Tamoxifen or Not?

Kristin N
Kristin N Member Posts: 1,968 Member
edited March 2014 in Breast Cancer #1
I had a lumpectony and am currently in radiation. When I finish radiation treatments, my oncologist wants me to try Tamoxifen. I really don't want to inre to all of the side effects it has given to a lot of women, let alone blood clots and uterine cancer. The Tamoxifen will only lower my percentage of a recurrence by 6%. I, personally, don't think that for a 6% benefit, that it is worth it. What do you think? I still have time to decide. I am just trying to educate myself on this subject. Thanks!

p.s. and the reason i wouldn't even want to try it, just to see, is that a lot of women that took it, that had the terrible side effects, kept the terrible side effects even after quitting the tamoxifen. it did permanent damage to them.
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Comments

  • tjhay
    tjhay Member Posts: 655
    #2
    Tamoxifen
    I hear ya girl, I am due to start it tomorrow, not looking forward to the possible side effects either. It really worries me when i look at all that can happen to me for just a 6% chance of it not coming back. Esp since i have a very aggresive breast cancer. But will do what I have to. Good Luck Girl Friend
    Tjhay
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #3
    I am
    taking it. I started on the 11th so it's been 12 days. No issues but we shall see.

    Maureen
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #4
    tjhay said:

    Tamoxifen
    I hear ya girl, I am due to start it tomorrow, not looking forward to the possible side effects either. It really worries me when i look at all that can happen to me for just a 6% chance of it not coming back. Esp since i have a very aggresive breast cancer. But will do what I have to. Good Luck Girl Friend
    Tjhay

    Hi Tjhay!
    I wish you the best of luck on Tamoxifen and let me know how you do on it please, if you can. I just don't know what to do. A 6% benefit, to me, just doesn't seem like risking what could happen on it, but, I don't know. I am just so confused.
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #5
    EveningStar2 said:

    I am
    taking it. I started on the 11th so it's been 12 days. No issues but we shall see.

    Maureen

    Hey Maureen!
    I am so glad that you aren't having any issues. I hope that continues for you. Just keep me updated on your taking of it, if you don't mind please. Did they tell you your percentages for taking it or not? Mine was only a 6% benefit, which I don't think is very much. Thanks!
  • rjjj
    rjjj Member Posts: 1,822 Member
    #6
    Kristin N said:

    Hey Maureen!
    I am so glad that you aren't having any issues. I hope that continues for you. Just keep me updated on your taking of it, if you don't mind please. Did they tell you your percentages for taking it or not? Mine was only a 6% benefit, which I don't think is very much. Thanks!

    Hi Kristin
    I love your new pic. I haven't yet asked what % of taking it for me will be. I will start on this soon also. Maybe we can compare notes. I won't know much more until my apt. with my onc. on Tuesday. but keep me informed on this. Thanks alot.
    hugs,
    jackie
  • tjhay
    tjhay Member Posts: 655
    #7
    EveningStar2 said:

    I am
    taking it. I started on the 11th so it's been 12 days. No issues but we shall see.

    Maureen

    Tamoxifen
    Ok so we are newbies to this supposive miracle drug, I guess we will all have to compare notes. The big thing to remember will be that not every person has the same effects, so why some of us might no have bad side effects some may. The big thing will be for each of to support the others while we walk this part of the cancer road.
    Love and Support to all of you
    Tjhay
  • Ltalcott
    Ltalcott Member Posts: 119
    #8
    hormonal therapy
    I just went through the risk/benefits analysis about chemo therapy--I don't think I would have gotten even 6% from it.

    But there has never been a question in my mind--or in the way the doctor has talked about it--that I need to do some kind of hormonal therapy. We're not sure if I'm menopausal (periods stopped artificially because of an endrometrial ablation), so I'm not sure if it will be Tamoxifen or an aromatase inhibitor.

    Seems like most people don't have terrible side effects on Tamoxifen--and I really thought the benefit was more than 6%. (might be my statistics are more?)

    I haven't heard of the side effects being permanent either--at least except for Ohilly's thinning hair--and that was from Femora, not Tamoxifen.

    Check it out--read some of the other discussion threads about dealing with Tamoxifen. All these are tough decisions.

    Lisa
  • Piggies
    Piggies Member Posts: 26
    #9
    Tamoxifen
    I've been on Tamoxifen since October 2008. Started it right after finishing radiation therapy. I did not need to have chemo, thank God! No bad side effects with the Tamoxifen. Occassional night sweats and some minor mood swings but that's about it. I'm too young for menopause and was worried about menopause like symptons. I'm being monitored by the GYN for uterus issues, but no problems are anticipated. After discussing the benefits of Tamoxifen with my oncologist, I decided to go with it and will continue to hope for the best.
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #10
    To Kristin N & Tjhay, primarily...
    Please don't be frightened by POTENTIAL Tamoxifen side effects. A 6% reduction for recurrence sounds like a LOT, to me, personally. Following surgery/chemotherapy/radiation, my risk stood at 20%. I needed the Tamoxifen to MAINTAIN that risk percentage. So, I didn't waver about it, not even for a moment. I would be willing to do just about ANYTHING to reduce my risk even further.

    Do you have the "big picture" on your own risk level? For instance, even if it's at 10% now - why in the heck wouldn't you elect to reduce it to 4%?

    Please note: I took Tamoxifen for 2 years - NO SIDE EFFECTS, at all, whatsoever. Then, got switched to Arimidex - 3+ years now, and still counting (and, still at 20% risk).

    Yes, there CAN be serious side effects, like those you mentioned. But, these happen to very FEW people. Even Tylenol & other OTC drugs have potential side effects, for gosh sakes. As my onc says - it's about WEIGHING the risks, against each other.

    Finally, it is vitally important to inform your ob/gyne that you're taking Tamoxifen - and keep up with those regular ob/gyne check-ups.

    Just food for thought... We all must make our own decisions, and way too many of them. If you don't truly understand your own "big picture" - please, ask your doctor for a more complete rationale for his/her recommendation. Then, decide accordingly.

    And, please remember that you probably hear more about troubles with Tamoxifen because people need to vent about them. This can provide an unrealistic, and possibly dangerous, perception that the side effects are more common than they really are.

    Good luck with your decisions, Kristin N & Tjhay.

    Kind regards, Susan
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #11
    Christmas Girl said:

    To Kristin N & Tjhay, primarily...
    Please don't be frightened by POTENTIAL Tamoxifen side effects. A 6% reduction for recurrence sounds like a LOT, to me, personally. Following surgery/chemotherapy/radiation, my risk stood at 20%. I needed the Tamoxifen to MAINTAIN that risk percentage. So, I didn't waver about it, not even for a moment. I would be willing to do just about ANYTHING to reduce my risk even further.

    Do you have the "big picture" on your own risk level? For instance, even if it's at 10% now - why in the heck wouldn't you elect to reduce it to 4%?

    Please note: I took Tamoxifen for 2 years - NO SIDE EFFECTS, at all, whatsoever. Then, got switched to Arimidex - 3+ years now, and still counting (and, still at 20% risk).

    Yes, there CAN be serious side effects, like those you mentioned. But, these happen to very FEW people. Even Tylenol & other OTC drugs have potential side effects, for gosh sakes. As my onc says - it's about WEIGHING the risks, against each other.

    Finally, it is vitally important to inform your ob/gyne that you're taking Tamoxifen - and keep up with those regular ob/gyne check-ups.

    Just food for thought... We all must make our own decisions, and way too many of them. If you don't truly understand your own "big picture" - please, ask your doctor for a more complete rationale for his/her recommendation. Then, decide accordingly.

    And, please remember that you probably hear more about troubles with Tamoxifen because people need to vent about them. This can provide an unrealistic, and possibly dangerous, perception that the side effects are more common than they really are.

    Good luck with your decisions, Kristin N & Tjhay.

    Kind regards, Susan

    Thank you all!
    I truly appreciate all of your opinions, statements and facts. It is just so hard to decide what to do. To me, 6% more of an advantage doesn't seem like risking what could, and, I say could happen with tamoxifen. I haven't gone over this in detail with my oncologist, as, I am still in radiation treatments. As soon as I finish radiation, I am taking a little break and will then see the oncologist inre to talking about my next step. That is why I was asking for help on here, as, I don't have all of the facts and I just needed some guidance and opinions from other bc ladies. I just want to feel good again, to feel healthy, to feel myself again. I have been dealing with this bc for months now and I am just getting so tired of it. I have read a lot about women having joint pain, having big cysts on their ovaries, getting uterine cancer, mood swings, can't sleep and various other side effects. It just scares me....
  • tasha_111
    tasha_111 Member Posts: 2,072
    #12
    Christmas Girl said:

    To Kristin N & Tjhay, primarily...
    Please don't be frightened by POTENTIAL Tamoxifen side effects. A 6% reduction for recurrence sounds like a LOT, to me, personally. Following surgery/chemotherapy/radiation, my risk stood at 20%. I needed the Tamoxifen to MAINTAIN that risk percentage. So, I didn't waver about it, not even for a moment. I would be willing to do just about ANYTHING to reduce my risk even further.

    Do you have the "big picture" on your own risk level? For instance, even if it's at 10% now - why in the heck wouldn't you elect to reduce it to 4%?

    Please note: I took Tamoxifen for 2 years - NO SIDE EFFECTS, at all, whatsoever. Then, got switched to Arimidex - 3+ years now, and still counting (and, still at 20% risk).

    Yes, there CAN be serious side effects, like those you mentioned. But, these happen to very FEW people. Even Tylenol & other OTC drugs have potential side effects, for gosh sakes. As my onc says - it's about WEIGHING the risks, against each other.

    Finally, it is vitally important to inform your ob/gyne that you're taking Tamoxifen - and keep up with those regular ob/gyne check-ups.

    Just food for thought... We all must make our own decisions, and way too many of them. If you don't truly understand your own "big picture" - please, ask your doctor for a more complete rationale for his/her recommendation. Then, decide accordingly.

    And, please remember that you probably hear more about troubles with Tamoxifen because people need to vent about them. This can provide an unrealistic, and possibly dangerous, perception that the side effects are more common than they really are.

    Good luck with your decisions, Kristin N & Tjhay.

    Kind regards, Susan

    Tamoxifen
    I have been on it since I finished chemo and before I started rads... July 2008......Night sweats (probably one night in 10) not so bad that I don't sleep through it....Other side effects/Problems......Remembering to take it. That's it. 6% hell you went through the worst to foil the beast, another 6% is well worth it, especially with little or NO side effects. Jxxxxxxx
  • tjhay
    tjhay Member Posts: 655
    #13
    tasha_111 said:

    Tamoxifen
    I have been on it since I finished chemo and before I started rads... July 2008......Night sweats (probably one night in 10) not so bad that I don't sleep through it....Other side effects/Problems......Remembering to take it. That's it. 6% hell you went through the worst to foil the beast, another 6% is well worth it, especially with little or NO side effects. Jxxxxxxx

    Tamoxifen
    Thank you all for you comments on tamoxifen. As I stared it yesterday, I promise to keep everyone informed if there are or are not side effects. To my think it is best if someone post no side effects which is what I am planning on. I start radiation next week and am planning that it will also go well. Once again thank you all for your opinions and it is true better lower the risks then go through this again.
    Tjhay
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #14
    tjhay said:

    Tamoxifen
    Thank you all for you comments on tamoxifen. As I stared it yesterday, I promise to keep everyone informed if there are or are not side effects. To my think it is best if someone post no side effects which is what I am planning on. I start radiation next week and am planning that it will also go well. Once again thank you all for your opinions and it is true better lower the risks then go through this again.
    Tjhay

    Hi, Tjhay!
    I'm so glad you're going to at least try the Tamoxifen. And, I will sincerely hope that you do not experience severe side effects - if any at all.

    Best of luck to you for your radiation treatments. Again, I'll hope it goes well for you.

    Mostly, I hope both will do the very best thing for you: knock the beast back into submission!

    Kind regards, Susan
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #15
    tjhay said:

    Tamoxifen
    Thank you all for you comments on tamoxifen. As I stared it yesterday, I promise to keep everyone informed if there are or are not side effects. To my think it is best if someone post no side effects which is what I am planning on. I start radiation next week and am planning that it will also go well. Once again thank you all for your opinions and it is true better lower the risks then go through this again.
    Tjhay

    Yes, Let's compare notes!
    As I wrote, I am till taking radiation treatments, but, will be finished in May. Thank God! I want to take a lil break then from cancer treatments. I am just so sick of all of this. But, I will have an appointment set up with my oncologist, probably sometime in late May to discuss Tamoxifen. I still am undecided if 6% is worth the risk of side effects or possible permanent side effects, even if I stop it. I think Lili had some really bad side effects and wrote about them on here. Lili...if you are around..please let me know. Good luck to you tomorrow Tjhay! Let me know how you do! I pray that you will have NO side effects!
  • mmontero38
    mmontero38 Member Posts: 1,510
    #16
    Kristin: I was on Tamoxifen
    Kristin: I was on Tamoxifen for 15 months before I started having very uncomfortable side effects. Not, everyone has them. I didn't have any clot problems, but started developing severe joint and muscle pain. The joints on my hands got so swollen that I could barely type and not make a fist. The doctor took me off it for 2 weeks and tomorrow I start Arimidex. I just wanted to stress that not everyone has the same side effects so any medication that will reduce your recurrence is worth trying. If your side effects are uncomfortable enough, then your doctor can either switch you to something else or stop it all together. Hugs, Lili

    PS: Love the kitty!
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #17
    mmontero38 said:

    Kristin: I was on Tamoxifen
    Kristin: I was on Tamoxifen for 15 months before I started having very uncomfortable side effects. Not, everyone has them. I didn't have any clot problems, but started developing severe joint and muscle pain. The joints on my hands got so swollen that I could barely type and not make a fist. The doctor took me off it for 2 weeks and tomorrow I start Arimidex. I just wanted to stress that not everyone has the same side effects so any medication that will reduce your recurrence is worth trying. If your side effects are uncomfortable enough, then your doctor can either switch you to something else or stop it all together. Hugs, Lili

    PS: Love the kitty!

    Hi Lili!
    LOL..glad you like the kitty! It even still makes me laugh when I see it. And thanks for replying to me so quickly. I knew that I had read about your having some bad side effects on Tamoxifen. Tamoxifen is the only hormone blocker that I can take because it is the only one that my insurance will pay for. My insurance won't pay for Arimidex. I can't remember why now, but, they said only Tamoxifen. I just thought that with only a 6% increase in odds..why even risk any side effects? I don't know..this all is just confusing and I am just so tired of the radiation treatments, that I just want to be done with it all. Maybe once I get done with the radiation and have some time off for my skin to heal and not have to go everyday to get zapped..I will feel differently. But, thanks Lili for responding! You are the best!
  • djteach
    djteach Member Posts: 273
    #18
    mmontero38 said:

    Kristin: I was on Tamoxifen
    Kristin: I was on Tamoxifen for 15 months before I started having very uncomfortable side effects. Not, everyone has them. I didn't have any clot problems, but started developing severe joint and muscle pain. The joints on my hands got so swollen that I could barely type and not make a fist. The doctor took me off it for 2 weeks and tomorrow I start Arimidex. I just wanted to stress that not everyone has the same side effects so any medication that will reduce your recurrence is worth trying. If your side effects are uncomfortable enough, then your doctor can either switch you to something else or stop it all together. Hugs, Lili

    PS: Love the kitty!

    tamoxifen
    Hi Kristin,
    I love the "gangsta kitty"! I took femara for 3 years after being diagnosed with stage IV b/c. The worst side effect I had was hot flashes and I had already gone through menopause. They stopped after about 2 months and that was it.

    I started on Tamoxifen in Jan. of 09 and the worst side effect I have had is a few hot flashes and those have about faded away. The tamoxifen has stopped my mets. to my lung from getting any bigger for the first time in 1 year. I understand that we look at % and numbers, but remember, they are only educated guesses. If you trust your onc.- go with that. Nobody knows you better than you.

    Love and Gentle Hugs,
    Donna
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #19
    djteach said:

    tamoxifen
    Hi Kristin,
    I love the "gangsta kitty"! I took femara for 3 years after being diagnosed with stage IV b/c. The worst side effect I had was hot flashes and I had already gone through menopause. They stopped after about 2 months and that was it.

    I started on Tamoxifen in Jan. of 09 and the worst side effect I have had is a few hot flashes and those have about faded away. The tamoxifen has stopped my mets. to my lung from getting any bigger for the first time in 1 year. I understand that we look at % and numbers, but remember, they are only educated guesses. If you trust your onc.- go with that. Nobody knows you better than you.

    Love and Gentle Hugs,
    Donna

    "Gangsta Kitty"
    Glad you like the kitty pic! It is funny! I am glad it made you smile. I am also happy that Tamoxifen has stopped your mets to the lung from getting any bigger. I wish you only the best of luck and health! And, thanks for your reply. It was nice to know that someone hasn't had terrible, awful side effects with Tamoxifen. I am just so scared of it and I just felt the % of it stopping a recurrence wasn't that big. I just don't know...
  • mimivac
    mimivac Member Posts: 2,143 Member
    #20
    Tamoxifen and Reduction of Recurrence
    Kristin,

    It is so difficult to make these decisions, especially with all the numbers being thrown around and the fact that we don't know what will happen to us, individually. Some information on Tamoxifen as I understand it: it can lower your risk by up to 50%, which is huge. I suspect that your 6% is 6 percentage points, not 6 percent, am I right? So, if you had a risk of recurrence of 12%, Tamoxifen would lower it to 6%: a reduction of half your risk, or 50%. Is that making sense? In my book, that kind of protection is worth the risk of side effects.

    About side effects: yes, women have all the side effects you mentioned. But many women do not. Susan is right: bulletin boards and reports of adverse effects are skewed toward people with worse outcomes. People who take Tamoxifen and have no problems are not signing onto message boards to write about it and seek advice. So, in a way, you are getting a worse picture of the drug than is warranted when you read message boards and people's complains. I'm not saying that you won't have side effects, just that discussion boards do not always present a complete picture. I'm not sure about permanent side effects. I'm sure it's possible, but pretty rare.

    I wish you peace and luck in deciding this difficult issue.

    Mimi
  • tjhay
    tjhay Member Posts: 655
    #21
    djteach said:

    tamoxifen
    Hi Kristin,
    I love the "gangsta kitty"! I took femara for 3 years after being diagnosed with stage IV b/c. The worst side effect I had was hot flashes and I had already gone through menopause. They stopped after about 2 months and that was it.

    I started on Tamoxifen in Jan. of 09 and the worst side effect I have had is a few hot flashes and those have about faded away. The tamoxifen has stopped my mets. to my lung from getting any bigger for the first time in 1 year. I understand that we look at % and numbers, but remember, they are only educated guesses. If you trust your onc.- go with that. Nobody knows you better than you.

    Love and Gentle Hugs,
    Donna

    tamoxifen
    I am so happy to here about the results you are having from the nets on your lung. Congats!!!!

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