Tamoxifen and mental health

Posted by aspapla @aspapla, Jan 23, 2023

I started taking tamoxifen as part of my BC treatment a couple of weeks ago and have been really struggling with nervousness, anxiety and depression from the first days of taking this medication. The effect on me feels similar to PMS but intensified, and having it every single day.

As this is a long-term treatment (my oncologist told me I would be on this pill for 10 years as I also have a genetic predisposition), I wanted to ask other women whether such side-effects of tamoxifen subside over time (and how long would that be!), or if they are part of the whole duration of the treatment. I can't wait to go back to my usual mental state and am hoping I am still only adjusting. I have been prescribed with Effexor which I am about to start, but I also would not want to be on anti-depressants for the whole 10 years of Tamoxifen.

Thank you very much,
Aspa

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@raebaby

I'm 82. After a lumpectomy, chemo and radiation 3 years ago, I decided not to take AL's. I recntly saw my oncologist and he said he didn't epect my cancer to come back. I was HERpostive which has good results using Herceptin, so that may be part of my so far, success.

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I'm 79. After a lumpectomy, I had only radiation (33x) because my oncologist refused to order an oncotype for me. He also refused to order a ki67, despite it having been my surgeon's suggestion.
I spoke with my Texas oncologist today. (We are snowbirds). I had a scare last year and had to have a diagnostic mammogram one year ago. It turned out to be simply healing from my 1/27/2022 lumpectomy. I tried both Anastrozole and Tamoxifen and cannot tolerate either one. Anastrozole, in fact, semi-crippled me for 6 months and 2 oncologists I now have both said I should never have been put on it in the first place with my well-established history of joint pain and arthritic joints and damage to my left knee (bicycling accident). I had been in the MOST clinical study from 1997 to 2020, but the Illinois oncologist never mentioned that A.I.'s would cause inflammation in my joints, and it sure did. I tried Tamoxifen after that, and it did not go well, either. Here is my question: I was 95% estrogen positive and, today, when I asked about measures to monitor my continued good health (as you must be doing) he poo poohed the suggestion that other women on WebMD mentioned, of doing a mammogram and an MRI, alternating. He said that he "wasn't worried about it coming back in your breast."But he said he WAS worried about it coming back somewhere else, since I am not taking the adjuvant therapy drugs, either (since Aug. 30th.) My question is, "What is your doctor using to monitor you?" I guess we are using blood work, for the moment, but Signatera test came up for discussion, which is interesting, also, because my Iowa City oncologist dismissed that suggestion entirely, saying, "Medicare would never pay for that for you. Do you have an extra $20,000 laying around?" This is representative of the previous oncologist in Illinois, who, basically ignored me whenever I asked any questions, never met with me to discuss alternatives to the godawful Anastrozol and used to primarily walk out of our (only 2 in 8 months) appointments if he didn't feel like answering. (When I asked about ordering an ki67 test, as suggested by my surgeon, he said, "I won't order that for you. You'll have to get someone else" and walked out. So, I'm wondering if the Signatera test is something your doctor has mentioned to you, or that you know about, for monitoring us as time passes.

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I was on 10 mg. Tamoxifen for 18 months. It was all I could take without having spotting. I had what I would call PMS symptoms daily. I even went slightly crazy out in public a few times. I hung on on as long as I could. I would suggest you go down to 10 mg. and see if you can tolerate that. My oncologist said it was better than doing nothing. Everyone reacts to it so differently; I would never tell anyone not to try it, even if they can only do half a dose. My oncologist wanted to put me on SSRIS to counteract the Tamoxifen side effects. I guess it is a common practice. I said no. We should all be given Breast Cancer Index tests to see how badly we need to be on these kinds of medications. If I had the money, I would pay out of pocket for one, tomorrow.

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@einnoc

I'm 79. After a lumpectomy, I had only radiation (33x) because my oncologist refused to order an oncotype for me. He also refused to order a ki67, despite it having been my surgeon's suggestion.
I spoke with my Texas oncologist today. (We are snowbirds). I had a scare last year and had to have a diagnostic mammogram one year ago. It turned out to be simply healing from my 1/27/2022 lumpectomy. I tried both Anastrozole and Tamoxifen and cannot tolerate either one. Anastrozole, in fact, semi-crippled me for 6 months and 2 oncologists I now have both said I should never have been put on it in the first place with my well-established history of joint pain and arthritic joints and damage to my left knee (bicycling accident). I had been in the MOST clinical study from 1997 to 2020, but the Illinois oncologist never mentioned that A.I.'s would cause inflammation in my joints, and it sure did. I tried Tamoxifen after that, and it did not go well, either. Here is my question: I was 95% estrogen positive and, today, when I asked about measures to monitor my continued good health (as you must be doing) he poo poohed the suggestion that other women on WebMD mentioned, of doing a mammogram and an MRI, alternating. He said that he "wasn't worried about it coming back in your breast."But he said he WAS worried about it coming back somewhere else, since I am not taking the adjuvant therapy drugs, either (since Aug. 30th.) My question is, "What is your doctor using to monitor you?" I guess we are using blood work, for the moment, but Signatera test came up for discussion, which is interesting, also, because my Iowa City oncologist dismissed that suggestion entirely, saying, "Medicare would never pay for that for you. Do you have an extra $20,000 laying around?" This is representative of the previous oncologist in Illinois, who, basically ignored me whenever I asked any questions, never met with me to discuss alternatives to the godawful Anastrozol and used to primarily walk out of our (only 2 in 8 months) appointments if he didn't feel like answering. (When I asked about ordering an ki67 test, as suggested by my surgeon, he said, "I won't order that for you. You'll have to get someone else" and walked out. So, I'm wondering if the Signatera test is something your doctor has mentioned to you, or that you know about, for monitoring us as time passes.

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You sound far more intelligent than some of your doctors. I’m so sorry that you received such poor care—it’s infuriating.
And Medicare does pay for the Signatera test, I read that it costs $500, not $20,000.

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@colely

I was on 10 mg. Tamoxifen for 18 months. It was all I could take without having spotting. I had what I would call PMS symptoms daily. I even went slightly crazy out in public a few times. I hung on on as long as I could. I would suggest you go down to 10 mg. and see if you can tolerate that. My oncologist said it was better than doing nothing. Everyone reacts to it so differently; I would never tell anyone not to try it, even if they can only do half a dose. My oncologist wanted to put me on SSRIS to counteract the Tamoxifen side effects. I guess it is a common practice. I said no. We should all be given Breast Cancer Index tests to see how badly we need to be on these kinds of medications. If I had the money, I would pay out of pocket for one, tomorrow.

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And I would like a Signatera Test as well!!

REPLY

Have you ever done the Predict Breast tool that determines how beneficial it is to take endocrine therapy? You plug in your information and this tool can tell you at 5,10 and 15 years how well endocrine therapy will help with recurrence .

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@heidi3

You sound far more intelligent than some of your doctors. I’m so sorry that you received such poor care—it’s infuriating.
And Medicare does pay for the Signatera test, I read that it costs $500, not $20,000.

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I had the Signatera test and I have Medicare. I haven’t paid any of it!

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@einnoc

I'm 79. After a lumpectomy, I had only radiation (33x) because my oncologist refused to order an oncotype for me. He also refused to order a ki67, despite it having been my surgeon's suggestion.
I spoke with my Texas oncologist today. (We are snowbirds). I had a scare last year and had to have a diagnostic mammogram one year ago. It turned out to be simply healing from my 1/27/2022 lumpectomy. I tried both Anastrozole and Tamoxifen and cannot tolerate either one. Anastrozole, in fact, semi-crippled me for 6 months and 2 oncologists I now have both said I should never have been put on it in the first place with my well-established history of joint pain and arthritic joints and damage to my left knee (bicycling accident). I had been in the MOST clinical study from 1997 to 2020, but the Illinois oncologist never mentioned that A.I.'s would cause inflammation in my joints, and it sure did. I tried Tamoxifen after that, and it did not go well, either. Here is my question: I was 95% estrogen positive and, today, when I asked about measures to monitor my continued good health (as you must be doing) he poo poohed the suggestion that other women on WebMD mentioned, of doing a mammogram and an MRI, alternating. He said that he "wasn't worried about it coming back in your breast."But he said he WAS worried about it coming back somewhere else, since I am not taking the adjuvant therapy drugs, either (since Aug. 30th.) My question is, "What is your doctor using to monitor you?" I guess we are using blood work, for the moment, but Signatera test came up for discussion, which is interesting, also, because my Iowa City oncologist dismissed that suggestion entirely, saying, "Medicare would never pay for that for you. Do you have an extra $20,000 laying around?" This is representative of the previous oncologist in Illinois, who, basically ignored me whenever I asked any questions, never met with me to discuss alternatives to the godawful Anastrozol and used to primarily walk out of our (only 2 in 8 months) appointments if he didn't feel like answering. (When I asked about ordering an ki67 test, as suggested by my surgeon, he said, "I won't order that for you. You'll have to get someone else" and walked out. So, I'm wondering if the Signatera test is something your doctor has mentioned to you, or that you know about, for monitoring us as time passes.

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You sure need a new oncologist who has a heart. Why not go to M D Anderson or the MN Mayo Clinic?

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@orsejr

Have you ever done the Predict Breast tool that determines how beneficial it is to take endocrine therapy? You plug in your information and this tool can tell you at 5,10 and 15 years how well endocrine therapy will help with recurrence .

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Is there another area to see about recurrence with this tool? I only see survival rates.

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I may have written before. I had a lumpectomy, 6 weeks of radiation and chemo. I'm 82, 79 at the time. I didn't want to take Tamoxifen because I had a horrible menopause emotionally. So, I didn't . I saw my oncologist a few weeks ago. He looked at my blood work and he said he didn't expect my cancer to come back.

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@einnoc

I'm 79. After a lumpectomy, I had only radiation (33x) because my oncologist refused to order an oncotype for me. He also refused to order a ki67, despite it having been my surgeon's suggestion.
I spoke with my Texas oncologist today. (We are snowbirds). I had a scare last year and had to have a diagnostic mammogram one year ago. It turned out to be simply healing from my 1/27/2022 lumpectomy. I tried both Anastrozole and Tamoxifen and cannot tolerate either one. Anastrozole, in fact, semi-crippled me for 6 months and 2 oncologists I now have both said I should never have been put on it in the first place with my well-established history of joint pain and arthritic joints and damage to my left knee (bicycling accident). I had been in the MOST clinical study from 1997 to 2020, but the Illinois oncologist never mentioned that A.I.'s would cause inflammation in my joints, and it sure did. I tried Tamoxifen after that, and it did not go well, either. Here is my question: I was 95% estrogen positive and, today, when I asked about measures to monitor my continued good health (as you must be doing) he poo poohed the suggestion that other women on WebMD mentioned, of doing a mammogram and an MRI, alternating. He said that he "wasn't worried about it coming back in your breast."But he said he WAS worried about it coming back somewhere else, since I am not taking the adjuvant therapy drugs, either (since Aug. 30th.) My question is, "What is your doctor using to monitor you?" I guess we are using blood work, for the moment, but Signatera test came up for discussion, which is interesting, also, because my Iowa City oncologist dismissed that suggestion entirely, saying, "Medicare would never pay for that for you. Do you have an extra $20,000 laying around?" This is representative of the previous oncologist in Illinois, who, basically ignored me whenever I asked any questions, never met with me to discuss alternatives to the godawful Anastrozol and used to primarily walk out of our (only 2 in 8 months) appointments if he didn't feel like answering. (When I asked about ordering an ki67 test, as suggested by my surgeon, he said, "I won't order that for you. You'll have to get someone else" and walked out. So, I'm wondering if the Signatera test is something your doctor has mentioned to you, or that you know about, for monitoring us as time passes.

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I’m so sorry your oncologists have been treating you this way. It’s not appropriate. I get a Signatera every three months and I’m so sorry you’re oncologists have been treating you this way. It’s not appropriate. I get a Signatera every three months and I have regular Medicare (not any advantage plan) and Medicare does pay for my Signatera test. Call and ask: 1 (650) 489-9050 You need a different oncologist. Hugs to you.

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