41 BMx for Dcis/ER/PR+.. No tamoxifen

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Mommyathome
Mommyathome Member Posts: 1,111

i was diagnosed in dec 2013 w DCIS, ER/PR 80% positive. I was told that because I had BMx and it wasn't invasive I wouldn't need to take tamoxifen and because it's estrogen positive I should not take estrogen hormone therapy even though I had a TAH/BSO and it put me into surgical menopause. Bs and oncologist agreed on that but went in to gyno for post follow up after hysterectomy and she said I NEED to be put on estrogen!!! Please help! Oh by the way she also told me DCIS is NOT cancer.... Any responses are appreciative!!

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  • Ariom
    Ariom Member Posts: 6,197
    edited July 2014

    Mommyathome! So sorry you have been put into that position, but in my opinion the BS and the Oncologist trump the Gyno! I would definitely get a second opinion before starting on any HRT.

    The argument about what DCIS is, will never end, but for me, with its propensity to become invasive, it should not be trifled with, stage 0 or not.

    If you are in any doubt about DCIS, there is a lot of wonderful information on this site. I actually printed it out for family and friends, so they would know what I was dealing with when I was Dx with grade 3 DCIS.

    I wish you all the best. I am sure others will see your post, who have been in similar circumstance and will have more advice for you. Take care and let us know how you get on.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited July 2014

    Ariom,

    Thanks for your reply. Yes I'm interested to see what others say as well. I was already told by one gyno not to remove my ovaries but if I did definitely take estrogen. I panicked and met with oncologist and he said no way... I was at a peaceful place and now this gyno has me worried if I don't take estrogen I'll die early from heart disease or have bone density issues. I told her DCIS is in fact carcinoma which means cancer.... She said well its not, it's pre cancer! I told her I had ADH , those are pre cancerous. DCIS is cancer it's confined to the ducts... Ugh

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    This is one of the big controversial areas in breast cancer. The two sides are both adamant that they are right. I don't have DCIS, but I tend to refer to it as pre-invasive cancer. The problem is made worse by the fact that DCIS exists on a spectrum and some behaves more aggressively and has a higher chance of becoming invasive, and other types are closer to ADH. The fact that carcinoma is in the name has been a big part of the controversy. There is a pretty substantial push to rename it and remove carcinoma from the name. There are even places like Italy, and perhaps other places where a change in nomenclature from DCIS to DIN (Ductal Intraepithelial Neoplasia) has been established. Personally, I don't think there's an easy answer. For some small Grade 1 DCIS, I think those are more similar to a pre-cancer, and some more aggressive Grade 3 DCIS (like comedo) are more like a pre-invasive cancer. If you search the boards here, you'll find many threads debating it.

    Here are some links about the debate: http://well.blogs.nytimes.com/2013/07/29/report-s...

    http://dslrf.org/mwh/content.asp?L2=3&L3=2&SID=164

    http://www.breastcancercampaign.org/articles/medic...

    http://www.spmastologia.com.br/aulas/26-11-2009/Fa...

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    I also want to add that I have friends that have been diagnosed with DCIS and I've seen the conflict and confusion they've gone through with regards to whether they've been through cancer. I've always just told them that it doesn't matter whether it's viewed as cancer or pre-cancer. There's no contest there. I'd happily give up my IDC badge if I could. None of us have the same experience in breast cancer land, just know that you went through a lot and you did it to be here as long as you can. 

    As for other parts of your post. It's likely the reason you're not on Tamoxifen is because you had a BMX. If you hadn't, you probably would be. I will say that even though I may not agree with her style, I understand her concern. As someone diagnosed with TNBC at 34 and then found out I am BRCA1+, I'm playing the odds right now of trying not to wait too late to remove my ovaries before I develop ovarian cancer (my risk is 55%), and trying to balance that with reducing the substantial risk of heart disease and bone loss if I remove my ovaries very early. I passed my BRCA1 mutation to my daughter. She's 20 and just had her PBMX in March. She sees a gynecologic oncologist who wants her ovaries out absolutely no later than 32 because our mutation is so dangerous. His stance is if we don't remove our ovaries, we won't live long enough to have that heart attack anyway. Your GYN may have come off in a rough manner, but her concern for your heart and bone health are part of her specialty if those risks are related to your hormones created in part by those female parts she's tasked with monitoring. The position you're in with regards to HRT after DCIS and TAH/BSO is one lots of women face. Perhaps it would be best to see if your MO could consult with a Gynecologic Oncologist and determine the best way to protect your heart and bones while not increasing your risk for breast cancer issues? 

    Best of luck.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited July 2014

    Lint roller derby 

    Thank you for your post !!! Definitely a lot to think about- too much! This whole thing just sucks! With my family history:

    Mom and maternal aunt- breast cancer

    Maternal gram and mat great aunt- ovarian

    Father-heart disease

    I just want to do what I can to be here to watch my kids grow, graduate, get married, have kids etc

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    I can certainly understand your exasperation and concern. It sounds like you didn't know before your meeting with the GYN that there was a debate about whether DCIS is cancer or pre-cancer. If so, that can catch you off guard if you didn't know there was a school of thought that differed; and it's certainly not a nice way to find out that info. I feel for women who have had invasive treatment for DCIS, but still have question (either their own or because of someone else) about whether they had cancer or not. It's a tough spot and as I said, we see a lot of that debate here on BCO. Really, the only treatment option that is different between DCIS and invasive cancer is chemo--which is never given for DCIS. I think eventually, DCIS will be split into 2 or more categories with the more aggressive version retaining the DCIS name and the more indolent versions getting a name that removes carcinoma from the classification. LCIS has a similar situation, but even though carcinoma is in the name with it, the great majority agree it isn't cancer, but rather a high-risk condition. 

    I'm an avid (rabid?) genealogist, and I've since discovered a shocking amount of heart-related deaths in one line of my tree. Figures that I have this extra-rare BRCA1 mutation, yet no family history. But no known genetic heart conditions, and my family tree in one line is riddled with heart-related deaths. Part of that is what's worrying me about having the BSO. We do the best we can with what we have. That's what you're doing. I'm sure your GYN  was coming from a place of concern; it just sounds like she wasn't so good at expressing it.

    Not to be nosy, but with the breast and ovarian cancer in your family, have you gone for genetic counseling? 

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited July 2014

    Yes. Braca and Bart negative. Me, and my mom. She may be getting panel done.

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    A negative result, while relieving, can also be frustrating if you see a clear history and don't have answers for why it's happening. If you're talking about the full BROCA panel from the University of Washington, I think it's a good move and I wish you the best of luck.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited July 2014

    Yes, it's frustrating and bs feels strongly that there's something genetic, there has to be!!!! I'm not sure she just said the panel......but it's supposed to cover a lot...

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