Tamoxifen

Options
starling5767
starling5767 Member Posts: 2
edited August 2016 in High Risk for Breast Cancer

Hi I am new here. 49 years old and recently had to have biopsies on both breasts due to micro-calcifications found on routine mammogram and high risk due to family history (mother, grandmother, aunt). The biopsies came back negative for cancer but they found a benign radial scar. Referred to a breast health specialist who talked me into genetic testing. The genetic testing came back clear however she wants me to consider taking Tamoxifin. I am not really sure I want to do this. Some of the side effects sound nasty. I have had a hysterectomy so the uterine cancer risk is not a concern, nor is hot flashes as I already am dealing with that but hair loss, stroke, blood clots...none of that sounds appealing. Does anyone have any experience taking this drug that they would like to share with me? Trying to gather as much info as possible before I decide. Thanks so much,

Lisa


· Share on FacebookShare on Twitter

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2016

    Those side effects you mention are rare. Most women tolerate Tamoxifen pretty well. I wish I could take it or raloxifen (versus an AI), but they are contraindicated for people who have had a previous pulmonary embolism.

    That is really interesting they are prescribing that for radial scar. I have only read of them prescribing it as a risk reducer for ADH, ALH, or LCIS.

    · Share on FacebookShare on Twitter
  • starling5767
    starling5767 Member Posts: 2
    edited August 2016
    Hi !! Thank you for your reply. They are going to remove the radial scar and calcifications via surgery sometime in the next few months. She tells me to consider the Tamoxifen due to my high risk factor and the fact that I have changing breast tissue, at this time considered benign but, possibly not in the future.
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    starling, the risk of blood clots or stroke are extremely low, < 1%. After taking 5 years of tamoxifen and about 7 years of evista, my hair has become luxuriously thick and wavy (I don't know, which it was, menopause or the meds.) Like Melissa, I have never heard it suggested for a benign radial scar. Theoretically, there probably are thousands of women who are technically "high risk" (defined as > 20-25% lifetime risk, or >1.66 % 5-year risk) and should take tamox but are not (my own sisters included, due to our mom's history of ILC and my history of LCIS). It's all a balance between risk of future invasive bc and risk of serious SEs from meds. (My lifetime risk was > 36% and my 5-year risk was >4.6%, so it was definitely the choice for me; fortunately, I tolerated both meds well with minimal SEs.)


    Anne

    · Share on FacebookShare on Twitter
  • Lisa123456
    Lisa123456 Member Posts: 56
    edited August 2016

    I have a question for people who are taking or ever took Tamoxifen:

    Before prescribing Tamoxifen, did you Oncologist order tests to check if your body can respond to it? For example, I found info on two tests:

    1. CYP2D6 enzyme test and P450 2D6 pathway test -- show if the body has enzymes necessary to metabolize Tamoxifen.

    2. Test on tissue for Cav-1 expression -- absence or low level indicates Tamoxifen resistance (also see http://ajp.amjpathol.org/article/S0002-9440%2810%2961062-0/fulltext )

    The Oncologist I was referred to seemed really clueless. Not only did he say that he never heard of these tests, but he also said it didn't matter if my malignant cells were ER positive, or what my level of estrogen was (I'm perimenopausal). He just wrote the script. I'm really hesitant to start ingesting such carcinogenic substance as Tamoxifen for 5 years without knowing if it could potentially be beneficial to me.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    Lisa----my oncologist never ordered any tests. Most, if not all LCIS , is thought to be ER positive. I must've metabolized it well, I haven't had any further issues in the past 13 years since inital diagnosis in 2003. It reportedly decrease overall risk of invasive bc by 45-50%. an added benefit if that it decreases breast density, so that makes mammos easier to read and hopefully detect any problems earlier.


    anne

    · Share on FacebookShare on Twitter
  • Lisa123456
    Lisa123456 Member Posts: 56
    edited August 2016

    Thanks, Anne. I assume that my LCIS is ER and PR positive, but there's still a chance that I don't have the enzymes for metabolizing Tamoxifen. I mean, if this test exists, why wouldn't Oncologists want to know whether or not their patients should be prescribed a drug that could potentially do a lot of damage without providing any benefit?

    · Share on FacebookShare on Twitter
  • bikefam
    bikefam Member Posts: 127
    edited August 2016

    Starling, I have been on Tamox for 1 1/2 years. The only SE I have had is hot flashes, and they have almost gone away by now.

    · Share on FacebookShare on Twitter
  • msphil
    msphil Member Posts: 1,536
    edited August 2016

    hi sweetie i didnt have family history but wad diagnosed at43 i did tamoxifen for 5yrs and did ok i am now a 22 yr Survivor Praise God. msphil idc stage2 Lmast chemo and rads and 5yrs on Tamoxifen. God Bless Us All

    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited August 2016

    Tamoxifen has a low but measurable connection to uterine cancer.

    · Share on FacebookShare on Twitter

Categories