ADH after bilaterial DCIS

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ree
ree Member Posts: 15
edited June 2014 in Second or Third Breast Cancer
ADH after bilaterial DCIS
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  • ree
    ree Member Posts: 15
    edited February 2009

    Bilaterial DCIS treated with partial masectomy and radiation in 2006.  Just diagnosed (2/09) with atypical ductal hyperplasia.  I'm not sure what the next steps are.  ADH isn't cancer but it's trying.  My doctor is out of the country so I'm without guidance until next week.  Have any of you experienced ADH after DCIS?   Oh crap!

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  • Mouser
    Mouser Member Posts: 245
    edited February 2009

    Hi ree --

    Crap is right. i'm really sorry you're in this boat; it's difficult - not just because who needs to go through it all again, but because the data for making decisions about ADH aren't very good. Been there just recently...

    Mine wasn't after pure DCIS - i had IDC at one site and DCIS at the other (same quadrant); diagnosed spring '07; had a 2-site lumpectomy and rads and started femara in Oct '07. No chemo.  Then the '08 mammogram showed more calcifications (7 cm worth! same breast!) and the biopsy showed mixed ADH/DH. Now - they changed technologies on me; the '08 mammo was my first digital mammo. Make a long story short -- it wasn't cancer, but the only way to prove it was by taking it out, and there was too much of it to do another lumpectomy, so i had a mastectomy. Which, in retrospect, i didn't need ... only there was no way, in my opinon, to avoid it... my good news was that this wasn't something new, it was something that had been there all along, and the new technology uncovered it. Any chance that's what happened to you? 

    They really don't know what to do with ADH, how to classify it. It's variable -- it covers the range from almost-DCIS down to almost normal ductal hyperplasia (DH) -- and the exact reading may vary between pathologists (like grades of cancer - one may say grade 1, and the other grade 2; they don't usually differ by more than 1 grade though). Also, the experts don't seem to be sure if ADH is really a precursor to cancer - 'trying' as you say - or merely an increased risk ... doesn't entirely make sense to me, but the best i can figure out, it has to do with whether the cells in the ADH are clonal (come from a single cell); if that's so, it's on the way to cancer, if not, it's only increased risk... and clonality varies between people and between cells in one breast. So it's all vague. And getting one's own cells tested for clonality is probably not realistic -- the place i saw this bit about clonality was a research paper and involved checking a bunch of genes in lots of cells - definitely research, not clinical stuff.

    There are so many variables, you'll just have to see what it looks like -- what the degree of abnormality is, how big the area is, how your breast feels and looks after what's already been done to it, what your DCIS hormone status was ... etc etc. Ooops -- I realize i'm assuming it's in the same breast -- makes some difference because that tissue's irradiated. But either way, if it's low grade, watchful waiting is probably an option. Also - going on tamoxifen if you're premenopause or an aromatase inhibitor if your post-menopause, assuming your DCIS was ER+. (As far as i can tell, they don't check ADH for hormone receptor status, but they do check DCIS, don't they?.)

    i hope your doctor's helpful. Soon. But unless you really solidly agree with his/her advice, i would go for a 2nd opinion - to a major medical center - if at all possible.

    hugs, mouser

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  • ree
    ree Member Posts: 15
    edited February 2009
    Thanks so much.  There isn't much out there about this issue and it helps to hear from someone who has been through this.  I see the surgeon tomorrow so now I've got some good questions to ask.  I had bilaterial dcis so this breast has been radiated.  The calcifications are new but the doctor originally thought they might have been caused by the radiation.  I'd never heard of that happening.  Every time I go in I get a different doctor (HMO).   My dcis was comedo with necrosis ER+.  I'm preeonpause and kept my ovaries when I had a hysterectomy last year (mistake probably).  I'm not sure what to hope for - mastectomy means no more worrying but it seems like a very big deal and painful.
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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2009

    The mastectomy isn't as painful as a hysterectomy. With a mast, there are no organs, muscles or bones involved.

    It is more painful emotionally. 

    My "good" breast showed microcalcifications and atypical hyperplasia which is like 'staging' for cancer as you mentioned. It probably would have developed anyway. 

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  • PSK07
    PSK07 Member Posts: 781
    edited February 2009

    ree-

    I was diagnosed with LCIS and Atypical Lobular Hyperplasia (ALH) in the good breast a year after my dx of DCIS and 8 months after finishing radiation treatment.

    It was probably there earlier - the pre-surgery MRI showed enhancement, but the ultrasound and biopsy came back clear. With this, it's really the luck of the draw to find it, I think.  The nodule showed some growth and further enhancement, so they did another biopsy. Result was another partial mastectomy.

    I've decided to go the watch and wait routine.  I'm 47 and premenopausal. Started taking tamoxifen this past month (had pretty much decided against it after DCIS) and will alternate mammograms and MRIs every 6 months for years to come (rather than the 3 years that just DCIS got me).

    Mastectomy seemed like too much with my DCIS and still too much with this dx.  In years to come - if I have more biopsies and surgeries - I might change my mind, but for now I can live with it.

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  • ree
    ree Member Posts: 15
    edited February 2009

    I met with my surgeon today.  He says I have 3 options - 1.  Do nothing (not recommended)  2.  Get an excisional biopsy because there's a fair chance that DCIS is hiding with the ADH.  3.  Skip the excisional biopsy and go straight to a double mastectomy. 

      I am going to meet with a plastic surgeon to find out about nipple sparing DIEP procedures.  Maybe it won't look too bad.  If it looks okay maybe I'll go with the mastectomy. It seem so extreme though.  The doctor says I have a 30-50% chance of cancer going forward because of my history (DCIS both breasts one with comedo).  In a way I wish he said 100% - then the choice would be easy.     

     It's interesting to see the choices you've made.  All different but all with similiar situations.  There is no right answer I guess.  You all have come to peace with your decisions.  I hope I can too.  I really appreciate your advice and sharing your experiences.  I feel less alone.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2009

    I didn't know they could spare the nipples with DCIS as the ducts all end at the nipple.  

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  • ree
    ree Member Posts: 15
    edited February 2009

    Oh oh.  I hadn't thought of that.  I'd better speak with my cancer surgeon about that before I speak with the plastic surgeon.  I don't like those tatoo nipples.  Okay - nobody does but I feel a need to stamp my feet and pout in a corner.  I told my husband it's as if I'm on 'Let's make a Deal' and I'm being offerred what's behind door A or B but I want what's behind door C.  

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  • wbuggie
    wbuggie Member Posts: 91
    edited February 2009

    I am having a bilateral mastectomy on 3/5.  After much debating (they have found now....after 5 paths 4 sites that appears "almost DCIS" and there were no clear margins.  I am not very big so to have a 3rd biopsy and more removed would have left me disfigured enough that I decided to move ahead and not keep going through this. I know this is a bit of a radical decision but since they kept bringing me back and no conclusion... I finally decided this was best for me. 

    The real reason for my responding is that after a lot of research and speaking with several oncologists and surgeons.... I have found out that you CAN have a nipple sparing mastectomy.  I had originally been told that was not an option....but that was from a doc that was more on the reconstruction side of things.  I have now found a local surgeon in Tampa (I had heard of a number of others but they were all out of state and a cost I was not able to incur right now).  They cut from under the breast, spare the nipple and at times do the implants right there and then.  I have my meeting with the PS on Wed so will have more details on expanders or direct implants then.  There are more options out there now and there are a number of docs performing this with great results!

    Good luck to you and hope all turns out well for you!!!

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  • ree
    ree Member Posts: 15
    edited February 2009

    The PS told me that the nipple is the mastectomy surgeon's call. The mastectomy surgeon said we couldn't spare the nipple but could spare the aerola (spelling?)  so no tatoo!   I was disappointed but not surprised given Barbe1958's comments.  I'm glad to avoid the aerola tatoo. 

    The person I lunched with today had an interesting take on the entire mastectomy thing.  When I told her about it she said it sounded similar to what the Hollywood stars do all the time - breast 'work' and a tummy tuck!  It made me laugh and I don't feel as bad.  I really like the idea of cutting under the breast.  I moved my meeting with the plastic surgeon to this Friday and I'm looking forward to hearing his ideas.  I'm feelin better about possibilities now.   Good luck to you.  Actually setting a date makes it real.  It's going to be a long couple weeks for you I'll bet.

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  • RedSunshine
    RedSunshine Member Posts: 30
    edited February 2009

    Ree -

    I'm sorry you're in this position, but I'm encouraged to see I'm not alone. (If that makes sense?) I'll follow this post with interest, as I have recently had a similar diagnosis and await advice on how to proceed.

    In '07 I was diagnosed with DCIS high grade in my left breast. I opted for excision + radiation, and we got 1.5mm clear margins... enough to proceed. I finished rads in 01/08, started tamox in March. In July, an MRI and biopsy indicated a recurrence. I went to a major cancer center, where they ruled it an "overcall" and said there were atypical lobular cells, and that they were a result of the rads.An MRI in Dec 08 proved this, because the area of concern was gone on its own.

    However... same MRI showed another, new area of concern. MRI guided biopsy turned up ADH, and the major cancer center said this time it was not a result of rads. In addition, they could not rule out DCIS unless they fully excised the area. I had the surgery Friday, enjoying shooters today. Ha.

    So, like you... I wonder what now... assuming no DCIS is found (because I was told that does mean go directly to mastectomy). Regardless of whether these ADH cells were left behind or are new, they either survived rads and tamox or grew despite the two. Will I need further hormone treatment? Will this increase my chances for later recurrence? Should I proceed to mastectomy now, rather than "wait for the inevitable", or is it not inevitable? 

    I am finding very little relevant information out there. I await my pathology review on 1/25, but that seems an awfully long time to wait and wonder. Anyone else have more to suggest or add? And ree, I'll wait with you. :)


    Thanks,

    Kelly

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  • ree
    ree Member Posts: 15
    edited February 2009

    Kelly - I decided to connect with my oncologist for a second opinion - after all the surgeon might lean more toward surgery than other approaches.  Anyway, I'm glad I got the second opinion.  The oncologist said that there is no protocol for this type of situation (DCIS both breasts age 47, breast conserving surgery and radiation, and then extensive ADH).  He happened to be going to a BC doctor convention (what are the odds?) and brought the situation to one of the meetings.  Some of the doctors thought that the cells might already be DCIS.  I didn't realize that it's sometimes very difficult to differentiate ADH from DCIS when there's been radiation.   I wonder if that's what's going on in your case too. That helped me make my decision - I'm going with a double mastectomy.  If the cells survived radition they are tough customers.  If they are new then they are aggressive overachievers to get this bad this quickly.  In either case I'm going to treat them agressively.  If they'd been closer to AH than DCIS I'd still be on the fence .  It might sound funny but I actually feel better knowing the cells are worse than I thought because the decision is easier.   So tell me - How did your excision come out?  Any word?  The waiting is difficult.

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