ADH question

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mcmommy
mcmommy Member Posts: 16
edited June 2014 in High Risk for Breast Cancer

Hi!  I'm 36 years old... Back in March of this year I had an excisional biopsy to remove a papilloma.  My surgeon removed the papilloma, the duct & the surrounding tissue.  My pathology report came back that I have ADH.  I just returned from my 6 month mammogram.  I have a lump at the top of my breast that the radiologist felt & ultrasounded but, he said that nothing is showing up on mammo or ultrasoun.  He told me to "watch" it.  I'm already feeling worried about this watch & wait method for the ADH... now I have to "watch" this lump as well.  Any thoughts or experiences would be much appreciated.  I'm just not sure what I should do!!!  Thanks!!! 

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  • momoschki
    momoschki Member Posts: 682
    edited October 2011

    From my own (limited) experience with having been dx'ed with ADH this year, this sounds a little suspect to me.  My understanding is that standard procedure is to excise whatever ADH is found-- at least, in my case, my BS was adamant about this course of treatment.  You might also want to ask for an MRI to see what else might be going on.  Perhaps a second opinion is a good idea?

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  • vmudrow
    vmudrow Member Posts: 846
    edited October 2011

    I agree about getting the ADH out - I had ALH, and was also sent to an oncologist who wanted me on Tamoxifen - was told that ALH/ADH is precancerous.  Maybe you should get another opinion?

    Keep us posted!!

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  • iLUV2knit
    iLUV2knit Member Posts: 157
    edited October 2011

    I agree with the two that already posted above!!  Standard treatment is to excise the area and biopsy it. 

    If you "watch and wait", you may not have a good jump on nipping something early as opposed to fighing something fast and nasty later! 

    Go to another doctor...one that wants to check out your lump and that takes your health seriously.  Sometimes things just do not show up on their mammograms/MRI's. My ADH didn't show on a mammogram but it did light up the MRI.  I think your intuition is telling you that it needs to be checked further and I agree.

    check it out :-)

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  • mcmommy
    mcmommy Member Posts: 16
    edited October 2011

    Thank you very much for the responses!  When I had my mammo for the papilloma, the papilloma nor the ADH didn'tshow on mammogram or ultrasound.  The only reason why I found out that I had ADH is from the excisional biopsy from the removal of the papilloma.  Another thing that worries me is that I haven't had any treatment/surgery for the removal of ADH.  I was offered Tamoxifen, but I have a blood disease, so it's not option.  This lump today that they found worries me.  My husband is in the military, so I have to go to the doctors here on base.  I just really don't like this 6 month mammogram & now watching this new lump.  I'll be sure to keep you all posted.  Thanks again!  :) 

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  • mkkjd60
    mkkjd60 Member Posts: 583
    edited October 2011

    McMommy, please get another opinion.  The watch and wait with ADH is not recommended.  Please be aggressive with this.  Blessings. Mary

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  • tjohnson1971
    tjohnson1971 Member Posts: 97
    edited October 2011

    I agree with above, I had ALH at a stereotactic biopsy which lead to excisional biopsy/lumpectomy to show LCIS, which is a step above...so a little higher risk.  The wait and watch approach is not for me either...I want to be in control.

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  • Tatina123
    Tatina123 Member Posts: 480
    edited October 2011

    Please consider a MRI for a better picture. I had ADH removed in 2008 and then again in 2009. In 2011, DCIS.....all in the same breast. All problems were found by a MRI -- the mammos never picked it up....



    Take care of yourself,

    T

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited October 2011

    After my biopsy my sample came back with ADH.  The radiologist gave me results over the phone and proceeded to tell me that she would recommend a lumpectomy because she not convinced that there was not actual cancer in the lump because it was so big. THEN she told me that the surgeon would ONLY take out the worst looking parts and leave the rest for cosmetic reasons. I was in a PANIC for two weeks til I saw my breast surgeon. I could NOT believe that she would say...leave the precancer in...I was not willing to leave ADH in there and do the wait and see if it turns into cancer. That would be way too nerve racking for me.

    Luckily, my surgeon wasn't an idiot like the radiologist. The entire lump, plus more tissue because the surgeon didn't like what she saw.

    Turns out, I had l of DCIS and precancer all over the milk ducts.

    I couldn't live with ADH. In my mind, it would be a matter of time, not if it turned into cancer.But that is how my brain thought about it. Everyone is different though.

    I took all the information my breast surgeon gave me about what my cancer looked like in the breast, possible treatments, and made my decision. It was easy for me. Good luck to you.

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  • vmudrow
    vmudrow Member Posts: 846
    edited October 2011

    mycinnamon - I felt the same - no living worrying about ALH.  I love your "Mastectomy was NOT the worst or only available option.  I chose it and am happy with my decision." 

    You should join us on the PBMX for ALH or ADH thread - there aren't too many ladies that have chosen masectomy for ADH.

    Hugs, Valerie

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited October 2011

    I had a PBMX because of ALH and my younger sister died of breast cancer 4 months before my mastectomy and reconstruction. There is no way a woman should wait and see what happens with an atypical biopsy, please stay informed and I'm sure you will make the best decision for your health and life.

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited October 2011

    I also chose PBMX because of my dense breasts all imaging devices were not able to detect abnormalities in my breasts, so mammogram and ultra sound were useless for me. I saw no logic in having imaging of my breasts if it didn't work for my dense breasts. I also didn't want to take tamoxifin. A good PS can make beautiful breasts with silicone.

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  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited October 2011

    I had basically the same thing - loads of spontaneous discharge that was tested and abnormal, papilloma(s) - only one felt/seen before surgery but they pulled out two and they were pretty big - abnormal cells and messed up duct.  This was 4 years ago and my left breast is increasingly becoming a problem and is a mess - 2 areas of increasing density, calcs all over, and now I have this burning and tingling sensation around the top part of the nipple (that is not where my scar is located) so who knows. Right breast: perfectly clear.  I am starting to hate my left breast. I guess I may have to decide for the preemptive strike and give up this watchful waiting crap.  I am headed in next week to be looked at for this burning and pulling sensation. I think I may feel something small at the top of the nipple area now too. Getting tired of it...

     McMommy - one of the things I've learned from the last few years is that no one takes better care of you than YOU. Last year I said goodbye to my breast surgeon and radiologist team because I lost confidence in them when I found errors between what they told me and what was in my records and on my films.  I found a new place that I trust, so if they tell me everything is ok, I try to accept it and move on. You have to have that peace of mind or the fear will eat you alive and interfere with your life.   Please get a second opinion on the lump.

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