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ADH saga

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Hi

I just needed to reach out to someone somewhere. I’ve been in limbo since Feb 2023 and it’s now June 2023. I’ve had a basic mammogram - next level mammogram/US- 3 core biopsies, 2 confirmed ADH and last one done yesterday and awaiting results. I have a surgical biopsy for the 2 confirmed areas and if the 3rd shows ADH that area too. I almost passed out with this last biopsy. I couldn’t talk or open my eyes but I could follow directions. The core needle was still in my breast. Everyone keeps telling me it’s no big deal it’s benign, but I’m going through a lot of invasive things. I’m trying to figure out some self care things but nothing comes to mind. I think the stress and anxiety are impacting me more than anything else. Sorry to complain/feel sorry for myself, I’m just at a loss.

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  • moderators
    moderators Posts: 7,928
    edited June 2023
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    Hi @skber,

    Please don't feel the need to apologize! We're happy that you found our community, and shared what you are going through. While ADH (Atypical Ductal Hyperplasia) is benign, it's still an understandably stressful experience to go through biopsies and await for results for months. In a sense, I imagine it must feel a bit like being stuck in limbo.

    Some recommendations for managing anxiety during the waiting period include:

    • Engaging in activities that you find enjoyable/hobbies (e.g. listening to music)
    • Physical activity, like walking outside
    • Seeking support, which you've already engaged in by posting on this forum
    • Guided meditation: Belleruth Naparstek has some well-done guided meditations that are available for free, such as this one:

    There are other recommendations on our article on Anxiety. The initial portion won't be relevant, as you have not been diagnosed with breast cancer, however the latter portion that focuses on "Managing Anxiety" is applicable to anyone experiencing anxiety.

    I hope this is helpful, and let us know what the results are when you find out!

  • flowergirl1975
    flowergirl1975 Member Posts: 54
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    Hi skber- Dont apologize about complaining or feeling sorry for yourself. I have done a lot of the both while going through all my BC testing. It's emotionally draining…. all the testing and waiting. The Mods are right, keep yourself busy if you can. The testing while rough is important so that you and your medical team know what they are dealing with. You can do this, hang in there!!!!

  • cookie54
    cookie54 Member Posts: 663
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    @skber Agree, absolutely no need to apologize, this is the only place people truly get it. I understand where you are coming from I had many ADH biopsies prior to diagnosis and it's hard physically and mentally. Try your best to do whatever relaxes you and keep busy. There is nothing you can do to change the result whatever it may be. Hope for the best but prepare for the worst.

    Easy for others to say when they're not the one being poked and prodded…right? Focus on you and yes we all hope it's benign and maybe you just need to be followed closely in the future.

    Sending positive vibes for benign.

  • skber
    skber Member Posts: 2
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    It is such a relief hearing from all of you. I’m beginning to realize this uncertainty may declare itself after the excisional biopsy and after the result of the 3rd core biopsy or not. Regardless, I will need to be vigilant. I know there are some things we can control - fitness, nutrition and habits - but other than that my life will take whatever direction is next for me. My 2 best friends both have breast cancer. I know it’s 1 in 8 but it’s still odd.

  • terriclark83
    terriclark83 Member Posts: 2
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    Hi ladies. I am brand new to this group. The posts I have read are inspiring and also giving me more knowledge than my primary doctor or the nurse navigator at the Breast Center. I had a bilateral core biopsy last year in November. The radiologist was able to get out a sclerosing lesion at the time. I was so relieved. So, about 2 months ago my right breast started hurting again. I couldn't really tell from where. Just knew it hurt all the time like it did before. I tried to ignore it and blame it on sleeping on my side or whatever else I would tell myself. I had a phone call that I needed to schedule a breast MRI. I had no clue that was coming. I had a feeling something was wrong so grateful that I had to get the MRI. It came back abnormal. I had to get another core biopsy on my right breast. I waited over 4 weeks for the same radiologist and the day before my biopsy they called and said my radiologist would not be in for me. I already felt dread. The radiologist I had was horrible. They had random people that worked there walking in and out of the room I was in looking for "things" for other rooms. So, there I was, laying on the cart thing with everyone seeing my girls just out in the open. I have very dense breasts for about 10 years now. Anyway, another marker put in. Got the results back. My diagnosis: ADH, Columnar Change with Atypia, Intraductal Proliferation suggestive of an intraductal papilloma, Fibrocystic changes including usual duct-type UDH and Microcalcifications. I saw the results on Mychart before the radiologist called me. I was sort of in a daze when she called and she told me everything was precancerous but said that because of the ADH they recommend complete excision. Said it was high risk and I needed to see a surgeon. Said it was amendable for SAVI SCOUT localization. The breast center told me to contact my primary doctor with questions. I left 3 messages and he did not call. Then out of the blue I received a call for an appointment with an Oncologist. I can't understand how I went from a biopsy to an Oncologist visit. ??? She ordered some blood tests, felt my breasts. Told me not to stress that when they got it out I could take some cancer drug. Then 2 days ago I had a nurse practioner from my primary care doctor's office and she didn't even have the results of my biopsy to read. It was a freaking joke. Now I have to wait all the way until October 30th for just a consult with the surgeon. There are only 3 surgeons at the breast center and they are all 3 just general surgeons. I have been trying to google everything so I can at least understand the results because nobody is wanting to help me understand all of this. My mom's side of the family had breast cancer. I have 3 Aunts that I have never met that had breast cancer. I feel like they already know I have cancer. I am 56 and disabled due to a very bad back. I have alot of stresses going on right now and I am so nervous that my hands are shaking. Do not have any friends, relatives or a mom to talk to anymore. Just my husband and when I talk about it he get's upset and yells or tells me to stop talking about it. Does anyone have any advice for me or has anyone had a diagnoses like that. So does that mean that all of those things were in the biopsy they took? 3 samples and they found all of that? My nipple seems to be hurting now also. Thanks everyone.

  • cookie54
    cookie54 Member Posts: 663
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    @terriclark83 Hi Sorry to hear you have been going through so much stress with this and now have to wait. Unfortunately much of medicine is hurry up and wait. So yes it means what they described was in the biopsy they took and it is all benign. But as I'm sure you have read here ADH can be a precursor to breast cancer or may never develop in your future. Nevertheless since it mean your cells look atypical it is best to have it removed. I had an excisional breast biopsy of ADH also and it was pretty tolerable. It does not mean you have cancer it just means you are in a higher risk group than the average woman. Typically they will keep a closer eye on you because of ADH and also family history. You surgeon may feel it is important that you have a mammo and MRI possibly six months apart so you are being imaged twice a year. Every doctor handles things differently so that is to be determined.

    So there aren't any breast surgeons in your area? Maybe the oncologist has a suggestion? How about your GYN, they may know of someone also. In the meantime keep busy and remain positive as nothing has been diagnosed that is cancer. I understand how stressful this is I went through it for years. Just take it one step at a time. Sending you good vibes and extra strength.

  • maggie15
    maggie15 Member Posts: 863
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    Hi @terriclark83 , I'm sorry that you have to come here but we can sympathize. It seems bilateral core biopsies in 11/22 removed a complex sclerosing lesion in the right breast and after an MRI a couple of months ago another core needle biopsy on the right breast removed ADH with atypia. You met with an oncologist who gave you some general information about what might happen if a malignancy was found and you have an appointment with a general surgeon on Oct 30 to discuss excisional biopsy (lumpectomy.)

    I'm not a medical professional but I live in a rural area and had a 2 1/2 year saga with my diagnosis. Complex sclerosing lesions (I had smaller versions called radial scars) are benign hardened tissue which grow in the same tissue environment that breast cancer does and sometimes hide tumors. The latest protocol is to do an excisional biopsy to remove enough tissue to check there are no malignant cells. ADH with atypia is not malignant but has the potential to progress to DCIS (stage 0) so it should be removed as well. A general surgeon can do this but you should make sure you have confidence in his ability to give you a good cosmetic result, especially if there are two separate sites. I don't know if insurance coverage and transportation are issues for you but I ended out driving 100 miles to a large cancer center with dedicated breast surgeons that was in my plan.

    Go to your surgical appointment and if possible bring someone with you for support and to take notes. It doesn't sound like your husband is a good candidate (mine wasn't - he can't deal with anything medical) but a neighbor or acquaintance might go with you. Otherwise, ask the nurse navigator if she can provide a support person (maybe someone from social work, chaplaincy or a hospital volunteer.) Ask the surgeon about the details of your pathology and what his plan would be. If you are on your own have him pause while you write the answers down.

    1. Have him draw a diagram showing where the incisions would be made, how much tissue would be removed and what your breast would look like afterward (scars and dents.)
    2. If it sounds like you would not get an acceptable result ask about mastectomy with reconstruction if that is something you would want.
    3. How will any surgery affect your back pain? Can he prescribe PT for you if necessary?
    4. What will the recovery be like? Any restrictions on activities?
    5. Don't let them fob you off on your PCP if he will not communicate with you. My PCP (now retired) ghosted me since he had made some questionable decisions documented in my medical notes. My nurse navigator couldn't get him to contact her or me. If you have to stay at your hospital ask the NN for a woman's health provider (ob/gyn) to take over your breast care.

    Hopefully everything will work out well and chances are excellent that no cancer will be found. Come back and let us know how the appointment with the surgeon goes.

  • terriclark83
    terriclark83 Member Posts: 2
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    Thank you for all of your advice. I really needed to get that out there. I appreciate it very much.