Tamoxifen for Triple Negative ???

[Jill1998]

Hi Lainey,welcome to the forum.Everybody does seem different in the side effects they get from Tamoxifen ,some people have very few side effects beyond the odd hot flush,different brands of the drug also seem to produce different side effects .I had some joint pain for the first couple of months but after that it settled down so it may be worth trying it for a few weeks see how it affects you .Jill.

[Lainey66]

Hi I am in Ireland. I have TNBC and on my last chemo I was given a prescription to have made up after I had completed my Radiotherapy. I completed it 3 weeks ago. Now I have not yet had it made up as I am concerned about side effects. However after reading some posts I may go ahead. To be honest, I dont know what to do. I am 49 and suffer with awful joint pain due to arthritis. Reading that this also causes bone pain puts me off. Im in quite a quandry.

[Brewster]

Thanks again Maryland. Have had EC and currently on taxol but can't have rads as have had it already to the chest as a youngster which is ironically the cause of the BC. So as I can't have rads am keen to have everything else they can throw at it. Will ask about hormone treatment as in my mind a +2 is still a plus if that makes sense

Thanks again xxx

[Maryland]

Hi Brewster.....my Onc always talked about me being ER positive as she said (I only remember as I wrote it down 3 years ago!!) that her benchmark (out of 😎 was >1 ER positivity, <1 low positivity, 0 negative. So she treated me as ER+, although she blasted me with 6 x FEC-T (29mm tumour, Grade 3, no lymph node involvement), 25 rads + 8 targeted booster rads just to be on the safe side 🙂 hope you get the reassurance you need about whether to opt for Tamoxifen or not. All the best, M x

[Brewster]

Thanks ladies . Being ER +2 is apparently negative but those who are weakly positive ie +3 get the medication so I will ask on Thursday and see if I can get it? Worth a try ......

[jiggyjoo]

I was ER+4 and was told as I was 'weakly' positive I would benefit from taking Tamoxifen.  I've been on it for 3 years now. All very confusing!

[lottie63]

Hi Brewster,

                     I dont think we are classed as triple neg at +3 ER nobody has ever really said, but a BC nurse did once say or your almost triple neg arent you ?? I am having a meeting with my oncologist in July when I will have been taking tamoxifen for 3 years to discuss wether I should stay on for the 5 or be changed to something else as I may be post menopausal by then and I have had a few problems with the tam, hope this helps, but tbh hospital/oncs do seem to vary with opinions on most things 🙂 good luck with your treatment

L x

[Brewster]

Maryland, thank you. Xx so we're you classed as triple negative or hormone positive , it's so confusing.

I am ER +2 PR 0, HER 1 which they say is therefore triple negative but confusing because if I was one more plus for ER. I would get hormone treatment

Must ask this week!!

[Maryland]

Hi Brewster...I too am +3ER/-PR/-HER2 and have been on Anastrozole (post-menopausal AI) for 2.5 years. My Onc recommended it; however wanted to keep an eye on my bones as can cause osteoporosis, and to monitor side effects to ensure they didn't outweigh any potential benefits. All good so far, except on the days I feel 90 (am 58 with 40 year old bones allegedly hahaha). Hope that helps? Xx

[Brewster]

Thanks for reply Lottie xx good to know xx

[lottie63]

Hi Brewster

                   My ER was + 3  and I am negative on pr/her but my onc felt I would benefit from tamoxifen ive been on it for 19 months now

L x 

[Brewster]

Has anyone with TNBC been offered tamoxifen. I ahve tnbc but the ER was +2 which is considered negative but in the USA they would consider this TN but still offer and treat with tamoxifen. Is there anyone in the UK in this situation or can offer any thoughts on this ??