Dx today with Atypical Ductal Hyperplasia

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Emerald097
Emerald097 Member Posts: 27
edited October 2017 in High Risk for Breast Cancer

I had a lumpectomy on 10/9/17 after having a fnb around the end of august for a complex cyst. I have two cysts still in the breast that my surgeon did the lumpectomy on. He said that he didn't have to take them out because they were just cysts. I am concerned about them since having my diagnoses of ADH today since they are on the same side. I felt like my follow up appointment was rushed and I don't feel like everything I had to ask was answered and I felt like I really couldn't ask anything because he was rushing out. I did send a copy of the report to my hematologist this evening. My friend told me to do holistic approaches to prevent anything from happening, and I am just wondering will that work. I'm also wondering if I should ask my doctor about Tamoxifen and if I should have an MRI done on that breast later on. I am really glad to have results since this has been going on since July. Having the two other cysts in my breast makes me uncomfortable and I really hope that they got all of the bad cells out. Should I have a biopsy done on the other cysts because of my final diagnoses?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2017

    Emerald, simple cysts are easily identifiable on ultrasound and absolutely benign. The don't turn into anything else. 60% of us have fibrocystic breasts.

    Depending on any other risk factors you have, a referral to an oncologist to discuss tamoxifen would be reasonable.


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  • Emerald097
    Emerald097 Member Posts: 27
    edited October 2017

    Thank you MelissaDallas and I should hopefully hear from my hematologist tomorrow. I may even schedule an appointment with my internal medicine doctor to discuss the results with her. I just don't like to feel rushed at appointments.

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  • mystic88
    mystic88 Member Posts: 155
    edited October 2017

    Emerald, I too have ADH. My mass was surgically excised just over a month ago.

    Do you have a breast surgeon? From my experience, it is recommended for ADH masses to be removed as 10-20% of them can also have DCIS. In terms of my personal experience- I do have family history of BC, genetic tests were negative, and no other cysts or masses have been noted in the past. I initially found the mass on a self exam, my GP ordered an ultrasound which lead to a biopsy, ADH was diagnosed, and then I was referred to a breast surgeon. Before surgery she ordered an MRI to make sure there were no other masses. She did not think tamoxifen was necessary, and my plan is now monitoring with mammograms and MRIs alternating every 6 months.

    If you have any more specific questions please PM me!

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  • Emerald097
    Emerald097 Member Posts: 27
    edited October 2017

    Mystic88, I had a lumpectomy done on 10/9/17 and he took out the area of the complex cysts. He placed the wire before I had the surgery. During this whole process, I have never had a MRI. I do have two other cysts in that same breast that he left but he says that they are just cysts and they don't need to take them out. I found my complex cyst on a self exam 3 months after I had my mammogram. I also found the other two cysts on a self exam after I had my fine needle biopsy on the complex cyst. I might ask my doctor about MRIs. Thank you for your help.

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  • mystic88
    mystic88 Member Posts: 155
    edited October 2017

    Emerald, it's a good idea to have an MRI and make sure there is nothing else going on in there. Sometimes they can pick up more details that mammo and US can miss.

    Good luck!

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  • Emerald097
    Emerald097 Member Posts: 27
    edited October 2017

    I really want to have an MRI done just to make sure they didn't miss anything. The nurse from my hematologist office called me today, she's also an oncologist. They want me to come in within a month to discuss a plan for me. She told that there is a high risk program for the people that are in the high risk category. She's going to make a plan for me and she said that I would have to be monitored more often. She also mentioned the meds, but I told her that I did some research and I was concerned about trying them because I have a blood clotting disorder. I'm on blood thinners for the rest of my life. I had a pulmonary emobolism last year along with a mini stroke. In 2014 I had a stroke either during or after my partial hysterectomy that caused me to become disabled. I also have a lot of other medical issues very complicated ones. If they wanted to do meds it would be a big decision. I would have to discuss with all of my doctors. I have like 9 specialists. I just feel relieved to have some type of plan that will be in place for me. I am disappointed about how my surgeon handled the results. He did not explain anything out to me like I needed. He was just in a rush that day I guess. I'm so grateful for this site.

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  • mystic88
    mystic88 Member Posts: 155
    edited October 2017

    I'm sorry to hear that! It definitely makes it tricky to add on medications when you have concurrent diseases. Good thing is, it sounds like your hematologist/oncologist has a plan of action for monitoring. I'm sure MRIs will be part of it at some point.

    Keep us updated!

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  • Emerald097
    Emerald097 Member Posts: 27
    edited October 2017

    Mystic88, I'm very grateful to have good doctors and they keep a good watch over me. I'm going to try not to worry too much and I'm going to continue to focus on healing.

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