More than 10 years on anastrozole

[Angie55]

Hi Highball

I have been on Anastrozole for 6 years. Originally it was for 5 years then extended to 10 years. I am also one of the lucky ones with no side effects that I can say is because I am taking anastrozole. I had a bone density a few weeks into taking them and this was repeated approx 1 year ago, results were the same as the first one. I consider myself very lucky to be sympton free especially when I read what other ladies go through. My prescription does state for 10 years, so obviously don't know what happens after that but like yourself I would continue if that was the suggestion. Mine was a Grade 3.

[highball]

Many thanks Chick - that was just the article I've been looking for and couldn't find! There won't be that many people in my position as anastrozole hasn't been around as a first line treatment that long, and some people on it take tamoxifen for up to 5 years first.

You're quite right about the possible long term effects of course, and I agree we have to be pro-active about our own health. It's no fun having no or very low oestrogen, even without the joint pains/mood swings that thankfully I don't suffer from, so to keep on it isn't something I take lightly. I know a several other people who were only too glad to come off it. I do have regular check ups and although my 'bad' cholesterol is a bit higher than it should be ideally, it's the same as it was before I had breast cancer, and my doctor takes the view that as I don't have any other markers for heart problems, he doesn't want to prescribe anything for it. My bone density won't be tested for another 3 years but hopefully the infusions will help prevent further deterioration.

If I did query the anastrozole and said I wanted to stay on it, my doctor would probably refer me back to my consultant, as he did at the 7-year stage. My consultant was quite happy for me to continue on it then, and said that by the time 10 years was up it was quite likely that the recommendation would be to stay on it for life. This isn't the case, but the reason I'm not rocking the boat is that I'm not sure whether doctors have the option for (knowingly!) continuing beyond the NICE recommendation.

Highball x

[Chick1]

Hello highball, 

Hope someone comes along who can be more helpful. 

I am not in your position.  I have only been taking Anastrazole for just over 2 years.  It is good to hear about a positive experience on the drug...... And a very long one too!  I have attached an article for your interest.  Although it is not specifically about being on Anastrazole for over 10 years,  there is a suggestion of extending treatment/discussion of 15 year treatment.   https://www.bbc.co.uk/news/uk-36455719

It is a bit concerning that no one has checked how long you have been taking the drug/have not reviewed it with you.   I suppose we also have to be more responsible for and rely on ourselves as well.  I can understand your reticence not to rock the boat so to speak.  It may feel like you are cutting away your safety net.   However,  it may be worth you checking, either via your own research,/getting a general check up/via other means to ascertain whether continuing the drug may be increasing the odds of  high risk events occurring such as effect on cholesterol,  cardiovascular system, bone mineral density (although the Zometa should assist with that.).   

Take care, 

Chick 🐣 x

https://www.bbc.co.uk/news/uk-36455719

[highball]

I've now been on anastrozole for well over the 10 years normally prescribed - in fact over 11 1/2 years, and I wondered if anyone else has. It may be that my doctor has just taken his eye off the ball, as routine prescription reviews at my surgery no longer involve a telephone conversation but are done without patient contact by a 'health professional'. I'm inclined not to question this as I would prefer to stay on it for at least 15 years. I was stage 2, no lymph node involvement, but the tumour was very close to the chest wall and the negative margin was only 1mm.  I don't have any of the joint pain etc  side effects from anastrozole (lucky me!) although my bone density has deteriorated. I was on bone strengthening drugs for years but didn't tolerate them well and am now on yearly Zometa infusions. I had the first of these a few months ago and nothing was said at the hospital about the length of time I've been on anastrozole. Other than that, my hair has thinned drastically, especially in the last year, but I've always had fine hair and that may have happened anyway (I'm 66). Has anyone else been on this drug this long?