Tamoxifen - Yes or No?

Hi Gay, I'm 32 and just started on tamoxifen a few months ago. I too have been taking an antidepressant for a number of years and was happily stable on it. Unfortunately, they changed it when I started tamoxifen and I have been struggling a great deal with symptoms of anxiety and depression these last few weeks.

The treating psychiatrist told me that tamoxifen can actually cause the symptoms I'm experiencing! If I could have my time again, I would delay going on tamoxifen and find out more about the antidepressants I could take with it. I would then (maybe) change antidepressant and only go on tamoxifen once I was stable on that - giving it a fair bit of time, say 2-3 months.

The oncologist put me on tamoxifen and didn't say anything about what to look for in terms of psychological side effects and the psychiatrist neither. I wish I'd had more information and time to make a sensible choice - it all felt very hurried.

Ultimately, tamoxifen may be what stops you getting breast cancer again, but is it worth it at the expense of your mental health? There's much to think about, sending you my best wishes x

Hello, I am a 48 year old who has recently started taking Tamoxifen, to date it would be about 5 weeks since I started. I too was anxious to take it especially knowing the side effects. I had a similar breast cancer diagnosis to yourself.  I fortunately did not have the cancer spread to my lymph nodes(5 removed) also a left breast mastectomy after an initial lumpectomy (two lesions removed - one cancerous with DCIS and the other borderline LCIS) and the only treatment I have now is the tamoxifen. I was so thankful and lucky to not have to have chemo and radiation therapy.

My breast cancer was high hormone receptor positive for estrogen and progesterone and Her2 negative and because I am pre-menopausal the tamoxifen was a given. What I have noticed in myself since starting the treatment - mood swings - more than just PMT but more extreme.  I do feel I am "more down" than normal - some days I feel quite flat but I do take an anti-depressant called Lexapro and it does not clash with the tamoxifen so I can keep taking it. Some other anti-depressants can clash though.  I have uterine fibroids so I have to be watched carefully for any changes to my periods before and during- they have been heavier and more painful since I started taking the medication. Other things to be aware of - poss blood clots, risk of stroke, uterine cancer (these are extreme side effects but are known) risk of cataracts, hot flushes, nausea and vomiting, constipation, headaches, dark urine, aches to joints and bones, general pain across the bottom of stomach (area of uterus and ovaries) - be sure to ask your oncologist for a list of common side effects before you start taking, I have just been back to see mine today and of all the concerns I had... he said - yes all related to taking the tamoxifen...he assured me they would settle down after the first three months or so... Great... but if it stops me from getting breast cancer in my right breast of course, it will be worth it. 

If you google "side effects of tamoxifen" it will give you a bit of a list as I have noted above. I have experienced the more common side effects but I think you will find most women who take this will relate and agree they have also.

Ask your GP about some tests to use as a base line measurement - that can be referred back to if you experience any side effects in the future - for example a pelvic internal ultrasound and bone density scan -  a full blood test never goes astray, no doubt you might be having these regularly anyway. 

Good luck with your decision making, you have to do what is right for you and your body. Ask lots of questions to help weigh up if this treatment is right for you. 

Kind regards and all the best :-)

Michelle Taylor

My hot flushes were pretty relentless for the first 6 months I guess.There are many ladies on here that started tamoxifen the same time as me,and most of them are finding it ok.Yes,Tamoxifen really helps your bones,but ONLY if you are post menopausal.Cheers Robynxox

Thanks so much for your response, Robyn. I appreciate it.

How long did the hot flushes last? I wasn't aware that Tamoxifen helped strengthen bones. I thought it contributed to making them weaker. There you go....

Its great to hear that you are feeling so well. I am still trying to decide which way to go. I will be attending a Breast Cancer support lunch on Wednesday and will also run the question past the ladies who attend, some of whom have taken and/or are still taking Tamoxifen. . I just want to make a well informed decision.

The Oncologist did tell me that a lot of ladies can't tolerate it and stop taking it before the five year period is over. Just a bit concerned about having to change my antidepressants as the one I am taking works really well for me.

Thanks again, Robyn. Wishing you all the best.

Gay

Hello,I am about to turn 61, and I had my mastectomy 2 years ago.Like you,the difference between Tamoxifen and no Tamoxifen,is small,but as my oncologist said,' it could be the difference'.I have ADVANCED osteoporosis,and that is the reason I stay on tamoxifen,and don't go onto an aromatase inhibitor medication.Tamoxifen actually helps strengthen bones in POST MENOPAUSAL women.As for side effects,the only ones I ever had were increased hot flushes ,in the beginning.Now,2 years down the track I feel absolutely fantastic.Please feel free to ask more questions if I haven't covered everything.Cheers Robyn.xox