Borderline DCIS-ADH?

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momoschki
momoschki Member Posts: 682
edited June 2014 in High Risk for Breast Cancer

So, just had occasion to sit down and really go through a compilation of my path reports since this big mess started a couple of months ago.  In inital stereotactic biopsy showed DCIS, then, when my breast surgeon (different hospital) had the slides reanalyzed, she told me they showed ADH.  Had an excisional biopsy for that-- everything removed was clean and she pronounced me "treated".  Briefly discussed the Tamox question, but I have some strong reservations since I had a fairly severe endometrial thickening almost a year ago (now controlled) and was hesitant to risk the reemergence of that condition and what it could lead to.  She seemed totally unconcerned with  the prospect of my not taking it and suggested waiting until I am fully menopausal to then try Evista (I am almost 54.)

I realized today, in looking over all the post-lumpectomy reports, how confused I was when they stated the dx was "borderline DCIS-ADH".  Do (did) I have cancer or not?  And does it matter?  I am aware of the continuum of these two diagnoses and how arbitrary diagnosing one over the other can be, but at one point, my BS even said to me (I was upset, granted...), "You do NOT have breast cancer".  So what's the deal with the "borderline" classification?

 Anyone else have a similar borderline assignment and how did you and your doctors deal with it?  It seems I have landed in some kind of grey zone.  Interestingly, when we initially thought we were dealing strictly with DCIS, my BS and I were serioulsy discussing PBMX, but after this supposed downgrade, she told me she would not do the surgery and that it was far too dire a response to my dx. 

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  • CandDsMom
    CandDsMom Member Posts: 387
    edited April 2011

    If I were in this situation I would send my path slides to Dr. Michael Lagios for another 2nd opinion (he is one of the "fathers" of the Van Nuys Prognostic Index and a bigwig path guy in DCIS. Or to another NCI cancer center. I have definitely heard of this grey area type of situation, but you'd sure hate things to be leaning for towards the DCIS side and under-treat.  Just my 2 cents though. If you search on the DCIS boards there is an article from the NY times about just this situation I think from sometime in July 2010.  Best wishes...

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  • SJW1
    SJW1 Member Posts: 244
    edited April 2011

    Momoschki,

    In 2007 I was diagnosed with DCIS and had a lumpectomy. However, they said I didn't get clean margins. They were recommending a mastectomy.



    However, I had Dr. Lagios review my post surgical pathology. The worst HE could find was LCIS and ADH. Because of him, I was spared the mastectomy. Dr. Lagios also estimated my risk of recurrence without radiation at only 4 percent. With such a low risk, I opted out of radiation and also chose not to have tamoxifen, after Dr. Lagios said tamoxifen would only reduce my risk of recurrence by at best 2 percent.



    Technically you had cancer if you had DCIS, even though it is non-invasive cancer. If you only had ADH, you did not have cancer. However, because even DCIS is non-invasive, many doctors classify it as a pre-cancer. That is why it is so confusing.



    Pathologists often disagree as well. Even though it is very subjective, it makes a difference, since all treatment recommendations are based on the pathology report. That is why a 2nd pathology opinion from an expert pathologist like Dr. Lagios is an excellent idea. Ideally this would occur before treatment decisions are made.



    The natural history of DCIS is really not understood. So treatment, especially whether to radiate or not, is controversial. One way to decide is to use the Van Nuys Prognostic Index. Many doctors think DCIS is over treated. Patients with low grade, small, widely excised margins may be able to safely omit radiation.



    If you are not at ease with being in this gray area, you might want to consider talking to Dr. Lagios. He has a consulting service that anyone can use.



    If you need more info or have any questions please feel free to PM me or check out the info I have on my website about Dr. Lagios at:



    https://sites.google.com/site/dciswithoutrads/home



    Hope this helps.



    Best,

    Sandie



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  • dansbetta
    dansbetta Member Posts: 18
    edited April 2011

    Hi momoschki. Your feelings are understood. But the doctor is a person with experience. Such patients like you and me, a doctor scores. I would recommend you follow the advice of a doctor. Have cancer or not, if a doctor prescribes TAMO, schitet means that there is a likelihood of cancer you have. Thank you for a doctor is at risk. Naturally, the doctor knows all the side effects of TAMO. And certainly learned all of the features of your body. Do not worry, stress is our enemy. From the stress of all diseases. Everything will be fine.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2011

    Just to give a brief update on this dilemma, when I brought up this diagnostic confusion at an appt. with a new oncologist the other day, he suggested yet a THIRD  analysis of my slides (the first 2 were at other major NYC hospitals) to hopefully clear up the issue.  In the meantime, this guy has me on a regimen of supplements like I have never seen before and gave me a pile of literature to read about them.  Anyone here been to see Mitchell Gaynor at Weill Cornell?  I'd be curious about other people's opinions.

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  • nell0314
    nell0314 Member Posts: 23
    edited April 2011

    Hi momoschki,

    Per my stereotactic biopsy - I too was dx with ADH bordering on DCIS. I am waiting to be scheduled for lumpectomy. BS tells me that once area is removed, will have to wait for that to be biopsied to find out if definitely DCIS. I am so confused myself about this whole thing. What type of supplements do they have you on? Only spoke with my onc on telephone. He's waiting for surgery biopsy results to proceed.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2011

    Nell,

    In my case, the lumpectomy yielded no additional info at all, since the tissue removed was completely normal.  The explanation I was given for this was that the lesion was so tiny that the stereotactic biopsy removed it all.  This is why the original slides are to be analyzed a third time.  My oncologist said this is not at all uncommon.  As to the supplements, they are much too numerous to list, but you can get an idea if you check out the Dr's website (Mitchell Gaynor) at gaynoroncology.com. 

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  • williamswendy
    williamswendy Member Posts: 1
    edited April 2011

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  • vmudrow
    vmudrow Member Posts: 846
    edited April 2011

    I was diagnoised with only ALH - but strong family history and doctor agreed that I could have PBMX if I chose - I did - otherwise it would have been Tamoxifen, MRIs, more biopsies, worry etc.  Not the right decision for everyone - but I have been pleased with the whole process.  Good luck - hugs, Valerie

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  • momoschki
    momoschki Member Posts: 682
    edited April 2011

    Valerie,

    I have NO family history, which I have to think, in my doctor's opinion, was the justification for no PBMX.  We'll have to see how it goes as time passes...  I will be curious to see what this THIRD (!) analysis of my original biopsy slides yields, although both the breast surgeon and the oncologist have told me that whether it comes out ADH or DCIS, I am "treated", so I am not really sure how much of a difference it makes.  Not a candidate for radiation either. 

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  • momoschki
    momoschki Member Posts: 682
    edited May 2011
    Just to follow up:  results from third path analysis of initial stereotactic biopsy in from Cornell.  For those of you who have been following this thread, you may recall we had one vote to DCIS (Mt Sinai), one vote for ADH (NYU) , and now yet another vote for pure ADH from Cornell.  Happy at this point to accept that as the best 2 out of 3.  What a headache!  Btw, when I asked the Cornell onco if we could ever learn the size of the initial lesion, a piece of info ordinarily found on path reports, he reply was that it was "exquisitely small".  Not sure if that is a scientfic term, but liked it anyway.Laughing
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  • vmudrow
    vmudrow Member Posts: 846
    edited May 2011

    momoschki - GOOD NEWS!!  So they didn't say you need to be on Tamoxifen?  My biopsy was just a "tiny" ALH and they still wanted me to take it.  You might want to just ask them about it. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    momoschki---this is wonderful news! The 3rd opinion was the tie-breaker. sounds like they are very confident that it was very small and they got it all. Generally, the recommendation for ADH/ALH is just yearly mammos and breast exams every 6 months unless there are other significant risk factors, such as family history, then sometimes tamoxifen is recommended. (but you mentioned you don't have any). So, just be vigilant about your exams--now you can celebrate!

    Anne

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  • momoschki
    momoschki Member Posts: 682
    edited May 2011

    All doctors involved (my breasst surgeon, 2 oncologists, my gyno) are not pushing tamoxifen because of a previous episode last year of endomentrial thickening, giving us evidence that my body has a tendency to do this on its own.  Suggestion was to wait until menopause, then give Evista a try.  I am nearly 54, so how much longer can it be??

    Yes, I will now be on that 6 month circuit, which I am sure will leave me more of a nervous wreck than before, but still, glad to have a definitive dx and to have it come out the comparatively more benign choice of the 2. 

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  • momma_of_3
    momma_of_3 Member Posts: 110
    edited May 2011

    Just found this thread... So totally my story:-) Local pathologist thought DCIS but Yale said no just ADH. This was the case for 2 separate excisions. Now I am 1 week post op PBMX and again same local pathologist says DCIS and they aren't sending for 2nd opinion. I think that I nay request same Yale second opinion. My bs says that DCIS and ADH for me is the same but... I just wonder. I have been going over and over this for 6 months and I am tired of worrying. I have not seen the path report yet but I plan to get it this week and read it for myself.

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