ADH Again

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debbys17
debbys17 Member Posts: 26
edited June 2014 in High Risk for Breast Cancer

I'm still reeling from my mammo and dr appt today. In the past 4 years I have had 3 needle biopsies, 1 left, 2 right - followed by surgical excisions for ADH. I have had 6 month followup mammos and visits with the oncologist throughout. Today, almost exactly 1 year since the last surgery, the mammo shows large areas of calcification between the 2 previous ADH sites in my right breast. I saw the oncologist following my mammo. For the 1st time she is suggesting that I consider mastectomy and reconstruction. I'm 50 and am seeing my breasts disappear a chunk at a time. Has anyone else had multiple surgeries for ADH? Has anyone elected to go with bilateral mastecomies due to recurring ADH?

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  • LISAMG
    LISAMG Member Posts: 639
    edited February 2010

    Stratification of breast cancer risk in women with atypia: a Mayo cohort study.

    http://jco.ascopubs.org/cgi/content/full/25/19/2671

    A very helpful research article that may assist your decision making. Gather all the facts to decide what is best for you. "Multi-focal" ADH is often the key with a higher risk factor for invasive cancer. Do you have any family history?

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  • lacey240
    lacey240 Member Posts: 4
    edited February 2010

    Hi Debbys17,

    I am considering a prophylactic mastectomy.  I am 48 and like you, have gone through too many needle biopsies, core biopsies, ultra sounds, MRIs, mammos, and surgeries to count.  It feels like every 6 months the cycle starts again.  You go for the mammo, you get the call back, you have the ultra sound, and the needle biopsy.  You come back in 6 months or you schedule surgery and start the clock again.  The last surgery found too many Atypical cells and I was given 2 options, Tamoxafen or bilateral mastectomy.  After some research I am pretty sure I am going with the  surgery with reconstruction.  I still have to visit the plastic surgeon next week though.  I may be changing my mind after I see what I have ahead of me.  At any rate, it is evident from this website we are not alone.  

    Lacey240 

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  • debbys17
    debbys17 Member Posts: 26
    edited February 2010

    Thanks for the information Lisa. It was very informative. Pretty much followed what my oncologist told me.

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  • debbys17
    debbys17 Member Posts: 26
    edited February 2010

    I'm sorry to hear that you are going through the same things I've been going through for the last 4 years. You're right, it's like being stuck in a whirlpool. Every 6 months the stress starts all over again. I would be very interested in how your visit with the plasitc surgeon goes. I'm still a few weeks from any further appointments, so only have time to sit and think. Good luck to you.

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  • kreativek
    kreativek Member Posts: 58
    edited February 2010

    Yes, I had bilateral mastectomies and reconstruction almost two years ago for ADH.  I was 48 at the time.  I had nipple sparing mastectomies and silicone implants.  My scar is in the crease under the breast.  The worst scar I have now is from my lumpectomy!

    I don't regret it for a second!  It was a great decision and I feel very free.  I have a strong history of breast cancer in my family and I was always doing surveillance.  I got my first mammogram at 28 so I had been doing surveillance for 20 years.  I found as I got older, I was getting more call backs, more biopsies etc.  It was not fun.

    You can't imagine the peace of mind I have!  I'd be happy to answer any questions you may have. 

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  • lacey240
    lacey240 Member Posts: 4
    edited February 2010

    Hi,

    Went to the plastic surgeon yesterday for a consultation.  I really liked him and he was extremely informative.  He answered questions I had been thinking about like, why do they put in expanders instead of implants right away.  He explained about swelling and blood flow to the area. He also said that size and shape often need to be tweaked.  After talking with him, I think I am going with implants and hope that nipples can be spared.  I have to see the surgeon and see what she thinks about that.  He also discussed silicon vs saline implants and feeling silicone look and feel more natural.  He also says the studies show that they are safe unlike previously thought.  I feel a lot better after our visit.  (Husband went with me.)  I am concerned about recoup time as I am a very active person.  He thought I should be feeling pretty good at about 4 weeks barring any complications.  I am going to a presentation by another plastic surgeon at a local hospital next week and hope to get more information.   Have you researched any options yet?   Have you thought about Tamoxifen?  Let me know how you are.

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  • debbys17
    debbys17 Member Posts: 26
    edited February 2010

    Thanks for the encouraging words. I found out the needle biopsy results yesterday - DCIS. The oncologist I've been seeing for the last 1 1/2 years called to talk about my options. I told her I was interested in reconstruction at the time of the mastectomy, and probably bilateral since I've already had ADH in my left breast as well. She is referring me to 2 surgeons in Seattle. I live in a rural part of Washington, so no one here can do reconstruction at the same time as the mastecomy around here. I should be hearing from them in a couple days to schedule consults. Needless to say, I didn't have a very good day yesterday. I feel better today. I have been having mammos every 6 months, so this is very new. The doctor kept repeating that this is still very small and caught very early. I appreciated that she called me within a 1/2 hour of the breast care nurse calling me with the results. I didn't think I would be talking to her till next week. So now I get to start a new journey. Luckily my husband is very practical and supportive so I won't be traveling alone.

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  • lacey240
    lacey240 Member Posts: 4
    edited February 2010

    I'm so happy to hear that your doctor is so responsive and you have a great support team.  aka husband.  It is so important during the tough times to have someone we can rely on.  Good luck with the consults.  I thank God for the people that have gone into medicine and the advances that have been made in testing and treatment.  Just think what our grandmothers didn't have available to them.  You are lucky to have found this lump early.  Let me know how your consults go.

     Smile

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

    Debby----I'm sorry about the DCIS, I'm sure it was not the news you were hoping for. But the positive side of this is that you caught it while it was still non-invasive, probably because you were being so closely monitored.  I do high risk surveillance (high risk due to LCIS and family history of ILC), so I know the emotions and the issues that go along with it. I wish you peace and strength as you go forward.

    Anne

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  • mikita5
    mikita5 Member Posts: 373
    edited February 2010

    Hi Debbie,

    I had DCIS in one breast last yr. had a bilat mx w/immediate reconstruction (DIEP). My surgery was March 31, 2009, so I'm almost one yr post mx.  The surgery is rough, but do-able.  I highly recommend the immediate reconstruction if you can do it.  Mine was a 12 hr surgery (supposed to be 14 hrs but everything was 'layed out' right up front and everything went extremely smooth, said my PS). 

    Take your time to research your options and take special care to find the right doctors-those who are very experienced in the type surgery you choose.

    If you need to talk, feel free to pm me. I'll help in any way I can.

    Take your time and research, research, research all your options and don't do anything in haste. Make sure your decision is the right one for you.

    Good luck and God bless you in this trying time.

    Kathy

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  • debbys17
    debbys17 Member Posts: 26
    edited February 2010

    Thanks for all the kind words and support you ladies have given me the last couple of days. Right now I'm focusing on breathing. The oncologists nurse is working hard to get me appts in Seattle (about 250 miles away) that are close together so I'm not driving over the pass in winter too often.

    Today I'm leaving for Las Vegas for our annual Nascar vacation. In addition my daughter gave me a Christmas present that now seems as if it was from heaven. Tomorrow night I get to live out my teenage fantasy and meet Donny Osmond. Some of you may think this is really dorky, but it has so given me something to look forward to. She gave me a VIP ticket which includes a backstage chance to meet and photos with Donny and Marie. When I find it hard to breath and things seem overwhelming I think of the show tomorrow.

     Then I'm going to spend 3 days out at the race track watching cars race at incredible speeds. Lots to see, and very loud. I'm hoping the noise drowns out that inner voice - at least most of the time. I find far too often that the cancer is on my mind.

    I have my 1st appt with a plastic surgeon set up for next week when we get home. From there on it will be hard to ignore. But at least I'll be taking baby steps forward to get this over. The nurse is working on getting the rest set up so when I get back I'm off and running.

    Again, after being long winded, I really appreciate the kind words, thoughts and prayers. I haven't shared this with too many yet, because I have no answers for them. After meeting with the docs and setting up a plan then I'll start to let people know. Being able to share thoughts here is so helpful. Thank you for listening (reading) and prayers. I'll keep breathing.

    Debby

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  • hobie644
    hobie644 Member Posts: 94
    edited February 2010

    Hi Debby, 

    I am so jealous; Donny Osmond is my tean idol too, and I would love, love, love to see his and Marie's show and to meet them.  I think it's wonderful that you're getting to fulfill a fantasy.  I pray that your breasts won't even be part of your thought process during your fun filled weekend in Vegas.  We all need to do something to get our minds off our breasts...at least for a little while.

    Carol

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  • debbys17
    debbys17 Member Posts: 26
    edited February 2010

    Hi Carol,

     Last night was a dream come true. My seat was 4 feet from the stage. And I got a hug from Donny at the meet and greet after. Spent way to much $$ on the pro photos. They wouldn't let us take our cameras. But it was a night that I will remember and smile about for a long time! Marie is beautiful and very nice. They talked for a couple of minutes as they were signing my pictures. Didn't think about those obnoxious breasts very much. Totally forgot them when Donny sang Puppy Love.

    Debby

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  • lacey240
    lacey240 Member Posts: 4
    edited February 2010

    Hi Kreativek,

    I am relieved to be able to talk to someone that has gone through this before.  I've been in touch with the social worker at the hospital that I've going to for all of my other procedures.  She has put me in touch with some lovely ladies that have been through mastectomies.  All those ladies however had cancer and had to also endure chemo or radiation or both.  I feel like a weeny worrying about the pain after surgery, length of recovery,  what my breasts will look like after surgery or if there will be complications.

    thanks for the ear,

    lacey240

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