Tamoxifen for 10 years??

[Imi99]

Hi Gillian

I've been taking tamoxifen for just over 5 years now and was also advised this year to continue taking for another 5 years. I'm a little younger at 47 and haven't gone through menopause. My tumour was also grade 2 but larger and had spread to lymph nodes so even though they recently said I'd not had an extremely high hormone positive response, I still feel ok taking it for longer. They talked about doing a test after a year to see if I'd started the menopause and if that was the case they'd suggest I switched to an alternative.

Worth noting, that in the US, I've been told that 10yrs on tamoxifen is the norm.

Another thing worth mentioning - have you tried different manufacturers of tamoxifen as I've found some have less side effects that others. Suspect you have if you've taken for 5 yrs but thought it worth a mention.

Hope that helps
Sarah

[oasthouses]

Many thanks - it's SO difficult, isn't it? Gillianx

[stressy_messy]

Hi I finished Tamoxifen end of March last year and was told no need for another 5 years but then in January  I was talking with nurse at my appointment for lymphoedema check and she said she would query it because of new research. A few days later I had a call from an Oncologist who thought that I could benefit from another 5 years even though I had been off it for 10 months. I had a blood test as am 52 and results showed I am post menopause so was prescribed letrozole. Been on it for about a month and flushes are a bit of a pain again but no othe side effects at the moment. I was a bit shocked and if I'm honest a bit peed off that she thought I could benefit from another 5 years as the cancer was grade 2 and quite small, 17mm, but it was 8/8 ER/PR + and had vascular invasion and lymph node involved and thats why she said it could be worthwhile . I know I don't have to take it and the cancer might not ever recur if I don't but if it does at least I know it's not because I didn't carry on, so I will lol. Xx

[A97]

Hi Gillian

My doctor did a process of elimination and it was decided that as my syptoms had become increasing worse memopause was the considered to be the culprit. No one has mentioned an alternative drug. i have been officially discharged from oncology and my GP has taken over my medication so I will have to mention it to her. It is a depressing thought that I have another 5 years to go on Tamoxifen but I am determined to cope and continue to enjoy myself, with the continued support of my family and friend and believe me they are so needed.

Dawn xx

[oasthouses]

Hi Dawn

Thanks! Like you, still have side effects - painful joints, cramp, tiredness etc - after 5 years....May I ask, how was it discovered you were going through the menopause. I had a blood test and was told it was inconclusive as tamoxifen masked the results. Also was a different drug considered to replace tamoxifen at that stage?

Gillianx

[A97]

Hi Gillian

I am also at the 5 year stage and have been advised to stay on Tamoxifen for 10 years. My turmour was 3cm and was cleanly removed along with lymph nodes and like yours was highly hormone positive. Also had 4 weeks of radio therepy. Over the past few months I have been suffering really bad hot sweats I have always had them since being on Tamoxifen but they have got considerably worse. I have been prescribed Dixriat to combat these as apparently I am now going through the menopause at 50, however not sure I can cope with the depression that is a common side effect with these tablets I have good days and bad days a good job my family are supportive and understanding.

Dawn

[oasthouses]

I reached 5 years post dx last Sept. Tumour was 1.2cm, grade 2 and highly hormone positive - not in lymph nodes. Had lumpectomy and radiotherapy in 2008 and have been on (horrible!) tamoxifen ever since. My consultant told me that had the tumour been more aggressive and larger, his advice would be to stay on tamoxifen - if smaller and less aggressive, advice would be to come off. No idea if I have been through menopause but at 54 I probably have - test was inconclusive. Interested to know what advice is being given to other women at 5 year stage - please!
Many thanks - Gillian