agree, the podcast was great, but did not address how to deal with side effects, other than if they are too severe, stop the Tamoxifen. Surgery alone he said may stop cancer returning. This is not what you hear from others whose cancer has returned, despite Surgery, Chemo, Radio, it seems to be just bad luck

Dear @melclarity, Thanks for your post above about Dr De Boer recommending a drug holiday/change, and links to your posts in 2017. I just read them - Very relevant then and now! And hear hear to your comments about 'needs to be substantial studies done and medication improved dramatically'.
I am going to have a look at the link @Emma17 included in her post ' ASCO 2019 - Aromatase inhibitors - Women need better treatments for side effects'.
A sunny, breezy and cold winter day here. I've been for a brisk walk and now I'm keeping warm inside. 
Best wishes from jennyss in Western NSW

@jennyss So Dr De Boer does go by having a holiday off the medication and recommends it for most of his patients who are struggling, purely to see if it is the medication or other components. I put up a post in 2017 having just done that..

https://onlinenetwork.bcna.org.au/discussion/16116/6-weeks-trial-off-arimidex-has-finished-as-requested-by-oncologist

https://onlinenetwork.bcna.org.au/discussion/16432/oncologist-checkup-yesterday-am-pulled-off-arimidex-and-now-on-aromasin-any-ladies-on-this/p1

Somedays I find worse than others, but Id have to say overall Im not too bad, Im seeing him next month and am undecided whether to change to letrozole or stay on this for 18 more months then im done. My main motivator to change is Aromasin is steroidal and stores fat in the LPL cells, so you cannot lose weight no matter what you do. Letrozole is not so feel I can try and change it with that.

The Oncologists semi acknowledge the side effects but theyre more focused on treatment and survival unfortunately as thats success to them, which I understand from their perspective...but from someone living through it?? there needs to be substantial studies done and medication improved dramatically. 

Thank you so much @jennyss!

Yes, overall it was a bit disappointing, the emphasis on 'is it worth it as per the stats', rather than 'you take it because you accept the stats, but does the loss of quality of life make it worth it for what may only be a small gain'.

I have suggested another one focussed more on managing the symptoms, or maybe a podcast so we can be conversational around the topic. Fingers crossed. K xox

Dear @kmakm, I watched and listened to the webinar today - luckily all the slides and sound worked for me. Thanks very much; you put important issues bang in the middle of  the table. Your experience with letrozole side-effects was put clearly and strongly. You advocated for the negative experience of many network members with AI side-effects. You asked what happens to the information/records of us BC survivors and now AI consumers in regards to side effects. This was not answered.

I thought Dr De Boer's talk focussed on 'hormone therapy is it worth it' in connection to studies which show increased survival rates, and how long the AI's should be taken. 
Professor Hickey seemed to view things through a 'menopausal symptoms' lense. But later, during questions, Dr De Boer mentioned studies where it was measured the effect of people taking a 'drug holiday'. It was interesting to hear that a six week drug holiday (once a year??) does not effect recurrence/survival rates, and sometimes side-effects don't come back quite as bad after the AI's are started again. He also seemed to say something about a drug holiday showing whether symptoms were medicine side-effects vs chemical menopause?? 

Perhaps I'm being a bit critical;  but I do appreciate BCNA organising this webinar, and the information, opinions and time of Dr De Boer and Professor Hickey, and we'll look forward to more webinars in the future. But most of all I appreciate your input Kate - you are the greatest! 

Thank you @arpie for those slides and being able to work them out at my leisure. 

Yes I was going to say something about the outdatedness of those figures but they seem to go on relying on these huge population surveys which are more statistically valid but don't take into account all the recent changes in approach and treatment. Maybe they've stoppd collecting those kinds of stats for some reason. But there was good info there I hadn't seen before about length of time to recurrence, as you mention. Anyway it was great that you were so clued in about using the technology. A. xx.

I agree could they be anymore confusing? not sure how it equates when he told me that tamoxifen doesnt work in 1/3 of patients and its widely documented. I didnt make the 5yrs not with radiation or tamoxifen doesnt make any sense. Not even he can explain it :/ 

I am sure he could have found some more recent ones than 10 & 20 years old, tho @Annski !!

And to be totally honest - I had difficulty 'following them' myself!!  :(   Tho it would appear that those who were ER- have a much greater chance of earlier recurrence than ER+!   :( 

Good on you @arpie thanks so much. I am not sure I would have seen these slides otherwise.  Wanted to follow the whole broadcast but it's hard on my Kindle which is mostly where I do the Network thing. Now to understand it! Cheers to all - well as far as is possible ... Hugs anyway!