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Getting a diagnosis

User
Posted 21 Dec 2024 at 14:52

Hi Folks,


I’m in the process of getting checked out for PCa. I’m 57 having some minor waterworks issues and got a PSA test result of 5.7. That test triggered an MRI scan and they’ve spotted a small lesion (1cm) which has been given an MPIRS score of 4. Getting a biopsy in the new year. I’m taking things step by step. Finding this forum very helpful in knowing I’m not alone and that it’s still early days. Would be grateful for any advice. Have a great Christmas and New Year.


Cheers


Callanish


 

User
Posted 21 Dec 2024 at 18:54

Sounds like you are doing it right step by step. Be sure your biopsy will be MRI fusion guided to get extra bites from the lesion. Keep us posted with your detailed biopsy pathology for best comments from members. Biopsy is fairly straightforward and painless.

User
Posted 21 Dec 2024 at 19:23

Hi, 


Sounds like you are taking things sensibly.


I have just been discharged from urology after my biopsy came back clear. Similar story to yours so there is a great chance you will have nothing to worry about after the biopsy.


Have a restful worry free Christmas and only worry when there is something to worry about 


All the very best,


Mick 

User
Posted 21 Dec 2024 at 19:24

Hi Callanish.


I'm sorry that you've had to join us but welcome to the forum, mate.


The PI-RAD 4 means that it seems likely the lesion is cancerous, however, only a biopsy will confirm or negate that. We have had cases where PI-RAD 4 and 5's have turned out to be inflammation or benign lesions.


Do you know whether your prostate is enlarged, because that itself can elevate your PSA, as can other non cancerous prostate conditions.


Best of luck with your biopsy results. Please keep us updated.👍


 

User
Posted 09 Feb 2025 at 16:32

When you talk with the surgeon, questions I would ask are:


How likely is the surgery to be nerve sparing, i.e. to preserve erections? (That depends where the cancer is.)


How good is your urinary continence likely to be? (Some aspects of your anatomy, and the cancer, and the way the operation is performed can influence this.)


How many lymph nodes might be removed? (The more which are removed, the higher risk of lymphodema.)


What are the chances of a cure first time, versus having to have more treatment afterwards? (The chances of needing more treatment increase with the level of risk associated with the diagnosis.)


If you don't like any of the answers, that could be a cause to look at other treatments or surgeons.

Edited by member 09 Feb 2025 at 16:33  | Reason: Not specified

User
Posted 09 Feb 2025 at 18:16

Originally Posted by: Online Community Member
What are the chances of a cure first time, versus having to have more treatment afterwards? (The chances of needing more treatment increase with the level of risk associated with the diagnosis.)


Is that the same as asking him/her what are chances of recurrence?


I would be asking him/her how good he/she is. How much experience they have and their success rate. All the questions that you could once find answers for through BAUS, but that are now apparently no longer openly available.

User
Posted 11 Feb 2025 at 21:59

 


Hi Callanish.


Sorry to hear your diagnosis.


This time last year I had PSA 6.7. Pi-RAD 5. Biopsy 3+4. I was and am a runner. I opted for surgery, which I had in May 2024. I walked a mile the day after surgery (with catheter in) and continued walking every day, extending distance steadily. I was running again a few weeks later. I leaked badly from the start, but at 3 months things were a lot better. At around 4 months stress incontinence, all but gone. Pathology worse after surgery T3a, rather than estimated T2 - this happens quite a bit, apparently. Negative margins - crucial. Nodes not removed. Having regular PSA tests - so far undetectable.


My running is back to what it was before surgery, albeit marginally slower as I'm a year or so older now. I'm 66.


So a young, fit person with a good surgeon (crucial) and with dedication and a positive mindset can get through this. Your stats seem to be better than mine.


A contact of mine has metastasised PCa. Chemo, hormones the works. In his bones, sadly. He's now back to running marathons.


Take your time. Get your head in a positive mind set. Ignore Dr Google as much of the material is out of date as PCa treatments are moving fast - this I think is important. I got involved in a hospital patient forum after surgery and this point was made and acknowledged by the staff. If you choose surgery, be prepared for significant incontinence (most), but it gets way better for nearly everyone with dedication.


Good luck

Edited by member 11 Feb 2025 at 22:00  | Reason: Not specified

User
Posted 11 Feb 2025 at 22:30
Hello Callanish

Sorry to hear about your diagnosis.

I’m 55 yrs old, was diagnosed with PCa in October 2024, 3+4 T2c, 12 cores positive out of 25, so similar to yourself. I had a RARP at the end of Nov.

Here is a link that goes through my journey in quite a lot of detail, I hope it can help you a little, and please let me know if you have any questions and I’ll try and help.

https://community.prostatecanceruk.org/posts/t31069-a-new-diagnosis

There are some brilliant people in this forum that certainly helped me a lot, particularly in the more challenging moments,

Best of luck with it all.

Gus
User
Posted 23 Feb 2025 at 18:28

Surgery. First choice. Second choice ... surgery.  If you've been offered surgery, the medics have assessed you as suitably fit, so at 57 I'd go for surgery ...


There is the reassurance that after surgery you'll have an accurate histology/pathology which will tell you exactly what you had. MRIs are getting better, but as many folk here will testify, they are by no means perfect. It's helpful to know whether the 3:4 is indeed 3:4 etc. 


Try and ensure your surgeon has completed (successfully) a sufficient number of the procedures and is doing them regularly, this is critical as the best surgeons will likely give you a better chance of not leaving microscopic cells around and saving your nerves.


Surgery is a not to be taken likely. Take care with getting yourself in the best possible condition. Start your Kegels yesterday (:-)) and keep going with them properly every day - for life. Expect that you will have to re-learn bladder control afterwards - it can take some time, though some folk are lucky and sail through this part. 


So my recommendation is ...


Good luck


 


 


 

User
Posted 29 May 2025 at 07:20

Hi Callanish.


I'm very glad to hear your operation went well, mate, and that you're making a good recovery. Long may it continue.


I had RARP over two years ago. Gleason upgraded from 8  (3+5) to 9 (4+5), T3a with extraprostatic extension, negative margins. My first post op PSA was undetectable and has remained that way ever since.


Good luck mate. 👍

User
Posted 29 May 2025 at 15:32

Hi Cavendish, that sounds like you're on a good path. This upgrade (downgrade??) seems all too familiar. I do wonder if the NHS underplays intermediate diagnoses as their argument might be that PCa is slow spreading and resources are limited so lets down play it a little. Less worry for the patient. However, I saw my scan and quizzed the doctor as even I could seem the boundary bulging. I was reassured (not). I went private (painful raiding of savings). The private consultant agreed with me that it was likely T3, rather than all contained. I had surgery two weeks later.


Pleased you got the important negative margins and you seem to be making excellent progress with your plumbing.


It's a year tomorrow from when I had surgery. Where did it go? Try not to let your regular PSA tests dominate your thinking. Hard at first, but it does get easier each time they come back undetectable. Hopefully you'll be able to post regular undetectable results for years to come. It's helpful for others to keep posting results, I think, especially for the locally advanced of us because if things are going well most folk move on and nobody reads the good stories.


Fingers crossed for you.

User
Posted 29 May 2025 at 17:59

Whoops, sorry about the aberration with your name, Callanish.


I was being diagnosed closer to the Covid backlog and during the doctors strike. I didn't get to see an NHS consultant, instead only a nurse specialist (by phone) and a registrar. A consultant appointment was promised, but as all targets were being missed by months - January initial PSA to mid May before I received biopsy results - I jumped out of NHS care. I was to be put on a consultant waiting list to discuss my options after the biopsy. Who knows when I would have eventually have had NHS surgery. I felt I was being managed while I was waiting and waiting. My GP put me on a 28 day fast path. Post code lottery would, no doubt, have been playing its part.


That's all behind my now...

Show Most Thanked Posts
User
Posted 21 Dec 2024 at 18:54

Sounds like you are doing it right step by step. Be sure your biopsy will be MRI fusion guided to get extra bites from the lesion. Keep us posted with your detailed biopsy pathology for best comments from members. Biopsy is fairly straightforward and painless.

User
Posted 21 Dec 2024 at 19:23

Hi, 


Sounds like you are taking things sensibly.


I have just been discharged from urology after my biopsy came back clear. Similar story to yours so there is a great chance you will have nothing to worry about after the biopsy.


Have a restful worry free Christmas and only worry when there is something to worry about 


All the very best,


Mick 

User
Posted 21 Dec 2024 at 19:24

Hi Callanish.


I'm sorry that you've had to join us but welcome to the forum, mate.


The PI-RAD 4 means that it seems likely the lesion is cancerous, however, only a biopsy will confirm or negate that. We have had cases where PI-RAD 4 and 5's have turned out to be inflammation or benign lesions.


Do you know whether your prostate is enlarged, because that itself can elevate your PSA, as can other non cancerous prostate conditions.


Best of luck with your biopsy results. Please keep us updated.👍


 

User
Posted 09 Feb 2025 at 15:02

OK so update: after TP biopsy PC is unfortunately confirmed. PC found in 10 of 21 cores, Gleason 7 (3+4), PC on both sides of prostate but importantly it has not spread outside of the prostate. Not the start to the New Year I had envisaged. Has been an emotional rollercoaster the last week since diagnosis. Looking into treatment options now. As I’m young -57- and fit will probably opt for surgery, but would like some views and don’t need to rush things. 

User
Posted 09 Feb 2025 at 16:32

When you talk with the surgeon, questions I would ask are:


How likely is the surgery to be nerve sparing, i.e. to preserve erections? (That depends where the cancer is.)


How good is your urinary continence likely to be? (Some aspects of your anatomy, and the cancer, and the way the operation is performed can influence this.)


How many lymph nodes might be removed? (The more which are removed, the higher risk of lymphodema.)


What are the chances of a cure first time, versus having to have more treatment afterwards? (The chances of needing more treatment increase with the level of risk associated with the diagnosis.)


If you don't like any of the answers, that could be a cause to look at other treatments or surgeons.

Edited by member 09 Feb 2025 at 16:33  | Reason: Not specified

User
Posted 09 Feb 2025 at 18:16

Originally Posted by: Online Community Member
What are the chances of a cure first time, versus having to have more treatment afterwards? (The chances of needing more treatment increase with the level of risk associated with the diagnosis.)


Is that the same as asking him/her what are chances of recurrence?


I would be asking him/her how good he/she is. How much experience they have and their success rate. All the questions that you could once find answers for through BAUS, but that are now apparently no longer openly available.

User
Posted 11 Feb 2025 at 21:59

 


Hi Callanish.


Sorry to hear your diagnosis.


This time last year I had PSA 6.7. Pi-RAD 5. Biopsy 3+4. I was and am a runner. I opted for surgery, which I had in May 2024. I walked a mile the day after surgery (with catheter in) and continued walking every day, extending distance steadily. I was running again a few weeks later. I leaked badly from the start, but at 3 months things were a lot better. At around 4 months stress incontinence, all but gone. Pathology worse after surgery T3a, rather than estimated T2 - this happens quite a bit, apparently. Negative margins - crucial. Nodes not removed. Having regular PSA tests - so far undetectable.


My running is back to what it was before surgery, albeit marginally slower as I'm a year or so older now. I'm 66.


So a young, fit person with a good surgeon (crucial) and with dedication and a positive mindset can get through this. Your stats seem to be better than mine.


A contact of mine has metastasised PCa. Chemo, hormones the works. In his bones, sadly. He's now back to running marathons.


Take your time. Get your head in a positive mind set. Ignore Dr Google as much of the material is out of date as PCa treatments are moving fast - this I think is important. I got involved in a hospital patient forum after surgery and this point was made and acknowledged by the staff. If you choose surgery, be prepared for significant incontinence (most), but it gets way better for nearly everyone with dedication.


Good luck

Edited by member 11 Feb 2025 at 22:00  | Reason: Not specified

User
Posted 11 Feb 2025 at 22:30
Hello Callanish

Sorry to hear about your diagnosis.

I’m 55 yrs old, was diagnosed with PCa in October 2024, 3+4 T2c, 12 cores positive out of 25, so similar to yourself. I had a RARP at the end of Nov.

Here is a link that goes through my journey in quite a lot of detail, I hope it can help you a little, and please let me know if you have any questions and I’ll try and help.

https://community.prostatecanceruk.org/posts/t31069-a-new-diagnosis

There are some brilliant people in this forum that certainly helped me a lot, particularly in the more challenging moments,

Best of luck with it all.

Gus
User
Posted 12 Feb 2025 at 08:31

Thanks Gus, your thread is very informative! I’ve got an appointment with oncologist next week to discuss radiotherapy, brachytherapy etc so will see how I get on with that. It’s confusing all the options and as I’m youngish I’m hoping for more guidance from the doctors on the longer term outcomes of the different procedures - ie for someone in my position which pathway gives greater likelihood of a ‘cure’ and what side effects are likely. 

Edited by member 12 Feb 2025 at 08:36  | Reason: Not specified

User
Posted 23 Feb 2025 at 15:46

Meet with the oncologist and have been offered choice of radiotherapy or radical prostatectomy, both of which have the same chances of success of providing a ‘lifetime cure’.  PC is localised and at early stages and Gleason 7(3+4), PC on both sides of prostate. As I’m ‘young’ 57 (!) I’m thinking about surgery as I’m told it will be nerve sparing and I prefer to just get rid of the cancer and then reserve radiotherapy or chemotherapy in case there’s a recurrence later in life. I also understand that surgery after radiotherapy can be difficult due to scar tissue, so there’s more risk of side effects. It’s tough waying up these options, but I’m grateful I have been diagnosed early and have options…Would be grateful of any opinions or experiences from this wonderful supportive community. 

User
Posted 23 Feb 2025 at 18:28

Surgery. First choice. Second choice ... surgery.  If you've been offered surgery, the medics have assessed you as suitably fit, so at 57 I'd go for surgery ...


There is the reassurance that after surgery you'll have an accurate histology/pathology which will tell you exactly what you had. MRIs are getting better, but as many folk here will testify, they are by no means perfect. It's helpful to know whether the 3:4 is indeed 3:4 etc. 


Try and ensure your surgeon has completed (successfully) a sufficient number of the procedures and is doing them regularly, this is critical as the best surgeons will likely give you a better chance of not leaving microscopic cells around and saving your nerves.


Surgery is a not to be taken likely. Take care with getting yourself in the best possible condition. Start your Kegels yesterday (:-)) and keep going with them properly every day - for life. Expect that you will have to re-learn bladder control afterwards - it can take some time, though some folk are lucky and sail through this part. 


So my recommendation is ...


Good luck


 


 


 

User
Posted 23 Feb 2025 at 19:42

Thank you! Yeah the MRI only showed a 0.8cm  lesion in one side of the prostate but biopsy showed PC is actually more widespread but not showing up on the MRI. That gets me wondering what might be seen when histology is done on the whole prostate if removed - I see from reading in the forum that things regularly turn out to be higher grade than biopsy is showing, as the cores can’t sample everywhere and may miss things. I’m sure surgery will be tough but given my ‘young’ age I’m thinking a more conservative treatment might be prudent . Surgeon is very experienced and will be using the latest robot assisted kit, but I need to ask him about his stats. 

User
Posted 29 May 2025 at 06:19

Hi there, thanks for your reply. I had surgery earlier this month (nerve sparing both sides with the new single port robot assisted kit) My recovery is going well, leaks have been not too bad and I can control them most of the time. Like you my cancer was upgraded after surgery from 2c before to 3a afterwards. That was a surprise. Also Gleason changed from 7(3+4) to 7(4+3). Surgeon thinks he got all the tumour out (negative margins) but of course we can’t be certain. So now it’s a case of regular PSA checks going forward. I’m staying positive, focussed on my recovery and getting my fitness back. Hope you are doing well. Best Wishes, Callanish. 

User
Posted 29 May 2025 at 07:20

Hi Callanish.


I'm very glad to hear your operation went well, mate, and that you're making a good recovery. Long may it continue.


I had RARP over two years ago. Gleason upgraded from 8  (3+5) to 9 (4+5), T3a with extraprostatic extension, negative margins. My first post op PSA was undetectable and has remained that way ever since.


Good luck mate. 👍

User
Posted 29 May 2025 at 15:32

Hi Cavendish, that sounds like you're on a good path. This upgrade (downgrade??) seems all too familiar. I do wonder if the NHS underplays intermediate diagnoses as their argument might be that PCa is slow spreading and resources are limited so lets down play it a little. Less worry for the patient. However, I saw my scan and quizzed the doctor as even I could seem the boundary bulging. I was reassured (not). I went private (painful raiding of savings). The private consultant agreed with me that it was likely T3, rather than all contained. I had surgery two weeks later.


Pleased you got the important negative margins and you seem to be making excellent progress with your plumbing.


It's a year tomorrow from when I had surgery. Where did it go? Try not to let your regular PSA tests dominate your thinking. Hard at first, but it does get easier each time they come back undetectable. Hopefully you'll be able to post regular undetectable results for years to come. It's helpful for others to keep posting results, I think, especially for the locally advanced of us because if things are going well most folk move on and nobody reads the good stories.


Fingers crossed for you.

User
Posted 29 May 2025 at 16:39

Thanks mate. I don't think surgeon was downplaying anything as he suggested surgery or radiotherapy from the outset. My MRI scan showed a small lesion close to the edge of the prostate on one side but the biopsy showed the cancer was more widespread in both lobes, but it was not detectable on the MRI. Surgeon has been surprised throughout, both at the biopsy results and what he saw during surgery. Even with the most advanced tech and an experienced surgeon who has done 1000s of  prostatectomies it seems there are still going to be unexpected findings. I’m feeling positive at the moment and will update with my PSA results in a couple of months which hopefully will be undetectable. Cheers, Callanish

User
Posted 29 May 2025 at 17:59

Whoops, sorry about the aberration with your name, Callanish.


I was being diagnosed closer to the Covid backlog and during the doctors strike. I didn't get to see an NHS consultant, instead only a nurse specialist (by phone) and a registrar. A consultant appointment was promised, but as all targets were being missed by months - January initial PSA to mid May before I received biopsy results - I jumped out of NHS care. I was to be put on a consultant waiting list to discuss my options after the biopsy. Who knows when I would have eventually have had NHS surgery. I felt I was being managed while I was waiting and waiting. My GP put me on a 28 day fast path. Post code lottery would, no doubt, have been playing its part.


That's all behind my now...

 
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