ADH after DCIS and Radiation Therapy

Options
dkgs
dkgs Member Posts: 8
ADH after DCIS and Radiation Therapy

Comments

  • dkgs
    dkgs Member Posts: 8
    edited April 2013

    Well, still trying to get just one clean mammogram....

    I went in for a 6 month mammogram about 3 months after completing radiation therapy for DCIS and there are new calcifications. A needle biopsy revealed that there is Atypical Ductal Hyerplasia in the treated breast, similiar area.

    I haven't had an opportunity to discuss with my oncologist yet and was wondering if anyone else had been down this path before. I'm having a difficult time wrapping my brain around the situation.

  • ballet12
    ballet12 Member Posts: 981
    edited April 2013

    Dkgs--I haven't had your situation.  I'm due for my annual mammo in May.  When I had my stereotactic biopsy last June, they found ADH only, no DCIS.  It is the second time I had the diagnosis of ADH.  When I went for the excisional biopsy (aka lumpectomy #1) which is the standard procedure for ADH, they found extensive DCIS.  So, you most likely have to have another lumpectomy to be sure there isn't a recurrence of the DCIS adjacent to the ADH.  Best of luck.  Sorry you have to face this so soon after your treatment.

  • dkgs
    dkgs Member Posts: 8
    edited April 2013

    Thanks for the response ballet12 - looks like we both had the same surgery on the same day. I see that you've have several on the same breast. Has anyone suggested a mastectomy for you?

    I keep wondering what 30+ radiation treatments was supposed to do... I thought prevent this, but I guess not.

    Will hopefully get more answers from the doctor tomorrow.

  • Rhiannon78
    Rhiannon78 Member Posts: 33
    edited April 2013

    Hi there: So sorry that this has come up so soon after your DCIS experience.

    As Ballet mentions, surgeons generally want to do a wire-guided excisional biopsy with an ADH diagnosis to make sure that's all it is.  However, I was able to get my surgeon to agree to an MRI before further surgery and the MRI didn't find anything too alarming and so she agreed to wait and do another MRI in 6 months to track any changes. You might also consider getting a second opinion on the pathology slides.  Another pathologist might not think you have ADH at all in which case you could wait another 6 months, or they may in fact "upgrade" the diagnosis to DCIS, in which case, surgery would be the way to go for sure.

    There is some controversy with regard to what is better to spot DCIS/calcifications.  MRIs have proven to be more effective overall in detecting breast cancer in general, but my surgeon argues that in cases where suspicious calcifications have been found on mammo, it may indicate that for that type of patient, the mammo might do a better job of detecting trouble spots.  I know that Bessie and others have had experience where far more extensive areas DCIS was found via MRI than  on the mammo, so I think asking for an MRI before making a decision to either watch and wait or re-excise would be wise.

    Good luck to you!

  • dkgs
    dkgs Member Posts: 8
    edited April 2013

    The area was biopsied, so how does looking at it with an MRI change what is there?

    Still no answers on why 2 months after completing radiation something like this shows up.

  • ballet12
    ballet12 Member Posts: 981
    edited May 2013

    Hi Dkgs,

    Best of luck in this process.  It must be a bit daunting to happen so soon.  About whether someone suggested a mastectomy to me, actually my first "lumpectomy" in July was the excisional biopsy required after getting the ADH diagnosis.  They found multifocal DCIS to all margins, so no clean margins.  Went to a different hospital for the rest of my treatment, and had two more lumpectomy surgeries, achieving wide margins by surgery #3.  The second surgeon always posed the choice between lumpectomy and mastectomy at each stage of the game (as had the previous surgeon), but I wanted breast conservation unless that proved to be impossible.  I was uncomfortable with having an implant (would have only done one breast and no pmx on the other).  I was happy after the third surgery, that I didn't need mastectomy.  I've had that breast surgerized a lot, though, because I had three previous excisional biopsies on that breast, so now six surgeries.  Surprisingly, it looks pretty good after radiation for some odd reason, where it hadn't before.  I was warned about cosmetic defects (which were there), but the tissue changed after rads.

    Your situation is different, because, potentially, you will be having surgery on previously radiated skin, and that's tougher. But you gotta do what you've gotta do.  Best of luck.  I'll be thinking of you.

  • Myna
    Myna Member Posts: 17
    edited May 2013

    Hi dkgs,

    Yes, I have been there and done that a couple of times, unfortunately. Still have not gotten a clean mammo.  Next is scheduled for mid-May.  I had my first surgery for DCIS in 1/12, new microcalcifications were found in the next mammo in June which resulted in another excisional bx.  Had rads for 34 treatments and when went for next mammo in November of last yr and more microcalcs were found leading to a core bx then excisional bx.  All biopsies after the initial surgery for DCIS were ADH or another type of atypical cells.

    My last surgery was done after rads and I had no healing problems at all and, incredibly, my breast still looks OK.  You may be the same or different. 

    I had an MRI that showed more involvement than was really there because it was biopsied and showed inflammation.  MRI sometimes can tell you a great deal or can show more than really exists because it also shows changes other than atypia or cancer. 

    I am finding it tough to go to the next mammo so I understand where you are.  Get all the info you can and then decide.  Get the best team you can; it is important.  PM me if you have questions.

    -Myna

  • dkgs
    dkgs Member Posts: 8
    edited May 2013

    Thank you for the responses. I've met with the surgeon and it is becoming clear to me that my situation is a bit more unusual. I actually take some level of comfort in that because my body has always behaved/responded in ways that were not quite expected - so now for me it is more 'normal'... just outside of everyone else's 'normal'. Honestly sometimes I think there isn't really ANY 'normal' with this disease.

    I'll have another lumpectemy and depending on the pathology results perhaps a mastectomy. Personally I would rather jump straight to the mastectomy, but more experienced minds felt it was not the best direction at this time. I'm not always the most patient person and reluctantly agree with the decision.

  • dkgs
    dkgs Member Posts: 8
    edited May 2013

    I'm happy to report that the pathology results from the last lumpectomy are benign, just ADH, so I'll get a break from the madness and have some time to heal before another round, if there is one.

  • juliet62
    juliet62 Member Posts: 3,412
    edited May 2013

    that was my story,they kept finding "new califications" on post rad mammogram, so have had 4 surgeries and a sterotactic on the right breast but my last mammogram in feb was clear

  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    dkgs--are you going to take hormonal therapy (tamox or AI's).  I'm having a stereotaxic biopsy of the other breast on Monday.  If its ADH, the surgeon suggested I seriously consider taking them to prevent problems in the other breast.  I've been very resistant to taking the drugs.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2013

    My mammograms have always come back saying they can't see anything on my mammogram :) and then they warn "heterogeneously dense breast tissue reduces the sensitivity of mammogram, talk to your doctor".  My DCIS was found as a palpable mass.  I now get yearly mammograms (even though I think it is a waste of time) and, at least for a while, yearly MRI (though right now I am getting 6 month MRI's to follow something suspicious, but likely benign).  When I had my MRI before my initial lumpectomy it was used to decide how much of the breast I would likely have left after surgery (so I could choose between lumpectomy or MX) it ended being a little over-sensitive, as I likely could have had a smaller area taken out, if we didn't care about ADH (since I had ADH on the margins of my lumpectomy, which was never thought to be problem) --- I am forever grateful I took my chances on lumpectomy instead of MX, the area was large enough that my team was mixed on whether or not the lumpectomy would be doable, my surgeon is a magician! 

    I really feel for you women who have multiple biopsies after your initial diagnosis.  It would get tiring for sure. Best wishes to you in whatever you decide to do in the future.

  • prairies
    prairies Member Posts: 2
    edited October 2014

    I have just been diagnosed with invasive breast cancer and DCIS.  Also ADH was found in the "uninvolved breast parenchyma.  Underwent lumpectomy and scheduled for radiation next week.  In reading your posts from 2012, I have great concerns about the continuing DCIS you each experienced after radiation.  It is now 2 years out and I would appreciate hearing how things went for you and also your age at initial diagnosis.  (I also had lumpectomy and radiation in the opposite breast 17 years ago.)  Thanks!

  • prairies
    prairies Member Posts: 2
    edited October 2014



    prairies

    Joined: Oct 2014
    Posts: 0


    Post a reply


    A few seconds ago
    prairies wrote:

    I have just been diagnosed with invasive breast cancer and DCIS.
    Also ADH was found in the "uninvolved breast parenchyma. Underwent
    lumpectomy and scheduled for radiation next week. In reading your posts
    from 2012, I have great concerns about the continuing DCIS you each
    experienced after radiation. It is now 2 years out and I would
    appreciate hearing how things went for you and also your age at initial
    diagnosis. (I also had lumpectomy and radiation in the opposite breast
    17 years ago.) Thanks!

Categories