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User
Posted 01 Feb 2023 at 17:05

Hello again 


Firstly I apologise as I seem to just post asking questions at the moment. Hopefully one day I will be able to help others  but currently still on a sharp learning curve - sorry


So quick summary - OH got psa result 11.1 in October quickly followed by MRI showing need for biopsy. 


Biopsy done beginning of January. Results given over telephone - Gleason 7 (3 +4). All options were proposed by doctor on phone- AS, prostate removal, RT and seed brachytherapy - all with the caveat that the biopsy had been challenging and not completely reliable. Doctor suggested an in person appointment in about 4 weeks to discuss way forward.


We have now received all the information about treatments in the post together with an appointment for 26th May !


I don't know if I'm over reacting (feel like I am) but this just seems like a bonkers waiting time just to decide on treatment. By the time we get to the appointment it will be 7 months since his last PSA test. On AS my understanding is that the PSA test would be done every 3 months - so why nothing in this waiting time ?  After this appointment I'm guessing another long wait for treatment.


I'm not really sure what my question is, but given the dodgy biopsy I'm concerned no monitoring is being done but I do understand the waits are currently inevitable.


Has anyone asked for PSA tests whilst waiting for appointments?


Hope that all makes sense


Thank you 😊 Vicky 


 

User
Posted 01 Feb 2023 at 18:43
Basically, because he is suitable for AS he has been put onto AS until they can see him. You can ask the GP for a PSA test in the meantime although even if there was a rise it would be unlikely to change anything in the treatment offer or entice them to bring forward the May appointment :-(

Welcome to our cash / resource starved NHS 😢
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2023 at 19:20
Hi Vicky,

When I read your post my reaction amounted to what Lyn said. It's natural anybody who is diagnosed with PCa wants to settle on what to do about it as soon as possible but this case is not considered as high priority. It wouldn't do any harm to get a another PSA test in the interim if your GP is prepared to authorise and is what I would ask in the circumstances. It has not been mentioned but because AS has been put forward as an option and also surgery, it is indicative of the cancer being contained within the Prostate which is good news. If OH is able to attend at short notice, he could make it known that he would attend an earlier appointment if there was a cancellation. This might not shorten the time to any treatment but would enable him to decide earlier the way forward, which is a big decision to have made for most men.
Barry
User
Posted 01 Feb 2023 at 19:35
Above all good info , remember this is a slow slow cancer
User
Posted 02 Feb 2023 at 17:30

If he decides in RT & HT, then get on the HT as soon as you can - saves time & will bring forward the RT, provided the Broken NHS can manage it!  -  there are side effects, whichever is decided.


Good luck


Bob

User
Posted 02 Feb 2023 at 18:58
If you can afford the 250 quid see the consultant or another one privately for the initial consult... You can still have the op on the NHS...

Royal Marsden offer a really good video consult where you get lots of time to ask questions.
User
Posted 02 Feb 2023 at 23:39
I can tell you from experience the Royal Marsden video consult take all your test results, you have to upload them prior to the consultation.
User
Posted 03 Feb 2023 at 00:36

Originally Posted by: Online Community Member


I didn't realise you could do that- I did phone one local private unit but they told me OH would have to start again with all the tests and they wouldn't use the NHS ones. Maybe we can have another look. Thank you 😊 



That is sometimes true if you are seeking a private second opinion at a different hospital to the one where the diagnostics have been done. In your case, presumably you aren't looking for a second opinion because you haven't had the first opinion yet - easier to Google the consultant your OH is seeing in May to find out whether s/he does private work and if so, ring his private secretary to see if you can pay for an earlier appointment. With some consultants at the moment, the private appointment is no sooner than had been offered on the NHS but I would be amazed if s/he can't see you privately before May! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Feb 2023 at 07:21
Hi well new to this my self I was diagnosed in December and today Friday I am off to see my surgeon to talk about my procedure but my score is lower than yours, I also think it depends where you live with me being in North Lincolnshire and your age
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User
Posted 01 Feb 2023 at 18:43
Basically, because he is suitable for AS he has been put onto AS until they can see him. You can ask the GP for a PSA test in the meantime although even if there was a rise it would be unlikely to change anything in the treatment offer or entice them to bring forward the May appointment :-(

Welcome to our cash / resource starved NHS 😢
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2023 at 19:20
Hi Vicky,

When I read your post my reaction amounted to what Lyn said. It's natural anybody who is diagnosed with PCa wants to settle on what to do about it as soon as possible but this case is not considered as high priority. It wouldn't do any harm to get a another PSA test in the interim if your GP is prepared to authorise and is what I would ask in the circumstances. It has not been mentioned but because AS has been put forward as an option and also surgery, it is indicative of the cancer being contained within the Prostate which is good news. If OH is able to attend at short notice, he could make it known that he would attend an earlier appointment if there was a cancellation. This might not shorten the time to any treatment but would enable him to decide earlier the way forward, which is a big decision to have made for most men.
Barry
User
Posted 01 Feb 2023 at 19:35
Above all good info , remember this is a slow slow cancer
User
Posted 01 Feb 2023 at 21:21

Thanks all, really appreciate your replies 😊

User
Posted 02 Feb 2023 at 17:30

If he decides in RT & HT, then get on the HT as soon as you can - saves time & will bring forward the RT, provided the Broken NHS can manage it!  -  there are side effects, whichever is decided.


Good luck


Bob

User
Posted 02 Feb 2023 at 18:01

Thank you 😊 

User
Posted 02 Feb 2023 at 18:58
If you can afford the 250 quid see the consultant or another one privately for the initial consult... You can still have the op on the NHS...

Royal Marsden offer a really good video consult where you get lots of time to ask questions.
User
Posted 02 Feb 2023 at 19:20

I didn't realise you could do that- I did phone one local private unit but they told me OH would have to start again with all the tests and they wouldn't use the NHS ones. Maybe we can have another look. Thank you 😊 

User
Posted 02 Feb 2023 at 23:39
I can tell you from experience the Royal Marsden video consult take all your test results, you have to upload them prior to the consultation.
User
Posted 03 Feb 2023 at 00:36

Originally Posted by: Online Community Member


I didn't realise you could do that- I did phone one local private unit but they told me OH would have to start again with all the tests and they wouldn't use the NHS ones. Maybe we can have another look. Thank you 😊 



That is sometimes true if you are seeking a private second opinion at a different hospital to the one where the diagnostics have been done. In your case, presumably you aren't looking for a second opinion because you haven't had the first opinion yet - easier to Google the consultant your OH is seeing in May to find out whether s/he does private work and if so, ring his private secretary to see if you can pay for an earlier appointment. With some consultants at the moment, the private appointment is no sooner than had been offered on the NHS but I would be amazed if s/he can't see you privately before May! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Feb 2023 at 07:21
Hi well new to this my self I was diagnosed in December and today Friday I am off to see my surgeon to talk about my procedure but my score is lower than yours, I also think it depends where you live with me being in North Lincolnshire and your age
 
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