Supporting a person with prostate cancer

[NorthernDancer]

DH has been diagnosed with metastatic prostate cancer pretty much out of the blue. It is not curable, but should hopefully be manageable in the short to medium term at least. It is been an absolute roller coaster since a GP asked for a PSA test without telling him back in April.

He's currently on androgen deprivation therapy, injections and tablets, and is struggling with the side effects. He is not a candidate for chemo.

Our lives have changed completely in the last six months and it has been really hard to adapt. Given that prostate cancer seems to be so common now, I'm sure I can't be the only woman on here who is having this experience. Perhaps we could all support each other through the medium of this thread?

Enjoy the holiday. My husbands psa has dropped from 27 to 8 after three weeks of Prostap. Oncologist is recommending Abiraterone next week as he’s T3b and also organised a PSMA pet scan to check for micro metastatic spread, which we’re pleased about. All the best to everyone out there facing this .

Update here - saw oncologist who referred to radiology but they have said his PSA needs to come down more so still waiting.

i find it quite frustrating at these meetings which take around 30 minutes and nothing much seems to happen. The oncologist asked again if we want to consider surgery - we told her months ago that having gone to addenbrookes to discuss this face to face the surgeon made it very clear that he and his colleagues did not want to do this as they consider my DH too high risk with his epilepsy and previous abdominal surgery.

at least we managed to get to malta to see our new grandson.

best wishes to all.

Hi all I'm so sorry to hear how you are all affected by this horrible disease. I am after some advice on supporting my close friend, her husband was diagnosed with PC that has spread to his bones yesterday. They are waiting for an appointment to discuss next steps so don't know much at the minute. How do I support her? She is in her late 40's with two teens, her husband is early 50's so both relatively young. We've messaged back and forth and I've told her I'm here for anything she. I don't want to inundate her with messages but I don't want her to feel like I'm not there. We are doing the Macmillan mighty hike soon and I'm aware it's going to be incredibly emotional and hard for her now. I just feel so sad for what they are going through.

Hey, my advice is to get her out of the house when you can for some alone time (probably easier said than done with two kids!).

She may well feel that she isn’t allowed to express her own feelings at home, for fear of making her husband worried or upset.

My mum carries the weight of my dad’s moods in a way that no one else has to. Not only does she have to deal with the fact her husband is very poorly, she has to deal with the fact that she will be alone afterwards.

Please don’t be judgmental if she says things you aren’t expecting. Being around people who are very poorly can be challenging, and if she complains that he’s grumpy or irritable don’t respond with things like “well, he has a right to be!”. Rather something like “that must be so hard”.

That's great advice thank you.

DH just got his regular PSA results and it's gone up from around 1 to 6.

Last time it had fallen after the sabr treatment to the tumour in his spine, and the doctor said it would probably fall further. :(

And between all this he had a positive fit test and had to have polyps removed.

He's heading back from the hospital now. He's going to be in bits. I'm not sure either of us have the resilience to cope with this any more.

I’m sorry to hear that his PSA level is going back up. IME, the further advanced the cancer becomes, the less there is any good news and that can be really draining.

Have you spoken to his oncologist about what the long term treatment options are? I found with my dad that they only ever discuss the next step and sometimes that causes undue worry.

Is your DH receiving treatment through the NHS or private? My dad tried radio isotope therapy last year which has been really good for some people and it did bring his PSA down but after a few treatments that was stopped.

He has lots of bone mets and it’s now in his lung too. To put it into perspective, his PSA is now over 5,000 (the clinic they use stops measuring it past that point, so we assume it is significantly above this figure now) and he is still working and independent. He is tired don’t get me wrong, but he is still enjoying his life. He is starting a second line chemo today.

Sorry to hear this and hope the hospital are able to offer some further treatment as soon as possible.

DH had his planning meeting today so is all tattooed up and ready to go but RT wont start for another 3 weeks so takes us into september - so its only taken us 9 months to get here 🙄🙄

hope everyone else is doing ok

So - he had a pet scan and it only picked up one active met, the same one in his spine that he had the SABR for. So that is maybe better than it could be.

But in less than two weeks he's gone from walking 8 miles in a day to constant pain and hardly able to walk or sit at all - basically the tumour is compressing the nerve like sciatica with a risk of permanent damage. We are on holiday in the UK so he called his care team who told him to go to A&E. A&E did nerve tests to determine there's no immediate risk of permanent damage, prescribed coedine and sent him away.

So now waiting for his care team to advise whether he needs to go home for a followup now or wait for his existing appointment later in the September. So we don't yet know if this will be another treatment and it goes away for a while, or the start of the final lap.

He's spent most of today in bed, and sometimes crying. He's convinced himself this is the start of the final lap. I swing from positive (they said 4 to 7 years, and this isn't even 2) and pessimistic (he has the highest Gleeson score, median surival is 3 to 5 years).

Last week was such a happy week, so this feels like a kick in the guts.

@Tinyhands I hope you’re doing ok. I’ve only just caught up with the thread and was sorry to hear your current situation. Is there another update you’re able to share?
hand-hold offered to you

Thank you for the kind thoughts.

Sady ihings aren't great. Not "admitted and in the last weeks" bad, but worse news than we hoped. The short story is there is more than one active met so seems we have moved to the castration resistant stage already. His pain is more controlled but still very present. I'll post a more detailed follow-up when I have time to phrase it properly, there's so many things happening right now trying to keep everyday life and work together while coping with DH's situation.

Phew. Ok. Here goes.

The consultant didn't ask him to return from holiday early, just keep to the next appt which was the PSMA scan I think. His consultant is putting him forward for a lutetium trial, but (1) he has to have the right number of mets (not too many, not too few), (2) they have to be expressing PSMA or lutetium won't do anything, (3) he might still end up in the control group (again!) and (4) this all assumes he's able to hang on until the trial starts.

He has severe pain in his hip and leg because of the spine tumour and possibly also the tumour in his hip. Because of the pain in his leg, while we were on holiday he fell getting out of bed and slammed his hip which made the pain much worse, then a few weeks later back at home and on the way for his PSMA scan he stumbled, stubbed his foot and had excruciating pain. So he had the scan then spent the rest of the day in and night in A&E where they diagnosed some sort of soft tissue injury. SO now he's on crutches and in a lot of pain.

So this is where we are now.

He's on crutches and mostly on the couch or gaming. He can manage stairs (not for for the first few days, I bought him a portable urinal and dealt with that for him, did similar for my dad towards the end of his life so I'm not that bothered by it though I know it bothers him). Work are letting me WFH so I can help him, and also I'm doing all the housework and everything else.

I was hoping he'd be ok enough for me to go to the office yesterday but today he has been absolutely miserable about everything so I've said I'll stay home tomorrow.

He's so scared this all is pointing to only having months left and honestly it's looking like that's a real possibility. And on top of that he has the pain almost all the time, and he can't do anything apart from lie on the couch. He used to play bass but he can't stand up long enough any more. He had to cancel two gigs and at the weekend he told his band he had to leave. They don't know his diagnosis (new band and the others are much younger, it's not fair to drop that on them) so he's just told them his leg pain looks like it won't be resolved any time soon. But he feels like cancer is taking everything even before it kills him.

He has an appointment with his consultant on Wednesday. He's terrified because she has pulled it forward. But maybe it will be good news about the trial.

What we are finding, and what I am finding very hard, is that even if you know or suspect there's not much time left, all the things you said you'd do like making sure you see friends and family, or me leaving work to spend more time with him, just don't happen because everything keeps changing, and half the time even if you make it plans it ends up being cancelled because there's an appointment, or pain. And he doesn't want to talk about seeing people because knowing his future is so short makes him feel so disconnected from normal conversations, like he's behind a pane of glass watching something he's not part of. But I'm so worried when something happens it will happen fast and then he'll really regret that he didn't see people while he still could.

And beyond all this, the question of do I stop working to spend what time we can together, and risk not being able to get back in to work? I'm 52 and keep seeing headlines about how people in their 50s with stellar cvs just are no longer getting hired. I'm in a part of my industry that is booming. I saw it coming years ago and consciously changed track to be in the right place at the right time, I've been building a name and recognition, and although if it would save DH I'd give it all up tomorrow, what I actually have to face is do I give it all up, still lose DH, and have no career either?

God this sucks.

This next bit is really more for myself than the thead, I want to get it down somewhere because it's hard to keep track...

Diagnosed Sept 2024. Straight onto androgen blockade.
Chemo from Nov 2024 to March 2025. PSA quickly went to 0.01
Nov 2025 PSA started rising again from a single castration resistent met in his L5 vertebrae
By March 2026 in severe pain from the met, on steroids and painkillers
End March 2026 - Sabre treatment. PSA starts falling again
Aug 2026, PSA rising again. Met in L5, hip, lower ribs and maybe others, I don;t remember
Mid Aug 2026 to End Sep 2026, increasing leg pain and pins and needles from the L5 tumour. On steroids, codeine and oral morphine. On crutches but not sure what is the muscle injury vs the timour pain.
Oct 26 - we will hear what happens next on Wednesday

@Tinyhands I’m so sorry to read that you and DH are having such a hard time of it at the moment. It can feel totally relentless. Has there been any mention of a short course of radiotherapy to relieve symptoms from the troublesome met? I say this as my DF has a met on his lower back that could have left him unable to walk and he had a 5 day course to try and shrink it back down a bit which worked (for now).

In terms of work, do they offer sabbaticals? If not, is there any chance you could work more flexibly by decreasing hours/days?

Has he had radiotherapy? My ex fil had radiotherapy for his & the had diarrhoea as one of the side effects, they said it had basically burnt his bowel, it's apparently very common.

Thank you ❤

We thought he'd be offered radiotherapy before the trial but he hasn't been. Apparently his consultant also says he can't have SABR again as it's too much radiation. But maybe tomorrow it will be a different view given the pain is actually disabling him.

I was supposed to go to the last appt with him, but the road to the car park was closed and it took me 30 mins to get parked so I missed it. So I only know what he tells me.

We do have private health care (through my job, another thing to consider in whether I keep working). We've not used it yet because the first trial even though he is in the control group means he gets very good NHS care (they need their control patients to be showing the best of the current standard care) but if he's reached the end of what the NHS can do we may still have options.

Work will be flexible with WFH. They have a sabbatical scheme but it's only three months and you have to have 10 years' service which I don't. Beyond that it's manager discretion. In an ideal world I'd put the job on hold for a couple of years until ...... and then be able to pick it up again without losing things like deferred bonuses. Basically like mat leave at the other end of life 🙁But obviously that's not realistic.

Part time in my current position wouldn't work at all, it's moving too fast. You are either full in or it's moving past you too fast for you to be useful. But maybe they can park me in another area for a while. Still a risk I can't get back to my current area but less so if I'm still "in the house" as it were.

@Tinyhands I'm so sorry it's turning out like this.

What jumps out from your posts is the mention of constant pain. That in itself is debilitating and sucks all the joy from life. If you can get it under control it's likely that everything else will become easier to deal with. You mention a lot of treatment based things but I'm wondering whether anyone has put as much effort into pain control?

Early on in our journey our GP referred us to the palliative care team, saying they were the absolute experts in pain control and maximising quality of life, and so it proved. If you haven't had a referrral and can get one I'd grab it with both hands.They will likely have a family support team as well, they were grear at supporting me when I had questions like the one's you're asking.

Thinking of you and sending strength.

Chris Hoy’s book ‘All That Matters’ is a good read and quite hopeful (by the end). Might be a good read for either of you - particularly if into cycling / sports / motorsport / remember his Olympic feats. He was diagnosed with Stage 4 prostate cancer in 2023 (IIRC) after seeking treatment for what he assumed was a shoulder injury!

Much love to everyone struggling with this.
My husband aged 62 had a DRE for follow up early bowel cancer. Surgeon found a prostatic nodule. PSA done 5 days later was 14.6. We are both utter;y terrified.