Afraid to start Tamoxifen

lintx
lintx Member Posts: 697
I went through the bilateral/recon/scans and was able to avoid chemo/rad but now faced w/Tamoxifen. I'm 63 and a small person. Have walked 4 mi daily for 35 yrs and exercised at a gym forever. Never overweight and have been healthy all my life, until bc diagnosed at annual mammo in Apr 12. The side effects given are overwhelming, and I don't want to gain weight. No telling what problems it would lead to at my age. The Onco DR says I'll see this aggressive cancer again sooner rather than later if I don't take the Tamox. It was caught early, and I felt hopeful, until the Onco visits began. I was awake until 3am wrestling w/my thoughts. It has become all consuming. Is there anyone who chose to say no to treatment in my situation, or who had good results on the med?
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Comments

  • Rague
    Rague Member Posts: 3,653 Member
    I was 63 when DX'd IBC
    I was 63 when DX'd IBC (Stage III, ER+PR-, HER2-) in 8/2009. Started Femara/letrozole in 2/10 a week after starting rads. (Had 4 A/C, mast., 12 Taxol before starting 25 rads a week after last Taxol.) I, too, was very healthy, active and fit all my life - no history of any form of cancer in family for at least 4 generations.

    SE's listed do not mean that anyone will experience any of them but they have been seen singlularly or in conjunction in some. I've had no SE's from Femara/letozole though some/many do. I have not gained any weight in the 2 1/2 yrs I've been on it - in fact I've lost some (know I'm in for a lecture when I see Dr.T later this month).

    I was told by all my Drs when I hit a year post DX that they didn't expect me to still be 'here' - that was 2 yrs ago and I'm still NED. They don't have all the answers - nor do we. Live each day to it's most. Only you can know what is right for you - I did 'everything' I could and at this time I don't regret doing any of it.

    Not sure if any of that is thoughts/comments you're asking for but are my thoughts.

    Winyan - The Power Within

    Susan
  • SIROD
    SIROD Member Posts: 2,194 Member
    Tamoxifen Is A Great Drug
    Hi Lintx,

    No one likes hormonal drug treatments. If it will keep you from going from the stage cancer you are now to being stage IV (no cure, just treatments for life) it might be a good insurance to purchase. You say you want to stay healthy, I can't think of a more unhealthier approach than to bypass a drug that might in time be a benefit allowing you years of living.

    The side effects listed are overwhelming but it doesn't mean that every woman has them. It list them to protect the pharmaceutical company. Some women do gain weight but if you already are aware of that possibility you can certainly nip it in the bud. You seem to have a good regime of exercise, you more than likely won't gain weight.

    Like all drugs Tamoxifen does have some very serious side effects such as a possibility of endometrial cancer. Some women do have it but the number is few comparing to those who never do. You won't know until you try the drug to see what side effects (if any) you will have.

    Taking Tamoxifen won't guarantee that your cancer won't come back but it does give you the odds that it might not.

    I would always want to be on the side that gives me the best options than none at all.

    Wishing you the best with this decision,

    Doris
  • mamolady
    mamolady Member Posts: 796 Member
    It is scary at each stage of
    It is scary at each stage of treatment. I was the same way with the anastrazole. It took a couple of days to work up the courage to take the stupid pill. That was over a year ago. I had mild side effects that are mostly gone now. You could always try it and if you even have side effects, cross that bridge when you get to it. You should give yourself the best chance at staying cancer free.
    Cindy
  • jendrey
    jendrey Member Posts: 377
    mamolady said:

    It is scary at each stage of
    It is scary at each stage of treatment. I was the same way with the anastrazole. It took a couple of days to work up the courage to take the stupid pill. That was over a year ago. I had mild side effects that are mostly gone now. You could always try it and if you even have side effects, cross that bridge when you get to it. You should give yourself the best chance at staying cancer free.
    Cindy

    ...
    If anyone would've told me 2 years ago that I'd be gaining 45 lbs I would've said they were crazy and that it would never happen. But, it did. All of my life I could eat anything and everything and still be 103 lbs, that is before being treated for breast cancer. Before experiencing chemically induced menopause. I cannot imagine taking something that would among other things cause me to gain even more weight!

    But that's not why I elected not to take tamoxifen. In my particular case I just don't feel the trade-off in general is worth it. Not with the doctor I have currently anyway. Of course, every situation is different and only you can decide if the trade-off is worth it to you personally. =)

    You could always give it a trial run and then decide if it's truly for you or not. At least, that way you know what you're up against.

    (((Hugs)))
  • lintx
    lintx Member Posts: 697
    Rague said:

    I was 63 when DX'd IBC
    I was 63 when DX'd IBC (Stage III, ER+PR-, HER2-) in 8/2009. Started Femara/letrozole in 2/10 a week after starting rads. (Had 4 A/C, mast., 12 Taxol before starting 25 rads a week after last Taxol.) I, too, was very healthy, active and fit all my life - no history of any form of cancer in family for at least 4 generations.

    SE's listed do not mean that anyone will experience any of them but they have been seen singlularly or in conjunction in some. I've had no SE's from Femara/letozole though some/many do. I have not gained any weight in the 2 1/2 yrs I've been on it - in fact I've lost some (know I'm in for a lecture when I see Dr.T later this month).

    I was told by all my Drs when I hit a year post DX that they didn't expect me to still be 'here' - that was 2 yrs ago and I'm still NED. They don't have all the answers - nor do we. Live each day to it's most. Only you can know what is right for you - I did 'everything' I could and at this time I don't regret doing any of it.

    Not sure if any of that is thoughts/comments you're asking for but are my thoughts.

    Winyan - The Power Within

    Susan

    Thanks Susan! You're in my same age bracket and otherwise healthy,so I loved hearing from you. No cancer of any kind on either side of my family either. Gotta wonder, huh? Linda
  • lintx
    lintx Member Posts: 697
    SIROD said:

    Tamoxifen Is A Great Drug
    Hi Lintx,

    No one likes hormonal drug treatments. If it will keep you from going from the stage cancer you are now to being stage IV (no cure, just treatments for life) it might be a good insurance to purchase. You say you want to stay healthy, I can't think of a more unhealthier approach than to bypass a drug that might in time be a benefit allowing you years of living.

    The side effects listed are overwhelming but it doesn't mean that every woman has them. It list them to protect the pharmaceutical company. Some women do gain weight but if you already are aware of that possibility you can certainly nip it in the bud. You seem to have a good regime of exercise, you more than likely won't gain weight.

    Like all drugs Tamoxifen does have some very serious side effects such as a possibility of endometrial cancer. Some women do have it but the number is few comparing to those who never do. You won't know until you try the drug to see what side effects (if any) you will have.

    Taking Tamoxifen won't guarantee that your cancer won't come back but it does give you the odds that it might not.

    I would always want to be on the side that gives me the best options than none at all.

    Wishing you the best with this decision,

    Doris

    Tamoxifen
    Thanks, Doris. I appreciate your reply. I'm a stage 1 and know I have to give it a whirl. Linda
  • lintx
    lintx Member Posts: 697
    mamolady said:

    It is scary at each stage of
    It is scary at each stage of treatment. I was the same way with the anastrazole. It took a couple of days to work up the courage to take the stupid pill. That was over a year ago. I had mild side effects that are mostly gone now. You could always try it and if you even have side effects, cross that bridge when you get to it. You should give yourself the best chance at staying cancer free.
    Cindy

    Scary at ea stage
    Yes, it is scary. I hadn't considered the SE's may subside over time, if they even present themselves. Thanks for your input. Linda
  • lintx
    lintx Member Posts: 697
    jendrey said:

    ...
    If anyone would've told me 2 years ago that I'd be gaining 45 lbs I would've said they were crazy and that it would never happen. But, it did. All of my life I could eat anything and everything and still be 103 lbs, that is before being treated for breast cancer. Before experiencing chemically induced menopause. I cannot imagine taking something that would among other things cause me to gain even more weight!

    But that's not why I elected not to take tamoxifen. In my particular case I just don't feel the trade-off in general is worth it. Not with the doctor I have currently anyway. Of course, every situation is different and only you can decide if the trade-off is worth it to you personally. =)

    You could always give it a trial run and then decide if it's truly for you or not. At least, that way you know what you're up against.

    (((Hugs)))

    jendrey
    I'm thinking a trial run, as you suggested. Thanks, Linda
  • Chickadee1955
    Chickadee1955 Member Posts: 355 Member
    lintx said:

    Scary at ea stage
    Yes, it is scary. I hadn't considered the SE's may subside over time, if they even present themselves. Thanks for your input. Linda

    Linda,
    I was on Femara for

    Linda,
    I was on Femara for several months and had terrible side effects. I finally said, 'no thanks'. About 8 months later my new oncologist talked me into giving Tamoxifen a try. I agreed to try it, but wouldn't promise to stay on it. The only SE I've experienced is trouble sleeping through the night. I tend to wake up in the middle of the night and lie awake awhile before falling back to sleep. No weight gain. No other SEs that I've noticed. I agree that its worth a shot. You can always decide to discontinue. Had my choice been limited to Femara, I would have opted for nothing.
    Best wishes,
    Chickadee
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    In my opinion, the side
    In my opinion, the side effects of cancer are much, much worse!

    I believe a large part of why I have survived 25 years with Stage 3 (now 4) cancer is that I have been incredibly compliant. There are usually some adverse effects involved with any drug and they can mostly be managed. I did gain a little weight with tamoxifen (which I quickly lost when I stopped it after my course). I also gained an amazingly long remission (22 years) after initially (back in 1987) being told that my prospects with Stage 3 cancer were not good.

    Being compliant and being lucky enough to have a tumor responsive to my treatment have helped me extend my life much, much longer than I ever dreamed possible.

    As the Nike ad says, "just do it!" My opinion as a longterm survivor.
  • lintx
    lintx Member Posts: 697

    Linda,
    I was on Femara for

    Linda,
    I was on Femara for several months and had terrible side effects. I finally said, 'no thanks'. About 8 months later my new oncologist talked me into giving Tamoxifen a try. I agreed to try it, but wouldn't promise to stay on it. The only SE I've experienced is trouble sleeping through the night. I tend to wake up in the middle of the night and lie awake awhile before falling back to sleep. No weight gain. No other SEs that I've noticed. I agree that its worth a shot. You can always decide to discontinue. Had my choice been limited to Femara, I would have opted for nothing.
    Best wishes,
    Chickadee

    Chickadee
    Oh, good...that definitely helps. I'm going to call the DR tomorrow and get things going. I looked at the ceiling last night for hours myself w/out taking any meds! The whole ordeal is such a process.
  • lintx
    lintx Member Posts: 697

    Linda,
    I was on Femara for

    Linda,
    I was on Femara for several months and had terrible side effects. I finally said, 'no thanks'. About 8 months later my new oncologist talked me into giving Tamoxifen a try. I agreed to try it, but wouldn't promise to stay on it. The only SE I've experienced is trouble sleeping through the night. I tend to wake up in the middle of the night and lie awake awhile before falling back to sleep. No weight gain. No other SEs that I've noticed. I agree that its worth a shot. You can always decide to discontinue. Had my choice been limited to Femara, I would have opted for nothing.
    Best wishes,
    Chickadee

    Chickadee
    Oh,good. I've decided to call the DR tomorrow and get things started. I also looked up at the ceiling last night w/o taking any meds. This whole ordeal is a process. This is a crazy site. First it wouldn't let me post, so I did it again and now both are there!
  • lintx
    lintx Member Posts: 697

    In my opinion, the side
    In my opinion, the side effects of cancer are much, much worse!

    I believe a large part of why I have survived 25 years with Stage 3 (now 4) cancer is that I have been incredibly compliant. There are usually some adverse effects involved with any drug and they can mostly be managed. I did gain a little weight with tamoxifen (which I quickly lost when I stopped it after my course). I also gained an amazingly long remission (22 years) after initially (back in 1987) being told that my prospects with Stage 3 cancer were not good.

    Being compliant and being lucky enough to have a tumor responsive to my treatment have helped me extend my life much, much longer than I ever dreamed possible.

    As the Nike ad says, "just do it!" My opinion as a longterm survivor.

    C Cynthia
    I will!
  • sdukowitz
    sdukowitz Member Posts: 250
    I haven't had that many side
    I haven't had that many side efects since I started tamoxifin last December. I am 56 and also walk and exercise daily... A few joint pains but the hot flashes are the tings I have learned to put up with... I take it in the evening as Id rather have the hot flashes at night at home than at work during the day... I think the recurrance rate maybe being lowered is worth the few side effects .... my dr said to at least try it, you can always stop it or switch meds if the side effects are not bearable Sue D .... best wishes!
  • roseann4
    roseann4 Member Posts: 992 Member
    sdukowitz said:

    I haven't had that many side
    I haven't had that many side efects since I started tamoxifin last December. I am 56 and also walk and exercise daily... A few joint pains but the hot flashes are the tings I have learned to put up with... I take it in the evening as Id rather have the hot flashes at night at home than at work during the day... I think the recurrance rate maybe being lowered is worth the few side effects .... my dr said to at least try it, you can always stop it or switch meds if the side effects are not bearable Sue D .... best wishes!

    Curious.
    I was 58 when I was diagnosed. I'm now 61. I was told by my oncologist that Arimidex was suggested for post menapausal women. Only 10 percent of the women on this drug have weight gain. It does have many side effects but have have no obvious ones. One of the potential side effects is bone loss but mine has significantly increased because I started daily exercise. Just curious.

    I was very concerned about starting Arimidex because so many people had bad side effects like joint pain, I'm glad I didn't let fear stop me because I feel fine. Hugs.

    Roseann
  • lintx
    lintx Member Posts: 697
    sdukowitz said:

    I haven't had that many side
    I haven't had that many side efects since I started tamoxifin last December. I am 56 and also walk and exercise daily... A few joint pains but the hot flashes are the tings I have learned to put up with... I take it in the evening as Id rather have the hot flashes at night at home than at work during the day... I think the recurrance rate maybe being lowered is worth the few side effects .... my dr said to at least try it, you can always stop it or switch meds if the side effects are not bearable Sue D .... best wishes!

    Sue
    All of these comments have given me the go ahead to at least try it. Thanks so much!
  • lintx
    lintx Member Posts: 697
    roseann4 said:

    Curious.
    I was 58 when I was diagnosed. I'm now 61. I was told by my oncologist that Arimidex was suggested for post menapausal women. Only 10 percent of the women on this drug have weight gain. It does have many side effects but have have no obvious ones. One of the potential side effects is bone loss but mine has significantly increased because I started daily exercise. Just curious.

    I was very concerned about starting Arimidex because so many people had bad side effects like joint pain, I'm glad I didn't let fear stop me because I feel fine. Hugs.

    Roseann

    Roseann
    Exercise has always been a part of me. I love everything from the social aspect to the personal benefits. Thanks for your thoughts. I love hearing success stories. I'm making the call today for the med!
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    I am now 53 yrs old just
    I am now 53 yrs old just started MY final (5th) year of tamoxifen this week. I have had no side effects other then "thickening of uterus" (common) & total hysterectomy.


    Denise
  • lintx
    lintx Member Posts: 697

    I am now 53 yrs old just
    I am now 53 yrs old just started MY final (5th) year of tamoxifen this week. I have had no side effects other then "thickening of uterus" (common) & total hysterectomy.


    Denise

    Denise
    I'm loving this kind of reply because I've been so back and forth on the issue. I did order the med this morning and so thankful for your input. Linda
  • NJMom10
    NJMom10 Member Posts: 176
    lintx said:

    Denise
    I'm loving this kind of reply because I've been so back and forth on the issue. I did order the med this morning and so thankful for your input. Linda

    Took tamoxifen for 1 year then switched to anastrozole
    Hi Linda,
    Thanks to the 'experienced' ladies on this board, it sounds like you have the info you need to make this decision. I too, struggled with the Tamoxifen issue. Ordered the drug, then let it sit for 2 weeks before I started taking it. I was more worried about the risk of uterine cancer than anything else, because I was already experiencing pre-menopause SEs anyway. I took the drug for a year, then had my oncologist switch me to anastrozole, the generic of Arimidex, as I was fully menopausal then and this was one of the drugs of choice for my that stage of life. (I am 55 now, btw.)

    At my oncologists suggestion, before I started Tamoxifen, I had a check up with my gynecologist and an ultrasound to establish a baseline by which to watch for the 'thickening uterus' and possible cancer there. I had a second one done a year later and there was no change. My gynecologist will continue to monitor this.

    When I switched to Anastrozole, I experienced an increase in hot flashes at first, but those have lessened. I do daily exercise also, which helps lessen hot flashes in general.

    Let us know how you make out. Best of luck to you. Barbara