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?

I'm sorry you have not had any replies. Is it worth asking on the prostate cancer charity site? Also i definitely recommend using a Maggies Centre if there's one near you

@NorthernDancer
You are definitely not alone, unfortunately. My DH was diagnosed 3 days into the first lockdown. Stage 3 with spread to local lymph nodes and a Met on his pelvic bone (although it’s not 100% this was a Met). He had chemo, 39 sessions of radiotherapy and 3.5 years on the injections. His last injection ‘ran out’ 2 years ago. His PSA has rise. A bit since but nothing showed on his recent PET scan.
The lack of testosterone had a huge impact both physically and mentally and I found it very hard. He was emotionally and physically very detached, and developed mood swings and was very snappy. It was like treading on egg shells. Most side effects have worn off to some degree.
Is your husband also taking a second generation medication such as aberaterone or enzalutamide? These medications can remain effective for many years but no one knows how long for. Life is never the same again.
There are 2 great forums for Pca - MacMillan and Prostatecanceuk with such lovely and supportive members posting. I recommend joining them both.
If you have anymore questions let me know.

I'm in the same boat with DH. No time to post now but placemarking so I can come back to add more info later.

Thanks all. I thought there would be more of us out there, sadly.

We have no Maggies locally and our Macmillan Centre seems to be closed every time I am at the hospital, which is not helpful, but the PCUK forum and helpline have really helped so far.

DH was diagnosed with MPC last autumn. After a recurring UTI he had a digital prostate exam and then they put him on the two week pathway. I went to see the consultant with him when he got the results. Gleeson 10. I lost count of the bone mets after she had read out the first four. Lots. When we left the room I collapsed on him.

Anyway. Androgen blockers. Dec to March was chemo. His PSA went down very fast til it was negligible and the doctors thought the longer end of 4 to 7 years, but in the last two months it has started rising again. Still someting like 0.1 but two months before it was 0.0 something. His bone scan showed nothing new and he had a visceral scan which we have not got results from yet. But that PSA rise is coming from somewhere. He is seeing his consultant for the regular check in next week and we both assume since he has not had the results yet there is something there. We just hope it's something that can be cut out.

When I think about it my chest feels like someone took a wire brush to my heart. We are only in our mid fifties.

But we appreciate each other so much now. So much love, for however long we have.

Hi - so glad to join this conversation but also sorry to see others struggling too. DH has been having hormone injections and about to start radiology. Naively I thought sex and intimacy were off limits temporarily but reading up on it it would appear this could be permanent. How do manage your own mental health when it sounds so selfish while he’s in the fight for his life and he’s the one having these treatments?

Can I join? Sorry to hear these stories. My DP was diagnosed in August after I told him to go to the GP because I had noticed he was either rushing to the loo or taking ages to pee. Stage 3b with tumour all over the prostate and in the seminal vesicles, but they think not spread. He had a radical prostatectomy 10 days ago and is slowly getting better but it was pretty brutal. He's black and blue with bruises still. We now have to wait another 5 weeks for another PSA test (it was 36) and the hope is it will be very low, but if it isn't, he may need more treatment. He's 57 and I'm 53, and at his first appointment they told him the aim is for him to have a 'normal' lifespan. I hope so. So sorry for those who already know that won't be possible - wishing you all courage.

Hey ladies and @NorthernDancer - promise you are not alone. i'm joining you. Husband was diagnosed with MPC in Jan stage 4. It's in his lymph nodes but has not metastasized elsewhere. He's had chemo and radiation and is on the hormone suppressants and his PSA is 0.1 now having reached 85. He's just gone back to work after all the treatment. He's 52 and i'm 47 and we're trying to lead as normal a life as possible, but it's hard - we have a 16 and 12 year old too.
The meds to quash the testosterone have made him much more emotional, snappy.
I've joined the Macmillan forum, and a Facebook group, but the women there seem much older than me.
As the moment the cancer is sleeping, but sometimes when i think about things too much, i too feel like there's a weight on my chest and can't breathe.
I've also had to up my dose of anti-depressant to cope.
@HollieHotspurs i hear you about the intimacy and sex - I pushed him to go to GP as he was having issues with erections - i actually don't think he'll ever have another erection again, but have not told him this, which is so sad, on top of everything else.
We've never asked the 'how long' question.
My mental health is steadyish at the moment, but when he was diagnosed, i couldn't stop vomiting daily and having panic attacks. Here if you fancy chatting.

I don't know why I've only just noticed this thread.

I lost my DH to prostate cancer three years ago, but before you all panic, his PSA at diagnosis was over 2500 (that's not a typo) and he was relatively well for a long time. We wouldn't have coped without the support of the palliative care team, who looked after both of us and provided things we didn't even know we needed. If you're sadly looking at management rather than cure, I strongly recommend asking for a referral to the palliative care team in your area. Ours had a special family support team as part of the setup, it helped to be able to talk to someone about just my problems.

I really recognise what @Tinyhands said we appreciate each other so much now. So much love, for however long we have. and I hope that happens for you all too.

Hello everyone, so sorry you are all going through this. My DH is 51, diagnosed with stage 3 prostate cancer in January. We were told we could watch and wait but he chose to have a radical prostatectomy followed by radiotherapy. After several rising PSA tests he had a PET scan last week. We were told last night it has spread to his bones and now stage 4. Apparently is has been highly aggressive. I feel like we haven’t been given much hope by the consultant. He started bicalutamide today and will have chemo starting in next couple of weeks. I am 48 and our children are 16 and 13. I can’t stop shaking and feel sick to my stomach. We coped ok with the impotence and incontinence following surgery. I’m scared about the side effects of the hormone therapy and chemo and how this will affect his quality of life for the time he has left. I feel so sad for him.

Hello all, we’ve been told very little really. Just a Gleason score of 3+4 (was 3+3 last year) and it’s mastated to hip. The letter just had a box ticked by “advanced prostrate cancer” and said “we expect you to have many years” so what’s many?! I have caring responsibilities for a parent and a day where I babysit a grandchild plus working 4/5 full time so I’m limited to appointments I can go to so I feel really in the dark. He’s also pressed the fuck it button and is eating rubbish and drinking to excess. Another week and a half of radiotherapy so I’m just praying it settles down a bit but I’m not holding my breath!

My dad has it, diagnosed in 2021 with MPC spread to the bones. He has had two rounds of radiotherapy (second round was short and targeted at a specific met which was causing trouble), chemo and various hormone drugs which have all stopped working. He’s now having radioisotope therapy which was relatively recently licensed though I don’t think it’s available on the NHS yet. PSA prior to the most recent therapy was around 1600, waiting for the updated PSA results.

He is still in relatively good health and has continued to work throughout, though he is undoubtedly tired.

It’s hard because it’s so unpredictable. There have been times of slow growth and then times of rapid acceleration. My heart goes out to everyone on the thread x

Hi, I’d like to join too. My husband was diagnosed 3 yrs ago and has been on testosterone suppressant which worked amazingly, beyond medics expectations. Sadly their effectiveness seems to have waned as PSA levels have started to rise. He will be having a scan and face to face appointment with next blood test appt in 3 mths to look at what happens next. He finds it easier to deal with the now and live in the moment and not look to far ahead whereas I can’t help looking to the uncertain future. I guess I need to sit tight and see what the next appointment brings.

Hi, my DH was diagnosed just before christmas 25 with grade 1 and grade 2 so we are waiting for our next appt in 3 weeks time to discuss options.

im glad i found this thread.

DH is unable to have MRI scans due to having a VNS implant (vagus nerve stimulant for epilepsy) so although they think the grade 2 hasnt spread they cant be sure as they are unable to see it.

im also concerned because he keeps having diarrohea and worry his bowel might be compromised but he cant see the connection - anyone elses partners had similar?

My DH has stage 4 PC diagnosed in 2022. It was in the prostate, seminal vesicles, lymph nodes and one bony met. Gleason 9. He has 3 monthly injections and Enzalutamide and had radiotherapy soon after diagnosis. It can't be cured but the aim is to keep it under control which has been successful so far (original PSA was 54 and now down to 0.02). We are coming up to 4 years since diagnosis now though and I am aware that it can all change at any time. He will be 80 this year so significantly older than most others on this thread and DC are grown up so feel relatively lucky compared to others.

@bilbodog my husband has had bowel cancer screening from a poo sample which luckily came back clear. His has spread out of the prostate so this was a concern for us.

Update on DH - despite having a VNS implant they decided they could do an MRI scan. We are now waiting for addenbrooks to let us know if they want to remove the prostate or not. This is partly due to DH already having osteopenia from 50 years of epilepsy medication and the fact that radiotherapy and hormone therapy would make that worse.

This week is hard. DH's scans at the end of the year came back clear. The consultant said they didn't need to do anything yet, they'd just keep watching his PSA and if it went over two they'ddo something. Then his January PSA test came back as two, which was more then triple the last one. So he's had a PET scan and has an appointment on Wednesday with his consultant. The hospital have added another appointment same day so he's expecting some sort of treatment or preparation to start.

He's hoping the fact that the new appointment is still urology oncology not a different department means whatever is going on is local to the prostate and can be treated.

Still, it's less than 18 months since he was diagnosed and not even a year since he finished chemo. And if something is growing that must mean the cancer has become castration resistant. I did think when the doctors were really positive about his progress we'd have a few years' grace before this happened.

We bought a holiday home at the nd of last year. Even though I can't retire yet, we wanted to give ourselves some of what we were planning to do in retirement. We don't expect to travel often because of insurance (even the firms recommended for cancer patients are quoting 3k or more for single trips) so it's nice to have a place we can go to.

I should cry. Sometimes my eyes prick and water but mostly I just feel so so heavy.

still waiting for the results of the nuclear bone scan but DH has been asked to attend a PET/CT scan as well now.

anybody know why he is having this further scan - does it mean the bone scan has shown cancer?

@bilbodogthe PET/CT scan is probably do double check for any spread before they decide whether surgery is possible. If it staged as T3b it very probably won’t be. Maybe not if T3a either but it depends on hospital policy. With a T3 diagnosis there is a fair chance of recurrence after surgery then needing radiotherapy meaning 2 lots of potential side effects.
If your DH has osteopenia he may be able to have tablets or infusions to help prevent further deterioration.

Just wanted to recommend the prostrate cancer facebook groups as very supportive.

DH was diagnosed 2 years ago and tried the alternative route whilst monitoring.

Despite very positive early indications it started to change before Christmas and he had surgery last week, just waiting for post surgery updates on the 26th.

Such a rollercoaster isn’t it, I don’t know why anyone says this is an ‘easy’ cancer.

Much better news than we feared. The pet scan only found one tumor. It is on his spine but the doctors seemed to think it's treatable. We don't know the details of the treatment yet but we assume it will be some sort of radiotherapy.

I'm surprised this thread hasn't had more traction. Im amazed by the incredibly varied types of treatment being prescribed.

As briefly as I can, DP diagnosed age 51 end of 2022 with aggressive PC after his dad had been diagnosed with a milder case.

We did hormones, steroids, 6 rounds of chemo and 4 weeks of daily radiotherapy. The hormones continued. Then remission, PSA 0.01%. Then suddenly in 2025 it all came back, PSA 11, then more scans, a PET scan. It's spread into the bones. Long story short, he has the BRCA gene mutation. Between 2 and 7 years is the prognosis. He's taking chemo tablets, hormone injections and zometa infusions for his bones.

To say I'm gutted doesn't cover it. We met in our thirties and this is so painful. I would love to be part of this support thread with you all.

That sounds incredibly difficult to process @BlackCarrot.
All I can offer here is information regarding alternative and natural health remedies.
We spent DH’s £100k life insurance payout trialing whatever we could find for the last two years.
Not sure ultimately how well it worked until next weeks post op histology but he managed to shrink the tumour by two thirds, the prostate itself by 50% and improve his general health immeasurable.

It’s so hard, DH is half way through his 6 rounds of chemo now. He’s also started taking darolutamide and hormone injections. His PSA is now down to 0.01 so he has responded quickly to the treatment. We are waiting the results of a CT scan as a lump has appeared in his groin, it will also show how well the mets in his bones have responded. I am so anxious about the scan results. However I also go through waves of feeling positive that he has responded so well to treatment. His cancer is also aggressive and they have agreed to test him for the BRCA gene. I am aware that the treatments only work for so long and then PSA will start rising again and this is constantly on my mind. I am hoping we get to a point where this just becomes our new normal, as living with this constant anxiety is not sustainable. It’s so hard to plan for the future. He is only 51 and I am 48 so retirement is a long way off, but he is talking about giving up work to bring our bucket list plans forward. We have two teenagers and the next 4-5 years are crucial school years for them, so I feel really torn about supporting his grand plans, but also maintaining some stability for our children. Sending love to everyone else going through this.