cells checked out - not that they are cancerous but can be hiding something else nearby so I had an excisional biopsy done in the hospital last Friday. My surgeon called last night to say they found nothing else in that site and to just follow up with my oncologist at my appointed time in October. For my procedure, I spent from 7am-1pm at the hospital needing to visit the breast center first to have a 'radiation ball' injected (sort of like a wire placement). Then the surgeon used a gieger counter during surgery to see exactly where the area was located. He went in at my old lumpectomy scar which was right at the top of my areola. I had a steri strip for a bandage and that was all. I needed no pain medication (not even a tylenol) to recover although the anesthesia (it was MAC - so not fully under like general) made me nauseous the first day. The pathologist said sometimes atypical cells disappear on their own. I know that both of my daughters have had atypical cells during pap tests and the next time they went in those cells were gone.

I_Spy

Thanks Twinmar for giving us the update! This will help others who find this thread when looking for answers to their issues as well. How interesting that they didn't just use a wire, and used a radiation ball instead... do you know why?

Twinmar

Hi Ipsy - the breast surgeon told me the 'ball - or seed' marks the area better than the wire (which I had for my initial lumpectomy four years ago). To tell the truth, it may be easier for them but it wasn't for me. I had no problems with the wire placement but having the seed inserted with a needle took a much longer time and was more painful than the wire insertion. The BS said the seed lights up and so they know exactly where the spot is. Then they remove the seed during the excision since it is radioactive. I know I have at least four titanium clips in me yet. I am waiting for them to post my pathology report so I get some exact answers to why I had this excisional biopsy in the first place since the atypia cells were 'radiation induced'. I also saw a report that my GP showed me online when visiting for pre-op that the radiologist suggested a consult with a BS. When the nurse navigator called me after the Stereotactic biopsy she had said it wasn't the worse case scenerio but I would need to have an excisional biopsy due to atypia cells and immediately transferred me to the surgeon's office to set up the consult. Now I realize it was more of a general recommendation/suggestion by the radiologist but for me it seemed like an order and being upset at the time, I went ahead with the consult and the excision instead of waiting to see if things would change in six months. I guess I probably would've have done the surgery anyway but I wish it would have been explained a bit better.

leaf

I am waiting for them to post my pathology report so I get some exact answers to why I had this excisional biopsy in the first place since the atypia cells were 'radiation induced'

I am shocked any rational medical person could say this. How could they not use qualifiers like 'maybe' or even 'probably'. How in the world could they know atypical cells were radiation induced? Aren't there some women out there who have atypical cells that haven't had radiation? Didn't women get breast cancer long before Xrays and radiation were discovered? Even if you had huge radiation exposure, how do they know the cause of the atypia? Even for Hiroshima victims, obviously, some people who were not exposed to radiation get the same cancers that Hiroshima victims did/do, though of course the Hiroshima victims get a much higher rate of some cancers.

614

Dear Ispy: Thanks for the information regarding speaking with the pathologist.  That is a great idea.  I never thought about it.

Dear Twinmar: I am glad that you are ok.  Enjoy your son's wedding and your vacations. 

FYI:  There are many different kinds of atypias.  I have no idea how a pathologist would be able to determine what caused an atypia.  All atypias are considered to be benign however, atypias increase one's chances of getting breast cancer.  The reason that surgery is recommended is because many times DCIS is found along with ADH (as Ispy said).  No one wants to take unnecessary risks so surgery is recommended. 

I had the radioactive seed placement rather than the wire localizer when I had my double lumpectomy.  The wire procedure sounds barbaric to me since the patient must travel to the OR with a wire sticking out of her breast.  I did not have this procedure so I cannot comment first hand.  For me, the radioactive seed placement was easy.  I had 3 previous excisional biopsies and nothing was used.  Knowing what I know now, I wonder how my surgeons were able to perform those surgeries.  However, they were many years ago.  I have also had numerous core biopsies done so I have many clips in my breasts.

I have been diagnosed with Flat Epithelial Atypia (FEA), PASH, and numerous Atypical Lobular Hyperplasia's (ALH).  One spot of ALH was found 6 months after my bc tx (but was biopsied 1 year later due to problems doing a biopsy - long story )(double lx plus radiation for PILC, bifocal PLCIS, and Invasive Tubular Carcinoma).  Both my RO and my MO were not worried about the ALH because I am taking Arimidex/Anastrazole and both of my doctors feel that the Anastrazole will work to prevent the ALH from becoming Invasive Lobular Carcinoma.  My MO said, "there is no reason to have the ALH removed.  If you had surgery, the only thing that would happen is that most likely, more ALH would be detected." 

It is so interesting because I found out about the ALH on Monday and my cousin found out that she had ALH on Wednesday (same week).  Her ALH was detected in her pathology from DCIS surgery.  Her doctor recommended a mastectomy.  She ended up having a second lumpectomy rather than a mastectomy, after her DCIS surgery to remove the ALH.  After healing, she did radiation and she is taking tamoxifen.  In her case, since she had not started on tamoxifen yet, the surgery was absolutely necessary.

Thank you for starting this thread and good luck.

Twinmar

Hi Leaf - I didn't understand how they could justify the atypia was from radiation but that's what it says - " Calcifications were identified - which are associated with foreign body giant cell reaction. Findings consistent with changes to lumpectomy site. Random epithelial atypia consistent with post radiation changes - interpreted as radiation associated. No evidence of malignancy." I knew the atypia cells were not malignant but the BS kept repeating that in almost 20% of the cases where these cells lodge there are even nastier cells lurking nearby (like DCIS or invasive cancer). Thus my excisional biopsy. Nowhere on my path report does it say ADH cells - that information was given at my consult with the BS. I did see that in my initial pathology report after my lumpectomy in 2012, there were ADH cells very close to a margin. I assumed they weren't mentioned to me (verbally) because I was due to have 7 1/2 weeks of radiation and they would be taken care of at that time. Also, as the pathologist stated sometimes these cells disappear on their own.

614: Thanks for the best wishes for the wedding/vacations. I feel like I can breathe again (for awhile at least).

614

Dear Twinmar:  I am so glad that you are ok.  Your pathology report is very interesting.  I never knew that atypias could result from radiation.  That seems incomprehensible to me.  Enjoy the wedding.

I_Spy

Twinmar something you said.... not sure if I understood properly, but just in case: ADH and Atypia are used interchangeably by doctors. "Atypia" is a nickname (hah) they use for Atypical Ductal Hyperplasia. When I was first diagnosed with it, I had to say to my bs: "Can I say ADH and you'll know what I'm talking about so I don't have to keep saying Atypical Ductal Hyperplasia?" and she said yes; it was later I realized they just say "Atypia" or "Atypical cells" to avoid the mouthful.

So have you gotten the path report back on the Excisional ...?

Twinmar

Ipsy .. Yes I realized atypical in Breast cells for memeant ADH after I spoke with the surgeon not from the initial path report. I think I mentioned both daughters in the past had atypical cells in their PAP tests which then disappeared at the next follow up so I had heard of atypical cells before. I just checked my online health chart and nothing has been posted yet. If there is anything significant to share I will comment on it. When the BS called he said all ADH cells had been removed.

I_Spy

Hmmmmmmm. I'm an investigator so I pounce on things that don't make sense; it is a blessing and a curse (usually a curse for others haha). So here is what doesn't make sense: If we don't have the path report back, how does the BS know that all of the ADH cells were removed? ADH is microscopic -- they aren't visible to the naked eye. So the bs takes a chunk of tissue out, his/her best bet of the area of concern plus a margin around it, hoping for a "clean margin". When the pathologist looks at the tissue sample under a microscope, he/she sees the ADH (or sometimes not; the stereotactic biopsy sometimes gets ALL the ADH with just that core needle and boom you're done), and then the pathologist looks at the margin of the chunk of tissue. Everyone hopes that there are no atypical cells or cancerous cells at the margin of the chunk of tissue. If there are atypical cells or cancer cells at the margin, that is called "not clean margins" and the bs has to go back and take another chunk to try to get clean margins; otherwise, there can be more ADH or cancer lurking just beyond that original chunk of tissue.

That is how it is done; however, I may have missed part of your story and so it doesn't apply. It's just that we don't have the path report, so there is just no way for the bs to know that he "got it all".

I just re-read my post and I am considering deleting it. I don't want to freak you out; however, for me, knowledge is power and I HATE being blindsided by news from doctors. I HATE IT. When I go into a doctor's appointment for results or a treatment plan I want to know everything the doctor might possibly say, so that I am not left with my mouth hanging open while they've moved on to asking me how I want to proceed. So I don't want you to get the path report and suddenly there is more ADH and no clean margins and you need another surgery and you weren't prepared for that. "Prepare for the worst and hope for the best," my grandmother used to say, and I live by those words.

Twinmar

Don't worry about freaking me out, Ipsy. I've been on this site long enough to know anything can happen. I believe what the BS said when he called on Monday was they got all the ADH cells in the stereotactic biopsy. He said no 'bad' cells showed up on the excisional biopsy-just normal tissue and that he took quite a bit around the spot. I wish they would post something. I am used to having all my medical tests, issues, appointments show up right away. I believe my oncologist releases the information. For my previous pathology report, I sent him a note to remind him I needed to see the findings in order to have an enlightened conversation with the surgeon and he released it within the hour. He's my third oncologist and definitely not the fastest when it comes to results.

I_Spy

Ok. Makes more sense. And also maybe the bs saw the path report and you just haven't been allowed access to it yet? (don't you love that? like we have to be spoon fed the information about our own bodies). Ok good. You're all over it.

614

Dear Ispy:  I am just like you.  I need to know all of the information and every detail involved.  Your post makes total sense to me.  I must know all aspects of what I am dealing with.

Dear Twinmar:  Congratulations.  It sounds like you have great news.  I hope that you will get the pathology report soon.