ADH Confusion

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run4urlife
run4urlife Member Posts: 15

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  • run4urlife
    run4urlife Member Posts: 15
    edited March 2010

    I had a needle biopsy done with a diagnosis of ADH. breast surgeon advised to have it removed so did surgical biopsy. I received a call from the breast surgeons nurse saying results are "fine". That was it. Nurse did not ask me to call back for follow up or anything. Okay. But then I have been talking to people and they are saying that if you have ADH there should be some type of follow up. So I called the nurse back and asked again about the results and she said "it was benign". I said that I was inquiring about what to do, if anything about the ADH. The nurse said "oh, they didn't find any atypical cells" from the surgery. I am really confused.  So I had surgery to check on atypical cells that weren't even really there??? Nurse offered no other information and just got of the phone. I am a bit lost at this point and am wondring if I should be asking another doctor what is going on! Any guidance here?

  • lila3357
    lila3357 Member Posts: 36
    edited March 2010

    it sounds like they are saying that all the cells were removed and that there is no evidence of any more ADH or other atypical cells based on the pathology...BUT..if you are not 100% comfortable with what she told you...ask for the Dr to call you and explain exactly what your situation is.  It sounds good...but only if you feel secure about it....so seek more info!!!!

  • Mouser
    Mouser Member Posts: 245
    edited March 2010

    Hi -

    I think you deserve a thorough discussion of what they found, what the pathology report said, and what sort of follow-up you need in the future. For example: how large was the area of ADH in the biopsied tissue, or was it all removed in the needle biopsy?  (That would account for the 'no abnormal cells' statement). Questions include: Are there other calcifications in your breast, or in the other breast, and if so, how suspicious are they? What is your risk of a repeat, of something more serious, etc? Have they considered your family history, if any, and how does that play into your future course of action? At your age, and given this episode, how often should you have mammograms?  Clinical breast exams?  Tamoxifen? ...

    The surgeon may not be the best person with whom to have this discussion --(s)he sounds like surgery is  his/her only concern. Surgeons often are like that... So you may want to talk with your primary care physician, for a start, or with an oncologist if you don't get good answers from the primary.

    On another point -- the idea of having a biopsy for cells that aren't even there: that's the curse of the needle biopsy! They dont really know what's right next door until they excise the entire suspicious area. It might be a level more serious than what the needle pulled out -- and that would have been DCIS, in your case. Or, as the nurse suggests, *less*  serious - no atypical cells. That's good news! In my case, the needle found DCIS, but the excisional biopsy found invasive cancer - IDC. The uncertainty is why they do the excision. But apparently it's not usually more than one level difference: they don't seem to worry about IDC if all they see with the needle is ADH....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    I would ask for a copy of your pathology report. Often the recommendation for ADH is yearly mammos with breast exams every 6 months, with the addition of tamoxifen if there are other significant risk factors such as family history of bc. I would talk with your doctor about the risks and benefits for your individual situation.

    Anne

  • HelloFromCT
    HelloFromCT Member Posts: 280
    edited March 2010

    I was dxd with ADH last year, first a stereo needle biopsy, then excisional biopsy also showing ADH.  I was told it was benign too, but they referred me to an oncologist.  The oncologist was more thorough in his explanation of what an ADH dx means and what if any follow up should be done.  If you are dissatisfied with the explanation from the nurse, maybe request a copy of the pathology report and possibly a referral to an onc.  Depending on your risk factors, they may tell you to do nothing, or they may suggest taking Tamoxifen or just increased monitoring or whatever.  No way to tell without additional info.

  • run4urlife
    run4urlife Member Posts: 15
    edited March 2010

    Thanks Lila and Mouser for the great feedback. Mouser I am so sorry to hear you've had to deal with cancer. Yes, indeed I need further discussion of this issue.  I now think I deserved more than a voice message saying it's "fine" with no explaination whatsover. I assumed fine meant it's just ADH and not cancer and that they got all the ADH out. If I had not called back (at the prompting of friends) I would have no idea they didn't find ADH on the surgery. I will follow up with the Dr. who referred me to the breast surgeon in the first place, but even if a surgeon only does the surgery shouldn't either ther surgeon or the referring Dr. tell you some of these things, like exactly what they did or did not find? I am feeeling very out of the loop with the way the lack of communication from the surgeon/doctor on this. Or am I expecting too much?? Thank goodness for this board that I know what to ask now!!

  • run4urlife
    run4urlife Member Posts: 15
    edited March 2010

    AWB and CT do you still see an oncologist if the ADH was only on the needle biopsy and not the surgery biopsy? I do have a family history of cancer and have been told the history puts me at high risk. Thanks so much. You are so helpful.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    I would get a referral for an oncologist since you have the family history as well as having had the ADH finding initially.

    anne

  • HelloFromCT
    HelloFromCT Member Posts: 280
    edited March 2010

    I agree with Anne.  I also had ADH  on the excisional biopsy so I ended up seeing an oncologist several times, then a genetic counselor.  It's worth it just to have even one appointment so they can explain everything to you.

  • run4urlife
    run4urlife Member Posts: 15
    edited March 2010

    Thanks so much CT and Awb, I will look into setting up an appointment with an onoclogist. I really appreciate you info on this one!

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited March 2010

    My surgeon's office will have the clinical staff call with the results but also schedules a follow-up appointment with the surgeon so you can ask any questions to the surgeon. I would get the path report from both the needle biopsy and the surgical biopsy. I would follow-up with either the surgeon or an oncologist like the others suggested.

    Sheila

  • run4urlife
    run4urlife Member Posts: 15
    edited March 2010

    Thanks Ivt. I plan to call the surgeon's office to clarify things and also get a referral.

  • bebe51
    bebe51 Member Posts: 29
    edited March 2010

    I was dxd with ADH in Feb and have a strong family history of BRCA2 with breast cancer (mom and 4 of her sisters).  Had ultrasound for lump I could not feel (B9), then had stereotactic biopsy for micro-calcification.  Dr then had meeting with all involved (path, 2 radiologists,etc)  to discussed my situtation.  Radiologist said she took a lot of calcification during procedure and felt  that I just needed to be watched, at this time. All agreed.   They told me that ADH in itself is not cancer, but you need to be watched, and watched closely.  They are treating me as any high risk patient until genetic testing is done.  Did see genetic counselor and will see my Dr in April to discuss other options.  Will have rotation of mammo's and mri every 6 mo.  Hope this helps.  Mouser, thanks for you post.  I had a list of question to ask the Dr but I forgot a couple and your list reminded me.

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