New to site- er status and tamoxifen

First time posting so I hope it’s right. Ok so diagnosed dec 2012 dcis/idc. 14mm lump no spread but grade three do had wle fect chemo then finished rads 7 weeks ago. Been on tamoxifen for about 5 weeks now and I hate it! Haven’t had a decent nights sleep constant hot flushes and all bloated. Oh and lovely fine hairy turned was premenopausal but now in chemopause! Anyway what I’m wondering is this. My onc told me my er status was three so if the side effects were bad I could stop, but because I was 39 at diagnosis was genetic tested (negative) and they called it triple negative. does anyone else know the range or the numbers?

Hi Mccaan

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BCC Moderator

Thank you I think I will do that tomorrow.

Hi Mccaan, The range of the numbers are from 1 to 8 for ER PR status 8 being very highly hormone driven. I would ask your Oncologist what the benefit percentage is for you taking tamoxifen. My score was 8 so a no brainer for me, I stuck with the Tamoxifen for the 5 years with some rotten side effects but am glad that I did. Not really sure why they said triple negative as your ER score was 3, although thats not very high there still could be some benefit from Tamoxifen. Think you have to weigh up the benefit virsus quality of life.

Triple negative means the ER and PR status is negative so Tamoxifen or AI’s would not benefit and HER2 status is also negative so you wouldn’t need Herceptin
Best wishes Melxx

Hi Mccaan
Im in the same situation as you my score is also 3 but im a bit older 49 when dx , and my onc said the same try the Tamoxifen as it has benefits but if side effects are too bad he would re think , Im negative on HER2 and PR but not sure we would be classed as triple neg as although a score of 3 is low its still a score, it all gets very confusing , I am percevering with the Tam as hard as it is I have dreadful s/e’s with it but I dont want to stop as any benefit is better than none, I hope things settle for you soon, good luck hun

Yes it is all confusing. I’m sure the onc said something about borderline but chemo brain at the time so can’t remember! I think I might ask if I could try 10mg as I would prefer to take the tamoxifen to cover all bases I suppose. Thanks all