Hormone therapy facts?

Thank you. You have helped me put it into perspective.I went and filled the script today.

Hi @Sooz

If your oncologist has prescribed Exemestane ( I take it too) it will be because they think it will give you the best chance of survival. Basically, that is what it comes down to.

I'm finding it more bearable than either Letrazole or Anastazole, but I still know I'm taking it. I've already had a recurrence--ten years after my first diagnosis--and I'm pretty keen to avoid another. I may be just buying time, but it's the best option I have. I think that is what you have to keep in mind. If you find it absolutely unbearable, then stop. But please, don't let anyone else's shitty experience influence your decision.

If you want more technical information ask your oncologist for it. These drugs have not been in common use for all that long from a scientific perspective, so the longitudinal data really isn't there. We can only hope they work.
Mxx

As with chemo, you can always stop the hormones therapy (or change) if you really can't handle it but you won't know if you don't try it.

I think the problem with the medical profession and the side effects of AIs is that they can't really do anything about it so many just consider it out of their province.  I suspect that as other things become available, they may start to listen to the issues more.

Hi @soooz. It's pretty daunting eh. Your oncologist should be able to give you a percentage number that is your benefit from taking an AI. Spin that out to 1000 people if your benefit is 2%, are you prepared to be in that group of 20 people whose cancer does recur, or will you be happy to take your chances that you'll be in the 980 people group.

Ask your oncologist why they are putting you on Exemestane rather than one of the other AIs. That might elicit some useful information.

I'm on Letrozole and that list of side effects is loooong, over 50! No one gets all them. A few get hardly any. You won't know if you don't try. And once you've tried it you'll have solid information about how your body responds. You are in control, not your doctors.

These drugs are very effective at starving any remaining cancer cells of food, that's why they're prescribed. Be confident that there's a good reason why you're taking them. K xox

@Sooz, the importance of AI therapy for oestrogen positive BC people is accepted by all the scientific-medical studies now and we are so lucky to have it as an option which was not the case in earlier times. But the side effects can be devastating for some, although there is no way of predicting accurately who will be in this camp and who won't. Many oncologists appear to be either oblivious or in denial. Most take the view that we should suck it up and be grateful. The extent to which AIs improve your outcomes in terms of survival depends on several factors especially the precise nature of your pathology, what kind of chemo you have had etc. The best online tool appears to be the British NHS calculator Predict. Many women on this network do not find statistical predictions helpful. I do, and am very grateful to have easy access to this information. My cancer was very well on the way at diagnosis with large tumours and a lot of positive nodes. So in my case the AI therapy adds a very large benefit to 5 year survival rate (but much less to 10) and I really need it to have a reasonable chance of a few more OK years. For others it may only add 1 or 2% benefit. So it's then a matter of weighing up risks vs comparitive benefits. I have been on Letrozole for 18 months now and although the joint pain can be blecchh at times I have been pretty lucky and wouldn't think of giving it up. But in the end it's up to you to consider your own situation. If you have a respectful oncologist to go through the issues with - one who is prepared to tell you the facts in your specific situation as far as possible and discuss it with you openly then that would be best.. Not everyone gets side effects, or at least finds ways to manage them. And new treatment options are developing all the time. Be strong, we're all on your team. Hugs, A.

Hi Sooz.. this next phase of treatment is quite daunting weighing up the risks. I agree with arpie. The Recent BCNA webcast on Endocrine Therapy was very helpful. I think you can replay it by registering on the site. If you’re going onto Aromatase Inhibitors
a bone density check prior to starting may be helpful. 
I developed osteopenia in my first round. Im now on my second lot
with my second cancer and the Onc added a six monthly injection of Prolia to prevent any bone loss. 
The key to your treatment is your pathology report. Hormone therapy for we who are hormone positive is to ensure all the cancer cells have been silenced! It is life saving. With good care and monitoring
any side effects can be managed. I just want to say.. “it’s all Ok” 
we are called to jump off the deep end.. and find we can fly.. 
Your treating team are with you, family and friends and we fellow travellers at BCNA. .. Go gently..  Wishing you the best in this next phase of treatment decisions. 

Hi @soooz

Good to hear your active treatment is over - and now about to start hormone therapy.

Don't be afraid of the side effects of the AIs - stay as active as you can as they say that exercise helps mitigate the side effects .....

Some women are very lucky & hardly have any side effects!!  Fingers crossed that you are one of them!

However, having said that - there are a lot of us who HAVE had side effects, the majority being major hot flushes & joints aches & pains - particularly in the hands/thumb & feet.  

If you have painful side effects within a matter of weeks, after 6 weeks, you can contact your Onc & discuss the possibility of changing to one of the other types of AI

take care & best of luck xx