AIs - questions to ask

Stone90

Hi everyone! I have successfully completed my surgery (03/02/23), and radation (13/04/23). I'm seeing the oncologist tomorrow to discuss/commence AIs. 

Does anybody have a good list of questions to ask? Or were there things you did ask at your appointment which were useful? Or things you wished you asked initially but didn't?

Thanks for your assistance!

Afraser

Always useful to ask about the following:

1. Length of treatment 5 years, 10? On what basis, what’s the current research? 

2. Your bone density may be affected. Have you had it tested recently? Best to get a referral and know what’s what before you start. Check on what you can do to try and counteract any negative effect (vitamin D, calcium, exercise etc).

3.  An AI may affect your sex life - vaginal dryness may occur, which can make normal sexual relations uncomfortable or even painful. Ask about recurrence with the AI proposed, and what medications may reduce any effect.

4.  Some side effects include menopausal type symptoms, bone and joint pain. Discuss how this might be treated if it occurs.

Side effects can vary but it’s important they are not dismissed. You need to know that your oncologist will take them seriously. I’ve just finished ten years, it can be done and I am glad I’ve see it through but difficulties can arise and you need to know what your options are if they do.

Best of luck, it’s all part of doing the best you can to never have cancer again. 

Stone90

Thanks @Afraser. Congratulations on making through the 10 years! That's a very helpful list of questions - I definitely have my concerns. I really don't want this cancer to come back - as I've got two young children. But also am worried how the side effects will affect my marriage, and bone density starting in my 30s. 

Afraser

Preparation is all! Side effects with AIs, like nearly all breast cancer treatment, vary immensely. Some people manage OK, others have a hard time. Think positive but plan for hiccups. Your bone density is likely to be good ( I was 67 when I started, but my bone density was excellent). Lots of people never have vaginal dryness, and there are lots of ways of dealing with it. The main thing is that your oncologist can share information with you and respect your decisions. Mine doesn’t know of any research that says three years are better than none, or seven years are still better than five. The research says ten years, for some diagnoses, are better than five but again research says that many women never finish five years - no idea how many finish ten. I am still here, I’m well, active and happy. It’s not proof of anything but it’s still pretty special! Best wishes. 

Keeping_positive1

@Stone90 it may be suggested you go on Tamoxifen instead of an AI.  Tamoxifen doesn't have the same debilitating affect on the bones, but the AI's can and as @Afraser mentions is wise to have a bone density scan at the beginning so you know a starting point of the health of your bones.  All the best.

TonyaM

Hi @Stone90, I would ask your oncologist to explain all the med choices available to you because some of them work quite differently to others. Tamoxifen is not an AI and doesn’t affect your bone density or sex life. It’s not without its side effects though.The ladies above have given good advice. I managed to take Tamoxifen for 4yrs- it wasn’t easy to start with.Best wishes xx