The problem doing 'research' ...

There are so many so called 'experts' on the Internet and we can drive ourselves insane trying to work out which if any of them actually know anything. 

Personally I think that it's better to stick with the recognised organisations in the UK like prostate cancer uk and macmillan. Knowing what is  advised or otherwise in the US is absolutely useless to us in the UK unless we plan to go over there and pay for treatment. I've not met many Americans but the ones I have met had massive egos with mouths to match. 

You don't want to beat around the bush eh? ;-)

I agree, the bottom line is unless you can get the treatment here (and you can in some cases), you may still have to rely on the NHS to fix whatever goes wrong, if it does.

Maybe one way to qualify the RT,  'it's now far more accurate' statement is to ask the UK radiotherapy specialists?

I'm a plain speaker,  it's my northern up bringing. We got the information about the side effects for all the treatments from the literature provided by the hospital. I would like to think that our specialists had some input when they were written.

I like the plain speaking. ;-)

GR1 said:

I would like to think that our specialists had some input when they were written.

Me too, and partly why I was willing to assume that any of the specialists that reviewed my complete situation (assuming they do / did etc), would have already discounted those treatments that wouldn't me or my situation?

Apparently the surgeon I spoke to at my consultation also has a reputation for 'plain speaking' so that's good. ;-)

I don't know if it's the same at all hospitals  but at ours my husband wasn't allowed to make the decision about his treatment until a multi disciplinary team meeting had taken place and further scans were done to check that it had definitely not spread. It was the surgeon who told him that they were negative and he was very honest about the side effects/risks. As it had taken several weeks from diagnosis to that day my husband had already decided to have the surgery unless he was advised not to.

I think the crux of the problem is that there are too many so called ‘experts’ ( ? Charlatans) putting out ‘stuff’ on the internet. It is important to be sure that you are getting true and accurate information from reputable and bona fidelity websites. When we are desperate it is our human nature to grab on to anything and everything that might give us a false hope. 

here, in the UK ‘evidence based medicine’ is the mantra, the golden rule. But new knowledge is constantly being generated which means old tried and tested treatments are dropped as being of absolute no value! I’m thinking now of when I did my nurse training in the 1970’s. The gold standard treatment for bed sores then was to smear egg white on them and then direct a jet of oxygen on to them. When we deployed ‘egg white and oxygen’ we knew with absolute certainty we were doing the very best for our patients! Of course, this has all been proved totally incorrect! 

so, I only visit reputable websites, look for firm evidence to back up statements and then question the experts who determine our treatment for clarification of their decisions if I am in doubt. At the end of the day - we also have to bring trust into the equation because sometimes these medical experts determining our treatment have a knowledge that goes beyond our understanding.

I would, though, always err on the side of trusting a well regulated NHS expert rather than an unknown source on the internet.

Worriedwife said:

But new knowledge is constantly being generated which means old tried and tested treatments are dropped as being of absolute no value!

And this is the thing ... and of course it isn't just dropped, it tends to be phased out depending on how fast the alternatives can be ramped up meaning there will be people on the cusp who may (or may not) have the choice.

I received a letter from what I think is the Radiology solution over-viewing the position for me and that pathway but every time I get more 'information' I just get more confused.

Daughter summed it up fairly well ... 'If (a non neurodivergent) person like her / me simply didn't like surgery, then it would be an easy decision for them, given the two seemingly equivalent (outcome) pathways but for us, we remain open to all solutions but aren't able to pin any down sufficiently (for us) to be able to make such a binary decision'?

Some people are happy to go by what they hear, we need to also rule out the things we aren't hearing, as we don't know that others (the specialists) have even considered them?

Ok, the chances are they have, just that our minds won't accept 'might' as a viable position?

So it gets to a point where if asked to make a decision, we just toss a coin, because to us that's just as logical, just as considered as any decision we can actually make (and that's not suggesting that anyone else should make such decisions for us even though there would be people out there who could, if they minded to).

If someone asks me to recommend a solution for their car or computer, I would be able to ask then sufficient questions that the likelihood, any 10 computer people who knew their stuff and who had no biases, would come to the same conclusion. I know mammals aren't computers or cars ... ;-)

Not making a decision is, actually making a decision as you are choosing to delay treatment whilst fact finding. Equally, tossing a coin is making a decision to let serendipity make the decision. Only you can make a decision based on the facts to hand and what your feelings are . It’s a horrible decision to have to make - no choice is perfect and no choice offers guarantees and certainty. But, if you think of all cancer treatments, there are never 100% guarantees- that’s the nature of the beast. 

I wish you all the best

Yeah, I haven't said I wouldn't make a decision, even if it's a coin toss (and AFAIC, so far it might as well be).

And as you said, the 'facts' are constantly changing so the facts I use before making my 'decision' may be different after, if I were to actively try.

No one is trying to predict the future here, certainly as far as guarantees are concerened but for example, my recent CT scan revealed a 'right lung node 4.8'? If that is going to kill me in 2 years, why would I bother going though (suffering with and the side effects of) any PC treatments?

Sorry Able, and to be sure, I am not saying the following with any wish to offend or upset you….

I think you sound  as if your thoughts are going round and round and round in your brain until you are tying yourself up into knots. I quite understand the torment that a prostate cancer diagnosis brings but can I suggest that you pause, breathe and give yourself a break from this horrible (and not so) merry go round?

as I said, the decision is ultimately yours and yours alone. Sure, it’s an agonising decision about which treatment to go for. And yes, if you wish it, there is also a decision you can make to  have  no treatment at all. 

I do hope you can find some peace of mind in all of this and that you can finally settle on what feels the best option for yourself