Tamoxifen and mental health

I have been on Tamoxifen for a little over a year after initially trying the 3 AI’s with lots of side effects. With the Tamoxifen I did start with headaches and I do complain with Rib pain. Other then that I am holding my own.

I’ve been on tamoxifen for 3 years. I’m also on Effexor and Xanax to help with the anxiety. I am 52 and have night sweats, curse in my sleep and yell “help” every night. My hair has become very thin on top, my teeth are breaking. I have 4 new crowns. I’m extremely tired all the time. No one has empathy. Everyone thinks since my mastectomy, I’m back to normal and should act normal. But I don’t feel normal. It’s like I’m in fear of every thing. I present myself as “all together” then come home and remove the happy mask and crawl in bed.

It's all a balancing act as far as treatment options. You need to weigh the risks vs reward. For me personally I have chosen not to take any B/C endocrine treatment as it only gives me literally less than a 1% chance of recurrence. To me that marginal percentage is a no brainer for declining that treatment. Since it's all so different for everyone there is no one size fits all treatment, I think we all owe it to ourselves and our bodies to understand 100%completely what are our percentages of benefit before undertaking any form of treatment(s).

@tmfranz, that's a lovely photo of you. I hope you'll add it to your profile.

I'm sorry to hear that you are struggling with tamoxifen. So many members here empathize with these struggles, especially the expectations of others to get back to normal. @rhongirl has written a few eloquent posts about this here:
- Emotional aftermath following breast cancer treatment https://connect.mayoclinic.org/discussion/emotional-aftermath-following-breast-cancer-treatment/

I know @texasduchess @auntieoakley @aspapla @anjalima @naturegirl5 and so many others know what you're talking about and have walked in similar shoes, so to speak.

How are you doing today?

I am sorry you have going through all of this. I have night sweats and hot flashes all the time. I am sure I curse in my sleep too 😂, although I can’t say for sure. My hair is thinning and is salt and pepper, as in gray and white. I also am in my 50s and sometimes feel like I am 70.
I can remember feeling like everyone just wanted me to “get over it” . As soon as my hair was growing back and I gained a few pounds. Like you, I struggled to be alright when I really wasn’t, but then I decided I didn’t care what people thought about it.
I did not do well on Effexor or Xanax, the Xanax made me more depressed and the Effexor left me feeling bi-polar with no idea what the day would bring. I take Zoloft and I have been stable with that for years. I have my moments, but mostly a ton better.
Have you talked to your doctor about any of this? Has your doctor given you a time frame to take Tamoxifen?

I started taking tamoxifen 12 days ago to reduce my risk of getting breast cancer. I'm premenopausal, 48 yo, and I have struggled with anxiety and depression all my life. Since starting tamoxifen, I have become extremely emotional--like PMS on steroids. Two days ago I began having suicidal thoughts and decided tamoxifen just isn't worth it. I stopped taking it but I'm afraid my doctor is going to pressure me to start taking it again. Are there any alternatives?

Since I was diagnosed last August I have thought a lot about "quality of life." This is not just for the dying or for hospice patients. This is for everyone--young, old, sick, well. I had to ask myself_-what are my goals? And act accordingly.
Possibilities:
1. beat the cancer
2. extend life (first two are not the same. For example, very aggressive anti-cancer treatments can shorten life expectancy. And not every cause of death is cancer!)
3. live authentically

OK--so our families might go for the first--beat the cancer! And just want us alive, maybe ignoring depression, body image, side effects, etc. Fighting cancer isn't always successful, not does it confer immortality. I'm 70, with extensive co-morbities, so I'm not looking for a long life expectancy. Living is my first goal, and treating the cancer my second. I'm on an AI with minimal side effects, but I'd go right off it if it made it hard for me to function.

Obviously circumstances differ, age, prognosis, beliefs, needs etc. But personally I realized I couldn't do things just because my doctors wanted me to, or my family did. I've found some balance and a middle road. Wishing all of you the best and peace of mind.

I am so sorry to read about your anxiety and depression. I remember those days, and wish I had an answer. I realize my situation was a little different. I was 36 years old with two children 8 and 6 and a wonderful husband. I had what turned out to be a luxuary. No Chemo, No Radiation, No anything. Radical Mastectomy and Simple Mastectomy two years later and that was the end of treatment. I saw my physician for about 1 year until i was able to use my left arm again and that was the end. I remember I was making plans, becuase I did not believe I would see 45. I do not intend to sound like Mary Poppins and say everything was wonderful I have had many medical problems (which I will not bore you with) but I seem to have made it through and just keep going. With a Smile I hope. I came to realize "No one can ever know what it is like to live all your life wondering if this is your last year". This includes you. God has a PLAN for each of us. I have had a number of times when I should be dead, BUT here I am.

(92 years old). I keep trying to get out, and he keeps throwing me back. So try to understand, you are not going to leave this planet ONE DAY earlier than he wants. Kiss your husband, take the kids to the beach, buy yourself some ICE CREAM, without feeling guilty and enjoy the gift that has been given to you (another day of life). God bless and keep you in his tender arms.
Gina5009

Great explanation and brings me to the question I can’t seem to find the answer to. I requested a break from Anastrazole 10 days ago and oncologist ok’d. Was on it since June 2022 and more than 12 months in, developed joint/muscle pain and daily palpitations which just wear me out (checked by cardiologist and all is good). To early to be sure that my issues will improve. But after stopping Anast., I assume estrogen reappears and I am wondering if there are any side effects associated with the sudden release of new estrogen?

Thank you for this. I’m weighing that decision right now and it’s been challenging to find others who decided against medication. I was on tamoxifen and almost ended up in the ER after a half marathon because of what it did to my muscles. I was switched to Letrozole after my hysterectomy and within two weeks could barely walk because of the joint pain. I’m two weeks out from being off the Letrozole and have asked to stay off anything until I travel for work in March. But then they want me to try examestane.