I just wondered if anyone has remained on hormone treatment after five years and the reason they were given? I currently take Letrozole and thought I would come off it after this time but need to stay on for a further two to three years, am thinking that my brca2 diagnosis a while ago has something to do with it but not too sure.
A few people I have spoken to have said that the drugs tend to do damage after five years but don’t know how true this is.
I can’t bring myself to have preventative surgery on the other breast as yet and wonder if this is another reason.
I shouldn’t complain but I am curious as to why I am still taking it, very grateful that I am being looked after so well but still couldn’t ask the consultant why!
Any advice more than welcome
my mum was on tamoxifen/femara/arimidex trial then tamoxifen when she was treated in 2005 and only started taking the arimidex permanently from about 2006 after she had sideffects from the tamox so was allowed an extra year as they wanted her to be on 5 years of the AI.
i know there is some research that suggests patients on tamoxifen for 2 years shpuld then still have 5 years of AI… i havent heard anything about prolonged use of AI if you were on it from the outset apart from similar to what you have posted not that it can be detrimental in longer term use but that it is not proven to be any more effective in longer term use.
I was diagnosed in 2003, in 2004 started 5 years of tamoxifen, now half way through 3yaers of femara, I haven’t been told what I will go on to next. My cancer was stage 2 and of 17 nodes removed 6 were cancerous.
My surgeon did say last time I saw him that the side effects of being on Tamoxifen after 5 years outweighed the good that the drug was doing. I haven’t heard of many people staying on tamoxifen after 5 years.
For me personally I am finding femara far harder to cope with than Tamoxifen. My feeling is at this point I will try anything that I am offered but I don’t know what I will be offered next
My mum was on tamoxifen for a couplpe of years, then switched to arimidex and was due to stop that but I was diagnosed then.The same team treat me so decided to err on the side of caution and she was kept on it and has been on hormone therapy for 8 yrs now. She doesn’t mind taking the tablet if it keeps the cancer away (she doesn’t have mets but I do).
My dx was Nov 08, after chemo, surgery & rads, I was put on Femara AKA Letrozole for 8 years but felt awful,quite poorly and aching all over. At a check-up 6 months later I complained about the aches & pains and the surgeon changed me to another AI, Exemastane which was worse. At my onc appointment 3 months later I complained again and he said he didn
t understand why Id not been put on Tamoxifen and would I like to try it?. I did and it suits me so much better but as yet I don
t know for how many years, Also there was no mention of the calcium supplement tabs that I was prescribed to go with the Femara so I halved the dose, I felt as if my teeth were coated all the time. Im 59 almost so truly through the menopause, I mention this
cos its a major factor in deciding what to prescribe.
Just making a point that it
s possibly simply doctors preferences.
Love to all Mags xx
You dont need calcium supps if you are only on tamoxifen as tamox protects the bones from thinning.
Lolly, that depends on your menopausal status. I THINK (but wouldn’t swear I’ve got it the right way round) that pre-menopausal women lose a bit of bone density on Tamoxifen but post-menopausal women gain a bit of bone density, or at least don’t lose it.
I have been on tamox since 2008 at the premenopausal age of 34, and my bcn said that tamox will protect the bones from the loss caused by zoladex/oophorectomy.
I read a study which said that women whose periods stopped after chemo experienced increased bone density on Tamoxifen, but women who continued to menstruate after chemo lost bone density.
My understanding about hormone therapy beyond 5 years is that Tamoxifen is worthless or can even fuel cancers after a prolonged period. When it first came into use they assumed it would be a lifelong drug but sadly it wasn’t to be.
With AIs they still don’t really know what the long term benefits/problems are. According to my onc the 5 year thing is apparently a bit arbitrary with AIs - it’s just the timescale that was used with Tamoxifen.
I can’t imagine that prolonged deprivation of oestrogen on AIs is good for general health. I don’t want to survive cancer only to open up a whole other can of worms. But then the thought of not taking that wee pill every day terrifies me.
I am going to speak to my onc about the possibility of going onto Tamoxifen for a couple of years once my 5 years on Arimidex are up.