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Atypical Ductal Hyperplasia

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ToniaM
ToniaM Member Posts: 2
edited September 2021 in Benign Breast Conditions

Hello, I'm new to this forum.

I had a mammogram in September, called back for MRI with and without contrast, called back for Ultrasound to see blood supply, called back to have stereotactic core needle biopsy. Report came back with mixed pathology. Left breast 4 areas of benign cells. Right side 6 areas of mixed type cells including atypical ductal hyperplasia. Family history: Grandmother passed at 46 of breast cancer, 1st cousin diagnosed at 26 with breast cancer passed at 27 from ovarian cancer, sister diagnosed with breast cancer at 40 had mastectomy no further recurrence, another sister diagnosed at 37 with invasive micropapillary ductal carcinoma. She had a double mastectomy, chemo, and 5 years Tamoxifen. It came back once in her chest wall and once in her uterus. Has been clear for two years.

My husband, sister, primary care doc, and others thought surgery was the way to go to just take care of it and be clear. I met with a breast surgeon who after looking at my family history agreed that mastectomy would be reasonable. Genetic testing is not back yet. We had a date set for the mastectomy. Yesterday I had another appointment and the doc said I didn't seem sure if a mastectomy was the right move. So she suggested we do a lumpectomy instead and close monitoring. I agreed because I just don't know what to do.

I went home and told my family and OMG I was not expecting the upheaval. My husband and sister are so upset. I really am struggling because it is all a huge "it depends" on treatment. There is no clear cut answer. My brain is all over today.

Any suggestions?

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  • moderators
    moderators Posts: 7,907
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    Hi Tonia, and welcome to Breastcancer.org,

    We're so sorry you're here facing these tough decisions, but we're glad you've found our Community. You're sure to find this space a wonderful source of information, advice, and support. We're sure you'll get some great answers soon!

    Please keep us posted on what you decide - we're here for you no matter what!

    --The Mods

  • beesie.is.out-of-office
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    Tonia,

    This is not your husband or sister's decision. It it yours alone. You may want their input, just as your want the input of your doctors, but in the end it's up to you to decide what is best for you.

    I'm assuming at this point you've only had the stereotactic biopsy? If so, proceeding now with an excisional biopsy is a very reasonable decision. An excisional biopsy is effectively the same as a lumpectomy but the purpose is to remove the concerning breast tissue, in your case the tissue with ADH, to see if anything else is lurking. Some doctors use the terms excisional biopsy and lumpectomy interchangeably but this is confusing since each term has an implied meaning, one being for diagnostic purposes and the other being for removal of cancer. If the surgery finds that there is a cancer present (about a 20% chance when someone is found to have ADH), then you can return for a lumpectomy or mastectomy, and if the cancer is invasive (vs. DCIS), then lymph nodes will be removed and checked during this second surgery. If there is no cancer found, then you can choose to do monitoring or you can choose to have a bilateral mastectomy to reduce risk. You may be more inclined to choose the second option if your genetic testing comes back positive.

    Having the excisional biopsy/lumpectomy will provide you with more information, and it will give you time to get the genetic testing results and time to decide what's best for you to do, whereas having the MX now will shut the door to any other options.

    Have your sisters or other family members had genetic testing? Usually it is preferred that someone in the family who has had cancer be tested first. If this individual tests positive, then they know what to look for in your testing, and if you don't have the same inherited mutation, then you will have a true negative result. However if you are tested and no one else has been, then testing negative will not provide the same level of certainty because you won't know if there may be a different mutation that is causing the cancer in the family. And did you have BRCA testing or a full breast cancer panel (20+ genes)?

  • ToniaM
    ToniaM Member Posts: 2
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    Thank you!

    My genetic testing will be back in about a week. It is for the full panel.

    I have the "lumpectomy" (what my doc referred to it as.) scheduled for April 6. So I have all of March to collect more data.


  • VeeHow
    VeeHow Member Posts: 33
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    it might not be a bad idea to get a second opinion if possible. Praying for wisdom and peace for you.

  • ingerp
    ingerp Member Posts: 1,514
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    We all have our own decision processes but of course this is your body so totally your call. FWIW—I would not get a mastectomy unless it was the only option.

  • indahood
    indahood Member Posts: 122
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    Hi Tonia, I know I'm late joining in. But thought I'd just add, I've been through that decision before and chose lumpectomy. Do you want to know why? Because I didn't have a lot of time, was new to the idea of all this stuff and knew that if I chose lumpectomy, I could change my mind later. But if I chose mastectomy, there was no going back. In the end, of course it's your choice. Just read back, hope your happy and recovered from that lumpectomy.

    Cheers,

    Laurie

  • indahood
    indahood Member Posts: 122
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    If there is anyone on this forum, I'm Laurie. New to this topic. I had and have recovered from Stage 2 Invasive breast Cancer. My breasts and armpits have been aching lately and my oncologist moved up my mammogram and ultrasound. Then had a core biopsy, which shows Atypical Ductal Hyperplasia. ADH.

    I'm not looking forward to another lumpectomy and have to make surgery decisions. My Oncologist thinks I should have surgery, my GP thinks thats a good idea too but the surgeon seems reluctant. He thinks maybe because I had radiation to this breast that my pathology looks like it's ADH but maybe it's not. ARGH... anyone else ever heard that? I can't find anything on Google about misdiagnosing radiation damage as ADH in an already radiated breast.

    If it is ADH, I think I'm just done. I'm learning towards prophylactic Mastectomies of both breasts. My logic is I'm already year 2 of Aromatase inhibitors which is supposed to inhibit any of this abnormal growth. So I'm scared that it's back and I don't want to live life scared. I'd just rather have a big surgery and get it done with.

    Anyway, rambling. feeling alone again in a big decision.

    I'm indahood but my real name is...


    Laurie

  • VeeHow
    VeeHow Member Posts: 33
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    Dear indahood

    If it were me I would get a second opinion. You can get one just on the pathology if you want or a full second opinion from another surgeon and oncology team. Hope you get some good advice you feel confident in.

  • minustwo
    minustwo Member Posts: 13,077
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    Indahood - I agree about a 2nd opinion. You don't say where you are located, but I'd try to contact an NCI cancer center. https://www.cancer.gov/research/infrastructure/can...



  • Faith-over-fear
    Faith-over-fear Member Posts: 28
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    I recently had mx on right side for ILC. . Was supposed to have lumpectomy for ADH on left side, but when I went to imaging to have wire put in the doctor was unable to match wire with marker. Not a good experience. They couldn't do lumpectomy. I went into masectomy surgery confused and disappointed that I would not be done with surgeries.

    I dont even know if this is a legit question, but has anyone taken a wait and watch mindset for ADH?


    Thanks for reading my rambling.....