Take Tamoxifen or Not? I am Torn! Please help : (

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chriskaput
chriskaput Member Posts: 109
in Breast Cancer #1
I have been on Tamoxifen for a little over a month and every day that I take it has been more upsetting to me. Although I do not have any side effects except for some mild hot flashes in the middle of the night and discharge that seems like alot to me. (no blood)....I really am questioning whether this is worth all the risks. I was diagnosed last May 2010: had chemo then lumpectomy then re-excision, no node involvement , then 33 rounds of rads. Have 4 more infusions of Herceptin left. I really want to make the decision to stop this medicine, it has been driving me crazy thinking about it everyday and I am becoming really depressed over the whole issue. I don't have an appt. with my onco. for another 2 weeks and haven't spoken to her about my thoughts yet.

I need your wisdom ladies!!
thank you for listening
hugs,
Chris.
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Comments

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #2
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    Hi Chris,
    Just wanted to stop in to say hi. I don't take Tamoxifen, so I can't help. I am on Femara and have any real bad side effects. Isn't it exciting to be almost done with Herceptin! I only have 3 treatments left, so you are right behind me! Good luck with your decision.

    xoxo,
    Jean
  • NJMom10
    NJMom10 Member Posts: 176
    #3
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    I just started too
    Chris...I just started too, about 3 weeks ago and I also have only mild hot flashes so far. I listened to all the more serious side effects and discussed them with the oncologist and with my gynecologist. Right now I am taking tests to establish baselines for bone density and any problems with uterine or endometrial cancer. The information I received was that the occurence of these more serious SEs was rare compared to the extreme benefits of taking the drug. I read a lot of information online also that said the same thing. For me, at this point, considering I have very few side effects, I would rather try this treatment plan, rather than not do anything. As I said before, I have seen the gynecologist and we will monitor any of the more serious effects this may have. That's just my choice. I'm willing to give it a try.
  • NJMom10
    NJMom10 Member Posts: 176
    #4
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    I just started too
    Chris...I just started too, about 3 weeks ago and I also have only mild hot flashes so far. I listened to all the more serious side effects and discussed them with the oncologist and with my gynecologist. Right now I am taking tests to establish baselines for bone density and any problems with uterine or endometrial cancer. The information I received was that the occurence of these more serious SEs was rare compared to the extreme benefits of taking the drug. I read a lot of information online also that said the same thing. For me, at this point, considering I have very few side effects, I would rather try this treatment plan, rather than not do anything. As I said before, I have seen the gynecologist and we will monitor any of the more serious effects this may have. That's just my choice. I'm willing to give it a try.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #5
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    Just curious
    about why you're so worried. Would you have had chemotherapy other than Herceptin if you had needed it? Is your concern because you have to take Tamoxifen for 5 years? It's just that Tamoxifen has been studied for so many years and proven to be effective (in most cases) at preventing a recurrence of estrogen receptor positive breast cancer.

    I got endometrial cancer all by myself. Many of the risk factors for both breast and endometrial cancers are the same, and often endometrial cancer is also estrogen receptor positive. Mine was. Not taking Tamoxifen is no guarantee that you won't develop endometrial cancer.

    Because I'm post menopausal and post hysterectomy, I'm on Arimidex. I fretted about that, too. Still do, but I feel it's more risky to not take Arimidex, particularly since my oncotype dx score was 31.

    We all have the right to choose our treatments or decline them. It's a personal choice, but be sure to learn all the facts and make informed choices. Even get a second opinion or third.

    Welcome to our group. You'll find lots of love and support here.

    Suzanne
  • BioAdoptMom
    BioAdoptMom Member Posts: 358
    #6
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    You may also want to make an
    You may also want to make an appointment to talk with your GYN. I met with mine last week as it was time for my regular check up. I am looking at 9 weeks of chemo followed by rads, then Tamoxifen. I too am concerned mainly because I have PCOS and that by itself puts me at high risk for blood clots and uterine cancer. Tam will increase those risks. My GYN had me get an ultrasound, which I had today. If the uterine lining is thickened (which it was a few years ago) he wants me to consider having my uterus and ovaries removed rather than taking the medication. That is one option I didn't know I had till I spoke with him. So, I would speak with him or her even though you are soon going to see your oncologist.

    Nancy
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
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    I was just taken off tamox (started Aug 08)
    no real side effects...leg cramps at night, night sweats, mild hot flashes, but thickening of uterus and now bleeding after 4 + years no period...so taken off tamox. about a month ago...I am being changed to diff med tomorrow. I was thinking of not taking anything at all...but asked my very trusted gyno and he feels I should take and try what ever she precribes tomorrow...not sure what yet!

    I had 2 D & Cs after internal ultrasounds each 6mths...

    Denise
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #8
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    No Regrets
    Chris... I wasn't thrilled about taking Tamoxifen for five years either. Like you, I had two lumpectomies. I was on Herceptin for a year, did chemo( 6 treatments), and rads( six weeks). It wasn't a picnic, that's for sure.

    In the end, I decided I wanted to do everything in my power to prevent cancer from invading my life and that of my family's again. I know there are no guarantees, but I am taking the drug to better my chances.

    I have been on Tamoxifen since March 2010. It took a while for my body to adjust to the drug, but I got through it. I am taking better care of my body and am committed to keeping my TEMPLE STRONG!!!

    I wish you the best on your journey.
    Ines
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #9
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    Bella Luna said:

    No Regrets
    Chris... I wasn't thrilled about taking Tamoxifen for five years either. Like you, I had two lumpectomies. I was on Herceptin for a year, did chemo( 6 treatments), and rads( six weeks). It wasn't a picnic, that's for sure.

    In the end, I decided I wanted to do everything in my power to prevent cancer from invading my life and that of my family's again. I know there are no guarantees, but I am taking the drug to better my chances.

    I have been on Tamoxifen since March 2010. It took a while for my body to adjust to the drug, but I got through it. I am taking better care of my body and am committed to keeping my TEMPLE STRONG!!!

    I wish you the best on your journey.
    Ines

    Hi Chris! I am not on
    Hi Chris! I am not on tamox, at least not yet. I am one of the few that decided against taking it. It was my decision, and, mine alone. I've read a lot about tamox, talked to bc survivors that are on it and talked to my oncologist. I just didn't think the risks were worth the side effects.

    You do what you want and what is best for you. We are all so different and have to be our own advocate and make our own choices.

    Good luck in what you choose to do.


    Sue :)
  • csr771
    csr771 Member Posts: 117
    #10
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    Just Started Tamoxifen
    I have been on Tamoxifen a couple of weeks. My onco had started me on Arimidex, but it seemed to exacerbate the arthritis in my hands. This was a big problem since I support myself with my hands. I stopped taking Arimidex to see if the stiffness and sensitvity in my hands improved. It did. When I was doing some reading on AI's I believe it stated that Arimidex was the weakest of the AI's and I couldn't tolerate it. I am now trying tamoxifin. I have read about the side affects, but I am going to give it a try. I am not having chemo or rads and need to do something. The worse side effects I have so far are increased hot flashes and night sweats. You have to do what's right for you. Although the medical community has made great strides in the treatment of cancer, there is still much to be done. Hopefully there will be something soon that has no side effects--better yet no cancer at all. Until then, we have to fight with whatever is available and have to depend on our doctors to help us make decisions that we can live with. Everything is not for everyone. Find what is right for you.
  • camul
    camul Member Posts: 2,537
    #11
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    Hi Chris, I am on Tamoxifen
    Hi Chris, I am on Tamoxifen now. I was originally diagnosed in 2002, was only on Tamoxifen for 6-9 months, cant remember exactly. But the side effects were rough. I had IDC, no nod involvement, had a mastectomy, and chemo. It was a joint decision to go off. The cancer showed its ugly self again in 2010 in the form of mets to the bones and skin. Wednesday I have my 10th chemo, I have had radiation, I am on Zometa, and Tamoxifen.

    I have questioned myself over and over, that maybe if I would have stayed on the Tamoxifen, the cancer wouldn't be back? I realize that I will never know the answer to that, but if I had a chance to do it over, I would have tuffed out the side effects. I think it is a great idea to talk to your oncologist before making any decision.

    Hope the best for you, whatever you decide.
    ~Carol
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #12
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    camul said:

    Hi Chris, I am on Tamoxifen
    Hi Chris, I am on Tamoxifen now. I was originally diagnosed in 2002, was only on Tamoxifen for 6-9 months, cant remember exactly. But the side effects were rough. I had IDC, no nod involvement, had a mastectomy, and chemo. It was a joint decision to go off. The cancer showed its ugly self again in 2010 in the form of mets to the bones and skin. Wednesday I have my 10th chemo, I have had radiation, I am on Zometa, and Tamoxifen.

    I have questioned myself over and over, that maybe if I would have stayed on the Tamoxifen, the cancer wouldn't be back? I realize that I will never know the answer to that, but if I had a chance to do it over, I would have tuffed out the side effects. I think it is a great idea to talk to your oncologist before making any decision.

    Hope the best for you, whatever you decide.
    ~Carol

    just taken off..posted prior
    I went back today to two oncologists...had blood labs that show def I am POST menopause but I have had some bleeding past few months...I DO have thickening of uterus and most likely from that..but it's been one month no tamox and today told to not take it nor did I get script for anything else! it's wait and see...

    so I thought my side effects where like nothing...but I was wrong..

    leg cramps at night (PAINFUL)
    night sweats and mild hot flashes
    can't sleep
    thickening of uterus...

    I think most are common...

    I have no clue what I may be put on next month..
    Denise
  • mrs gadget
    mrs gadget Member Posts: 118
    #13
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    Wish I had a definitive answer for you...
    Hi Chris,
    As always, you and I are on similar paths. I started Tamoxifen at the end of March and have had very few side affects. The way I see it, after dealing with my husband's bone marrow transplant and then on to my chemo etc., this is nothing and is working to my benefit right now. You have to make the choice of what works best for you and if you have a bad feeling then it might just be best to switch to something that you feel better about...

    Hope that helps...
  • Bubblesfl
    Bubblesfl Member Posts: 2
    #14
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    Taxol
    My wife has finished four sessions of chemo hell and now is started on Taxol. The side effects are hitting her awful hard. Knee pain, foot pain, it appears to hit in all the joints. It also does not help that she also had her shot to help her blood work improve.
    I am sorry but watching her hurts, chemo stinks.
  • em h
    em h Member Posts: 23
    #15
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    I have decided against it
    I have decided against it for myself. It's the toughest decision I've ever made I think.
  • fandaj
    fandaj Member Posts: 81
    #16
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    Tamoxifen
    Hi Chris, At one month before my 61st birthday, in Dec. 2007 I had a lumpectomy (no lymph nodes involved) and 45 radiation treatments a few months later. I took Tamoxifen for about 6 or 7 months. I had some really strong hot flashes...my husband could feel the heat from my body even though he was about 8 or 10 inches away from me. The other side effect I had was painful intercourse and some bleeding during sex. After looking at my personal side effects and the more serious side effects like stroke, and uterine cancer (and more), I decided to quit the medication. I hope this is helpful to you.

    Arlene
  • carkris
    carkris Member Posts: 4,553 Member
    #17
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    fandaj said:

    Tamoxifen
    Hi Chris, At one month before my 61st birthday, in Dec. 2007 I had a lumpectomy (no lymph nodes involved) and 45 radiation treatments a few months later. I took Tamoxifen for about 6 or 7 months. I had some really strong hot flashes...my husband could feel the heat from my body even though he was about 8 or 10 inches away from me. The other side effect I had was painful intercourse and some bleeding during sex. After looking at my personal side effects and the more serious side effects like stroke, and uterine cancer (and more), I decided to quit the medication. I hope this is helpful to you.

    Arlene

    My doctors have said that
    My doctors have said that the tamoxifen is more important than the chemo was. it is a targeted therapy. Since I had a large estrogen node pos cancer I am staying with the tamoxifen. I dont like it, but I want to live. It depends on your cancer, how big etc... and everyone decides what they want to do.
  • chriskaput
    chriskaput Member Posts: 109
    #18
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    carkris said:

    My doctors have said that
    My doctors have said that the tamoxifen is more important than the chemo was. it is a targeted therapy. Since I had a large estrogen node pos cancer I am staying with the tamoxifen. I dont like it, but I want to live. It depends on your cancer, how big etc... and everyone decides what they want to do.

    thank you
    all for your support and help during this crazy time! I have decided to stick with the medicine for now and I plan to have a real deep conversation about this topic with my onco. at my next appt. in a week and a half. So far so good with the SE's!!!
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #19
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    chriskaput said:

    thank you
    all for your support and help during this crazy time! I have decided to stick with the medicine for now and I plan to have a real deep conversation about this topic with my onco. at my next appt. in a week and a half. So far so good with the SE's!!!

    internal ultrasound
    MY oncologist wanted one every 6mths...my gyno said he doesn't usually do but did at her (oncologist) insitance.

    So Just keep in mind they may have you get it done-to look for thickening..which mine did show..followed by D & C each time..

    I am now off tamoxifen..2mths and waiting to see what my next step is..

    Denise
  • Lina128
    Lina128 Member Posts: 1
    #20
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    Hi Chris
    I came to this site looking for answers as to wether I should start Tamoxifen or not. I should have started taking it a week ago, but for some reason I haven't been able to get myself to take it. I am concerned about the side effects. I finished 33 Rads treaments a couple of weeks ago and prior to that AC Chemo Treatment. I guess after a break from feeling lousy, I just don't want to give up feeling somewhat well again. After reading the replies here, I have realized that the benefits of Tamoxifen could very well outweigh the risks and I think I am going to "bite the bullet" and start taking it tomorrow morning...Good luck...
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #21
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    chriskaput said:

    thank you
    all for your support and help during this crazy time! I have decided to stick with the medicine for now and I plan to have a real deep conversation about this topic with my onco. at my next appt. in a week and a half. So far so good with the SE's!!!

    I believe...
    that tamoxifen saved my life. Back when I was first diagnosed in 1987, the prognosis was not pretty for Stage 3A. The only thing "new" that I did was take tamoxifen. Tamoxifen was considered experimental in premenopausal women back then, but I went for it and I'm so glad that I did. I am a 24 year survivor!

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