I really need wisdom on what to do.

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Elibet
Elibet Member Posts: 8
edited June 2014 in High Risk for Breast Cancer

I have no family history of BC in either side of the family. I am 54 and post menopausal. I've had mammograms for the last four years; no problems until now. I started bio-identical hormones about two years ago. Six months ago the mammogram showed something suspicious. Six month mammo after that showed micro calcifications. Had Sterotactic biopsy the results said:

Focal atypical intraductal hyperplasia in some fragments with micropapillary configuration widespread intraductal and lobular hyperplasia with focal duct luminal-content calcifications; fibrocystic disease; no in-situ or invasive tumor seen. 

Doc wants to put me on Tamoxifin, but I think the bio-identical hormones caused this problem and that coming off of them will take me back to normal. I have to care part of the year, for my elderly mother who has dementia, heart, lung, and bone problems. I can't help her if the side effects of Tamoxifin are debilitating.

Does anyone have any information or insight that might help me make this decision? I'd really appreciate it. Thanks in advance, ElibetUndecided 

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  • 208sandy
    208sandy Member Posts: 2,610
    edited June 2011

    Elibet:

    I am no expert but try the Tamox and you can go off it if it is debilitating - and try another AI - I am one of the people who has huge se's but then I have se's to every drug out there up to and including Sudafed and Advil.  Don't beat yourself up about bio-identical hormones - unless your onc tells you for sure that is the cause and there are so many causes for bc - BUT that said I'd be very careful of any products containing soy, etc.

    Wishing you good luck with your decision.

    Sandy

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  • vmudrow
    vmudrow Member Posts: 846
    edited June 2011

    Elibet - when I was diagnoised with ALH (also microcalcifiations) I was sent to an oncologist - who also wanted me to take the Tamoxifen.  He said ALH was precancerous - I also have a very strong family history and had several benign lumps have been removed. I was told that most ladies do not have side effects with Tamoxifen - but I knew a few personally that are on it and can't stand the side effects.  I chose not to take it - and had a PBMX - it might sound drastic, but I was tired of the worry and didn't want to take Tamoxifen.  Good luck - get a couple of different doctor's opinions!! 

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  • marie5890
    marie5890 Member Posts: 3,594
    edited June 2011

    Elibet,

    Welcome. Im sorry you are having to deal with breast issues. It's causes a great deal of anxiety I know.

    I just had a couple of thoughts that you may want to consider while you make your decision of what exactly to do.

    You said

    " but I think the bio-identical hormones caused this problem and that coming off of them will take me back to normal. "

    I see that as making two assumptions that may or may not be accurate.

    1) that bio-identical hormone replacement therapy caused this. Studies do show that hormone replacement therapy significantly raises chances of BC. Im not sure what kind of studies have be done with "bio-identical replacement therapy" however.

    2) that going off of them will automatically reverse what has happened. Im not sure if that is true. Perhaps it is. I don't know.

    You mentioned your Doc. Is this your family practicioner? A breast surgeon? Do they know that you have been on bio-identical hormone replacement therapy? If not they should. This is very important information that they need to know.

    Good luck and God Bless as you make your decision. Smile 

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  • Lilah
    Lilah Member Posts: 4,898
    edited June 2011

    Get another doctor's opinion -- if both recommend the same thing it might be worth considering.  Also: discuss the bio-identical hormone question with both doctors (Marie raises some very good points). 

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  • SJW1
    SJW1 Member Posts: 244
    edited June 2011

    Elibet,

    I doubt that the bio-identical hormones caused these problems. I have never seen any studies that show this. In fact the studies I have reviewed show bio-identicals to be protective. Studies like the Women's Health Initiative which showed an increased risk of BC, were all done using synthetic, not bio-identical hormones.

    Sandie

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  • DiDel
    DiDel Member Posts: 1,329
    edited June 2011

    Elibet

    I take Tamoxifen and I am almost through my first year. I will tell you I have had ZERO side effects and I like many of us was so worried and did not want to take it. My onc sat down with me for over an hour and went through the studies on Tamoxifen, explained how it works on cancer cells and told me if I take it and have terrible side effects...I could stop. It's all preventative. I happily take my lil T every day along with my vitamins. I feel great!! There are lots of threads that address many questions on AI's or T. Feel free to PM me if you have any specific questions.

    Good luck!!

    Diane

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  • BlazerFanC
    BlazerFanC Member Posts: 71
    edited June 2011

    DiDel

    It is so good to hear from someone who isn't having SE from Tamoxifen.  I'm still early in the process, just had my 2nd rads treatment today.  I meet with the MO again at the beginning of August to talk more about Tamoxifen.  We met once before my 2nd biopsy and I heard about all the SE which are concerning to me so it helps to hear from someone having good luck on it.

    Cindy

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited June 2011

    Keep in mind that most folks that are not having problems with their meds rarely talk about them, complain or comment.  You need to weigh the benefits vs the possible side effects.

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  • LISAMG
    LISAMG Member Posts: 639
    edited June 2011

    Aromatase Inhibitor Reduces Breast Cancer Risk for Postmenopausal Women at High-Risk .

    http://www.cancer.net/patient/Cancer+News+and+Meetings/ASCO+Annual+Meetings/Research+Summaries/Breast+Cancer/Aromatase+Inhibitor+Reduces+Breast+Cancer+Risk+for+Postmenopausal+Women+at+High-Risk

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  • AJ251
    AJ251 Member Posts: 11
    edited July 2011

    My cousin has been on tamoxifen, my father as well.  Neither of them have had any side effects.  Everyone is so very different though and for every action, there is a reaction.  Personally, I opted for a BPM earlier this year and chose to protect all of my other organs by removing the external and accessory organs causing all the ruckus.  (I am 37) It is super scary to have to decide these things and I'm really sorry you are dealing with this...At the end of the day, I think you have to go with what will yield the best long-term protection of your whole body, mind and sanity.  My anxiety level has nearly left the building since my BPM.  I'm much happier and more at peace.  Good luck to you!

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  • vmudrow
    vmudrow Member Posts: 846
    edited July 2011

    AJ251 - did you ALH or ADH?  I had ALH and decided to have nipple sparing masectomies - were you able to have nipple sparing? 

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  • AJ251
    AJ251 Member Posts: 11
    edited July 2011

    Hi Vmudrow,

         Columnar hyperplasia and atypical lobular hyperplasia.  I did not do nipple sparing.  I figured why bother leaving something there....if I'm going to do this, might as well do it as much as I can.  My family tends to develop tumors that grow right behind the nipple and it isn't worth it to me.  I wouldn't be able to feel it anyway.   I'm in barbie mode right now.  :-)  How are you feeling?

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  • vmudrow
    vmudrow Member Posts: 846
    edited July 2011

    AJ251 - All I can say is good for you!! Sounds like you made the right choice for you - I haven't found hardly any ladies that have had BPM for ALH.  I agree it feels good to have that anxiety gone of just waiting for cancer to happen.  I feel great - it has been 9 months since my exchange surgery and I can do anything with no pain.  I did go bigger than my barely an A beofre surgery :)

    Hugs, Valerie

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  • Wabbit
    Wabbit Member Posts: 1,592
    edited July 2011

    iangould post reported as spam

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  • AJ251
    AJ251 Member Posts: 11
    edited August 2011

    Well, my reason for having it is that I had changes on my MRI and mammo.  It is what was planned long ago.  I had changes on 2 MRI and they wanted to biopsy....time to go.  :-) 

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