Tamoxifen for ADH

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Mel1969
Mel1969 Member Posts: 116
edited January 2018 in High Risk for Breast Cancer

On September 15, 2017 I had a surgical excision of a papillary lesion of the left breast. Results were papilloma with ADH. The margin was not clear and I underwent a re-excision Dec 15, 2017.

Surgeon is recommending Tamoxifen. What is the general opinion? How many of you have accepted this treatment? It's my understanding that my risk is only slightly increased using the Gail model.

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  • sm627
    sm627 Member Posts: 298
    edited December 2017

    H Mel1969,

    I have ADH too. I found out this past July, and I have been taking Tamoxifen for the last 3 months. It took my body a while to adjust to it. The first two months were challenging and there were some days that were better then others, but they have calmed down over the last month. I can now live with Tamoxifen for the next 5 years. I am 33 years old and the main side effects I have are pelvic pain, vaginal discharge and the every so often muscle/joint pain in the leg. I will be seeing my medical oncologist ones every 6 months to manage the side effects.

    The main reason why I chose to take Tamoxifen is because I was diagnosed with a rare kind of breast cancer this past summer called a borderline Phyllodes Tumor in my right breast. I ended up having to have a mastectomy. When path report came back about my tumor it also showed I had ADH. Hearing that scared me so much I jumped at the chance to take Tamoxifen and reduces my chances of getting another kind of breast cancer. Another reason why I am taking it is because I have a very strong family history of breast cancer in my family.

    My medical oncologist said that the advantage to taking Tamoxifen is that after you stop taking it at either 5 or 10 years it will keep working and protect you from getting an estrogen positive breast cancer up to 20 years afterward.

    I know that this is not an easy decision to make, so ask your doctors all the questions you need to and make the right choice for you. When I went to talk to my oncologist I had a list of 30+ questions.

    What made me feel more comfortable about taking Tamoxifen is when my oncologist told me that if I had really bad side effects then I could stop taking it and not feel bad about it. She also told me that she wanted me to do well on it. if I wasn't then she did not want to negatively impact my quality of life. Right now I can say that Tamoxifen and I are learning to live together and we have our good days and times when we disagree, but for the most part I think we can be roommates for 5 years.

    Wishing you all the best in choosing the right path for you! If you have any other questions please feel free to ask.

    Hugs,

    Sara

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  • Mel1969
    Mel1969 Member Posts: 116
    edited December 2017

    Thanks Sara. I have no family history. I will discuss this further with my doctor but I am leaning towards not taking.

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  • sm627
    sm627 Member Posts: 298
    edited December 2017

    Hi Mel1969,

    I totally understand you leaning towards not taking. Wishing you the best of health and happiness.

    Hope you have a wonderful holiday season and new year with your family and friends.

    Sara

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  • Susaine
    Susaine Member Posts: 28
    edited December 2017

    Tamoxifen is prevent and treat breast cancer in women and even for men.

    I have used Tamoxifen and is safer to use no side-effects.

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  • Mel1969
    Mel1969 Member Posts: 116
    edited December 2017
    • Susaine, I'm glad you have not experienced side effects but many women do have side effects..and it increases your chance of uterine cancer and blood clots.
    • Thanks Sara, happy holidays.
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  • Lisabettina
    Lisabettina Member Posts: 6
    edited December 2017

    Hello, I am facing the same dilemma. I was told by both an American and a Canadian doctor to take Tamoxifen for my recently discovered ADH, whilst another American doctor told me that it would be better to take Raloxifene because it is safer. To be honest, I don't want to take anything that could give me side effects. My breast oncologist here in Switzerland, where I am from, told me not to take anything at the moment, so I am thoroughly confused. I took a mammography that showed microcalcifications and my biopsy report said it was ADH. There is apparently no consensus about what to do about ADH and each of the many doctors in four countries that I have consulted in the past month has told me something different, which is unsettling. Several doctors advised me to have an excisional biopsy, whilst several others told me it was completely unnecessary because my microcalcifications are so very small. I feel as if I were in Alice in Wonderland with this crazy ADH diagnosis. Can anyone on this site please help me? I signed up on this site last night in hopes of finding others in the same rocky boat.

    Thank you,

    Lisabettina

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  • Lisabettina
    Lisabettina Member Posts: 6
    edited December 2017

    Hello, I am facing the same dilemma. I was told by both an American and a Canadian doctor to take Tamoxifen for my recently discovered ADH, whilst another American doctor told me that it would be better to take Raloxifene because it is safer. To be honest, I don't want to take anything that could give me side effects. My breast oncologist here in Switzerland, where I am from, told me not to take anything at the moment, so I am thoroughly confused. I took a mammography that showed microcalcifications and my biopsy report said it was ADH. There is apparently no consensus about what to do about ADH and each of the many doctors in four countries that I have consulted in the past month has told me something different, which is unsettling. Several doctors advised me to have an excisional biopsy, whilst several others told me it was completely unnecessary because my microcalcifications are so very small. I feel as if I were in Alice in Wonderland with this crazy ADH diagnosis. Can anyone on this site please help me? I signed up on this site last night in hopes of finding others in the same rocky boat.

    Thank you,

    Lisabettina

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  • Mel1969
    Mel1969 Member Posts: 116
    edited December 2017

    I understand. I have an appt next week to discuss with oncologist. I feel my risk is low enough that I am not going to take it. I'm 48 with no family history if BC. A woman my age getting breast cancer in the next 5 years is 0.7%, my increased chance is at 1.7%. Doesnt seem to warrant chemopreventive drugs in my eyes.

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  • Silbar
    Silbar Member Posts: 163
    edited December 2017

    Lisabettina~~ I have never used Tamoxifen but I have been taking Raloxifen for years. I was started on it due to menapause and I had osteoporesis. Also have a very strong family history of breast cancer and other cancers. I did not feel safe using estrogen replacement due to this so Raloxifen was a good choice for me plus the added possibility of reduced chance of BC in the future. I have tolerated it very well. It might be an option for you.

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  • Lisabettina
    Lisabettina Member Posts: 6
    edited December 2017

    Dear Mel, Thanks for replying. Those are my sentiments exactly! How long have you had ADH? Did you have an excisional biopsy? I was just diagnosed a month ago and am reeling from all of the conflicting information.

    A Happy and Healthy New Year,

    Lisabettina

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  • Mel1969
    Mel1969 Member Posts: 116
    edited December 2017

    Lisabettini, I had a mammogram in June that showed a mass, then I had a core needle biopsy in august that showed a papillary lesion. It was recommended to remove due to dcis is commonly found in borders or below those lesions.

    The excisional biopsy was in Sept and ADH was found in the lesion and in the margins. I struggled with deciding to go back for clean margins. I spoke to two surgeons, the hemo/onco, and several doctors and they all recommended it. So Dec 15 they re-excised . In total they took 8 cm × 3 cm X 2 cm.

    It had been 4 years since the last mammogram and the mass was close to chest wall was non palpable. I did request a MRI before the second excision and it didn't show anything.

    If my chances were increased to 20% them I would reconsider the tamoxifen. So even though I will discuss it with the onco next week I already made up my mind. The only concern is the Gail model and others like it dont take into account hispanics.

    Even so, the side effects scare me, as I have other health issues. And the chances uterine cancer increase with this medication..uterine cancer is usually found in later stages without the best outcome. I'd rather take my chances with the BC which usually has a better outcome , esp with early detection.

    The decisions we have to make..but only we can decide.

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  • Myrnavilla01
    Myrnavilla01 Member Posts: 1
    edited January 2018

    hi pink sisters

    I have concern ln taking tamoxifen for my dcis

    Er /pr positive the side effects are dangerous . does any one had to made a decision better than taking this medicine. Im thinking ig im bettet off removing my ovaries. . i need to hear from lady that face this situation. Thanks god bless all of my pink sisters

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2018

    Myrna, removing your ovaries doesn't get rid of all your estrogen. That is why postmenopausal women are prescribed aromatase inhibitors. I couldn't take tamoxifen because I had a pulmonary embolism when I had ovarian cancer. I was offered Aromasin instead

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