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?

Hey everyone, how are we all doing? The Guardian article is positive but it doesn't talk about when prostate cancer has spread to the bones. Any hope is a positive for those with a new diagnosis. We've got an appointment this week to check DP is okay to keep taking the chemo tablets. I'm hoping it will be the case. We're so wrapped up in my daughter's wedding plans, it's a lovely distraction but if I stop and think I feel so sad. DP is a warm, kind, gentle man and if feels so unfair, after a life of stressful relationships we finally found each other and I'm nowhere near letting go of our life. Let's hope new treatments keep coming x

Hi @BlackCarrot

I'm glad you have your daughter's wedding to bring some lightness and something else to focus on.

DH now has a date and info about his next round of treatment - he is going to have SABR treatment for the tumour in his spine at the end of the month. It is part of a trial although it's not a new treatment or anything, the trial is to see if it's a good treatment for men at a specific point in the disease. So today he was at the hospital being fitted for a cast thing to hold him still during the radiotherapy and having litttle dots tatooed on him so they can align it properly. The dots have made him miserable, he has never liked tatoos so having to have them now feels like that's one more thing that cancer took away from him.

The tumour has also been compressing the nerves in his spine causing leg pains. Over a week or two it went from twinges now and then to lying on the couch in pain all day. The hospital have given him steroids and painkillers so he can manage it until the SABR, which will hopefully zap the tumour back down again.

I guess this is how it will be now, whack-a-mole of individual tumours until one turns up somewhere they can't treat. The best we can hope for is that the whack-a-mole period goes on some time before that happens.

I'm going away for the two weeks between now and then. He's been very clear he wants me to carry on doing stuff and not put my life on hold for him - says I'll need a life to come back to. But I am worried about how he will manage emotionally. He was going to arrange to visit friends or have people visit, but he hasn't done it.

@tinyhands that sounds incredibly stressful. What is SABR if you don't mind giving an insight? Always better to hear from a person rather than a Google or AI search. DP had radiotherapy so I understand about the dot tattoos. In the grand scheme of things they are helping prolong his life, embrace them I say at least they're not that noticeable and they are serving a purpose. It must be hard to go away and leave him. I love the whack-a-mole analogy although the reality must be awful. I will whack those moles with you from afar. Sending strength to everyone going through similar. It's a journey I wouldn't wish on anyone x

This thread is a good support for partners and should be kept going. One in eight men will be diagnosed with some type of prostate cancer and sadly 11,000 men die each year. My husband is at the start of this journey, totally asymptomatic fit and healthy 63 year old who is waiting on the results of an MRI scan following a psa level of 25 discovered incidentally while in hospital following a fracture. I know quite a few men who have had successful treatment for PCa and who are well 6/7/8 years later, but also know a few who died young. Treatments are improving every year but it’s a horrible disease, and it’s frightening that you can have advanced disease with zero symptoms. Keep posting everyone, it’s good to chat. I can also recommend the MacMillan site for prostate cancer support. There are some very knowledgeable people on there.

DH has his next set of blood tests today after 4 weeks of anti biotics. No doubt to go back round the circle again.

And it is a circle isn’t it? I’m grateful but find the continual tests and scans and visits drain my of the much needed positivity to support my DH

SABR is basically firing burst of radiation from lots of different angles into the same place, so the tumour gets hit each time and gets a big dose but all the surrounding healthy tissue only gets hit once or twice so only gets a little bit.

https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/radiotherapy/external-beam-radiotherapy/stereotactic-ablative-radiotherapy-sabr

As I said, it's not new, I think the point of the trial is to track men having different treatments for similar diagnoses and make really good records so they have a good dataset to see what has the best outcomes for the biggest group.

I still find the antibiotics very strange. Does he have an infection somewhere?

Well, their persistent theory is in the prostate. That is a thing but he has no infection symptoms. I am not sure they know what to do.

Update on my DH - hes had a PET-CT scan now which seems to indicate no spread from the prostate so we are just waiting for Addenbrookes to let us know if they agree and are happy to remove the prostate - i gather its about a 6 week wait atm so looking at april.

we need to go and visit our son & wife in malta when we can as they have just had their first child so wondering how long it might take DH to recover and be safe to travel? Does anyone know if travel insurance is going to go through the roof as well?

Hello All.
DH was diagnosed 11 years ago now aged 43.
PSA was 131, Gleason 4+3, (upgraded to 5+4 after removal).
It had spread to lymph nodes, but luckily not his bones.
He had a Total (Radical?) prosectomy and then Radiation Therapy.

Seeing as though we are 11 yrs on from most of you guys, I'm happy to try and answer any questions anyone might have.

Can I suggest you get on to the brilliant MacMillan website. There is a forum on there specifically for prostate cancer with many people giving advice who have PC or who are supporting a partner/relative.

https://community.macmillan.org.uk

@charliehungerford

Thanks i will do that.

Hi there,
How is he now? He was very young when diagnosed - must have been very hard for you both

Hi,
I would like to join this thread too. My husband is going to be having a prostatectomy in May. Any advice from those who have supported someone through this. Thanks

@Plantyshazfan
I'm sorry to hear you're going through this as well. It's hard for both of you.
We amazingly had a miracle outcome from his Prostatectomy. We were very lucky. His PSA has been zero ever since. Not bad after being given 6 years max to live.
I expect you have been told the after effects of the Op?
My DH is not a talker, so it's been quite hard to support him. He made a good recovery from the (very very long) operation. He looked pretty ok when he came out, despite warnings from the surgeon he might look pretty awful and puffy.
Telling the kids Dad has cancer was awful. But they got through it. We have still never told them the full extent of how bad the prognosis was, even though they're in their 20's now. I suppose our DS should know at some point.
I think all you can do is go at your DS's pace. Make sure he know's you still love him despite any after effects, but allow him time to come to terms with his new body.

Good luck.

Hi
Been reading this thread for a while but thought I'd post today for abit of help if a tall possible from your experience.
Bit of background...... DFIL diagnosed with advanced PC early NY, scans confirmed it had spread to lymphnodes and bones (pelvis, spine, neck & shoulders) and PSA over 200....... since then they haven't been able to really get any answers, he has been put on 2 meds (Zoladex & Apalutamide) to manage it.
Had biopsies done a month ago and been back today but they haven't informed them of the full results other than it has confirmed what they already know!

As you can all understand it's really difficult right now and both my DH, DMIL & DFIL are really struggling to process everything without many answers, we all know that there's no cure but just a case of manging it with hormone treatment. Chemo hasn't been mentioned as a possible option, Radiotherapy and trials he isn't suitable for due to other health issues. All they seem to be being told is "see in 6 months" they have asked about holidays etc and making plans to enjoy whatever time he has but again no real answers just "well you could get a weekend away"

Has anyone been in this situation? DH is now firmly of the mind that they are basically doing the bare minimum and just making him comfortable for however long he has left and then they will just let him die. In a nutshell I suppose they are doing that as they know they cannot treat it but this is all new and I think they just want to way of knowing fully what they are dealing with, how aggressive it is etc and an idea of how long he has left but it isn't forthcoming.

Hi @justaboymummy my DF was diagnosed with advanced prostate cancer in 2021 (prostate & local lymph nodes). I’ll give you a little run down of his treatments so you have an idea.

He started on hormone treatment and his PSA levels were checked every so often. Just over a year later (Dec 2022) we received confirmation that it had spread to his bones (initially 5 sites). He started radiotherapy in Jan 2023 and was placed on an alternative hormone concoction. He had some more targeted radiotherapy in the summer of 2024 for site pain. The hormone treatment stopped working altogether so he started chemo in late 2024 which brought his PSA level right down to around 200 (they were over 1000). His PSA levels began to rise again in 2025 and he started radioisotope therapy in the autumn of 2025 (PSA around 1,600) which was great for a little while but after 4 treatments the efficacy started to diminish so they took him off that.

His PSA levels are now back to around 1,300 and we are waiting to see what might be next. His consultant has mentioned the possibility of more chemo but it isn’t scheduled yet. He has been on bone strengthening meds for a little while but other than that he isn’t currently receiving anything.

He is tired and easily rattled, but other than that he seems in relatively good health. He has some localised pain and is still working part time. He goes on holiday regularly but he doesn’t go outside of Europe now. Travel insurance isn’t really available.

Planning things can be a nightmare but you get used to it.

I hope you get some answers about FIL soon.

Prostrate cancer UK nurses are brilliant for over the telephone support of the patient and or the partner too. Every man and every partners experience is completely different even the diagnosis sounds the same. Also you could contact the hospital or google to find out if any prostate support groups are available in your area locally. Although these will vary depending on the committee, organisers and attendees etc. Take care xx

Update here - we were at Addenbrooke's today hoping for confirmation of surgery but things went pear-shaped. The surgeon said my DH is high risk due to epilepsy - they worry because its a long operation and for a large part of it he would be on a tilted table which can cause swelling in the brain, then on top of that they realised he had keyhole scars from many years ago when he had an operation on his oesophagus which has probably left scarring inside his abdomen. So we came away deflated and now having to go back to radiotherapy and hormone treatment.

has anyone tried to go on holiday whilst in the midst of disgnosis? How does it affect travel insurance? We only need to go to malta to see our new grandson.

If you disclose you are awaiting diagnosis for anything, no one will insure you. Not even the specialists. It's a really unfair grey area.

Agreed, he hasn't been diagnosed with anything to disclose. That has been our way of looking at things. Even with our new diagnosis I can't see it causing an emergency abroad so won't say anything.

@bilbodogdoes your DH have a diagnosis yet? I assumed he must have as you had been discussing surgery.
Once you have a treatment plan you should be able to investigate travel insurance.
You will probably need to use a specialist insurer and I suggest you call instead of filling in online.
You could try Avanti, All Clear, Insure and Go, insurancewith, Staysure.
We have used Avanti.

@BlackCarrot I am so sorry. I didn’t realise that PC was also linked to the BRACA gene, does that mean daughters of men with PC should be screened for it? My
father has PC 😓 which has spread to pelvis and other areas. Has had various treatments including two course of targeted radiotherapy.

DF also had no symptoms on diagnosis, scary.