Getting a second opinion through the NHS? Advice wanted on experience

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Hi all, 

I'm new here. In Jan 2022 by dad (63) went into the hospital for an inflammation in his bowel and during the course of that treatment, they did other others due to an elevated PSA (in the high 10s) and he came out with a diagnosis for PC with a gleason score of 9, locally advanced, some of the nearby lymph nodes but nothing in the bone. He doesn't have private medical insurance so everything has been through the NHS, relatively speedy. They've told us it can't be eradicated, past surgery, only manageable. 

He was initially put on Bicalutamide then switched to apalutamide, he's also on 3 monthly dose of goserelin, which dropped the PSA way down to 0.x, so they were doing their job of stopping the production of testosterone.

That was monitored for a while and we were then advice that the next course of action would be radiotherapy, the faster option of 6 weeks. 

He went through that Jan/Feb 2023 without much adverse side effects other than the incontinence that is usually expected. His PSA started rising again shortly after the treatment - but from what we had read, this can be typical as its an inflammation marker and could take months up to a year after treatment to stabilise or even reduce. 

The PSA was at 3 in April, then 5 a month later. Before the radiotherapy there was no change at all in the PSA level and there has been high stress and the expected inflammation after the radiotherapy so it makes sense that the PSA would rise.

The Doctor is suggesting that the next treatment is Chemotherapy through Docetaxel (Taxotere), 10 doses, 3 week cycles. It sounds brutal. 

The whole thing has been mentioned as just the next step without much thought around the impact this will have on standard of living for my dad (we know people that have died during chemo) - the doctor seemed a bit impersonal but that's understandable, they deal with many cases. We are concerned that this is being rushed and seems like a tick box exercise, we asked to check if there were any clinical trials available and we are awaiting feedback. 

Until then he's been taken off apalutamide as they say its no longer having an effect but they are keeping the goserelin. 

I'd like advice on:

- If there are any other paths to try after radiotherapy or how long is a typical amount of time to wait before evaluating it's impact? 2 months seems short. 

- is there possibility of getting the case reviewed by another doctor through the NHS?

He generally seems fine and fit and we know that's no longer going to be the case after chemo so this is not a decision we want to rush. 

Thanks! 

  • Hi Syborg

    Difficult one, question is when they say in the nodes , is this local to the prostate or distant. If local then still  potentially curable.

    Strange why PSA going up considering he is still on HT but then PSA testing so soon after RT not usual, I had to wait 6 months.

    I would have thought too soon to consider Chemo but remember I am not an expert.

    If it was me I think I would ask My GP to transfer to a different hospital  or go private just for a second opinion, u would need to get hold of Mri scans reports etc, which is easily done.

    But I think the first thing is to try and find out which nodes are affected because if distant then Chemo may be necessary but I think I would have a couple more PSA tests first.

    good luck and any more questions fire away.

    Steve

  • Hey Steve,

    Local to the prostate and a node next to it with nothing in the bones is exactly what they said. And yes, the PSA stayed very low until after the RT, but the RT will cause inflammation which i thought would increase the PSA and may give a false reading. What you've said was exactly our line of thinking r.e. getting a 2nd opinion. Thanks for sharing your thoughts. 

  • Not sure how easy to get a second opinion with NHs, that's y suggested private.

    I had  a second opinion privately and also changed NHS hospitals twice because wasn't happy

    Steve