Not sure how to proceed-new lumps after ADH

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Labmomof2
Labmomof2 Member Posts: 3
edited November 2017 in High Risk for Breast Cancer

Hi!

At 35, I was diagnosed with ADH through an excisional biopsy. At the time, I was given the option of tamoxifen, or just monitoring. I chose to monitor every six months. I have endometriosis, and tamoxifen would mean discontinuing my only source of relief, birth control.

Because of multiple risk factors, I sit at anywhere between 25-60% risk for developing bc (depending on which scale).

Six months ago, at age 40, I had a vacuum-assisted biopsy (I think that's what it was-the needle was huge and it hurt!) The results indicated a small papilloma which was completely removed, and a fibrodenoma. My surgeon left the decision for surgery up to me, but she was comfortable watching it. She said the risk of the misdiagnosis of the fibrodenoma was very low, and they aren't a problem themselves.

So, at the time, I elected for monitoring. I am due for my 6-month follow-up next week and I think I'm going to change my mind. On the mammo and US both, it appeared I had one lump. We didn't know it was two until the biopsy. I now have a benign biopsy marker on the fibrodenoma. I have extremely dense (the highest rating) and fibrocystic breasts. I've already had one papilloma with atypical hyperplasia. If manipulated, I still have very dark bloody discharge. (I don't squeeze it!)

My concern is that if another pappilloma forms where the last one was, will it be distinct? Is there danger that my density and proximity to the benign lump potentially hide another papilloma? And it it progresses unknown, it could potentially become cancerous before we know.

I was just clear for five years when this happened. I don't want to live in a near-constant state of concern. Should I just remove it, take the tamoxifen and be done with it? What would you do?

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited October 2017

    Hello,

    I had a large area excised in 2013 and ADH was found in my LEFT breast. It didn't show up on two ductograms, a mammo, an U/S, or MRI. It was incidental due to some very dark discharge that tested positive for blood. I have had an MRI every year since, and have had mammo and U/Ss every 6 months the last 2 years. I had spontaneous discharge three weeks ago from my right breast , lots of pain, was told probably mastitis by my breast surgeon and put on antibiotics.

    A few days later had my scheduled mammo and U/S and was dismissed by the radiologist as "Looks fine. See you in a year." He was very quick and dismissive (thats what I get I guess for scheduling late in the day??) , and this appt was a 6 month follow up to "3 areas of interest". (report said "extremely dense breasts and not abe to see anything due to this")

    I go for a 6 month follow up MRI in 2 months for another area of interest in my right breast that gave me non-bloody spontaneous discharge 3 weeks ago. Oddly, today I awoke to blood on my shirt, and much more after slight manipulation on the right side. I was never offered drugs for the ADH. (I am 55 and post menopausal.)

    I would have it looked at if I were you. Better to be safe. Please update when you can. (I called my BS and left a message today about the bloody discharge so I'm not sure what her protocol will be...)


    Cat

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  • Labmomof2
    Labmomof2 Member Posts: 3
    edited October 2017

    Thanks for your response, Cat. I definitely follow up as needed. I've already had the biopsy, so short of misdiagnosis from the biopsy, everything is OK. I'm just debating the best way forward.

    I'm lucky with my surgeon and breast center, they are always available for questions and I have never felt rushed, even though I plan most appointments for late in the day so I can work most of the day. If you feel that your concerns aren't being listened to, I would find a new doctor. It could be that there was nothing to be concerned about, even if it was follow-up, or it might be that you aren't getting adequate attention. Only you can decide that. You have to make the best decisions for yourself, no one will care as much as you do! find a new doc or get a second opinion.

    I can say that I have gone in for concerns and they were quick to reassure me things were fine. It was almost difficult to hear because I've been trained to be so wary. What do you mean it's fine?! I have a change!! But things were fine.

    Good luck to you.

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  • Emerald097
    Emerald097 Member Posts: 27
    edited November 2017

    I am wondering the same thing. I was diagnosed with ADH after my lumpectomy in my left breast on 10/9/17. I noticed a small circle area, like a bump that has been on my right breast on my areola. It's been there for over a month and very itchy. Last night my right breast, the whole breast was very itchy and then I found it, I have a lump in that breast now. I'm still healing from the pain of the lumpectomy I had in the left breast. I was able to get an appointment with my regular doctor tomorrow, but I'm thinking that I should call my surgeon in the morning to let him know. I really don't want to leave their office tomorrow without an ultrasound. I do have an appointment with my hematologist who is also an oncologist to discuss a treatment plan for my ADH. The nurse did mention medication has a way of preventing cancer. Who do you think I should follow up with for this new lump? This just seems unreal.

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  • Labmomof2
    Labmomof2 Member Posts: 3
    edited November 2017

    I would follow up with your specialist, I can't really tell who that is. My surgeon is a surgical oncologist and she handles all my breast concerns. I wouldn't think your primary is the right choice, unless you were using him throughout the process.

    I was lucky this go round. Apparently, the fibroadenoma went away. I find it a little difficult to believe, but it is already gone. So I had no grounds to demand/request the MRI and definitely no surgery. There's nothing there.

    I did decide to start tamoxifen prophylactically. I need to adjust other meds first, but I should start it next week some time. I'm still not completely comfortable with it, but I'm tired of dealing with uncertainity.

    Good luck to both of oyu ladies.

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  • Emerald097
    Emerald097 Member Posts: 27
    edited November 2017

    Thank you so much and if I am offered medication, then I probably will take it. I saw my internal medicine doctor today and she wants me to see the surgeon. I am having an ultrasound tomorrow morning, I really wanted to have it today. Tomorrow is not that far away. I hope that they will have the results ready before I see the oncologist this Wednesday.

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