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?

That does sound very hard @MyPeachHiker

I really hope this thread keeps going. DP had his second Zometa infusion on Friday. Was less awful than the first one. He now only has to do bloods once a month so four appointments down to three a month. I wonder, cancer is so clever, will it understand the chemo and hormones and adapt to cause something we aren't treating now? The Zometa is monthly for 2 years. Does that mean treatment changes? All questions for our next appointment with the consultant. I go from being so positive to thinking about what the end mighty be like. Sending love to all going through this ❤️

@BlackCarrotJane McElland is very good for exploring cancer pathways and how to block them.

Hi everyone. I’m glad I found this thread. My DH has both bladder cancer and prostate cancer diagnoses. Had surgery and chemo for the bladder. Prostate was being actively surveilled but PSA has recently shot up to 17 and his prostate has enlarged.
if feels ominous to me- do you think I’m overreacting?
I don’t know who to share this with and he’s been so challenging to live with (I feel terrible even stating that)

Has your DH had a PET scan?

I don’t think you are overreacting at all PSA alone is confusing, it is said doubling is concerning but equally a high PSA reading could be an infection, can be linked to over exertion or would be raised if carried out immediately after a physical prostrate examination.

The guy that originally developed the PSA test has written a book and says it’s being used incorrectly for diagnosis and shouldn’t be relied on for various reasons including some of the most aggressive prostrate cancers having a low PSA.

Hi @Manifesto sorry you are going through this. I dont think you're overreacting. A PSA of 17 is okay if your DH reacts to hormone treatment. Is he receiving that? I'm sorry @stayathomegardener But I think you are spreading misinformation and causing unnecessary worry. Why on earth you spent 100k on alternative treatments is beyond me. I certainly can't and wouldn't even if I could. The PSA test is accurate once a diagnosis has been made. Stay strong @Manifesto And listen to the expert advice. Sending strength which is what we all need right now x

@BlackCarrotwhy on earth wouldn’t we spend insurance monies and try alternative options?
We have hardly been irresponsible given this was in conjunction with very conventional treatments.

Things like home hyperbarics, Vitamin D lamp and Infared saunas have improved DH’s overall health immensely.

There is so much unknown regarding cancer and to me an open mind is key but I will bow out of this thread as I do understand everyone’s approach is different.

Thank you so much @BlackCarrot. I feel I have no reference point and feel quite adrift. He’s had no treatment yet - perhaps they’ll suggest some after the biopsy he’s got next week. I really appreciate your reply

Hi all

I started a thread a while back about DH's PSA and biopsies but got very little traction there.

DH first went to GP about 3 years ago with a few symptoms. Has had about 8 PSA tests since then - all high and keep getting higher. He has had two biopsies which never find anything even though an MRI suggested there were 'dodgy' areas (for want of abetter word) . The consultant keep sticking him on anti biotics. He is in a seemingly never ending cycle of ABs, PSA test, MRI, biopsy.

DH is an anxious person around pain, tests and procedures so it's very stressful. The last biopsy said cancer wasn't found but that they couldn't rule out cancer....

It's maddening . Not sure if anyone has had any similar experiences

Hi @thaneofglamour. I feel like we’re just starting on a similar merry-go-round
unfortunately. I guess that’s just the way it is but it’s mentally exhausting as well as the obvious physical side

Yes, it really is, isn't it? And quite bewildering.

@thaneofglamourwhat type of biopsy was it? Transperineal are much more accurate than the old TRUS type.

Trans perineal, I think. He's had three.

@thaneofglamour has he had a PET scan? The rising PSA results are worrying. My DP was never given ABs. The treatment for prostate cancer seems so random. DP had a biopsy which was conclusive but they aren't always. I had a wobble tonight, I know they can't cure his cancer but we don't have any means to do anything else other than the treatment the NHS offers. We're planning to elope this year and I'm ridiculously excited. We take each day as a bonus but I can't imagine my life without him. Sending strength to you all

No, he hasn't had one of those - he has had MRIs. I don't know if a PET scan would still lead to a biopsy : which then would prove inconclusive again. Neither of us knew until the last biopsy that they weren't always conclusive.

Sorry about your DH - sounds really tough for you both. These websites might be of help to you and your husband

Also your DH will probably have a CNS - do ask them for support for you both. They can also steer you to local support services.

There might be a prostrate cancer support group your DH can join.

Do take care of yourself it can be really tough looking after someone with cancer and loved ones/carers put all their energy looking after others they neglect themselves.

emotional support
https://can-empower.org.uk/

Finding local support. Put your post code in to find support services you might need or want.
https://www.cancercaremap.org/

Macmillan cancer support
https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone/looking-after-someone-with-cancer

carer support
https://www.carersuk.org/help-and-advice/practical-support/conditions-hub/caring-for-someone-with-cancer/

And….we’re on another round of the merry-go-round with a new inflated PSA and a biopsy this Saturday.

it feels like we can’t plan anything.

I feel your pain. It's madness- I am not a medic at all but there MUST be an alternative??

Hey @manifesto so sorry this is happening. I totally understand the not being able to plan anything. Life goes on hold. When DP was first diagnosed and had chemo and radiotherapy he was severely immune comprised and we missed christenings and family gatherings. We couldn't go away anywhere but we had hope. Then we came out the other side, life was our playground for 12 wonderful months then, bang it's back. The chemo tablets mean no immune issues, the doctors have encouraged us to live as we want, they will tailor treatment around us. My daughter is getting married soon, we have a holiday booked but the hope has gone, DP is classed as receiving palliative care despite having some years left. I don't know what I'm trying to say. I have tears typing this. Fight for what you need, keep going. Small wins are still wins, coffee and cake, a takeaway and a film. I didn't mean to make this about me. Please keep posting x

Hey @manifesto so sorry this is happening. I totally understand the not being able to plan anything. Life goes on hold. When DP was first diagnosed and had chemo and radiotherapy he was severely immune comprised and we missed christenings and family gatherings. We couldn't go away anywhere but we had hope. Then we came out the other side, life was our playground for 12 wonderful months then, bang it's back. The chemo tablets mean no immune issues, the doctors have encouraged us to live as we want, they will tailor treatment around us. My daughter is getting married soon, we have a holiday booked but the hope has gone, DP is classed as receiving palliative care despite having some years left. I don't know what I'm trying to say. I have tears typing this. Fight for what you need, keep going. Small wins are still wins, coffee and cake, a takeaway and a film. I didn't mean to make this about me. Please keep posting x

this is exactly the same as my husband. Multiple biopsies and the 6 monthly blood tests show the psa rising every time - it’s now at 28 ( was 10 two years ago)
No cancer found in biopsies or mri but he is now scheduled to have a different scan, not sure what it’s called. He is always needing a wee and then takes ages to start.
So sad for all of you x

@BlackCarrot Im not sure what to say but hearing your story is both moving and helpful. It gives me some context and lands as so real - when none of the leaflets and advice does ( I hope that makes sense).

We are trying to book short breaks and say yes to everything. And thank you all for keeping posting about your situations. Without you I have no benchmark as to whether my feelings are selfish or normal

https://www.theguardian.com/society/2026/feb/28/researchers-praise-stunning-results-of-new-prostate-cancer-treatment

This has given me hope this morning.

Great to see that article above. Really hopeful.
DH has his biopsy yesterday. Prostate is severely enlarged - 100cc. Now waiting for the results. Feel a bit numb.

I feel a bit numb that is! I expect he wishes he felt numb down there 😬