What if I don't take Tamoxefin?

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Hi. I had stage 1, grade 1 IDC. I had two lumpectomies and a sentinel node removal. The node was negative. I then asked for an MRI. I wanted to make sure their was nothing else. They found some in situ in the same breast and other questionable stuff. I ended up having a double mastectomy with reconstruction. I'm just over 2 months out. I tried taking Tamoxefin and I was not even up to the full 20m dose. I felt awful. Sore ribs, neck and shoulder. Hot flashes...naseau. I'm not sure if the pain is surgery related or med related. I see my oncologist tomorrow. I'm just wondering with an Oncotype score of 17 and a tumor size of .8cm - do I really need the meds? How does it effect my odds? Anyone else know about this? Thanks.

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  • Pessa
    Pessa Member Posts: 519
    edited November 2015

    Oncotype score is used to determine whether or not chemo will be beneficial. It's calculation is based on the assumption that you are taking 5 years of tamoxifen. It is not used to determine usefullness of taking tamoxefin

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited November 2015

    Hi Cryan,

    Welcome to BCO.

    My tumor was exactly the same as yours. I didn't have the oncotype test done. I was 51 at the time and post menopausal. I had a lumpectomy and radiatin.

    I tried both Tamoxifen and Arimidex. The nausea and vertigo were so disabling I had to stop taking them .. that was almost 9 years ago. I guess it would depend a lot on your age and how bad your symptoms are. Your doctors would most likely advise you to take it with the hopes that the side effects would lessen. My doctors were not happy I quit.

    At the time I did a great deal of research on what my stats would be with and without the medication. The difference was only 3-4%. That wasn't enough for me to try to go 5 years feeling that bad all the time.

    It's a hard decision to make and I wish you all the best.

    Bren

  • labelle
    labelle Member Posts: 721
    edited November 2015

    Based on your oncotype test and staging your OC should be able to given you a recurrence score both with and without the use of tamoxifen. Then you can make an educated choice about whether or not you want to take/try again to take Tamoxifen. If you are postmenopausal you may want to try an aromatose inhibitor instead. To take or not take these drugs is a very hard decision and one I definitely wrestled with.

  • Cinderella57
    Cinderella57 Member Posts: 12
    edited November 2015

    I started with Tamoxifen my first diagnosis. I hated it. I was only 43 and had a 4 year old who needed my energy. Tamoxifen made my joints hurt and made me depressed. I decided I needed quality of life so I told my Onco I was stopping it. He was angry and told me that if my cancer came back, it would kill me. It DID come back...twice but I'm still here after almost 16 years and I THINK I'm in remission although I have something going on that may need checked out. Bottom line is you have to do what feels right for YOU. There are no guarantees no matter what you do. I don't regret not taking it.

  • New-girl
    New-girl Member Posts: 358
    edited January 2016

    i refused to take it too. February 13,2016 was to be my 4 year cancer free anniversary. Found out today it's back. I still do not regret my 3 years of feeling good. I'll deal with this like I did last time. I have to make choices my family and I can live with.

  • Occovegirl
    Occovegirl Member Posts: 27
    edited February 2016

    Hi I am new to this. I started tamoxifen in November after 2 lumpectomies and 30 radiation treatments.. the tamoxifen side effects are killing me. Joint pain and nausea but my doctor said it's a guarantee that my bc will come back. I just feel so lousy. They say side effects should get better. Anyone else feel yucky with these meds. I still have arm pain from lymph nodes removal AND shooting breast pain everyday. But I just keep fighting. They really never tell you it's a life long battle.

  • tgtg
    tgtg Member Posts: 266
    edited February 2016

    Cryan--The decision about taking or not taking anti-hormonals depends on other factors besides your pathology and oncotype reports; age is certainly one of them, as well as general health and family status. Many of us who have declined the drug entirely are older women, for whom 3 more months of life beyond 88 is an insignificant benefit that comes at the risk of incurring other serious health problems (stroke, DVT, osteoporosis, glaucoma) that would make those 88 years + 3 months not worth it (of course, a DVT or a hip fracture might lead to an earlier death for us anyway). Needless to say, we older women are also past the child-rearing stage, and we have the time to go to the gym and take long brisk walks or run to stay fit and active.

    As for Pessa's statement above about the Oncotype test--it is true that the test was designed to show whether chemo is needed (high range #), perhaps beneficial (midrange #) or totally uncalled for (low range #); it is also true that the results are based on doing tamoxifen for 5 years. But it is not true that it is useless for deciding about not taking Tamox. A med onc who levels with you should say that, experientially, without the anti-hormonal your risk factor has been shown to be about double--so an 8% risk with tamox becomes about 15% without it. The women I know in this area (with early sage bc and low range oncotype #s) were given that information; some happily chose to take it and some declined; some were intimidated and pressured into taking it, and others were told it is their decision entirely, not the doc's. You might want to consider getting a second opinion from another med onc.

    As Labelle says, this is a difficult and very personal decision, and one that you must be comfortable with and have no regrets about, Like Cinderella and New-girl, above, I am happy with my decision (I'm now 3 years out), and will deal with a recurrence if it occurs as I dealt with the bc 3 years ago.

    Good luck as you wrestle with this decision. .

  • TruckGirl
    TruckGirl Member Posts: 7
    edited February 2016

    Hi all. I went on tamox 15 months ago, after my initial surgery. I immediately started having the common side effects - severe hot flashes, leg cramps, etc. My onco put me on Effexor XR for the hot flashes. It helped initially but caused its own problems so I went off of it a few months ago. I believe it was masking some additional tamox side effects, as now I have quite a bit of muscle, joint & back pain that I've never had in my life. I am sure it's the tamox & am now researching going off of it too. I have my bi-annual with my onco in a few weeks & will discuss further with him, but at this point I do not want to take it for 3 1/2 more years. Thank you to everyone above that gave their input - it helps those of us trying to make these difficult decisions.

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited February 2016

    It's important to keep in mind that the risk percentage that oncotype delivers is for distant recurrence, as in bones, lungs, liver, brain, not a tidy little lump somewhere else in your breast.

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