Hormone treatment failed/failing

User

Posted 25 May 2022 at 08:51

Good morning all,

Not been on for a while, I’m in good shape myself though PSA test time (now annual) looms.

This question is for my father. He was diagnosed with stage 4 PCa with (fairly extensive) bone mets a little over 5 years ago. He’s just coming up to 83.

He’s been on hormone therapy for that time. Not sure exactly what but injections every 3 months. It’s done a pretty decent job. Once a severe prostate infection was sorted right at the beginning (3 months of Cipro finally did it), his quality of life has been pretty good until recently.

He had COVID a couple of months back. He reckons he’s had colds far worse…… however, since then things have been going downhill. He’s been complaining of leg pains for a while in hips, thighs & knees. GP reckons old age/arthritic. He’s also been having urinary symptoms. Getting up multiple times in the night, discomfort, urgency, control issues and even the occasional “mishap”. GP tested and found evidence of infection. He’s had a couple of short courses of antibiotics, which have helped some, but I’m not convinced it’s fully sorted.

He’s now weak and tired all the time. Mobility is becoming a real problem. Partly weakness, partly loss of control. Most worryingly, his leg pains have suddenly got much worse. He describes as hot, electric, shooting pains in left hip and thigh. Doesn’t sound arthritic to me. More like nerves being squashed.

Last PSA about 3 months back was good (had actually come back down from a previous slightly elevated level) and consultant was “very pleased”.

However, I’m very concerned that his mets are waking up (or have just been quietly working on in the background) and there’s a spinal compression developing.

GP (never see same one twice) isn’t picking up on this (not reading notes, patient communication likely misleading), frailty clinic so slow as to be useless.

I’m inclined to get his oncologist involved ASAP, but this means facing up to the elephant in the room….. yes, there is some denial going on I think….. I’m aware that 5+ years is a pretty good run for the HT.

Am I right to want to push the oncologist card do you think?

thanks

Nick

User

Posted 25 May 2022 at 10:53

Lots off people on here with load's more knowledge than me but I would get onco involved to check him out lots off options available to help him 👍

User

Posted 25 May 2022 at 11:40

I think a PSA test is the first thing to do. At my GP surgery that would be easy I would phone up and get an appointment in about two weeks.

I could be wrong, but I think if the PSA hasn't woken up then the cancer hasn't woken up. The next question is could the PSA have woken up in the last three months? Well we do get posts where someone has two tests a few months apart and there has been a big rise. So yes it is possible.

I know 83 isn't very old, but all the symptoms he has could be just a knackered old body.

SCC could be serious quite fast. He sounds the sort of man who just says he's fine, when probably every bone in his body is aching. So you will need a bit of work to get him to tell you exactly what his symptoms are and how severe and frequent they are.

If you think the symptoms are not too serious and you can get a PSA test within a week or two then that is what I would so. If you can't get a PSA reasonably soon or you think the symptoms are a bit beyond just old age get the onco involved. If you think SCC is possible call NHS 111 give them all the info you have gleaned out of your dad. They will err on the side of caution and send you to AandE if they are in doubt.

Dave

User

Posted 25 May 2022 at 12:15

Needs the onco to check, GPs are a waste of time.

He could have fractures caused by osteoporosis from the 5 years of HT, his cancer could have morphed into a none PSA producing tumour, he could have other undiagnosed issues. ONCO will be better than GP for all those scenarios.

User

Posted 25 May 2022 at 14:09

I agree with franci- seek another PSA test and tphone up and ask for an urgent onco review.

My father-in-law's PSA was actually falling - it went from 17 to 1.2 while not on any treatment - onco was thrilled and refused to arrange new scans. He died just over 24 hours after they realised that his cancer had progressed significantly without the corresponding PSA rise. It is rare but not impossible.

There is also a slight possibility of him having another cancer which has gone to his spine - as above, if you suspect SCC don't mess about.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 May 2022 at 08:18

Thanks all. You are all confirming my thoughts and concerns. Had a lengthy discussion with him about it yesterday. My goal was to get to the point where we phoned the oncology nurse. Typically he was having a “better” day, so prefers to keep floating on that well known Egyptian river a while longer.

The better day was at least partly due to him finally taking heed of advice on how to get the best out of OTC pain killers. Hum…..

The idea, unwelcome though it is, is at least out in the open and I’ll keep on it.

Nick

User

Posted 02 Jun 2022 at 11:20

So, progress of a kind. Harassing the oncology team by leaving messages (no human contact available apparently) on Monday and twice on Tuesday finally resulted in a call back Wednesday morning. After a 10 minute discussion with a nurse he was told to go and lie down until the ambulance arrived. Hmm… that got a reaction then.

Long story short, he had a lengthy stay in an MRI scanner (not enjoyed) and currently remains in EAU ward.

Good news is that no evidence of spinal compression found.
Less good is that they did find at least one active met that may be responsible for the pain.
Worse is they found evidence of “a number” of minor strokes. Though as damage seems to be light so far, if he can be treated to prevent more, he may have dodged a bullet there.

Anyway, the oncology takes a back seat while the stroke team deal with him…..

Nick

User

Posted 02 Jun 2022 at 12:21

Thanks for the update Nick. Let's hope all goes well. Let's also accept that by the early 80s a body is like a rusty old car, you can probably keep patching it up and it will keep going, but don't take it on a long journey.

Dave

User

Posted 10 Jun 2022 at 09:35

He’s been discharged…. For now.

On blood thinners for the stroke related stuff, and paracetamol/codeine for the pain.

From the hospital notes on the spinal MRI:
“widespread sclerotic bony metastasis, no metatastic cord compression. Degenerative changes in the spine with associated narrowing of the spinal canal and neural foramina as described. Neurogenic tumour associated with left L2 nerve.”

The last part seems to be the main problem and is a bit unexpected. I had assumed that the issue would be bony growth(s) leaning on nerves(s). However reading suggests that the a neurogenic tumour is growing on the nerve itself and is possibly not even PCa related.

He’s been offer the “choice” of surgery or RT but heavily steered away from surgery with dark talk of high risk. Though seems to me that anaesthesia risk aside, zapping an important nerve root isn’t exactly low risk either….

No talk of any changes to basic PCa treatment thus far. Possibly because not considered the main cause of the current problem.

Most confusing…..

Nick

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