Hormone therapy, is it worth it webcast

Well done, @kmakm - I didn't watch 100% (but think I video'd it!) so will watch it again in full.

Some of the info the oncologist featured with his screen shots was 'old stuff'.  One of the research was 10 years old, one was 20 years old - so That is not always relevant to today.

Adjuvant Tamoxifen - 2010
Comparison AI data with EBCTCG - 1998

I thought the Onc's comment on the use of cannabis (I know I mentioned CBD Oil, NOT cannabis - there IS a difference) was rather condescending.  Obviously more trials are required, as he said the trials had not been convincing. 

(Don't be afraid to try it - I haven't taken a sleeping tablet or pain killer since starting on CBD 3-4 weeks ago.)

I would also like to watch it if I can 

Thank you @Artferret. I had no control of what questions were asked. That was Kirsten.

@arpie I would have preferred it if he had focussed a bit more on current developments too. If time and format had allowed I would have picked them up on the CBD oil thing; I did notice it. In the room it didn't read as condescending. More that they look at studies, and thus far studies are inconclusive about medical cannabis. I'm not ruling out giving CBD oil a crack. I just can't manage more than one thing at a time, and money is a big factor for me. My mum is helping me out with the acupuncture.

My takeaway is that while there are statistically solid benefits to taking hormone blocking medicines, each person needs to be evaluated individually as to whether the benefits outweigh the negatives.

Which is all well and good but doesn't take into account the psychological fear we have of recurrence, metastases and death. I'm too scared to come off the AI.

So next stop for me on this shitty train ride will be hypnosis. And I'm going to explore some of those resources Martha was talking about.

I'm no longer looking for solutions; there aren't any. I'm looking for ways to cope with the next nine years.

Yes I’ve got another 7and half years,I was thinking other day if 5 years was still standard treatment,I would be able to say I’m halfway there!  I had hypnosis and found it quite useful,so good luck,

@kmakm. Nice to put the face to the name. Looking lovely. Now at the end you mentioned your thumb. Holey moley I've had a few months and a trigger joint too. Hard to open doors or change gear in the car. Had X-ray, nothing, had ultrasound and said the tendon was thickening. Could have either injections or surgery. That was all too much info for the thumb and scared the crap out of it. Over the last 2 weeks my thumb has done a complete reversal and is almost better. No pain at the base. Trigger gone, thumb pain gone and can use it again. I've been in the Anastrozle for 7 months and I'm getting over the side effects. Better than the Letrozole. 

Ooh, thanks for that @Milly21! Great to hear from someone who's tried it and found it helpful. K xox

@Blondy What you thought I looked like, or not at all?!  ;)

Interesting about your thumb. It's such a lottery eh? And then some people (like @Deanne I think) have no trouble until several years in. I'm so glad you've had an improvement. K xox

@kmakm Not what I thought at all. With your workload plus health I expected you to look  something like Mrs Brown. Instead you gave us glam. There's something about short hair and there's short hair. You rocked it. Very nice make up too. Go forth onto the pages of Vogue. 

My thoughts on the webcast (and bear in mind that I was plagued by the connection doing annoying things on and off) was that not a lot was actually covered.  @kmakm did an amazing job of representation and posed some real questions herself.  While I thought that the two experts were very nice and came across as knowing their stuff, I felt that a lot of time was spent covering things that are probably easy to find out such as the way that Tamoxifen and AIs work and pictures of brochures that you can get.  Actual ways of living with this stuff were pretty much glossed over.  And maybe that's because not enough is really understood.  Or possibly I just put my own slant on the title of the webinar - I'm on the meds because I know the reasons for it - I just want to know how to stay on it if possible.  And I did find some of the answers a little brief and condescending but I assume that had as much to do with time available as anything else.  

So, my feedback is that I think @kmakm was a fantastic rep (and good on you for no apologies) but that the rest of it, while well presented, was not telling me anything I didn't already know.

If there are any other questions, Dr Richard De Boer is my Oncologist Im happy to take him to task as I do frequently!!! Here's the thing...I'm 8 years now on Tamoxifen and Ai's and had a recurrence half way! He says I really want you to take an AI for 18 more months that will be a total of 5yrs on an AI. Why?? because it isnt deemed useful beyond 10yrs and there is no safety net once you stop. So Im like huh? so is it just about being a countable statistic at 5 and 10yrs? Like you hear people say Ive done it Im a 5yr survivor, because for Oncologists thats the first mark, the 2nd is 10yrs. For me its like and?? but what about after lol, sorry if I dont laugh I'll go mad. 

I do believe after all this time and personal experience that the pain of side effects for me personally is a combination of things, it is definitely the AI BUT its residual from the MANY problems arisen from chemo and radiation particularly back in 2011!!!! then throw in an unnatural menopause?? that with hormone blockers is dynamite for pain due to lack of oestrogen. 

We all take it because there isnt anything else that we feel confident in to at least give us that 5 or 10yrs or whatever that it is. For me I got 4 then bang. I have no illusions as to the possibility of much more why else is he waiting for a secondary...still blows my mind he said that a couple of years ago. That might be the reality...but sorry...Im not going to succumb to that thinking. Ive worked so hard physically, mentally and emotionally to be where I am. 

I didnt see the webcast but Id like to at some point, I'd imagine that your questions Kate would be more prudent than anyone else having lived it and living it. 

Something needs to be done in terms of research into the medications, the side effects are well known by surgeons and oncologists alike...an attitude of oh well yes I know its tough but either take it or dont  is NOT GOOD ENOUGH!!! 

I really dont feel we've evolved anywhere enough for the amount of money and research that they say goes into things.