Atypical Ductal Hyperplasia 2 years following IDC Stage II

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eeyore2515
eeyore2515 Member Posts: 4
edited June 2014 in High Risk for Breast Cancer

Has anyone tested positive with atypical ductal hyperplasia following a breast cancer diagnosis?  If so, I am considering a mastectomy, I have had numerous biopsies over the years, then breast cancer and now this.  Has anyone been through the same decision? 

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited December 2010

    Me, I did...I had a mastectomy first then ADH two years later  in my other one, had a lumpectomy

    that last one was 8 years ago now

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  • eeyore2515
    eeyore2515 Member Posts: 4
    edited December 2010

    It's such a hard decision.  You don't know what lies ahead, but I don't want it to be cancer again.  Not only me, but my family has been through so much.  I lost my thyroid due to the rads, had a total thyroidectomy in Sept of this year.  Hashimoto's Disease!  I just want to find a "normal" and stay there for a while and put my feet up and relax! lol

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  • eeyore2515
    eeyore2515 Member Posts: 4
    edited December 2010

    Also had paternal grandmother diagnosed at age 52, paternal aunt diagnosed at age 46 (lost her life to breast cancer), then me at age 39 (6 weeks from my 40th birthday).  All IDC!

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited December 2010

    Were you tested for the BRCA genes?

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  • eeyore2515
    eeyore2515 Member Posts: 4
    edited December 2010

    Yes...positive

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  • car
    car Member Posts: 492
    edited August 2013

    Hi--after a long absence. I'm in the same situation (or close to it) and trying not to freak out. Friends and family are in the "you're so strong" phase.

    Anyway, I'm still healing from a stereotactic biopsy that tested positive for ADH--which had been a precursor of my DCIS for which I had a mammo/recon in 2007. MRI is scheduled for Wednesday, and I should know the results of that w/in a couple of days.

    I'm wondering what folks in this situation were advised (yes, I'm playing the guessing game for the holidays). Wait and see if the ADH moves to DCIS? Tamoxifen? Surgery w/or w/out rads? I will say that I'm at Hoag in Newport Beach w/an excellent team. My appt. w/my onc is scheduled for the 2nd week of January unless he moves it up.

    My onc and I agreed that I would not take tamoxifen after my mx. Unless he (not my surgeon) convinces me otherwise, my gut feeling is to continue to reject tamoxifen. I honestly think that I'd prefer additional surgery than to tolerate the side effects.

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  • LISAMG
    LISAMG Member Posts: 639
    edited December 2010
    eeyore, These are such tough decisions that only u can decide. You have already faced BC at a very young age and will remain very high risk without surgery. Early detection is the key, but never a guarantee with HBOC, unfortunately. Seems like u are being very proactive too. Take your time, gather all the facts to make a fully informed decision. You have lots of choices and options. I am 4 months post NSM and thrilled with my results. Knowing I do not live in fear anymore is priceless, but its also a highly personal decision. Best wishes.
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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited August 2013

    With the BRCA genes, you really need to be extra careful

    and have the conversation dealing with genetic probablilites

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  • SaraAust
    SaraAust Member Posts: 41
    edited March 2011

    Hi, I'm just going through a tough decision at the moment. I had an operation 12 months ago to remove a non cancerous papiloma lump removed which all went well but after 6 months I started to feel a change again. Thinking that it was just the breast tissue adjusting to the operation I left it and now I've been told that it has come back and the radioligist recordings classify it as ADH. I've now been told that my best option would be to have a NSM although they still don't believe that it's cancer (1 - 5% chance). I'm 45 and terrified and depressed at the thought but feel that I don't have any options. If I go with a lumpectomy they say that the breast will be deformed and there is a chance it will return anyway. I have a 60 year old cousin on my mother's side that had a Mastectomy due to cancer but otherwise no other history. Can anyone help with any advise on this? I haven't told family or close friends as yet as I know they won't understand given that it's not cancer at this stage. I'm due to have the operation on the 28th of April.

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

    Be sure to have a breast MRI of both breasts before making a decision.

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  • SaraAust
    SaraAust Member Posts: 41
    edited March 2011

    Thanks for the advise Melissa, the surgeon did mention that in the beginning but then consulted other surgeons in one of their weekly meetings, showing them all my pictures and they all argreed that my best option would be NSM so the MRI option hasn't come up again. I have an appointment with him on the 8th so I'll raise that with him then. I live in Sydney Aust. and I believe that our treatment is slightly different. I am not a candidate for the stomach tissue implant so they will do an immediate silicon reconstruction. My surgeon told me that you don't use silicon in the US any more but he assures me that it is safe here now and my best option.

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  • nell0314
    nell0314 Member Posts: 23
    edited April 2011

    Hi, I too have just been diagnosed with ADH after sterotactic bx. Radiologist and Onc advising surgery to remove the entire area and then bx it to see if DCIS. If DCIS probably radiation. I'm confused as to what to do. After what I went through 4 yrs ago with bc in the other breast, I have huge concerns about this one. Drs kind of treating me like "what's the big deal" and "don't jump the gun". That's easy for them to say. Tell that to someone who never had bc before. Just needed to voice my concerns and fears to people who understand. Thanks!

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  • REKoz
    REKoz Member Posts: 590
    edited April 2011

    So very sorry you are faced with this again. My situation is only similar to yours in terms of the papillomas. I had 3cm DCIS "admixed" with 1.2 cm IDC in the lower inner quadrant of left breast. Along with that, 2 papilloma's, each in a different quadrant which they said had to be removed. I was small chested so I really had no choice but to have a mastectomy. Lumpectomy would have left me with nothing anyway. It sounds as if you may be facing the same thing.

    We all have our different ways of coping with stress. It was almost easier for me to not have to make the decision between lump and mx. They say the papillomas are non cancerous but they will not leave them there because they "can grow to be cancer."  Only you can decide whether you can comfortably live with being BRCA + and keeping a breast that is obviously prone to irregular growths. I salute your strength if that's what you choose. I couldn't do it.

    Wishing you peace and good health!

    Ellen

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  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    13 years ago I had a benign fibroid removed and the surrounding tissue had ADH... I played the wait and watch game and was diagnosed with BC in November... I think they are totally related... same breast. Before my lumpectomy in December, I had an MRI that showed other suspicious stuff in different quadrant... I was told it was nothing after a biopsy... In truth it was a papalloma...

    So... I have 97% decided to have a MX with DIEP flap recon... I have been told that my chemo and potential rads would do nothing to combat the ADH, so I am leaning toward skipping rads and going straight to the MX. And if I didn't have MX I would for sure have the pappalaloma removed, and I have already had 2 surgeries on the left side plus 2 core biopsies... I think that is enough... that breast is simply diseased and needs to go... and on my good side there is a birad 3 they want to monitor... so I say DOUBLE MX..

     BRCA negative, but still...

    Sound reasonable?

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  • hopeful24
    hopeful24 Member Posts: 144
    edited April 2011
    After five biopsies that were fibrocystic, fatty tumors and fiboedemoas, I had two ADH removed about a year and a half ago. About six months later I developed another mass that feels exactly like the ADH and cannot be verified on an MRI.

    My mom was diagnosed with breast cancer last year (she's OK now). All her aunts had bc and her mother had cervical cancer. (I have no sisters or aunts.) We are both BRACA negative, but the genetic counselor feels there is just another gene we carry.

    I am currently on Evista. I'm undergoing mammograms and sonograms every six months, MRI yearly and the oncologist every three months. They are vigilant about watching the new mass, which has grown slightly, but still doesn't appear on imaging. The genetic counselor has put my risk of developing bc in the next five years at 70%.

    A new breast surgeon -- who does nothing but bc and specializes in high risk -- said he does not want to do another lumpectomy, he would prefer me to plan for a mastectomy. My oncologoist and genetic counselor are in agreement.

    I have had enough with the surgeries, medication, tests and appointments and am ready to do it. I'd be lying if I said I wasn't terrified. I have an appointment this week with a plastic surgeon to discuss the details of the reconstruction (the bs went over the basics).

    This is a very personal decision that you have to make, but you need to get people on your 'team" who are in agreement with your decision.

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  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    MX is terrifying, but getting cancer again for me is more terrifying... I am so done with wait, watch, test, re-test, biopsy.. .

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  • vmudrow
    vmudrow Member Posts: 846
    edited April 2011

    hopeful24 - I too had 5 biopsies that were fiboedemoes etc, and last year came back ALH.  I was tired of the constant worrying (strong family history) and tests, biopsies - so I decided to have nipple/skin masectomies.  I have been so happy with the results.  My risk went from 40% down to less than 5% - and I don't have to take Tamoxifen.  I wish everyone good luck with their decisions - it's hard, but I think you find peace once you make a decision.  And for me the masectomies were not that bad...  Hugs, Valerie

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  • HelloFromCT
    HelloFromCT Member Posts: 280
    edited April 2011

    bdavis, I had NS PBM and it really wasn't terrifying at all.  I did a lot of reading here on this site first and educated myself about what my options were.  By the time I had the surgery I felt completely confident in my decision and in my doctors.  Nobody wants to have surgery, but for some who are high risk, it makes sense. 

    Best to all who are struggling with these decisions.   I agree that once you make the decision, you will feel peace about it.  Good luck.

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  • memory
    memory Member Posts: 106
    edited April 2011

    I had a BMX because my PS recommended it. The prophylactic side had ADH, microcalcifications, papillomas (sp) and fibroadenomas (sp). On the cancer side, the tumor turned out to be larger than they thought (2.1 inches instead of an inch.) and some Grade 2 DCIS had already started. Even though I tested negative for BRAC 1 and 2, I've been told that I would likely have presented with a new cancer in a few years given that I had already survived one cancer, and because of the conditions in my other breast.

    That said, every other BC survivor I know underwent lumpectomy and is doing well. This is a decision you will have to make carefully, and as another poster said, only you can make it. I would also undergo a breast MRI if I were you, before making a final decision.

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  • SaraAust
    SaraAust Member Posts: 41
    edited April 2011

    Thanks ladies for all your experiences and my prayers are with you all. I am booked in to have the NSM on the 28th of April and now that I have told family it's been much easier to accept. I did raise the MRI with my surgeon & he said that he and his colleagues would still recommend the same thing whether it was cancer or not given that it came back so quickly and its size. I am only small breasted (not quite 34B) and a lumpectomy would be significantly large, causing my breast to be distorted, he believes that I would need reconsruction anyway due to this, so in his opinion and the PS they don't see the difference if I were to remove all the tissue and reconstruct or just part of the breast. This was said in a very understanding way and I guess it makes sense so again I don't feel like I have a choice. I am terrified of going through this once again if I don't go ahead, as it's the second time around, plus I went through this fear 10 years ago when I had a melonoma removed from my neck while I was pregnant with my second child. I didn't go through chemo as they removed a lymp node to test if it had spread and it hadn't. It's true that reading these posts helps tremendously but I have to admit some information is very daunting. For instance, there was a post who described the feel of the implant as cold and uncomfortable after 18 months. I know that I'll never feel the same again and I guess the unknown is always scary but in the end I'm just praying that it's not cancer and I don't have to deal with this again. All the very best to everyone out there who is having to deal with this hideous disease and I hope the love and support of family, friends and websites like this helps you get through it as best as you can and let you know that you are not alone. For me it feels like no one around me really understands what it feels like to be going through this fear so everyone sharing their experiences on this site makes a massive difference. Thanks again for any advise.

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  • vmudrow
    vmudrow Member Posts: 846
    edited April 2011

    Unsure123 - I too had very small breasts and there was getting to be nothing left after numerous biopsies.  My implants do feel kind of cold sometimes - doesn't make my body cold, they just feel cold when I touch them.  They are not uncomfortable, did take some getting used to them, but feel great now - it's been almost a year since the whole process.  Good luck - you are not alone - hugs Valerie

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  • nanahass
    nanahass Member Posts: 1
    edited September 2012

    I was given the same diagnosis today. I had a lumpectomy in June 2011 after a DCIS diagnosis, followed with radiation treatment. I had a biopsy yesterday after my mammo last week showed some suspicious calcifications. When my oncologist called me today with results of ADH and told me I should meet with a surgeon, I knew in my heart and my head that I should just have the masectomy so I won't have to go through this again. She did mentione that the ADH tended to be "the tip of the iceberg" and that there is likely some cancer hiding somewhere nearby.

    What do you think of this response? 

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2012
    In my case there was some undetected cancer hiding somewhere. Would it help to meet with a genetic counselor? That is what sealed the deal for me.
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  • bdavis
    bdavis Member Posts: 6,201
    edited September 2012

    I would say that it CAN be the tip of the iceberg, but many times is not. Some (most) women with ADH never develop cancer. But it does increase odds by about 4x... and if you have already had DCIS, then that should be considered as well.

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