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Bilateral mastectomies for atypical ductal hyperplasia (ALH)?

coffeluver
coffeluver Member Posts: 9

Hi, I'm new here & recently diagnosed with two radial sclerosing lesions, one of which the biopsy showed contained atypical ducatal hyperplasia (ALH) in the same breast. The other was benign, but I still have to get both of them surgically removed. My breast surgeon ran 'my numbers' through the database and told me my lifetime risk is 40%. I'm 47, pre-menopausal with very dense breasts and have microcalfications in both breasts. My mother had breast cancer and survived. But -- aromatase inhibitors ruined her quality of life. I would rather get mastectomies than have to go on tamoxifen & radiation. I'm told I'm a perfect candidate for direct to implant reconstruction. So it sounds like I could get breast tissue removed one day, and the next day walk home with slightly larger, perkier breasts with all breast skin, nippe & subcutaneous fat intact. I don't care too much about loss of sensation. Is this crazy? I feel like if I wait for the invasive cancer to come, then I will end up on chemo, radiation & have to get the mastectomies anyway. So why wait? If I do it now, it seems I have more control. But it's super scary to do this & part of me wants to bury my head in the sand and just get the two areas removed & see what happens. So what did other people do?

Comments

  • harley07
    harley07 Member Posts: 247

    Do you have a genetic mutation? Has the surgeon indicated if they suspect DCIS or invasive breast cancer could be hiding in the ADH? Mastectomy is a very personal decision and major surgery with associated benefits, risks and side effects. Prior to moving forward with a BMX, I would recommend doing a little more research and getting a 2nd opinion.

    I’m a bit surprised that radiation and Tamoxifin were suggested for removal of ADH only but doctors have their preferences. Also chemo is not a given with a breast cancer diagnosis - that is dependent on type, stage, grade and Oncotype or Mammaprint score.

    For reference, I am older than you and was 63 at diagnosis with invasive cancer. The stereotactic biopsy indicated ADH however, the radiologist strongly suspected IDC based on the spiculated mass. The lumpectomy indicated IDC and ALH in addition to ADH. I have a strong family history of BC and a genetic mutation. I was diagnosed at the height of the pandemic and my surgeon would not even discuss the possibility of a mastectomy. So I had lumpectomy, radiation and an AI.

  • salamandra
    salamandra Member Posts: 719

    My genetic testing came back with 57% lifetime risk for breast cancer. My cancer diagnosis came in less than a month later.

    On the one hand, I did not need chemo, my doctor recommended a lumpectomy, radiation was fine, and though tamoxifen had bad side effects for me, toremifene has been fine.

    On the other hand, I now have the spectre of recurrence hanging over me forever. Recurrence is scarier to me than a new cancer because by definition it is metastatic (and I watched my mother die of metastatic cancer). A mastectomy now would be too late to avoid a recurrence risk from my prior cancer, but I hope that staying on the hormonal treatment as long as I am able to and my doctor permits me will help guard against a new cancer as well as against recurrence.

    Avoiding a first occurence of cancer, to me, seems pretty desirable.

    Still, even though I had tried to mentally prepare myself for the need to remove my breasts, I was beyond relieved when my oncologist recommended lumpectomy over mastectomy. Women have different relationships with our breasts, and it turns out I was more emotionally attached to mine that I think I had even realized.

    Given that, and given what else I know now, if I were currently facing that 57% lifetime chance without an actual diagnosis, I think the best option for me would be prophylactic hormonal treatment with extra screening. That might be an intermediate option for you to explore, after surgical removal. It's not an AI, and also, it's impossible to predict how your body will respond to the drugs, even based on your own mother's experience. It's also something you could try and see whether the side effects were tolerable for you - many women don't have side effects at all - and only move on to mastectomy if the answer is no.

    But if you feel more emotionally prepared for a bilateral mastectomy than I did, I don't think it's an over the top option. Not because chemo/mastectomy is inevitable even if you were diagnosed, but because of how much it reduced your chances of ever having to deal with the threat of metastatic recurrence.

    That said, mastectomy and reconstruction is no joke - they are serious surgical procedures. You should go into it as informed as possible of the risks and actual recovery time.

    I guess my advice to you would be to try to arrange for a consultation/second opinion from a highly respected cancer center that has a high risk department and see what their advice is, as well as to get more info from your surgeon and/or plastic surgeon to get a realistic idea of what the mastectomy and reconstruction process would be like for you.

    Good luck!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,626

    I have no opinions about how you should proceed as my personal circumstances couldn’t have been more different. However, I did have a bmx with one step implants, no TE’s*. Although everyone’s experience is unique, and I had a relatively easy time, it is rarely, if ever, as simple as you may have been led to believe or understand. This is a major surgery that will insert foreign objects into your body. The potential for healing issues, infection, unexpected cosmetic issues, etc., is very real. You simply don’t sashay out of the hospital with perkier breasts. Drain care and potential for infection is always there. I say this as someone who had virtually no problems, but I may be in the minority. Ultimately, you get to make the call but a bmx and one step implants are far from a walk in the park for many. Please make sure you understand the potential complications as you consider what to do and also that there is no way in advance to predict who will or won’t have complications. Take care

    * Yes, my surgery was both skin and nipple sparing.

  • coffeluver
    coffeluver Member Posts: 9

    Thanks for the replies. I just re-read my question and realized I wrote atypical ductal hyperplasia (ADH) when I was actually diagnosed with atypical lobular hyperplasia (ALH). Not sure it matters... they are pretty similar in that they are not considered actual cancer yet. Also, no one has told me I would have to go on tamoxifen or get radiation at this point. I was just saying that I would prefer mastectomy to that. That would be the point of the preventative surgery. To prevent getting cancer at all. It's all very scary to me, and my breast surgeon was quick to inform me that 20% of women get chronic pain from mastectomies. My first thought was to find a different surgeon whose patients never get chronic pain. I will definitely get second opinions. Problem is that I have to do something immediately, because according the breast surgeon, the 2 radial lesions "have to go". I guess, although benign, there is a small chance they could be hiding a cancer or could become cancer. I had an mri which was clear, but the more I read on this forum, the more I realize that plenty of cancers are found during removal that were not there on imaging.

  • coffeluver
    coffeluver Member Posts: 9

    Thanks for the replies. I just re-read my question and realized I wrote atypical ductal hyperplasia (ADH) when I was actually diagnosed with atypical lobular hyperplasia (ALH). Not sure it matters... they are pretty similar in that they are not considered actual cancer yet. Also, no one has told me I would have to go on tamoxifen or get radiation at this point. I was just saying that I would prefer mastectomy to that. That would be the point of the preventative surgery. To prevent getting cancer at all. It's all very scary to me, and my breast surgeon was quick to inform me that 20% of women get chronic pain from mastectomies. My first thought was to find a different surgeon whose patients never get chronic pain. I will definitely get second opinions. Problem is that I have to do something immediately, because according the breast surgeon, the 2 radial lesions "have to go". I guess, although benign, there is a small chance they could be hiding a cancer or could become cancer. I had an mri which was clear, but the more I read on this forum, the more I realize that plenty of cancers are found during removal that were not there on imaging.

  • salamandra
    salamandra Member Posts: 719

    "my first thought was to find a different surgeon whose patients never get chronic pain"

    That is understandable as a knee-jerk response, but I think if you go looking for that you are more likely to find a surgeon with less experience with this procedure, worse follow-up practices with patients, worse/less open and honest relationship with patients, and/or worse/less honest transparency and honesty.

    In general, my experience, and that of many on this board, is that many physicians are undersensitive and dismissive of our pain, side effects, etc. If you found a surgeon who actually takes their patients' experience seriously enough to elicit their honest follow-up, and then transparent enough to share it with you even though it risks reflecting badly on them, that surgeon may (may!) be a gem. Generally, surgeons love to cut, ROs love to radiate, MOs love to medicate, etc. It's not a bad reflection on them - that's their tool that they're most familiar with and they want to save lives. But a practitioner who is able to take a modest and reflective approach is a gift.

    (That said, I don't know enough to validate/contradict the doctor's statement, and a second opinion is a great thing).

    Finally - it may make sense for you to get a lumpectomy right away and save the mastectomy/reconstruction for later if your team is communicating urgency on the malignancy but you want more time to consider your options for long term prevention and reconstruction.

  • snm
    snm Member Posts: 49

    Hello, I just joined the community today. I had BMX (Feb 2023) for diagnosis of DCIS of left (>5.5cm area) and preventative on right. Surgical path found 1 tiny focus of invasive cancer (microinvasion). Skin sparing but not nipple. Had tissue expanders placed at time of surgery. Awaiting for permanent implants this May.

    Surgery is tough mentally and physically. I chose to do preventative on right as I didn't want to deal with this again- had high grade large area DCIS on left and no risk factors! I still am struggling with rib pain over former drain site and under curve of breast near tissue expander (not sure if this will ever go away). Numb over chest and entire left armpit. Occasional pins/needles sensation. I would highly recommend having help by your side- family and friends. I couldn't get through this without them.

    If anyone can tell me what to expect for implants please do share. I'm nervous about having any surgery but definitely need these expanders out as they are uncomfortable. Not a candidate for DIEP flap. Also if anyone has advice on nipple tattoo vs reconstruction please do share.


    Thank you all for your courage!

  • zogo
    zogo Member Posts: 18,927

    I was diagnosed with ALH also. My fear came from both my aunt and her daughter (my cousin) both died in their 40s from BC.

    Rather than the stress of mammograms every 6 months indefinitely as the alternative recommended, I chose PBMX with Diep flap reconstruction. This was in 2010 when I was 49. So, glad I did.

  • moderators
    moderators Posts: 7,636

    snm, welcome to the BCO Community discussion boards. We are happy you found us, though we are sorry you had to do so.

    May we suggest that you check out and join also these two threads (below) as they are very popular and relevant to your situation:

    Besides this, if you go to the Search function in the left menu and type in "nipple tattoo" (without the quotes) as your search term, you'll see every time this words have been mentioned in a post, and can then check out the thread.
    We hope this helps! Please keep us posted on how everything is going!

    The Mods

  • Utahmom
    Utahmom Member Posts: 8
    edited April 2023

    Let me start by saying that you have very busy breasts. It is important to know what birads number your breasts are along with that serious family history.

    I had a prophylactic BMX with diep flap in June of 2022. I am now 55 years old. I was 52 when I had my last menstrual cycle.

    58 % was my score. BIRADS 4 extremely dense breasts, fibrocystic tissues, Typical Hyperplasia, PASH, Atypical Ductal Hyperplasia . My genetic history was clear except for a VUS that they do not know much about at this time.

    PATHOLOGY after BMX - Focal Features of Lobular Carcinoma In Situ.

    I had the following:

    2013 Typical hyperplasia and Pash with microcalcifications in right breast. Microcalcifications in both breasts. Biopsy. Monitoring forn18 months.

    2019 Atypical Ductal Hyperplasia in left breast. Microcalcifications. Biopsy. Recommended to remove the affected areas. I held off after I saw surgeon. He shared that the real danger is that the Adh can affect the contralateral breast, my age, my numbers, and my breast density. He recommended I do the research, seek a 2nd opinion, etc. Before we do the excision of the areas.

    I did that. I had mixed reviews when I thought about doing Prophylactic surgery. Even the people on this site were not all supportive. After 2 years, I had my BMX with diep flap. One flap did not make it out of surgery. So, one diep, one implant.

    After I got my pathology, the chatter ceased against my decision. It was the right move.

    I went with my gut. I did not listen to people that were preaching their beliefs or their own agendas. I stayed in prayer and had peace. So, I knew it was the right choice for me. It was not an easy decision, however. I grieved a bit, cried a bit before the surgery. Was sad when one breast did not make it. But, that soon was over as i was so grateful when we received the pathology report.

    First and foremost, pray, do your own research, take what other people say with a grain of salt, trust the science. Your answer will become clear for you. Each of us have our own path. I am grateful to be where I am. I had great support from my family and friends.

    Blessings for you as this decision will never be an easy one.



  • maryscout
    maryscout Member Posts: 10

    Hi coffeluver,

    I'm sorry you're dealing with this. I was in the same situation in 2019 — though I had both ADH and (found out after surgery) ALH. I'm a survivor of other cancers, too, so I did not want to deal with 6-month mammos/mris, drugs, etc. I had a PDMX with diep flap in NOLA, and I'm totally happy with my decision. Everyone's decision is so personal, but for me, this worked out super well. Happy to talk more if you ever want. Wishing you all the best. Mary