I am looking for statistical information

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msbehavin
msbehavin Member Posts: 30
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi, I posted on another forum, and Deanna suggested I post here as well. I was recently diagnosed with Breast Cancer, 60% DCIS, 40% outside the duct.  I had a lumpectomy, they said they got it all out, nothing in the nodes. Why can't I find information on Tamoxifen vs no tamoxifen therapy? Surely after all this time there has to be some statistics from women who chose not to have it. I have been doing ALOT of reading and also wondered if anyone opted not to have radiation and what are those statistics? Can anyone point me in the right direction? I also asked the oncologist for salivary hormone testing so I could see exactly how out of whack my hormones have been to see if that might have been the issue with the ER and PR positive result from the tumor, but they are really fighting this test for some reason. Has anyone else had this kind of response?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2010

    Bumping for msbehavin.... but now I don't understand the 60% DCIS and 40% "outside the duct" comment.  Do you have a copy of your pathology report?  If not, it might be a good idea to get one because the wording is a bit unusual and I don't understand if it means the 40% was invasive (IDC).  If so, that's a very important point.     Deanna

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  • kira1234
    kira1234 Member Posts: 3,091
    edited November 2010

    dlb823, I asked that same question on another thread she has.

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  • Jelson
    Jelson Member Posts: 1,535
    edited November 2010

    msbehavin,

    I am confused by your statement, "I also asked the oncologist for salivary hormone testing so I could see exactly how out of whack my hormones have been to see if that might have been the issue with the ER and PR positive result from the tumor".

    It is not that your tumor had alot of hormone or too little hormone, or one hormone is out of balance with another hormone, it is that the cancer cells in your tumor feed on estrogen. Tamoxifen for DCIS and for premenopausal women with cancer which has invaded the breast tissue, blocks the estrogen from connecting with the breast cancer cells. 

    There is a board on the Discussion Forum where you can find discussion of alternatives to  taking tamoxifen hormonal therapy.

      

    Alternative, Complementary & Holistic Treatment

    there is also information on lowering risk on the main board of BCO, 

    http://www.breastcancer.org/risk/understanding.jsp

    good luck to you!

    Julie E

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  • msbehavin
    msbehavin Member Posts: 30
    edited November 2010

    From what I have been reading, if your progesterone is out of balance with your estrogen [and testosterone] levels, then estrogen becomes a significant factor in the promotion of cancer. It is said that progesterone neutralizes the dangers of excess estrogen. I did convince my doctor to allow the tests, his fear was that I wanted it in order to start on an HRT regimen and I assured him that was not my intent. I did HRT 10 years ago after my hysterectomy for about a year, but not just estrogen, I had a combination of estrogen, progesterone and testosterone and weaned myself off of it in a year. I show symptoms of estrogen dominance, but again, I haven't read enough yet to know if that would flow over to a tumor that is ER and PR positive.. I am getting great links from you ladies and can't tell you how much I appreciate that!

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited November 2010

    misbehaven, since most women choose tamoxifin and rads there are no recent studies done on those who did not take tamoxifin or rad to give us the satistics to determine which group is more likely to have/or not a recurrence. But there are more and more women who are deciding against conventonal treatment to alternative treatment. I would love to see a study in comparing the alternative group to the conventional group.

    If there are recent studies, I am not aware of it. As far as I know studies are not done because the medical establishment feels by not recommending tamoxifin or rads that they would be putting women lives at risk. They should keep some kind of track on the bc patients, who chose not to do conventional treatment, to come up with comparable satistics.

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited November 2010

    msbehavin - There definitely are stats out there at recurrence rates for tamoxifen v. not taking tamoxifen, because the rad.onc. told them to me for my particular medical situation. She was very informed, and the information helped me make an educated decision that the very small potential benefit of taking didn't justify the risks.

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  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited November 2010

    Hi msbehavin - don't usually post much any more but saw your topic.  I had a good Oncotype DX score so did not do chemo and spoke at length to my Oncologist about Tamoxifen.  He had a computer test called Adjuvent Online which showed percentages of outcomes of various treatment options.  I believe that there was enough research/statistics to allow specialists to use this tool in helping give breast cancer patients an idea of their treatment options.  I'm sorry I do not have more to offer but I hope this is of assistance.  Tools like this however are restrictive and don't take into account everyone's individual diagnosis.

    big hugs

    Helena

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