Help and advice please

nancy dip · 06-05-2012, 09:10 AM

Hi Ladies,

today I saw my onc and was told that I must stop arimidex next month. I live in the UK and the NHS will not pay for more tnan 5 years arimidex for node negative patients.
What am I to do?? I see that a lot of you continue after 5 years and I would gladly do so as I feel that it is my "safety net".
Is it possible to buy arimidex? Should I try to get a private prescription from my GP? Should I just stop?
I would appreciate your thoughts.

Best wishes to all

Nancy Dip

tricia keegan · 06-05-2012, 02:01 PM

Hi Nancy,

I live in Ireland and moderate a U.K cancer support group so not a million miles away from you!

My Onc gave me the option of continuing Arimidex for another two years at least which I agreed to (making 7 !) but I'm highly triple pos and had three positive nodes too.
You can certainly buy Arimidex in the U.K or here in Ireland or online but as you had no nodes positive I'd be inclined to stop I think and most of my U.S friends have stopped at five years even with pos nodes and not sure the evidence to continue is all that convincing but completly understand why you want to!

What part of the U.K are you in ? I was born in Manchester and lived there until I was nine, hope you'll check us out on www.cancerbuddiesnetwork.org

caya · 06-05-2012, 05:52 PM

Hi Nancy,

I am in Canada, we are fellow commonwealthers!

I was node negative, but like Tricia, highly triple positive. I have done 2 1/2 years Tamoxifen, 2 1/2 years Femara, for the 5 year total. I am due to finish Femara in July. Two years ago I felt like you - very anxious about stopping. But now I cannot wait to stop and get on with my life. At my last visit my onc. said that for me, there is no benefit in staying on Femara any longer - in fact, because of my osteoporosis and other issues, it would do more harm than good. I am thrilled to be going off it, I intend to have a big celebration the day I take my last pill.

A friend of mine took a Femara "vacation" for a few weeks, and told me she could not believe the major difference (for the better) in her QOL. Aches and pains disappeared, fatigue was replaced with energy - I am hoping this will happen to me too. I feel that with doing a MRM, chemo, Herceptin and the Tamoxifen and Femara, I have done all I can.

I am at peace with this - I'm 5 1/2 years out now, I want to go forward.

all the best
caya

nancy dip · 06-06-2012, 03:39 AM

Hi Girls,

thanks for the quick replies.
I live in Glasgow and will check out your forum, Trisha.

nancy