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