Shock diagnosis after annual GP MOT

Hi Cal58 

sorry to see you in this forum but a very warm welcome as the people in here are amazing . 

my OH  aged 73 is on a palliative treatment plan as it’s in a lymph node that the oncologist won’t touch due to the side effects  . He  started on Bicalutimide then onto Prostap injections every 12 weeks and Abiraterone for as long as it works . He had radiotherapy once a week for 6 weeks . 

his side affects are :  mood swings , cries at the stop of a hat , ED, fatigue and very occasionally a hot flush . He walks every morning and goes to the gym at least three  times a week and this has helped with the fatigue .  His PSA is currently undetectable .

best wishes & hugs 

Liz & OH xx

Thanks for the info. It has been reassuring to hear other peoples journeys. We'll just have to wait and see I suppose 

Best of luck to you both

Hi cal , your OH  is  about 2 weeks ahead of me , looks like we doing the same path.On Bical and get my first injection next week , then in late October for RT, Wishing you guys all the best .

Mark.

Best wishes to you too 

Hello Cal58 

Welcome to the group although I am so sorry to find you joining us! Sounds very much like a "curative pathway"!

Side effects affect us all differently - I had all the ones in the list and some not listed (click on my name or avatar for my journey). Best advice I can give you is:

* Try and keep the OH as fit as possible (hard I know).

* Be there for him when he's feeling he's not good. Side effect creep up on you.

* Ask your team for a prescription for vitamin D and calcium tablets if he's not already on them (HT can weaken your bone structure!).

* Any questions however trivial or you need to vent we are here for you.

It's a hard journey - but remember the two words - "Curative Pathway".

I hope my ramblings help.

Best wishes - Brian.

Hi Cal 58, my husband also ha and still has the same side effects that Liz's husband has. I think the hardest to cope with is the mood swings and crying.

Hi Liz, as Richard is now just on palliative treatment, I wondered whether your OH had any pain. He is still on Prostap but the Bicalutimide didn't work. Now out of options and psa rising but we knew it was not a curative path.

However, we have now opted for palliative radiotherapy on his upper spine as he is getting quite bad pain in his neck and shoulder, so hope that will alleviate some of the discomfort.

Also wondered what his last psa was as R's was 78?

Love

G xx

Hey G Sidsmum 

hope you are both doing ok.  my OH had no pain from the PC . He had an injury years ago with a scuba tank and it actually showed up on his MRI & other scans . So we know it’s ok.  His last PSA is still undetectable which surprised the Oncologist as he didn’t think it would go as low this had been since begin Xmas. It did jump a little during his RT but nothing to worry about. 

We have a really close friend  who lives in USA  and is similar to Richard diagnosis   . The HT is  no longer working for him and the RT did help and has  no pain 

they are now going to trial him on Pluvicto  it’s expensive 

I do hope the RT helps with the pain. 

hugest hugs & let me know how things go. Liz & OH xx

Thank you. We will see how he goes with  side effects. Consultant has asked GP to sort out the Calcium & Vit D prescription. 

I agree 'curative' is a good word

Hi Cal58 ,

Like so many on here, I am sorry that we have to meet in these circumstances but we are in a place where support is second to none!

I began the PCa journey in March 2023 and was treated with HT followed by 20 fractions of RT, that was considered by the Oncologist's to be a Curative Pathway.

I'm now on a remote monitoring program with PSA tests every six months, yesterday's communication from the hospital was a PSA level classed as 'Undetectable' at my last blood test on the 30th June 2025.

You are welcome to read a protracted diary of my journey through all of this by clicking on the icon beside the top of this reply. The name on the icon is no more than a joke as it is simply the make of my motor caravan!

I wish both yourself and your OH all the very best,

Rod

Hi Cal

my husband had no symptoms at all but had been on 6 monthly PSA monitoring for many years due to  a high incidence of aggressive breast cancer on his mothers side of his family and prostate cancer on his fathers side. We watched his PSA rise over those years and eventually they decided they needed to act! He was diagnosed as T3a N0M0 Gleason 4+3.  

we found the diagnostics pathway incredibly slow, stressful and distressing but the oncology department in charge of radiotherapy and hormone therapy was brilliant. 

The side effects of the HT crept on my husband very slowly. He had a few sweats but not much. He gained a bit of weight around his middle and developed man boobs - more cuddly?!!! ! He coped with these very well. He was less able to cope with  a very much lowered mood and nearly gave up at month 18 when he was struggling  with other health problems. He had literally reached rock bottom and so the oncologist stopped the HT in May 2024. We were told he did not need calcium and vit D supplements but I feel that was bad advice as he’s been diagnosed this year with osteoporosis. We both got extremely tired with the 20 trips to the hospital for the RT. ( I did the driving). 

All in all, I would sum it up as a ‘rocky road’ with some days better than others. It didn’t stop us going on holidays , enjoying family times etc etc but there were days of some fatigue and brain fog for him. We just gritted our teeth and got through those less easy days - you have no choice, really! A surprising side effect was that we grew much closer and our adult grandchildren actually became that - adults! It was as if they suddenly realised that we would not go on for ever! They all gave us so much support and care and consideration and that has not stopped. 

He has now been off the HT for 14 months and I have my husband back! He is constantly active, busy in his man cave or garden or with DIY! The PC took its toll on both of us but the treatment has, hopefully, given him extra years.

i think it’s really important to note that we are all different and so react differently to the diagnosis and the treatment. I think , too, that it is important to recognise that this is a couples illness. It affects both partners. I feel strongly that all attention is directed at the patient and there is inadequate recognition of what the wife or partner is going through. This needs to be changed! We went to a local prostate cancer support group where we were told ‘ well , she’s a woman, women don’t count’. ….. ( I have deliberately not typed the expletive this statement demands!)

I found this forum a life-saver, a wonderful support and source of information. More importantly, it gave us hope and a space for me to express the worries I did not want to burden my husband with.

I wish you and your husband all the very best . A cancer diagnosis is not what any of us wants, the treatment can be tough but there are lots of positives in the mix too!