Mom with "abormal cells" and high risk.

Kimmer1975 · November 2012

Hi all, I posted in the "testing" are but was suggested I come to this area, because perhaps someone here could give me some better insight. Thank you in advance! xo

I was here about a year ago, with my own breast issues. Fortunately, my results were positive ones and I have had no issues since the biopsy. When I was here last, I was discussing my Mom and how I was hounding her to go get a mammogram done. She finally did. At the time (she did not know this) they found some microcalcifications. After finding them, they sent her for a U.S. Afterwards, they told her to return for another Mammo in a years time. So she just had another Mammogram back in October. They seen more microcalcifications in the same cluster along with some changes. No lump or growth though. So they did a stereotactic biopsy on the areas where the microcalcifications are. The results came back that the cells were abnormal and this puts her at risk of breastcancer. (Her words, she didn't really understand). So now she goes to see a Surgeon on Thursday because they said they need to remove the area with the abnormal cells and they will then be testing that as well. I am unfamilair with this sort of thing. My issue was a actual lump where as hers are cells? Which I have almost zero knowledge on. I know sometimes calcifications can be a indicator of DCIS but what is this other thing they are talking about?? Has anyone else had this experience? Thanks for any help you can give me. I know you can't diagnose her obviously, but I am pretty certain some of you probably had this same experience and know what the doctor meant by the "cells" etc. There is a family history of B.C. Her sister was diagnosed with stage IV and sadly, has since passed. So any info would be much appreciated!

Moderators · November 2012

Hi Kimmer,

You may find some helpful information on this topic on the main Breastcancer.org site's page on Certain Breast Changes as a Risk Factor for Breast Cancer -- there's good info on cell changes and what they mean in terms of risk.

We hope this helps!

--The Mods

Kimmer1975 · November 2012

Thank You! I will go look now!

Beesie · November 2012

Kimmer, your mother's situation is actually very familiar to me, and to many others here. DCIS usually does not present in the form of a lump and most of us who've been diagnosed with DCIS, or sometimes with early stage invasive cancer, started off the process when calcifications were discovered on our mammograms.

DCIS is a pre-invasive cancer. What that means is that the cancer cells are confined to the milk ducts. As the cells multiply, as cancer cells are prone to do, rather than form a lump (which could be difficult since the cells are confined to the tight space of the milk duct), the cancer cells instead tend to spread out within the ducts. Calcifications are a by-product of the cancer cells and it's the calcs that show up on a mammogram. Calcifications are actually very common - about 50% of women get them at some point in their lives - and most often, the calcs were caused by something completely harmless. There are lots of reasons why calcs can form and most aren't serious at all. But it's when calcs appear on a mammogram in a pattern that seems to mirror the pattern of the ducts of the breast, i.e. in a cluster or a linear formation, that those calcs are considered suspicious.

Suspicious calcs need to be biopsied because they might be a sign that there is cancer present in the ducts. But 80% of biopsies on suspicious calcs turn out to not be breast cancer. Most are completely benign but a portion of those that are not cancer might instead show some type of atypia, usually either ADH (atypical ductal hyperplasia) or ALH (atypical lobular hyperplasia). These conditions are a pre-cancerous stage of abnormal cell development. Most women with ADH and ALH never develop breast cancer but about 20% - 30% do. And since all cancer cells don't evolve at the same pace, a finding of ADH or ALH from a needle biopsy sample could indicate that there might be something more serious, either DCIS or early stage invasive cancer, also lurking. This is why it's usually recommended that an excisional biopsy (also called a surgical biopsy) be done to confirm the diagnosis and to ensure that there is nothing there that's more serious than just the atypical cells.

Approx. 20% of excisional biopsies after a finding of atypical cells in the needle biopsy do come back with a more serious finding. I fell into that 20%. My needle biopsy showed ADH. My excisional biopsy showed more ADH, plus DCIS plus a microinvasion (the tiniest possible amount) of IDC (invasive cancer). Since this is a breast cancer discussion board, you'll find lots of us who fell into that 20%. But 80% of these types of excisional biopsies find nothing more than the original ADH or ALH. Hopefully that will be the case with your mother.

If that is the finding, then she will be considered 'high risk'. Particularly with the experience of her sister, it will be worth talking to her doctor to ensure that she is in a high risk monitoring program, and to discuss whether any preventative treatments, such as Tamoxifen, might be advisable.

Hope that helps!

Kimmer1975 · November 2012

Wow Beesie, that really was SO helpful!!! Thank so much for taking the time to reply to my post. I am going to continue to be cautiously optomistic that it is nothing too serious. Hopefully once she has the excisional biopsy, we will be able to breath a sigh of relief! I put myself through far too much worry last year with my lump so I told myself I will not do that this time with my Moms issue. I did learn that the vast majority of these issues are benign. It's just useful to get some knowledge so that nothing catches us off guard. I am optomistic but also a realist. So I know the odds are favorable for a good outcome, but just in case, I'd like to be able to help my Mom a bit with some proper information. She really is confused by this whole ordeal. So I will share some of what you've told me and help ease her mind.

Thanks so very much! xo

Kimmer1975 · November 2012

Mom is back from the Surgeon. He explained a bit more to her about the issues at hand. He did say they found ADH cells and what they believe is DCIS in the duct that attaches to her nipple?? (Not sure what that is?). He told her, it's confined within the duct in her breast and that it's not invasive but that he cannot confirm diagnosis or treatment, until the lumpectomy is sent to pathology. He also showed her the area. She has a sinus infection right now and he told her that he is scheduling her for the 19th of December for the lumpectomy and that she is not to worry because waiting is not going to make a difference. He told her if this was outside the walls of the ducts, it would be more more "emergent" to get to it now, but that she can wait to see her doc and clear up the sinus infection. So is it normal to have both ADH and DCIS? She is relieved by the words "non invasive" and "non emergent" so I am happy for her about that!!!!! She really liked the doctor too!!

Beesie · November 2012

Kimmer, yes, it's very normal to have both ADH and DCIS together. And it's normal to have DCIS and IDC together too. Cell progression from normal to invasive cancer often follows this path:

Normal --> Hyperplasia --> Atypical Hyperplasia --> DCIS --> IDC

..........No increased risk... High risk (~25% BC risk)... Pre-invasive... Invasive cancer

Here is a graphic from BC.org that shows cell progression from normal to IDC:

Range of Ductal Carcinoma in situ

http://www.breastcancer.org/pictures/types/dcis/dcis_range

All cells that start this progression don't evolve at the same pace so it's normal to have a mass that includes more than one type of abnormality, i.e. ADH and DCIS or DCIS and IDC. I had all three together. And often cells that move to one stage don't ever progress any further. That's why there is no increase in breast cancer risk with hyperplasia and why only about 25% of cases of ADH ever turn into DCIS or IDC.

I do find it odd that the surgeon has basically diagnosed your mother with DCIS based on a biopsy that showed ADH but no DCIS. He may believe, based on how the films look, that it is highly likely that the surgery will uncover the presence of DCIS but there is absolutely no way that he can know this for sure. Even under a microscope, it is sometimes difficult to distinguish DCIS from ADH - there is someone posting in the DCIS forum right now who's had two opinions on her pathology; one came back saying DCIS and the other came back saying ADH. So while I think it's good that your mother be prepared for a diagnosis of DCIS, I don't think your mother - or the surgeon - should be assuming that the diagnosis is DCIS. It could turn out to all be ADH. Or it could turn out that there is a small amount of IDC present. And that's why technically the surgery coming up really is an excisional biopsy. It's pretty much the same surgery as a lumpectomy but with no clear diagnosis yet, the objective of the surgery is to biopsy and analyse the tissue in order to make the diagnosis.

When surgeons tell patients in advance what the diagnosis will be, and then if the diagnosis isn't what the surgeon said, that can lead to a lot of concern on the part of the patient. If the diagnosis is better (ADH and not DCIS, in this case), it may lead to worries about whether anything might have been missed. If the diagnosis is worse (IDC, in this case), it might result in anger at having been misled. I do think that it's good for a surgeon to give an honest assessment, but the surgeon should be clear that it's just an opinion or an educated guess.

Kimmer1975 · November 2012

Hey Beesie,

Yah, he didn't diagnose her per say. He said it's what appears to be...followed by his reasonings based on her previous biopsy results and Mammogram and as well, he showed her on the screen what he was referring to and why he felt what he felt. He did say the same thing too, that until the lumpectomy is complete and it is sent to Pathology, he cannot say for certain but this is what he is expecting. He did make it clear to her, that upon completion of the lumpectomy, things could be different. She asked what treatments would be and he said he can't give her a correct answer until they do have confirmation from the Pathologist. It was alot of "looks like" and "I think's" Please keep in mind too, I wasn't there to hear him. lol He threw around a lot of big words my Mom doesn't understand. I actually came here and read your reply to her over the phone, from our previous conversation. That way she understands nothing is set in stone, on either side of the coin. I did question her and get her to repeat to me exactly what he said, because I was leary too. She was quite insistent he told her she had DCIS so I didn't argue. She was getting frustrated with me. I didn't see her biopsy results either, and the long and short of it is, that her Doctor emailed her Friday night of last week and didn't give her a chance to ask any questions. (Yes, he is in shit and she has since been switched to a new doctor as of today". All he did was send her a email, 7pm Friday night, saying that the pathologist was recommending a lumpectomy (which her radiologist told her family doc) and that she was required to call the hospital to book her lumpectomy, which would require O.R time due to the abnormalities in her biopsy. She was never given a chance to ask a single question and was left all weekend with no answers. So today was the first time she got to sit and have someone explain it all to her. She may even be confused too. Her biggest "replay" is that he kept saying, the Pathologist will know if we "got it all". So I think the words are playing on her. Your information is very helpful Beesie, so thank you for taking the time to reply. My mom is not very technically inclined. I am goign to try and help her figure out how to utilize this group though. That way she can come and get some support too. I know it helped me with my issue last year and I think it would be good for her too. I wished I had been able to go to the appointment too. I did ask her if they gave her any kind of Birad score though and she said no. I also know BIRAD can be wrong too! So maybe it's not a bad thing she didn't get one. She never did see her actual pathology report, so I am going to tell her to request it when she goes to the doc next. I learned from being here before, that it's good to get copies of those for yourself and for future reference.

Thanks SO much!!! xoxo

Mom with "abormal cells" and high risk.

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