Who is doing Tamoxifen and how did you decide?

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Rachel1
Rachel1 Member Posts: 363
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Just diagnosed 3 wks. ago. One oncologist said I could start on Tamoxifen now, then stop for chemo and start again.  Another oncologist said that the protocol is to start Tamoxifen after chemo and radiation.  Just wanted to know what you all are doing. TIA Rachel

I'm 51; perimenopause-- until I begin chemo, I guess. IDC stage 2, grade 3; 2 out of 6 nodes pos. er positive

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  • sespebadger
    sespebadger Member Posts: 249
    edited June 2010

    Hi Rachel,

    I'm 49 and was in perimenopause, but no more periods after 2 months of chemo. I had a lumpectomy and lymphectomy in Dec 09. After lumpectomy (didn't get clear margins) did a MRI and discovered i had more than one tumor (bad mammogram!), so a mx was needed. Local tumor board at hospital recommended getting started with chemo rather than going to mx as 6 of 11  lymph nodes were involved. Started chemo Jan and am finishing up 6 months of chemo (3 mos. AC then 3 mos Taxol) this month. Will have a bimx  with no reconstruction july 12, radiation after that and then start on tamoxifen. Tamoxifen is to prevent recurrance. I never want to go through this again...want to get back to my active life. Good luck to you. You can do it! I believe I've gotten over the initial shock, fear, disbelief. I have gone through anger (about those yearly mammograms that didn't spot this until Stage 3) and loosing my breasts. But I've learned about great friends and my own strength. I am so ready to enjoy life as much as I can. this site is wonderful. You can compare your situation to others' and figure out if you are on the right track. Enjoy your weekend! 

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  • judyqueen20
    judyqueen20 Member Posts: 5
    edited June 2010

    hi, i was put on tamoxifen after chemo and radio. i was'nt asked about this, just told. I think because you are so grateful for any treatment at all, that you just go along with it. I did'nt suffer any problems, until the doctor tested my hormone levels, and told me i had gone through the menopause. Then i was put on Arimadex!  Now, i ache all over, every joint. I have also gained a stone in weight and have swollen ankles. But, must not complain. I'm still here! Good luck with your treatment. Tamoxifens a doddle.

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  • scrapmom40
    scrapmom40 Member Posts: 165
    edited June 2010

    Hi Rachel - I was 40 when I was diagnosed and was not menipausal at all.  Any way, I started Tamoxifen after I finished my Chemo.  I was diagnosed 1/31/08, did my Chemo from the end of April to the around the beginning of June and then started my Tamoxifen in July.  I have gone back in forth about being on it.  I wish I did not have to take it, but I keep trying to tell myself I want to do all I can to keep the cancer from coming back.  The only real complaints I have about being on it is weight gain.  There are alot of women who do not have this as a side-effect so you might not see any change.  Unfortunately for me, I think I am now menipausal and my metabolism has changed a lot over the last 2+ years with all of the cancer treatment and surgeries.

    I would suggest at least trying it and see how you do on it.  My oncologist said taking it for even just 2 years would give me some benefit.  I am almost 2 years in, but I am trying to hang in there and finish out the whole 5 years since the only issue I really have with it is the extra 10 pounds I carry around.

    Good luck with making your decision.

    Take care,

    Karen

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  • revkat
    revkat Member Posts: 763
    edited June 2010

    You've already had your surgery, right? I haven't heard of using tamoxifen between surgery and chemo, but I don't suppose it would hurt. I just wonder how much it would help either for that short term. . . do you know if it's a study or something? I do know that some folks start their tamoxifen during radiation and some wait until after.

    My diagnosis is similar to yours and I get a 10% absolute reduction of risk of recurrence by taking tamoxifen. That is, if 100 women like me take it, over the next 10 years 10 of them will be cancer free and alive because of the therapy. That's a pretty good improvement. I haven't had any side effects that impair my quality of life.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Rachel---I was diagnosed at age 46 (high risk from LCIS and family history of ILC) and took tamoxifen for 5 years with relatively minor SEs, mainly hot flashes. Just be sure to get a yearly transvaginal US to monitor both the uterine lining and the ovaries while taking it.

    Anne

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  • LeftyofAZ
    LeftyofAZ Member Posts: 23
    edited June 2010

    Hi Rachel,

    I had a hysterectomy in Feb 08, then I was diagnosed at age 51 with IDC, 2cm, stage II, in Sept 08, had a masectomy in Oct 08. Did eight rounds for chemo (A/C, Taxol & Taxotere) from Dec 08 to Apr 09 then started on Tamoxifen. I've been on it a little over a year, with only a few side effects (hot flashes and slight weight gain). I looked at it this way, if taking Tamoxifen could provide me a better chance of not having this monster come back, I'll take it!

    Good luck with your decisions and treatment.

    Lorra

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