CTS5 Online Test for determining if only five years of hormone therapy is okay instead of ten

I think what I'm concerned with - someone plugging in to the calculator, coming up with low risk and then deciding not to go ahead with treatment without understanding other factors that may contribute to a different outcome.  It's one thing to make a decision with all of the facts (at least the known ones) but this on it's own, does not seem to give much real information.

@Primek is right, the studies aren’t long enough to make clear comparisons - the indications are that it’s beneficial but the details aren’t there yet, and we are only starting to compare 10 years with 5. We are still a long way off from knowing if sticking with treatment for 7 or 8 years gives you any statistical advantage over 5. I completely agree that if the side effects are messing up your life, stopping may be the best solution. If the side effects are not that dire, and you’re 36, the not knowing what’s best can be really hard to accommodate. Treatment today is much effective than it used to be, but it’s still only the best we have right now. Anyone making decisions has to understand that. Much better treatment but no sure fire fix. 

I lasted 3 years. It came down to quality of life for me. What was the point of surviving breast cancer (something that never hurt or had any symptoms at the time) only to be half crippled and develop a heart condition from the AI. I would rather have 5 or 10 good years and snuff it than live a zombie brain half life. There seemed to be no reward for all the surgery and chemo I endured. Now I am off the AI things are looking up and I am gradually getting my zest for life back.

@primek Link in link? I read the links you posted quite thoroughly. And wandered off down some other rabbit holes! It's all rather curious. We're firmly advised to go onto these meds but I realise now we're part of an as yet incomplete study as to the long term efficacy.

I scored intermediate risk (7.1%)... interestingly enough my Onc this week at chemo touched on 7 years being my big evaluation point about what to do with endocrine therapy. @primek this mirrors what you're saying about the study only having just hit 10 years. Dr was saying whilst 10 years tamoxifen is definitely good we still aren't 100% sure about 10 years of AI and if its going to serve us any benefit, although at the moment he feels closest to 10 years for me is best. Will be interesting to see how this evolves in the next 5 years, Im sure a lot of those suffering badly will want to come off if they can. 

Again, it seems to lump all sub-types together and yet the research seems to indicate that ILC behaves differently to IDC - I suspect other sub-types have their own distinct response.

One of the things I think I got from the article is that life expectancy can be compromised by long term side effects of the drugs.

I got high risk from the calculator but I did find it odd as I plugged in lots of different scenarios just to see how it changed and the risk didn't budge from high.

@Lynn65  @kmakm  
If you open the link in the link to the journal article it explains in detail.

Thinking about the comment of life expectancy ...I'm now interpreting that the study isn't long enough to know those results. ..as its only just hit the 10 year mark.
So...by the time we reach the 10 year mark that data on life outcomes will he known. 
I'm coming in intermediate  (plus I was her2+)...so it looks like 10 years for me. At least things have improved for me on anastrazole.

That's why it can be very important to read the original journal article and not just someones summary. There's a table in it and it's helpful I think..

And another study which makes me just as confused.

If it improves distant recurrence (isn't this mets) how does it not improve life expectancy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5937869/

None of them address Her2+ and Es+ if it's different.

@primek @Lynn65 That is a depressing worry. I had been presuming that I was getting some kind of blanket protection because my estrogen loving cancer was being starved of it, should there be any stray cells lingering.

I have what I believe to be reasonable expectations that there aren't any lurkers. But this info just goes to show what a crapshoot this breast cancer shit show is. We have to live like it's never coming back in the full knowledge that it could, no matter what we do. Sigh...

Yes, that is depressing.  i’ve done heaps of reading but have never picked up on that bit before.