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Worries and want a PET scan but consultant wont

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User
Posted 10 Aug 2026 at 22:29

Hi all firstly this site is amazing and I have finally plucked up the courage to post. I’m Jamie a 55 year old man from Devon I had a radical prostate removed I’m March 2025, my Gleason score was 4*3 and intermediate risk but due to delays in surgery due to my weight and having to lose so much before he would operate when they removed the prostate it was mainly 4’s and 5’s and has escaped the gland. I had pain in my pelvis pre surgery that stopped for two months after and staters again in September 2025, during my MRI it showed two specks on my right iliac blade and following PET said no clear up take. Here we are in August 2026 the pain in my hip and pelvis are waking me up my PSA was 0.01 but is now 0.10 and my consultant will not offer me a PET to see what is going on. I am on nuropathic medication and this helped with my shoulder randomly but nothing else , I’m not incontinent and manage a 75% erection so I know I’m lucky but still feel something is not right , I have heard said they want 0.2 before considering PET scan but I’m worried about the wait as it was very aggressive cancer in the end 

User
Posted 11 Aug 2026 at 09:50

Originally Posted by: Online Community Member
it’s a lonely journey lots of people supporting and looking on but only one in boat trying to ride the rapids. 

But, at least, with your diagnosis, you're miles away from being up sh*t creek without a paddle. 🙂

I get what you mean about a 'lonely journey'. For such a common disease it seems a bit weird that most who get it often feel isolated. One of the huge benefits of this forum is you soon get to know you're not the only one in that boat. 

Edited by member 11 Aug 2026 at 09:53  | Reason: Typo

User
Posted 11 Aug 2026 at 21:26

Hi,

'You are not alone'.  I recall a website called that when I had skin cancer 20yrs ago but this forum does the job here.

With a psa of 0.1 it's unlikely there are any mets big enough to give you pain, in my opinion.  My consultant did say that to me and it seemed logical.  We're all different but it's probably true for you.

If one was giving you pain it might be positive as they'd know where to look and it could be zappable by RT with focal treatment.   But first they'd definitely want to know if it is related and not risk RT until then.

If your psa is doubling every 3 months then the next one will be around 0.2.  Having seen the video Adrian has linked it might be thought you've until 0.4 as the doctor is saying the thinking that's a good time.  0.4 might be your reading in 6 months so it is time to ask about a psma scan and find out where they'll send you.  Our nearest is about 50 miles away but in reality for a one off journey I'd be willing to travel 200 miles if they guaranteed it would happen on the day.

I wonder if your consultant is a Urologist or an Oncologist.  I was transferred to Oncology at 0.1.  With your fast climb you need an Oncologist not a Urologist as you may need early treatment.

I don't know if £3000 is a lot to you but a private psma scan is something like that I believe.

I've been hoping to have a psma pet scan around 0.25 as I read it's a good point to have radiotherapy but not the best point for a scan.   I'm now wondering whether to wait a bit longer but there's a risk of it changing.

I hope that's of some help.  I'm just a patient, you might find Chat GPT helpful if you ask it some questions but make sure you push back and challenge as it thinks it's clever but needs your steer more than it will say.

Try not to get too carried away as some things can make you worry more.  Dr Scholz on that video is my favourite speaker on the subject.  He's an optimistic person if you watch a lot of his videos he tends not to make you worry too much and gives positive ideas.

All the best Peter

p.s.  I was persistent asking to go to Oncology as they didn't seem keen but got a phone call saying they'd had a change of policy and certain people could be.  I think you could be one of those as well due to the rate of change.

 

 

Edited by member 11 Aug 2026 at 21:35  | Reason: added p.s.

User
Posted 11 Aug 2026 at 22:13

When I was diagnosed 10yrs ago I got a sudden pain in my right hip after having twinges for months after going to the gym.    I worried in case it was prostate related but decided it was more likely Tronchanteric bursitis, my GP was a bit amused I think.  After some exercises he said he thought it was arthritis and gave me ibuprofin cream.   

It got so bad I couldn't climb stairs and took about 6 months to go away.  It never came back and notice my health record says Tronchanteric Bursitis which I don't think it was.   In all that time I suspected it was prostate cancer related but urology doctors kept saying no it's sport related.  At the time my psa was 9,9.

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User
Posted 11 Aug 2026 at 08:23

Hi, Jamie.

I'm sorry that you are still having prostate problems but welcome to the forum, mate.

I see you joined nearly 2 years ago, whilst awaiting RARP.  It would be helpful if you could update your bio. What was your pre-op PSA level, cancer staging and Gleason score?

You say that post-op, you were Gleason 9 is that (4+5) or (5+4)? You also mention breach of the capsule do you know the extent of the extraprostatic extension, and did you have negative or postive surgical margins? Was your post-op staging T3a?

In the 18 months since RARP, it appears that your PSA has risen from undetectable 0.01 to 0.1. We're there any other readings in between? We're the tests all done at the same laboratory? 

This upward trend, could unfortunately show recurrence. You are correct in saying a upward trend or PSA above 0.2 could trigger further treatment. However, at 0.1, a PSMA scan is unlikely to locate any remaining 'rogue cells'.

Are they going to increase your PSA checks or leave them at the same intervals?

I'm not medically trained, but it's doubtful that your pelvis pains are linked to the PCa.

Sorry to fire so many questions at you, but the answers will clarify your final diagnosis.

Please keep us updated, and good luck, mate. 👍

Edited by member 11 Aug 2026 at 09:17  | Reason: Typo and additional text

User
Posted 11 Aug 2026 at 09:11

Hi mate , ok positive margins , T3a , PSA pre was 9.42 current PSA has doubled every three month test . Introductial carcinoma post op , I will update my bio this site has been a huge help when I was worried 

User
Posted 11 Aug 2026 at 09:36

Hi, again Jamie.

Thanks for those additional details.

I had RARP about three and a half years ago. My PSA was 7, Gleason 9 (4+5), extraprostatic extension of 2 mm, T3a. I was lucky in having negative margins, which is probably why, thus far, my PSA remains undetectable. However, I'm aware that even after this time, I'm still at quite high risk of recurrence. I understand your anxiety, mate.

Here's a link to a conversation that may be of interest to you. 

https://community.prostatecanceruk.org/posts/t31858-When-to-start-salvage-treatment-after-BCR

There are many lads on here who are in a similar position to you, low level PSA following RARP, and its a topic that been discussed many times before.

It's likely that at some time you may require salvage radiation but when it's best to start that salvage treatment is debatable.

Edited by member 11 Aug 2026 at 09:37  | Reason: Typo

User
Posted 11 Aug 2026 at 09:38

Thanks mate , it’s a lonely journey lots of people supporting and looking on but only one in boat trying to ride the rapids. I will look at the link 🤛🏻

User
Posted 11 Aug 2026 at 09:50

Originally Posted by: Online Community Member
it’s a lonely journey lots of people supporting and looking on but only one in boat trying to ride the rapids. 

But, at least, with your diagnosis, you're miles away from being up sh*t creek without a paddle. 🙂

I get what you mean about a 'lonely journey'. For such a common disease it seems a bit weird that most who get it often feel isolated. One of the huge benefits of this forum is you soon get to know you're not the only one in that boat. 

Edited by member 11 Aug 2026 at 09:53  | Reason: Typo

User
Posted 11 Aug 2026 at 21:26

Hi,

'You are not alone'.  I recall a website called that when I had skin cancer 20yrs ago but this forum does the job here.

With a psa of 0.1 it's unlikely there are any mets big enough to give you pain, in my opinion.  My consultant did say that to me and it seemed logical.  We're all different but it's probably true for you.

If one was giving you pain it might be positive as they'd know where to look and it could be zappable by RT with focal treatment.   But first they'd definitely want to know if it is related and not risk RT until then.

If your psa is doubling every 3 months then the next one will be around 0.2.  Having seen the video Adrian has linked it might be thought you've until 0.4 as the doctor is saying the thinking that's a good time.  0.4 might be your reading in 6 months so it is time to ask about a psma scan and find out where they'll send you.  Our nearest is about 50 miles away but in reality for a one off journey I'd be willing to travel 200 miles if they guaranteed it would happen on the day.

I wonder if your consultant is a Urologist or an Oncologist.  I was transferred to Oncology at 0.1.  With your fast climb you need an Oncologist not a Urologist as you may need early treatment.

I don't know if £3000 is a lot to you but a private psma scan is something like that I believe.

I've been hoping to have a psma pet scan around 0.25 as I read it's a good point to have radiotherapy but not the best point for a scan.   I'm now wondering whether to wait a bit longer but there's a risk of it changing.

I hope that's of some help.  I'm just a patient, you might find Chat GPT helpful if you ask it some questions but make sure you push back and challenge as it thinks it's clever but needs your steer more than it will say.

Try not to get too carried away as some things can make you worry more.  Dr Scholz on that video is my favourite speaker on the subject.  He's an optimistic person if you watch a lot of his videos he tends not to make you worry too much and gives positive ideas.

All the best Peter

p.s.  I was persistent asking to go to Oncology as they didn't seem keen but got a phone call saying they'd had a change of policy and certain people could be.  I think you could be one of those as well due to the rate of change.

 

 

Edited by member 11 Aug 2026 at 21:35  | Reason: added p.s.

User
Posted 11 Aug 2026 at 21:47

Thank you for your reply , I had pain for months before diagnosis in my pelvis and had two specks in my right iliac blade , the pain is all on my right side and now in hips lower back and I have leg weakness. Hence my concern I was training Maui Thai 3 nights a week and able to do long walks with dogs before  the pain got to bad and then after surgery it has gotten worse to the point of costing me sleep. I am not worrying unnecessarily and feel it is valid for my age etc. I had a reply from my cancer nurse today after waiting since February and am being seen my consultant on the 26th fingers crossed something happens or I get some answers 😀

User
Posted 11 Aug 2026 at 22:13

When I was diagnosed 10yrs ago I got a sudden pain in my right hip after having twinges for months after going to the gym.    I worried in case it was prostate related but decided it was more likely Tronchanteric bursitis, my GP was a bit amused I think.  After some exercises he said he thought it was arthritis and gave me ibuprofin cream.   

It got so bad I couldn't climb stairs and took about 6 months to go away.  It never came back and notice my health record says Tronchanteric Bursitis which I don't think it was.   In all that time I suspected it was prostate cancer related but urology doctors kept saying no it's sport related.  At the time my psa was 9,9.

 
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