After five years of hormone therapy...

In six months I’ll have been on hormone therapy for five years (1 1/2 years tamoxifen, 3 1/2 years Arimidex). On one hand I’m keen to lose the horrible side effects. On the other I’m nervous of not having the security blanket effect of taking the pills. Does anyone know if the hot fushes and joint pains disappear for good? Is there an argument for continuing the drugs if you have a dodgy prognosis? How have others felt when it was time to ‘go it alone’? x

Hi Chalee

I am at about the same stage as you - due to finish Arimidex next April. I was looking forward to coming off it, due to possible long-term side-effects (the short-term ones disappeared some time ago). However I believe that there has been some recent research giving statistics on recurrence after five years and those with ER+ are apparently more likely to have a recurrence so the advice was to discuss with your doctor whether you should stay on Arimidex for longer. As I have just (last week) been discharged from the breast care clinic this means I will have to talk about it with my GP.

I must admit I felt rather anxious about being discharged, but have got over that now and see it as positive!

Cheers
Gwyn

Thanks for your reply. Sometimes I really look forward to the day I stop taking Arimidex just to see if the joint pains go. But I could certainly live with it if continuing the pills if it was going to improve my chances of a C free life. Maybe by next year there will be more information on the subject for us to base our decision on.
Good luck Gwyn! x

Hi Chalee and Gwyn,

I have been on femara, a similar aromatase inhibitor for well over 5 years and I suspect my oncologist doesn’t know what to do about the medication as I have secondary cancer and am therefore at high risk of recurrence.

Gwyn, I would be grateful if you could tell me more about the research which seems to indicate that coming off the aromatose inhibitor can lead to recurrence.

I feel that we are probably guinea pigs for the future generation but from my own point of view having secondary cancer, I feel that femara despite the side effects, has kept me alive.

Take care.

Wendy x

Hi Chalee

I hope you are keeping well and life is being good to you.

I’ve been on tamoxifen for almost three years. I asked at my last appointment about being transferred to arimidex to which I was told “NO” as some of my bodily functions could still be premenopausal - although I doubt this, I have to have faith in my consultant. .I have to stay on tamoxifen for 5 years. Thereafter, I have to have Femara (or similar) for a further three years. I have a “dodgy” prognosis with large lymph node involvement. I’m also 100% ER+ and PR+.

Wishing you all well.

Love

Jeannie

I finish 5 years of Tamoxifen in November and because of my age I won’t be offered any further treatment. Chemo made me menopausal but AI’s can kickstart the ovaries again in younger women. I am under the Royal Marsden and have complete faith in my consultant.

Thanks everybody for your replies. ( Nice to hear from you again Jeannie, I’m doing fine apart from the sweats, joint pain and the unnamed fear! Hope you are thriving.) I really wish there was more information on which to make decisions. Last time I saw my consultant he didn’t seem to want to commit himself, saying it was all so new there wasn’t any evidence one way or the other. I suppose I’ll just keep ‘Googling’ for research until March!

Best wishes everyone. x

Hi Sappho

I’ve read about the research in a couple of places. It was an American study which looked at nearly 3000 women who had remained disease-free for at least 5 years after diagnosis and initial treatment. They found that the risk of late recurrence (i.e. after 5 years) was more likely the later the stage of initial diagnosis (i.e.if someone was initially diagnosed with Stage 3 they were more likely to get a late recurrence than someone initially diagnosed with Stage 2) and if the cancer was hormone positive. Ten years after diagnosis/initial treatment 11% of women had a late recurrence and 15 years after diagnosis/initial treatment 20% had a late recurrence. I believe late recurrence refers to either another primary tumour and/or secondaries, but I am not absolutely sure.

However it is important to note that some of the women were first diagnosed in 1985 and treatment has moved on a lot since then. Also that because aromatase inhibitors are relatively new not many of the women in the study had been treated with them.

The advice was to discuss with your doctor the pros and cons of taking hormone therapy for longer than 5 years!

The article was in the Journal of the National Cancer Institute 2008:100

Just made me think a bit.

So sorry to hear about your secondary cancer, Sappho, - hope the femara (and whatever else they can come up with) will continue to keep things at bay

Best wishes to all
Gwyn xxx

Hi

i have only just started tamoxifen - a month or so back - the hot flushes have been enough to send me seeking yet more pills to stop them (i am 50 but allegedly had the hormone levels of a 35 yo… ). i wondered if you had taken the side effect pills or not?

u will have worked out that i have just finished hops based treatment and need to do some thinking!

Take care

jennifer

Just to let you know that I was on Tamoxifen for nearly 10 years (4 months short) and then Arimidex for another 2 yrs because of my family history (which I’ve found out this week that I’m BRCA2).

Pinkdove

Hi Jeannie

I am interested to hear about your treatment, becuase my onc is suggesting something similar. I have been on Tamoxifen for almost 4 1/2 years, and had asked some time ago about Arimidex, but was told I was pre-menopausal (I was 45 at diagnosis). Lately I raised the subject again, and this time my onc agreed that now I am post menopausal, and will put me on Femara for 2 years after the Tamoxifen finishes.

I hadn’t heard of this option before, but on balance am glad I will have another 2 years of pills before I go it alone!

Sarah

Hi

Just to be different …I will have been taking Tanoxifen for 5 yrs in January. Becuase I’m suspected of still being pre-menopausal I’m will remaining on Tamoxifen for the fore seeable future.

Becks xxx