Hormone therapy, is it worth it webcast

AIs have been deployed for ER+ for over 20 years and not much innovation since, despite the billions of dollars spent in research in that time.  The standard 5-year follow-up period is as much for our health as it is data collection and surveillance.  If we cross the line NED they pump the air and tally a 5-year treatment 'success'.  I am not a person, I am merely a dataset.

I think of this whole 5 years or 10 years is deemed a cure is a total furphy If I was in prison where there was the death penalty, and I was told that a judge had been soft, and had commuted my death sentence to life in prison, that means forever. If my sentence has been reprieved, it means it still stands, but that it has been delayed. They can and probably will still fry me in the electric chair in five or ten years time. Medically speaking, a cure should mean just that...a cure...it's finished, over, it will never come back. The other is remission, not cure. The statistics are all I feel they are interested in, so they can swan about at their next big Oncology seminar, at some fancy location, trotting out their five year statistics, followed by their ten year ones, whilst giving each other high fives, or clinking their champagne glasses together in mutual admiration.

I liked your comment @kmakm I'm no longer looking for solutions, there aren't any. I came to that conclusion not that long ago after hitting my head against so many brick walls trying to find one. And in a weird way i feel more settled about it. My husband asked me a couple of days ago was i ok with my decision to have a break for 2 months. I think he was worried that I'd be having second thoughts.  Nope, no regrets, no stressing over have i left the gate open for bc to return. Just totally enjoying the mobility that is starting to creep back in. I thought there would have been more active interaction, Kate, between you and the medicos rather than just each person presenting their part and kept expecting you to jump in with a comment here and there...time constraints...it would have gone for much longer but i feel it would have been more useful.
It was good to hear @Blondy that anastrozole is working better for you. It gives me a bit more confidence to try it when my holiday finishes. 

Just listening to it now as I type!  

Well done Kate - a very measured, non emotional diatribe!!  And especially well done for no apologies!!  You were the clear winner on the night!!  I don't think I heard the answer tho to your question re "What is done with the anecdotal evidence of side effects that patients give their Onc?  Is it passed on to the manufacturer or researchers to 'research'?"  Maybe I missed it.

I agree with @Sister - they didn't really cover the side effects & how to minimise AI side effects at all (tho I am listening to it again right now!) - which is strange, as that is basically why we all logged on to listen to them in the first place!  I heard the acupuncture & hypnotise bits towards the end .... 

He went thru the list of side effects that HE's heard (at the end of his spiel) and basically shrugged his shoulders as well!!  :(  I almost 'heard him' roll his eyes too!   So yours was the 'bigger list', Kate!!  No - it was actually a more complete list!

So re prednisone - he says joint pain with AIs is a 'short term problem - only whilst you are taking it!'!  HELLO??  I wouldn't call 5-10 years of joint pain 'short term'!!  Maybe we need to nobble his hips, knees & hands & see how long HE can stand it??

"If you need 'that much intervention - is this the right drug for you?' "  HELLO?  What are the other choices once you've been thru all the different AIs??  NONE!

There is PLENTY of anecdotal evidence that Medicinal Cannabis Oil IS benefitting cancer and arthritis patients - LOTS of shoulder shrugging & rolling of eyes there!!

My thoughts - ANYTHING that will make the side effects 'acceptable' so that we actually STAY ON the meds for the required period of time (or even longer if that may be of further benefit .....) is the path the researchers should be going down.  

I wonder if they even KNOW the percentage of  all the drop outs from AIs treatment due to all the side effects?

Be it CBD Oil, acupuncture, hypnosis or any other 'alternative' methods - if they help you stay ON the treatment - it has to be a good thing, altho admittedly, still no guarantee of of not getting  a recurrence.

Taking Tamoxifen does not give any guarantee that a person will not get a recurrence.
Exercise does not decrease your risk of getting a recurrence.
As ever, the talk centred on early stage breast cancer.
I take Letrozole. I do not now have early stage breast cancer. 

@Blondy That is very kind of you to say you sweet thing you! K xox

I totally agree @Sister. While I think it might have been OK for someone coming off a low base of knowledge, for those of us who have been battling for a while it was not remotely helpful. My questions were not answered. If the format had been different, and there was time, I would have asked a lot of questions and dug a lot deeper.

I'm seeing my oncologist on Tuesday and will ask her some of these questions.

OMG @Artferret I was biting my tongue SO hard. I cannot emphasise how many times I wanted to interject with a question or comment, to dig deeper. Itching! I was positively itching!

I'd like to suggest to @BCNA that they host a podcast with the same people that can function as more as a conversation, more back and forth.

What year of endocrine therapy are you in @Artferret?

Hello Kate @kmakm

Thanks for your feedback Kate, you are right, the webcast last night was really popular and the information presented was pitched at a certain level to accommodate most participants.   From what I understand the webcast went over time and we are looking at having another one to help answer more of the questions that were presented.  I have forwarded on your feedback to our webcast team and will keep the online community posted regarding any updates.

@arpie My questions weren't answered at all. Unfortunately Kirsten asked about "medical marijuana" rather than CBD oil.

It was just all too general, a starter pack rather than the in depth discussion we were all looking for. I was asked to provide a list of questions a couple of months ago, which included the ones I asked yesterday, and more. I was complemented on these but I suspect somewhere along the line a decision was made to keep the webinar more generalised.

I can assure you that in the room the oncologist did not come across as condescending. Strictly speaking, he answered the posed topic, 'Hormone Therapy - are they worth it?' Perhaps another @BCNA webinar is in order: 'Hormone Therapy - helping you cope'.

I really think there are no easy answers here. ER+ cancers eat estrogen. Stop the estrogen, the cancer starves. AIs stop estrogen. End of story.

I expect one day they'll work out a different method of preventing BC from growing and that will replace AIs. As the research hones in on individual tumour characteristics and response, I think we're looking at more personalised treatment in the future. Just as my mother looks on in amazement at the treatment options I have compared with hers 33 years ago, 33 years from now we will probably do so in the same way. But for now we're stuck with them because it's the best we've got. Much like chemo.

My lower legs and hands are killing me today. I'm off to throw down some more painkillers. K xox