I am “fortunate” to have a multifocal (2 small rumours under 1cm), node neg, no Mets,estrogen/progesterone +, and HER neg Breast cancer. Very lucky to have caught on mammogram. Have had lumpectomy, sentinel lymph node biopsies, and radiotherapy (3 weeks). I have been offered but not necessarily recommended tamoxifen. I have opinions from 4 doctors with mixed recommendations to take or not.Have also been told I would need to start within about 1 month from end of rads.I have been told my risk of recurrence is between 5-10% with tamoxifen cutting that risk in half. Hard to decide, knowing the possible side effects. Any tips to assist with decision making?

Thank you all, for your advice. It is so good to hear from others who have walked this path. I think I will give it a go and see how my body responds. I will be traveling overseas on a long planned trip so wary of the potential for clots. Will make sure I move lots during travel.MJ

Why not give it a try. I took tamoxifen for five years and honestly I barely noticed any side effects. I have recently come off it and feel maybe my thinking is a little bit clearer (but very marginal difference) and maybe my hair is a little thicker. Everybody seems to respond differently. You may find, like me, that it makes barely any difference to your well-being. I would certainly choose to take it, at least for a couple of years, if my risk of recurrence was reduced from 10% to 5%. If you find you do have horrible side-effects you can re-assess the situation but I think it's worth of try for the extra piece of mind. Although as we all know there are no guarantees either way.

Hi @MaryJoan, I have been on Tamoxifen for 9 years so far. At my 5-year post-cancer oncology appointment I was advised that further studies have proven that staying on Tamoxifen for up to 10 years has benefits. I look to come off the drug in July next year. Main side effects that I have noticed is the 'mental fog,' I am very forgetful! But use a number of techniques to combat this and initially, I was reasonably moody until I got used to it - but in saying that once I went on Tamoxifen I came out of early menopause and started getting a normal period so moods may have been the result of that and not necessarily the Tamoxifen. I manage to successfully work full time and run 2 businesses as well as play sports etc so I would say Tamoxifen has been manageable in my personal experience and as mentioned previously, if its not working for you, you can just come off it :) Hope this helps somewhat.

Hi MaryJoan, I had the same cancer and treatment as you in 2003.I was supposed to Tamoxifen and I tried for about 4mths but stopped because I couldn’t tolerate the side effects- I was 47yrs then. I thought I’d been fine.Well 7 yrs later bc came back in the same breast so I had to have a mastectomy and chemo(the worst treatments).I took Tamoxifen- I didn’t dare not to.Probably because I was through menopause,the side effects weren’t as bad.I took a small dose of antidepressant called Endep 10mg which helped a lot with hot flushes.I took Tamoxifen for 4 yrs and then got a few health issues from it so stopped.It’s been 8 yrs now and I’m ok. So even if you took the drug for awhile,it’s probably helpful.Because of radiation,I’m limited to what recon I could have.A mastectomy is hard to put up with(for me anyway) and losing my hair from chemo was awful. Ofcourse there are no guarantees with this crap disease but if I could go back in time......

Hi Mary Joan. Really simply, if you don't take Tamoxifen and did have a recurrence, how tortured would you be by the what if?No treatment is a 100% guarantee, some people take the hormone inhibitors and still get a recurrence (my sister), others take them and live long lives. Others don't take them and never have a recurrence (my mother).It's a deeply and intrinsically personal decision. Some people have no side effects. If you do try it and it makes life too difficult you can always stop taking it. We're all different, with different tolerances in different places. Self knowledge is the key. Whatever you decide it's best if it's with 'no regrets'. All the best and let us know what you decide! K xox

Tamoxifen | BCNA Online Network

13 Replies

MaryJoan
Member
7 years ago
Thank you for sharing your experience. You have done well for all you have been through.
TonyaM
Member
7 years ago
Hi MaryJoan, I had the same cancer and treatment as you in 2003.I was supposed to Tamoxifen and I tried for about 4mths but stopped because I couldn’t tolerate the side effects- I was 47yrs then. I thought I’d been fine.Well 7 yrs later bc came back in the same breast so I had to have a mastectomy and chemo(the worst treatments).I took Tamoxifen- I didn’t dare not to.Probably because I was through menopause,the side effects weren’t as bad.I took a small dose of antidepressant called Endep 10mg which helped a lot with hot flushes.I took Tamoxifen for 4 yrs and then got a few health issues from it so stopped.It’s been 8 yrs now and I’m ok. So even if you took the drug for awhile,it’s probably helpful.Because of radiation,I’m limited to what recon I could have.A mastectomy is hard to put up with(for me anyway) and losing my hair from chemo was awful. Ofcourse there are no guarantees with this crap disease but if I could go back in time......
Emma
Member
7 years ago
Hi @MaryJoan, I have been on Tamoxifen for 9 years so far. At my 5-year post-cancer oncology appointment I was advised that further studies have proven that staying on Tamoxifen for up to 10 years has benefits. I look to come off the drug in July next year. Main side effects that I have noticed is the 'mental fog,' I am very forgetful! But use a number of techniques to combat this and initially, I was reasonably moody until I got used to it - but in saying that once I went on Tamoxifen I came out of early menopause and started getting a normal period so moods may have been the result of that and not necessarily the Tamoxifen. I manage to successfully work full time and run 2 businesses as well as play sports etc so I would say Tamoxifen has been manageable in my personal experience and as mentioned previously, if its not working for you, you can just come off it :) Hope this helps somewhat.
melclarity
Member
7 years ago
@MaryJoan thanks, im 2.5yrs post 2nd diagnosis now and on Aromasin which is completely different. Chemo threw me into menopause which is tough so that together with meds has lots of side effects. I think you can always stop if you feel its too hard. I have an extra guard with Prolia injections for osteoporosis thanks to chemo but somehow it protects against BC they don't know why. X Melinda
MaryJoan
Member
7 years ago
Hi melclarity
I’m sorry you have had recurrence. You are right, knowing you have done what you could, within your control is the best anyone could ask for. I appreciate your comment. Good luck with round 2. MJ
melclarity
Member
7 years ago
I had zero side effects on tamoxifen but it was also after 1st diagnosis and only rads and pre menopause. After 4yrs i had a recurrence in spite of tamoxifen and radiation. But honestly? I felt better purely because for me i did all i could. Its incredibly individual and you have to do what you feel is gut instinct for you. It will be the right choice. Meds are annoying but knowing if im hit again inspite of treatment exercise and good diet ive done everything possible. X
MaryJoan
Member
7 years ago
Good to hear! Good luck.
Fionap2017
Member
7 years ago
Good luck with it, hope you don’t get too many side effects. I’ve just started on it around a month ago and so far I’ve had no side effects at all. I’m one of the lucky ones I guess.
MaryJoan
Member
7 years ago
Thank you all, for your advice. It is so good to hear from others who have walked this path. I think I will give it a go and see how my body responds.
I will be traveling overseas on a long planned trip so wary of the potential for clots. Will make sure I move lots during travel.
MJ
Jandy232
Member
7 years ago
Why not give it a try. I took tamoxifen for five years and honestly I barely noticed any side effects. I have recently come off it and feel maybe my thinking is a little bit clearer (but very marginal difference) and maybe my hair is a little thicker. Everybody seems to respond differently. You may find, like me, that it makes barely any difference to your well-being. I would certainly choose to take it, at least for a couple of years, if my risk of recurrence was reduced from 10% to 5%. If you find you do have horrible side-effects you can re-assess the situation but I think it's worth of try for the extra piece of mind. Although as we all know there are no guarantees either way.