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User
Posted 02 Feb 2025 at 09:20

Hi all,

I'm Kate, and my partner is having tests to determine if he has prostate cancer. It all started with a PSA of 35 which then led to a nuclear med bone scan which showed a suspicious lymph node but no other evidence of spread, which I am holding on to as a positve for now! He then had a multi parametric MRI, which came back as a grade 5, and we are now awaiting a date for a biopsy. He is convinced he will need surgery to remove the prostate but I've said to him, let's get the biopsy done first and see where we are, and go with the advice from the specialist. I might be burying my head in the sand, but I don't want to jump too far ahead at this point! I think he's been talking to his golfing cronies, and it sounds like 1 or 2 have had similar experiences but no two cases are the same, we just have to get the biopsy done first and then see how the land lies! We both work for the NHS and have informed our respective line managers, just as a heads up really , for any future possible appointments/procedures.

User
Posted 02 Feb 2025 at 20:11

Sorry for what you're going though. Going through diagnosis is tough with all the waiting, but until you have the full diagnosis, it's difficult to say much that's useful, and there's not really any point in thinking about treatments yet - that will depend on the diagnosis as well as personal preferences. Keep us updated, and do ask any questions that spring to mind.

User
Posted 11 Feb 2025 at 23:08
The problem with surgery when it's broken out of the prostate is that you will almost certainly need radio therapy too. So the logic is you might as well blitz it with RT up front and avoid the effects of surgery.

User
Posted 12 Feb 2025 at 12:49

Hi Kate,

Sorry to hear that your partner  has been diagnosed with PCa. i think with a PSA of 35, unfortunately there is a chance of spread outside of the prostate. I was PSA 36 but bone scan was clear, however there was a suspicion from the scan that it had broken through to the Seminal Vesicles. The MDT ruled out surgery for that reason much to my disappointment….if I had known more about it I might have argued the case for surgery.

Really until the MDT meet it’s difficult to think about which treatment option to choose. Yes surgery has its after effects, but for many (like me) HT/RT is certainly no walk in the park either…it’s really quite debilitating for many.

This journey is quite a bumpy ride for many, so if either of you are struggling seek out support from a charity like Maggies…for many men (and partners) it really helps.

Good luck to both of you.

Derek

User
Posted 12 Feb 2025 at 13:17
The fixation is the desire to be rid of the disease... Prostate cancer is rather more insidious I'm afraid and it's likely to be a long haul whatever treatment he decides.

Just read a few cases on here

User
Posted 13 Feb 2025 at 10:55
Thanks everyone, we’re in this together, we have a brilliant Macmillan/cancer support centre at our local hospital too , so we’re very fortunate and I’m determined to remain positive and help him to remain the same, will post updates as we get them

Really appreciate the support from you guys too , thank you. 🙏

User
Posted 13 Feb 2025 at 20:47

I had a PSA in the mid 20s, extra capsular extension, fortunately no lymph nodes involved.

All my friends said "have surgery", but none of my friends are oncologists. The MDT team said "have radiotherapy (brachy)". I went with the MDT advice, I figured they knew more about cancer than me or my mates.

Dave

User
Posted 17 Feb 2025 at 09:13

That must be so frustrating for you, Kate. My friend’s brother and husband were both diagnosed at around the same time, both with G3+4, T3aN0M0. Her brother had HT & RT; her husband had surgery. Her husband’s came back so he’s now undergoing salvage RT. As I say both are doing fine and have been given good prognosis, but their family illustrates how difficult it is to work out which path to take.   I think the bottom line is that the journey through the treatment can be tough so your husband will really need to believe the course he takes is right for him.  My husband was ironically grateful that his was spread too far with a high Gleason score so he wasn’t given any choice on treatments. Not an easy decision to make. Take care, and I hope all goes well whichever route he takes.

User
Posted 17 Feb 2025 at 10:59

Originally Posted by: Online Community Member

...My husband was ironically grateful that his was spread too far with a high Gleason score so he wasn’t given any choice on treatments...

That is exactly the position I was in. Though I didn't appreciate how lucky I was to be in that position at the time. Having read so many posts about treatment choice dilemmas on this forum, I definitely think not having to make a choice is better.

Kate, Humans do not make logical decisions they make decisions based on emotions, they then try and justify the decision afterwards with a logical argument. No man ever needed a red Ferrari to make the commute to work quicker, or woman needed a Louis Vuitton handbag because hand stitching is more reliable.

Fear is the emotion he is dealing with and fight or flight is the built in response. Flight is not an option with cancer so he thinks he has to fight it. Well he has as much chance of fighting cancer as I have at fighting a bear. If I had a troublesome bear I would employ the services of a bear wrestler, with cancer I used the services of an oncologist. You won't win a logical argument with your husband cause this isn't about logic. By understanding his emotions you may be able to steer him towards excepting the decision of the experts (who are thinking logically).

 

Edited by member 17 Feb 2025 at 11:00  | Reason: Not specified

Dave

User
Posted 17 Feb 2025 at 16:23

You're spot on there Dave, absolutely, re the fight/flight response I will have to be the logical one here obviously (although as you say he won't want that response right now!) but I will always support him as much as I can and I totally get that he's scared, we both are but one of us has to remain rational, I've suggested he write things down that he wants to ask/say to the specialists after the MDT meeting when we have our appointment. 

 

 

Edited by member 17 Feb 2025 at 16:39  | Reason: Not specified

User
Posted 26 Feb 2025 at 07:57

Hi Kate.

Thank you for the update.

Now a treatment plan has been decided you and Ian can focus on that. I believe there are several on here who had a similar diagnosis, and I'm sure they'll help and support you. 

Mike was T3b, N1 with Gleason 9. He has just posted how he's got on.

https://community.prostatecanceruk.org/posts/t31436-Tb3-N1-Gleeson-45-PSA35

It sad to hear that Ian's parents are unwell. It's not ideal, having to care for others at a time like this, when you're facing your own health issues. During my diagnosis, surgery and recovery, my wife and I were caring for my frail 98 year old mum who was living with us. Unfortunately supporting others, when you need a bit of support yourself, puts additional pressure on you.  

I wish you both the best of luck. 👍

Edited by member 26 Feb 2025 at 08:26  | Reason: Additional text

User
Posted 07 Mar 2025 at 07:38

With all the other information the PSA becomes a bit more irrelevant for the moment. However it is without doubt a positive.

It is great that he has accepted that radiotherapy is the way forward.

The PET scan will reveal more and allow for a focussed treatment.

It sounds like you are very much on the right path and I can assure you that when the treatment course has been finalised and he starts treatment it is easier mentally even though you are going through treatment with its side affects than the wait.

Good Luck

User
Posted 26 Mar 2025 at 10:46

Great news that it’s confined to the pelvic area, Kate. I agree, the waiting is the worst bit, by far. Hope all goes well with the injections and with the oncologist appointment. 

User
Posted 27 Mar 2025 at 01:13

Not too bad thanks. He finished his 20 sessions of RT three weeks ago, and still has 2½ years of HT to go, including 1½ years of Abiraterone. Still very tired all the time. Gym sessions with the PT are helping a lot (twice a week) although they floor him for the rest of the day. It’s a relief that the RT is over but I’m struggling a bit with not knowing if it killed the cancer or not, and of course we won’t know till after he finished HT!! I realise everyone must feel this way though. Hoping that once his energy levels improve we can try and forget it a bit, as it’s constantly at the forefront of our minds just now. He’s definitely improving day by day but still a long way to go. X 

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User
Posted 02 Feb 2025 at 20:11

Sorry for what you're going though. Going through diagnosis is tough with all the waiting, but until you have the full diagnosis, it's difficult to say much that's useful, and there's not really any point in thinking about treatments yet - that will depend on the diagnosis as well as personal preferences. Keep us updated, and do ask any questions that spring to mind.

User
Posted 02 Feb 2025 at 22:00
Thanks Andy, will do
User
Posted 10 Feb 2025 at 19:13

Biopsy today and frank honestl chat with urology cancer nurse specialist who said based on the PSA/bone scan and MRI, cancer unfortunately looks extremely likely, and it looks like the cancer cells have broken out through the prostate and are affecting lymph node (s)
Partner very insistent he wants surgery, nurse said this is normally only indicated for PC solely confined to the prostate, has anyone else had this experience?
We now have a 2-3 week wait for the biopsy results and then we’ll be back for an appointment to discuss the results and treatment options. She mentioned the Gleason score as the definitive indicator towards treatment and that they are confident they can cure it, even without surgery 

Edited by member 10 Feb 2025 at 19:15  | Reason: Not specified

User
Posted 11 Feb 2025 at 23:08
The problem with surgery when it's broken out of the prostate is that you will almost certainly need radio therapy too. So the logic is you might as well blitz it with RT up front and avoid the effects of surgery.

User
Posted 12 Feb 2025 at 12:16

Yes, I think I’d expect that, and reading around people’s different experiences of surgery, I don’t think he’s realised the impact of surgery and the after effects, and I haven’t mentioned much to my partner except to say that he needs to write things down what he wants to ask/say at the appointment after the MDT meeting as he’s fixated on wanting the operation and I’m sure they can explain the treatment options better than I can 

Edited by member 12 Feb 2025 at 12:17  | Reason: Not specified

User
Posted 12 Feb 2025 at 12:49

Hi Kate,

Sorry to hear that your partner  has been diagnosed with PCa. i think with a PSA of 35, unfortunately there is a chance of spread outside of the prostate. I was PSA 36 but bone scan was clear, however there was a suspicion from the scan that it had broken through to the Seminal Vesicles. The MDT ruled out surgery for that reason much to my disappointment….if I had known more about it I might have argued the case for surgery.

Really until the MDT meet it’s difficult to think about which treatment option to choose. Yes surgery has its after effects, but for many (like me) HT/RT is certainly no walk in the park either…it’s really quite debilitating for many.

This journey is quite a bumpy ride for many, so if either of you are struggling seek out support from a charity like Maggies…for many men (and partners) it really helps.

Good luck to both of you.

Derek

User
Posted 12 Feb 2025 at 13:17
The fixation is the desire to be rid of the disease... Prostate cancer is rather more insidious I'm afraid and it's likely to be a long haul whatever treatment he decides.

Just read a few cases on here

User
Posted 13 Feb 2025 at 10:55
Thanks everyone, we’re in this together, we have a brilliant Macmillan/cancer support centre at our local hospital too , so we’re very fortunate and I’m determined to remain positive and help him to remain the same, will post updates as we get them

Really appreciate the support from you guys too , thank you. 🙏

User
Posted 13 Feb 2025 at 20:47

I had a PSA in the mid 20s, extra capsular extension, fortunately no lymph nodes involved.

All my friends said "have surgery", but none of my friends are oncologists. The MDT team said "have radiotherapy (brachy)". I went with the MDT advice, I figured they knew more about cancer than me or my mates.

Dave

User
Posted 17 Feb 2025 at 08:35

He’s adamant he wants surgery and just gets angry when I say we have to be guided by the experts, and he’s spouting things like it’s “medical arrogance from the doctors perspective” 🤦‍♀️🤦‍♀️ I got angry then ( probably not the right response!) and said don’t be ridiculous, they are the experts , we have to be guided by them , I’ve stopped reacting when he keeps saying things like that, and I just hope they can explain it better than I can. Of course I want whatever is best for him and what they say will cure it, but he refuses to accept any alternative to surgery. 

Edited by member 17 Feb 2025 at 08:37  | Reason: Not specified

User
Posted 17 Feb 2025 at 09:13

That must be so frustrating for you, Kate. My friend’s brother and husband were both diagnosed at around the same time, both with G3+4, T3aN0M0. Her brother had HT & RT; her husband had surgery. Her husband’s came back so he’s now undergoing salvage RT. As I say both are doing fine and have been given good prognosis, but their family illustrates how difficult it is to work out which path to take.   I think the bottom line is that the journey through the treatment can be tough so your husband will really need to believe the course he takes is right for him.  My husband was ironically grateful that his was spread too far with a high Gleason score so he wasn’t given any choice on treatments. Not an easy decision to make. Take care, and I hope all goes well whichever route he takes.

User
Posted 17 Feb 2025 at 10:22

Thanks Kazzy , 

I want to support him the best I can, we’ll just have to wait and see what the biopsy shows, I’m just hoping he’s prepared to listen and be guided by the experts, obviously I want whatever will cure him, if it’s surgery or otherwise. It’s going to be tough whatever i think but we’re in it together! 

Hope your friend’s family members are doing ok x 

Edited by member 17 Feb 2025 at 10:29  | Reason: Not specified

User
Posted 17 Feb 2025 at 10:59

Originally Posted by: Online Community Member

...My husband was ironically grateful that his was spread too far with a high Gleason score so he wasn’t given any choice on treatments...

That is exactly the position I was in. Though I didn't appreciate how lucky I was to be in that position at the time. Having read so many posts about treatment choice dilemmas on this forum, I definitely think not having to make a choice is better.

Kate, Humans do not make logical decisions they make decisions based on emotions, they then try and justify the decision afterwards with a logical argument. No man ever needed a red Ferrari to make the commute to work quicker, or woman needed a Louis Vuitton handbag because hand stitching is more reliable.

Fear is the emotion he is dealing with and fight or flight is the built in response. Flight is not an option with cancer so he thinks he has to fight it. Well he has as much chance of fighting cancer as I have at fighting a bear. If I had a troublesome bear I would employ the services of a bear wrestler, with cancer I used the services of an oncologist. You won't win a logical argument with your husband cause this isn't about logic. By understanding his emotions you may be able to steer him towards excepting the decision of the experts (who are thinking logically).

 

Edited by member 17 Feb 2025 at 11:00  | Reason: Not specified

Dave

User
Posted 17 Feb 2025 at 16:23

You're spot on there Dave, absolutely, re the fight/flight response I will have to be the logical one here obviously (although as you say he won't want that response right now!) but I will always support him as much as I can and I totally get that he's scared, we both are but one of us has to remain rational, I've suggested he write things down that he wants to ask/say to the specialists after the MDT meeting when we have our appointment. 

 

 

Edited by member 17 Feb 2025 at 16:39  | Reason: Not specified

User
Posted 24 Feb 2025 at 18:52

We’ve got an appointment tomorrow at 3pm for the biopsy results, needless to say we’re a tad anxious !! 

added complication - Ian’s mum had a fall at home last Thursday night, now in hospital with a broken hip, had surgery on Saturday , doing ok but Ian’s dad is now the main worry as he has vascular dementia and will need support at home, Ian’s been staying with him at their house but he’s come home tonight for a break, Ian’s brother’s partner is taking over tonight as she lives in the house opposite (Ian’s brother is away in New Zealand for a 6 week cycling trip) 

as Ian’s mum is her husband’s main carer you can appreciate the problems this presents! 
ians arranged with his workplace to take some time off to support his dad but we obviously also need to focus on Ian and what his results might mean, tricky times! 

Edited by member 24 Feb 2025 at 19:02  | Reason: Not specified

User
Posted 26 Feb 2025 at 05:53

Update 

Ok , so we had the biopsy results yesterday, 14 out of the 18 samples taken were confirmed as cancer, and it has involved the seminal vesicles and a lymph node, staging is T3b N1 M0

Gleason score is 4+3 (7) 

We are now awaiting a pet scan to ensure there’s no “hotspots” in other areas including bone 

once the PET scan has been done, he’s starting hormone therapy and then we’ll see the oncologist to get the PET scan results and discuss/start  radiotherapy

The CS nurse said it might not be a bad idea to get another PSA done for reference as they’ve only got one result from December last year which initiated everything, He’s getting that done today at his GP surgery 

Surgery is not an option, the nurse was emphatic about that and explained why it’s not indicated, 

the good news is that re his mum and dad, he’s now been signed off work by his GP until 17th March, which will enable him to support them and make sure something is in place for when his mum comes home 

Lots to take on board! Lots of new terminology to learn! 
Cancer nurse specialist was very kind, very knowledgeable and honest, and lots of support available 

 

Hope everyone is well here! 

Edited by member 26 Feb 2025 at 06:03  | Reason: Not specified

User
Posted 26 Feb 2025 at 07:57

Hi Kate.

Thank you for the update.

Now a treatment plan has been decided you and Ian can focus on that. I believe there are several on here who had a similar diagnosis, and I'm sure they'll help and support you. 

Mike was T3b, N1 with Gleason 9. He has just posted how he's got on.

https://community.prostatecanceruk.org/posts/t31436-Tb3-N1-Gleeson-45-PSA35

It sad to hear that Ian's parents are unwell. It's not ideal, having to care for others at a time like this, when you're facing your own health issues. During my diagnosis, surgery and recovery, my wife and I were caring for my frail 98 year old mum who was living with us. Unfortunately supporting others, when you need a bit of support yourself, puts additional pressure on you.  

I wish you both the best of luck. 👍

Edited by member 26 Feb 2025 at 08:26  | Reason: Additional text

User
Posted 05 Mar 2025 at 23:30

Hi everyone 

still awaiting the pet scan and the latest update is that his last PSA came through as 26, ( he had this test done at his GP surgery last week) and it’s lower than the first result back in December (35)

 

I don’t know how significant this is or does it just go up and down? 

 

holding on to this for the moment as a positive sign 🤞🤞🤞

Edited by member 06 Mar 2025 at 12:48  | Reason: Not specified

User
Posted 07 Mar 2025 at 07:38

With all the other information the PSA becomes a bit more irrelevant for the moment. However it is without doubt a positive.

It is great that he has accepted that radiotherapy is the way forward.

The PET scan will reveal more and allow for a focussed treatment.

It sounds like you are very much on the right path and I can assure you that when the treatment course has been finalised and he starts treatment it is easier mentally even though you are going through treatment with its side affects than the wait.

Good Luck

User
Posted 11 Mar 2025 at 13:38
Update

PSMA pet ct scan is scheduled for this Friday at Musgrove park hospital in Taunton!

Travelling up on Thursday from Cornwall as scan is booked for 12 noon on Friday, we’ve been lucky enough to find a hotel a stone’s throw from the hospital, phone calls to my line manager to inform them and arrange necessary leave, we will stay 2 nights in Taunton and come back home on Saturday morning. Then it’s just a matter of awaiting the results, we’re now under the care of the oncology team (having already been referred by urology) and at least he can start his hormone treatment after the scan

User
Posted 15 Mar 2025 at 17:58

PET-CT scan done yesterday, took around 2 hours, sounds like the results should be within a week or so. We stayed at a really nice hotel in Taunton, (The Corner house hotel), which was a stone’s throw from Musgrove Park, (5-10 minutes walk away)so we made it into a mini break for us both, and enjoyed some lovely food at the hotel and had a meander around the town after the scan, back home now, and he’s enjoying the rugby 🏉 !! 
He has now started his hormone treatment ( as instructed by the CNS to start the day after his scan) which is Bicalutamide 50mg once daily 

Edited by member 15 Mar 2025 at 18:36  | Reason: Not specified

User
Posted 20 Mar 2025 at 11:20
Hi everyone

We’ve got an oncology appointment on 9th April, and he’s having his first hormone injection a week tomorrow ( halfway through the Bicalutamide course as instructed)

Will update after we’ve seen the oncologist

Hope everyone is keeping well 🙏🙏

User
Posted 25 Mar 2025 at 17:50
Update;

Well he managed to speak to someone in Urology today who accessed the PSMA pet scan results and there is bilateral lymph node involvement in the pelvis, but nothing else apparently. We are still seeing the oncologist on the 9th April, presumably to prescribe further treatment and discuss management plan but just knowing something is enough to sustain us for now, it was the not knowing anything that was getting to us both. He has his first hormone injection on Friday this week when he will have had two weeks of the hormone tablets.

Hope everyone is keeping well.

User
Posted 26 Mar 2025 at 10:46

Great news that it’s confined to the pelvic area, Kate. I agree, the waiting is the worst bit, by far. Hope all goes well with the injections and with the oncologist appointment. 

User
Posted 26 Mar 2025 at 21:00

Thanks Kazzy, 

how are you doing? 

User
Posted 27 Mar 2025 at 01:13

Not too bad thanks. He finished his 20 sessions of RT three weeks ago, and still has 2½ years of HT to go, including 1½ years of Abiraterone. Still very tired all the time. Gym sessions with the PT are helping a lot (twice a week) although they floor him for the rest of the day. It’s a relief that the RT is over but I’m struggling a bit with not knowing if it killed the cancer or not, and of course we won’t know till after he finished HT!! I realise everyone must feel this way though. Hoping that once his energy levels improve we can try and forget it a bit, as it’s constantly at the forefront of our minds just now. He’s definitely improving day by day but still a long way to go. X 

User
Posted 27 Mar 2025 at 06:14

Originally Posted by: Online Community Member

Not too bad thanks. He finished his 20 sessions of RT three weeks ago, and still has 2½ years of HT to go, including 1½ years of Abiraterone. Still very tired all the time. Gym sessions with the PT are helping a lot (twice a week) although they floor him for the rest of the day. It’s a relief that the RT is over but I’m struggling a bit with not knowing if it killed the cancer or not, and of course we won’t know till after he finished HT!! I realise everyone must feel this way though. Hoping that once his energy levels improve we can try and forget it a bit, as it’s constantly at the forefront of our minds just now. He’s definitely improving day by day but still a long way to go. X 

 

What did you both think were the main side effects from the radiotherapy for him? Sounds like fatigue is a major factor. Glad he’s improving xx 
I know what you mean, it’s constantly there isn’t it. We’re trying to keep ourselves distracted with doing nice things, like our trip to the theatre last weekend, and we’re planning a similar thing - a trip to London, for a long weekend for his birthday in May. I’m booking us theatre tickets to see Starlight express as a birthday treat for him as he’s longing to see it. 
He went back to work yesterday and I think that will help keep his mind occupied, but I said to him he has to pace himself, he’s an X Ray Porter , so lots of walking and he does long shifts, so we’ll just have to see how that goes, especially once he starts radiotherapy. 

Edited by member 27 Mar 2025 at 06:26  | Reason: Not specified

User
Posted 28 Mar 2025 at 23:44

That’s great that you’re doing lots of fun things together just now. It will really help you both not to focus entirely on the cancer … although it’s never far from your mind, I know. 

As for RT, everyone is different and hopefully your husband’s experience won’t be too bad.  Our experience was that the first two weeks were pretty much ok. A little more tired than usual, but maybe that was partly just the daily round trip to the hospital. By the beginning of week 3 he started peeing more frequently and with greater urgency. It was a challenge if we were driving for more than half an hour without a toilet stop. Fatigue stepped up a notch too. During that week the bowel also started to be affected, so urgent diarrhoea and passing mucus several times a day. On the advice of the lovely folk on this forum we made up an “emergency pack” for the car, with change of clothes, baby wipes, a plastic bag for any soiled clothes. He only needed it twice but thank goodness it was there!! Towards the end of the fourth week the exhaustion kicked in, and with it the low mood (unsurprisingly). The 7-10 days after the RT ended was the hardest. He was totally drained and just wanted to sleep day and night, between toilet trips and food - which he made himself eat so he could take his meds. He had awful acid reflux too, often making him sick. It was worse than either of us had expected, and heartbreaking to see him like that.  However after the 10 days things improved dramatically day by day.  Three weeks since finishing RT and he’s still back and forward to the toilet a lot, with considerable urgency. His bowels are still temperamental, but we’ve started reintroducing fibre, albeit gradually. We have to be careful that he doesn’t get overtired as he doesn’t bounce back quickly, but he’s definitely making progress. Whenever we have bumped into friends or been with the family their initial reaction has been to comment that he’s looking and sounding great, and they’re delighted to see him back to his old self. However if we’re still chatting half an hour later they notice him losing his spark and it’s not long before he’s pale and drained. 

So my advice would be not to make any particular plans from the final week of RT through to about 3-4 weeks after. If things go well and side effects are minimal you will enjoy making last minute plans, whereas cancelling plans is very demoralising. (We had to cancel a theatre trip and lost £120, but I know others have had to cancel holidays, which would be far worse!!). The main thing though is that if your husband does have a similar experience to mine, don’t despair as it really is just temporary. I hope being forewarned is helpful, but I do stress that not everyone has such a hard time with it. 

Wishing you both all the very best of luck with it. 🍀🍀🍀

 
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