Advise on Tamoxifen

marywest
marywest Member Posts: 132
edited March 2014 in Breast Cancer #1
After having stage 4 breast cancer, going thru chemo and radiation, the doctor put me on arimidex, it hurt my joints so bad i had to quit taking it. Now she wants me to go on Tamoxifen. Truthfuly I am scared to take it. I have heard of emtional swings, and worst of all i have heard it could cause uterian (not spelling that right) cancer. I don't want the cancer to come back and am really doing my best to maintain my health. I am confused on whether to take it or not. Any suggestions? I am sure no one wants to argue against a doctor's advise. I am grateful for the doctors but on the same token they aren't God and they can only prescribe what they have been taught. Is anyone out there having bad side affects from this? I have gone through so much and dont' need my body to fall apart anymore than it has.

Comments

  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    we're all different
    Dear marywest,

    Yes, there are side effects to tamoxifen. it's been out longer than most of the hormone drugs, so the side effects are well known. Some experience terrible mood swings, others, it's not too bad. I've been taking it since September, and for me, I'm a little more edgy, but it is not unbearable. There are some hotflashes (thank God for the cooler weather!) but I've heard those subside after a few months.

    Tamoxifen can also cause blood clots. My onocologist has me taking a regular aspirin with it every day. And yes, it can cause uterine/endometrial cancer. It is rare, but it can happen. My onocologist wants me to be see my ob/gyn every six months for a pap smear and a uterine ultrasound. My mother was one of the rare ones and she got endometrial cancer after being on tamoxifen for five years. But one thing I want you all to understand, that I feel doesn't get enough attention, is that my mother died of breast cancer, not endometrial cancer. The endometrial was caught early, and it wasn't the big problem, it was the breast cancer. For the five years that mom was on Tamoxifen she was cancer free.

    Yes, there are side effects, but you have to decide if the side effects are better than the cancer coming back. For me, taking it is worth it. I don't want to die from breast cancer.
  • marywest
    marywest Member Posts: 132

    we're all different
    Dear marywest,

    Yes, there are side effects to tamoxifen. it's been out longer than most of the hormone drugs, so the side effects are well known. Some experience terrible mood swings, others, it's not too bad. I've been taking it since September, and for me, I'm a little more edgy, but it is not unbearable. There are some hotflashes (thank God for the cooler weather!) but I've heard those subside after a few months.

    Tamoxifen can also cause blood clots. My onocologist has me taking a regular aspirin with it every day. And yes, it can cause uterine/endometrial cancer. It is rare, but it can happen. My onocologist wants me to be see my ob/gyn every six months for a pap smear and a uterine ultrasound. My mother was one of the rare ones and she got endometrial cancer after being on tamoxifen for five years. But one thing I want you all to understand, that I feel doesn't get enough attention, is that my mother died of breast cancer, not endometrial cancer. The endometrial was caught early, and it wasn't the big problem, it was the breast cancer. For the five years that mom was on Tamoxifen she was cancer free.

    Yes, there are side effects, but you have to decide if the side effects are better than the cancer coming back. For me, taking it is worth it. I don't want to die from breast cancer.

    thankyou Dawne
    Thank you for the comment. I didnt' know about the aspirin, good to know. Happy thanksgiving. We have alot to be thankful for.
  • crselby
    crselby Member Posts: 441
    Tamoxifen
    After DCIS surgery and radiation, all I wanted was to be done with cancer treatments. I did a lot of reading on the condition, it's treatments, and side effects of treatments. I opted to undergo radiation but forgo the small percentage of advantage the hormonal therapy (Tamoxifen) would give me. The side effect possibilities scared me. I'm one of those people who thinks the less I mess with my body, the better off I will be.

    However, I am continuing to do research on anything related to my condition and treatments. As a result, two months after my initial consultation with the medical oncologist, I talked with him again and have decided to take the pill. His advice, "If you don't like it, you can stop taking it." Somehow, the flexibility of that eased my mind.

    I've been on Tamoxifen for 3 weeks. I have no more or worse hot flashes than I have had for the past 10 years of menopause. Husband reports no mood swings. I expect to have frequent pap smears for the small chance of the 2 possible uterine cancers. It's the thrombosis that scares me; I had a healthy friend drop dead from one in his lungs. They are so unpredictable.

    As someone said, I just wasn't ready to start taking anything more so soon after cancer treatments. Now I am ready to try it. And I can stop if i want, anytime!
  • marywest
    marywest Member Posts: 132
    crselby said:

    Tamoxifen
    After DCIS surgery and radiation, all I wanted was to be done with cancer treatments. I did a lot of reading on the condition, it's treatments, and side effects of treatments. I opted to undergo radiation but forgo the small percentage of advantage the hormonal therapy (Tamoxifen) would give me. The side effect possibilities scared me. I'm one of those people who thinks the less I mess with my body, the better off I will be.

    However, I am continuing to do research on anything related to my condition and treatments. As a result, two months after my initial consultation with the medical oncologist, I talked with him again and have decided to take the pill. His advice, "If you don't like it, you can stop taking it." Somehow, the flexibility of that eased my mind.

    I've been on Tamoxifen for 3 weeks. I have no more or worse hot flashes than I have had for the past 10 years of menopause. Husband reports no mood swings. I expect to have frequent pap smears for the small chance of the 2 possible uterine cancers. It's the thrombosis that scares me; I had a healthy friend drop dead from one in his lungs. They are so unpredictable.

    As someone said, I just wasn't ready to start taking anything more so soon after cancer treatments. Now I am ready to try it. And I can stop if i want, anytime!

    crselby
    You took the words out of my mouth. Thats exactly how i feel. I always look up and do as much research as I can on the drugs I had to take. My same doctor tried very hard to have me go on a trial of zomeda or zometta, after talking to my dentist and looking it up the answer was no. At that point my health was not in her best intersest, her interest was getting me to go on this trial. Anyway I am doing the same thing with tamoxifen. And your right I have the freedom to stop taking it, like I stopped taking arimidex that drug caused severe joint aches. She told me that i made a wise choice to stop it. So, like wise with this. Its not a natural drug, and survey says it causes more good than harm. I do appreciate what you had to say and will keep considering it. Thanks again, happy holidays!
  • LC815
    LC815 Member Posts: 155
    I was Stage IIB and did
    I was Stage IIB and did chemo then I took Tamoxifen for five years. I have been taking antidepressants for years and maybe they kept mood swings at bay. I didn't have any real side effects at all. I was in remission the whole time. I thought I was done with this stupid breast cancer. I stopped Tamoxifen because of that whole "only good for five years" thing. For six months I took nothing. Well, BC is baaaack and not only did I find a lump in my breast, I have two small liver mets, as well.

    I don't mean to scare you, but I felt like I was DOING SOMETHING when I was taking that pill. I guess I was.

    There are other drugs you can take right? Femara is one, I think.

    Peace on Thanksgiving.
    Linda
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    LC815 said:

    I was Stage IIB and did
    I was Stage IIB and did chemo then I took Tamoxifen for five years. I have been taking antidepressants for years and maybe they kept mood swings at bay. I didn't have any real side effects at all. I was in remission the whole time. I thought I was done with this stupid breast cancer. I stopped Tamoxifen because of that whole "only good for five years" thing. For six months I took nothing. Well, BC is baaaack and not only did I find a lump in my breast, I have two small liver mets, as well.

    I don't mean to scare you, but I felt like I was DOING SOMETHING when I was taking that pill. I guess I was.

    There are other drugs you can take right? Femara is one, I think.

    Peace on Thanksgiving.
    Linda

    I chose to not take
    I chose to not take tamoxifen and probably won't ever consider it. The side effects are not worth it to me for the very small percentage of protection, about 1%. In my cancer support group, there are so many women that took tamox and their cancer came back, so, that really made my mind up. It is an individual choice. What is good for one, is not good for another. Do what you want to do only.
  • kimber10
    kimber10 Member Posts: 47
    I have been taking it for 3
    I have been taking it for 3 months I am more irratable and emotional and have had bad headaches and naseau my oncologist suggested taking it right before I go to bed which has helped with the headaches and naseau as far as the blood clot my dr suggests walking daily or a light exercise like pilates or yoga,and of coarse the more often paps.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    kimber10 said:

    I have been taking it for 3
    I have been taking it for 3 months I am more irratable and emotional and have had bad headaches and naseau my oncologist suggested taking it right before I go to bed which has helped with the headaches and naseau as far as the blood clot my dr suggests walking daily or a light exercise like pilates or yoga,and of coarse the more often paps.

    I decided to not take
    I decided to not take tamoxifen. You should tell your oncologist and probably your gyno too about all of the side effects that you are having. They could hopefully prescibe something to help you out.

    Debby
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    another point
    I finished my rads in April & started on tamoxifen--I had DCIS. I experienced hot flashes and leg cramps but kept taking it. On Friday, November 13th I had multiple pulmonary embolisms which the docs feel was caused by tamoxifen (see the thread "well sh*t"). So apparently I am the bad side effects case.

    Maureen
  • marywest
    marywest Member Posts: 132

    another point
    I finished my rads in April & started on tamoxifen--I had DCIS. I experienced hot flashes and leg cramps but kept taking it. On Friday, November 13th I had multiple pulmonary embolisms which the docs feel was caused by tamoxifen (see the thread "well sh*t"). So apparently I am the bad side effects case.

    Maureen

    See the thread "well sh*t" ???
    I am still new to this site and extreemly grateful and blessed. However i dont' understand what that means,(in the subject line) I am ready to go read it. I so appreciate everyones advise, open and honest. It helps me make a dicision.
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    marywest said:

    See the thread "well sh*t" ???
    I am still new to this site and extreemly grateful and blessed. However i dont' understand what that means,(in the subject line) I am ready to go read it. I so appreciate everyones advise, open and honest. It helps me make a dicision.

    sorry
    Didn't mean to be hard to understand. After I was diagnosed with blood clots in the lungs, I started a thread entitled "well sh*t" because there are words we cannot use without getting the post deleted. I talked about what had happened.

    Does that help?

    Maureen
  • marywest
    marywest Member Posts: 132

    sorry
    Didn't mean to be hard to understand. After I was diagnosed with blood clots in the lungs, I started a thread entitled "well sh*t" because there are words we cannot use without getting the post deleted. I talked about what had happened.

    Does that help?

    Maureen

    EveningStar
    Where can I read the thread at????
  • marywest
    marywest Member Posts: 132

    sorry
    Didn't mean to be hard to understand. After I was diagnosed with blood clots in the lungs, I started a thread entitled "well sh*t" because there are words we cannot use without getting the post deleted. I talked about what had happened.

    Does that help?

    Maureen

    EveningStar
    Where can I read the thread at????
  • jk1952
    jk1952 Member Posts: 613
    marywest said:

    EveningStar
    Where can I read the thread at????

    I just bumped up the thread,
    I just bumped up the thread, so it should right under this one.

    Joyce
  • Alexis F
    Alexis F Member Posts: 3,598
    jk1952 said:

    I just bumped up the thread,
    I just bumped up the thread, so it should right under this one.

    Joyce

    I hope you got a chance to
    I hope you got a chance to read the thread Mary. There are so many discussions about tamox.

    Lex♥
  • carkris
    carkris Member Posts: 4,553 Member
    Alexis F said:

    I hope you got a chance to
    I hope you got a chance to read the thread Mary. There are so many discussions about tamox.

    Lex♥

    I will have to go on
    I will have to go on tamoxifen, my tumor was larger and I had nodes so I dont feel like I have a choice. I do plan to take an aspirin and take precautions, like on airplanes, sitting long periods etc.... I know I will be a wreck. My mantra these days is one day at a time and so I will thinnk about that when the time comes. ido plan on changing gynocologists because i dont like her and I will be visiting more often.