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Confused by diagnosis process

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User
Posted 21 Nov 2023 at 12:22

Hello, I'm a bit confused by the whole diagnosis process and just wondered if anyone had a similar experience, I'm 63 and after a referral by my GP to a urologist I had a DRE which showed slightly firm right lobe, I then had a flexible cystoscopy which showed bladder lining was normal but prostate quite enlarged, I was told at the time of the cystoscopy that my PSA had increased from 2.5 to 5 in one year. A few days later I had a CT scan with contrast, this was followed two weeks later by an MRI scan of my prostate. The MRI scan was 5 days ago, yesterday I had a call from the hospital to book me in for another CT scan (I think they said tri or triple something) for next week. I asked why and was told this second CT scan is far more detailed. I'm concerned and a bit worried to be honest I'm not sure what the tests so far have shown. Maybe I'm over thinking this?....

User
Posted 21 Nov 2023 at 15:16

Originally Posted by: Online Community Member

I'm concerned and a bit worried to be honest I'm not sure what the tests so far have shown. Maybe I'm over thinking this?....

Initially it's all a bit scary and confusing. Three years ago, I knew nowt about prostate cancer. Now, as someone else said on here, if I ever got on Mastermind, I'd make it my specialist subject. My pc bookmarks  is full of guff on the disease. Like Pawmark said consultants should do their best to give you the best treatment. Everyone's case is slightly different. My philosophy was take one step at a time and do as the doctor tells you. However, that doesn't stop you feeling, that at times, you're just one of a number, and it doesn't stop you occasionally questioning procedures and the medical advice you've been given.  If that's classed as over thinking, I'm guilty as charged.

 

User
Posted 24 Nov 2023 at 18:43
I think there are a couple of different viewpoints - there is the general information that exists about PCa - the facts that it infects so many men, the huge success rates in terms of life expectancy, the treatments that are available and the expected side effects of treatments - and then there is the way that individuals are affected by it - both physically and mentally.

We are all made differently and we all react to the news and treatment of PCa differently - it's not like taking a car for a service where one 'treatment' works in exactly the same way on every occasion - things that I took in my stride affect others differently. At times I am guilty of making light of the things that happened during my treatment and I am reminded that other people may not feel the same way - as an example, my treatment was non-nerve sparing so unless I start sticking needles in it or using the vacuum pump, then I will never have another erection. It doesn't bother me or my wife - we have other ways to enjoy each other and that's fine for us, but it may have a deep psychological impact on others.

But one of the things that really helped me was the support from others on these pages - they helped me understand the process and also to put things in perspective - panicking wasn't helping for sure and when you realise just how many men have gone through, are going through and will go through it, it kind of makes it all a little less scary.

User
Posted 21 Nov 2023 at 12:22

Hello, I'm a bit confused by the whole diagnosis process and just wondered if anyone had a similar experience, I'm 63 and after a referral by my GP to a urologist I had a DRE which showed slightly firm right lobe, I then had a flexible cystoscopy which showed bladder lining was normal but prostate quite enlarged, I was told at the time of the cystoscopy that my PSA had increased from 2.5 to 5 in one year. A few days later I had a CT scan with contrast, this was followed two weeks later by an MRI scan of my prostate. The MRI scan was 5 days ago, yesterday I had a call from the hospital to book me in for another CT scan (I think they said tri or triple something) for next week. I asked why and was told this second CT scan is far more detailed. I'm concerned and a bit worried to be honest I'm not sure what the tests so far have shown. Maybe I'm over thinking this?....

User
Posted 21 Nov 2023 at 14:02

Hi, any tests,scans, procedures are designed to provide the best info for diagnosis and then any treatment path. I have always taken the line to follow the science thru all tests etc offered and then see what transpires. Try not to overthink it at this stage,

P.

User
Posted 24 Nov 2023 at 16:00
Yes, it means that there is a very high probability that it is. Bear in mind that almost every man will get PCa if they live long enough and it is one of the most treatable and in most cases, curable of cancers especially when caught early enough.

I found out I had it a year ago, had my RARP in May where the results were not as good as was hoped and had my first post-op PSA at <0.01 and will have my next one in a couple of weeks. I went from complete panic and 'oh sh*t' to 'oh well, I just better get on with it' over that 12 months and I have realised that something else will probably get me well before PCa does :)

User
Posted 24 Nov 2023 at 16:19

48% chance it is clinically significant cancer.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10488368/#:~:text=According%20to%20a%20large%20Cochrane,%25%2C%20respectively%20%5B4%5D.

So strictly speaking PIRADS4 means it probably isn't cancer. Though obviously with being a mere 2% below 50:50 you need to get the biopsy.

Dave

User
Posted 24 Nov 2023 at 16:40

Thanks for your reply Steve - I really admire your positive outlook, thinking back my Dad got over having his prostate removed, and went on to live many years after that with a good quality of life too. Probably panicking unnecessarily, but so much of what I've looked at since getting the PIRADS result today (never knew what the hell  PIRADS was until today!) gives conflicting information which isn't helping. It's all new and a bit scary to be honest but this forum is a great place to voice concerns, that I'd find difficult to discuss with my family as I don't want to worry them, and to talk with others that have first hand experience of what this involves.

User
Posted 05 Dec 2023 at 10:50

Morning everyone 

I had my TP biopsy last Friday, and now I have to wait ....  I know that I'm jumping the gun by asking this question now, but does anyone know if robotic assisted prostatectomy (da vinci) is available on the NHS, or is this only available for private patients?

User
Posted 05 Dec 2023 at 11:00

Hi

Firstly, I hope you don't have to wait long for your results, as I know from experience that this is a particularly stressful time. Hopefully the results will be good and you can stop worrying.

In the event that you do have PCa and you need treatment, then yes, the Robotic Prostatectomy is available on the NHS.

Good luck with your results mate.

User
Posted 05 Dec 2023 at 13:44

Originally Posted by: Online Community Member

So strictly speaking PIRADS4 means it probably isn't cancer. Though obviously with being a mere 2% below 50:50 you need to get the biopsy.

Hi Phil,

Unfortunately, our site states:  Pi rads 4:  It is likely that you have prostate cancer that needs to be treated.

https://prostatecanceruk.org/prostate-information-and-support/prostate-tests/mri-scan#:~:text=PIRADS%20or%20Likert%20score%204,that%20needs%20to%20be%20treated.

 

Edited by member 05 Dec 2023 at 20:40  | Reason: Not specified

User
Posted 06 Dec 2023 at 00:23

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

So strictly speaking PIRADS4 means it probably isn't cancer. Though obviously with being a mere 2% below 50:50 you need to get the biopsy.

Hi Phil,

Unfortunately, our site states:  Pi rads 4:  It is likely that you have prostate cancer that needs to be treated.

https://prostatecanceruk.org/prostate-information-and-support/prostate-tests/mri-scan#:~:text=PIRADS%20or%20Likert%20score%204,that%20needs%20to%20be%20treated.

 

I think you missed the mathematical point Dave was making - with PI-RADS4 there is a 48% chance of clinically significant cancer which means it is more likely not to be (52%)

Edited by member 06 Dec 2023 at 00:24  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Dec 2023 at 16:27
While I was out seeing customers today my wife took a call from the urology department at the hospital where I had a TP biopsy two weeks ago this was following an MRI scan that reported PIRADS 4. (A bit surprised they called my home number as so far they’ve always connected me on my mobile) Anyway they said that following my biopsy they want me to attend the clinic next Friday to discuss treatment options. My wife passed the message on to me, and so in between appointments, I called the urology department to ask them what the results of my biopsy were, there was definitely an awkward pause and then he told me that he couldn’t give me the results as he wasn't medically qualified to do so, I said is "it because you're not allowed to give the results over the phone?" and he said yes there is that but also he wasn’t qualified, I politely asked if there was someone available that was qualified to give me the results, again bit of awkward silence, then I was told no all the doctors were at another 

hospital today and then there’s a doctors strike next week that’s why the appointment is next Friday.

I did say that having waited two weeks already it was really unfair to have to wait another week to find out what the results of the biopsy are, he agreed, apologised, and said there was nothing he could do.

I really don’t want to sound ungrateful because everyone I’ve come into contact with so far for my scans and biopsy etc have been wonderful, but another week waiting is not going to be easy, and has obviously has added 

considerably to the worry.

 

User
Posted 15 Dec 2023 at 17:17

The wait for the biopsy result is undoubtedly excruciating. I believe it is common practice to present the results at a face to face meeting. Three weeks wait is about normal but it does seem like for ever. Fingers crossed.

User
Posted 22 Dec 2023 at 18:48

Had the consultation today regarding my biopsy and it’s confirmed that I do have prostate cancer. (Merry Christmas!) It was a shock even though I was kind of expecting it.

The consultant and nurse practitioner were great and handled the whole thing very well, I realise that I’m very lucky that I’ve been told in my case they are extremely confident I can be cured. I’ve opted for surgery which should take place in approx. 16 weeks time. I know I’m just at the start of what will be a long process, but tonight I am relieved that at last I finally know what I have to deal with. We left the consultation feeling positive and it was great to be told that they honestly thought we had made the right decision. I’m going to stay positive and for now concentrate on enjoying Christmas with our Grandkids.

Happy Christmas to everyone on the forum. And a big thank you for your help and advice so far ….

User
Posted 22 Dec 2023 at 19:16

Hello mate,

I'm sorry that you've joined the Club but I wish you the very best on your journey.

Adrian

 

User
Posted 22 Dec 2023 at 20:10

Thank you Adrian - really appreciate your support, hope you have a good Christmas mate! 
phil

Show Most Thanked Posts
User
Posted 21 Nov 2023 at 14:02

Hi, any tests,scans, procedures are designed to provide the best info for diagnosis and then any treatment path. I have always taken the line to follow the science thru all tests etc offered and then see what transpires. Try not to overthink it at this stage,

P.

User
Posted 21 Nov 2023 at 15:16

Originally Posted by: Online Community Member

I'm concerned and a bit worried to be honest I'm not sure what the tests so far have shown. Maybe I'm over thinking this?....

Initially it's all a bit scary and confusing. Three years ago, I knew nowt about prostate cancer. Now, as someone else said on here, if I ever got on Mastermind, I'd make it my specialist subject. My pc bookmarks  is full of guff on the disease. Like Pawmark said consultants should do their best to give you the best treatment. Everyone's case is slightly different. My philosophy was take one step at a time and do as the doctor tells you. However, that doesn't stop you feeling, that at times, you're just one of a number, and it doesn't stop you occasionally questioning procedures and the medical advice you've been given.  If that's classed as over thinking, I'm guilty as charged.

 

User
Posted 22 Nov 2023 at 16:25
Yes, this sounds fairly normal - are you sure that they have asked you back for another CT and not a Scintigraphy? A bone scintigraphy is a standard scan to check for any cancer spread - most of the time they come back negative. You may then be offered a biopsy which will take samples from the prostate for determination of exactly what they are dealing with (a picture can only tell them so much) and then they will discuss the various treatment options.

I know it's worrying but it's all standard procedures these days and PCa is one of the most treatable and curable of cancers.

User
Posted 23 Nov 2023 at 20:29

Hi Steve

Yes it’s definitely another CT scan I’ve also had a prostate/pelvic MRI. But as yet no results or diagnosis.

User
Posted 24 Nov 2023 at 13:57

I've had a phone call from the urology department with the results of my MRI scan, apparently the scan has highlighted an area they are concerned about which is PIRADS 4 and so I'll be having a TP biopsy next week. I'm sure many of you have had a similar experiences to me, I must admit I'm more than a bit concerned and not quite sure what this all means, it would be helpful to know what to expect, and I'd be grateful for any advice.

User
Posted 24 Nov 2023 at 15:34

I can't help with the TP as mine was up the rectum - I am sure others will add some helpful info. However as I said earlier, this is entirely normal and they inform the specialists of exactly what they are dealing with - they extract some samples and send them to the lab and that will give them a refined number on the Gleason score and determine what the best treatment will be. Although the biopsy is more accurate than the scans, it's still not 100% and scores can change further down the line - but chances are you will be offered a RARP where the prostate is removed (good riddance) or HT/RT or even Brachytherapy. There are people on here who have had each treatment (I'm a RARP) who can let you know what to expect as you get into the treatment phase.

What I would say is that you will ejaculate blood for a week or so which looks as scary as hell but is normal and you may see a bit of blood in your stools but that typically doesn't last long.

Edited by member 24 Nov 2023 at 15:35  | Reason: Not specified

User
Posted 24 Nov 2023 at 15:48

Hi Steve

Does the PIRAD score of 4 mean it probably is cancer?

User
Posted 24 Nov 2023 at 16:00
Yes, it means that there is a very high probability that it is. Bear in mind that almost every man will get PCa if they live long enough and it is one of the most treatable and in most cases, curable of cancers especially when caught early enough.

I found out I had it a year ago, had my RARP in May where the results were not as good as was hoped and had my first post-op PSA at <0.01 and will have my next one in a couple of weeks. I went from complete panic and 'oh sh*t' to 'oh well, I just better get on with it' over that 12 months and I have realised that something else will probably get me well before PCa does :)

User
Posted 24 Nov 2023 at 16:19

48% chance it is clinically significant cancer.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10488368/#:~:text=According%20to%20a%20large%20Cochrane,%25%2C%20respectively%20%5B4%5D.

So strictly speaking PIRADS4 means it probably isn't cancer. Though obviously with being a mere 2% below 50:50 you need to get the biopsy.

Dave

User
Posted 24 Nov 2023 at 16:40

Thanks for your reply Steve - I really admire your positive outlook, thinking back my Dad got over having his prostate removed, and went on to live many years after that with a good quality of life too. Probably panicking unnecessarily, but so much of what I've looked at since getting the PIRADS result today (never knew what the hell  PIRADS was until today!) gives conflicting information which isn't helping. It's all new and a bit scary to be honest but this forum is a great place to voice concerns, that I'd find difficult to discuss with my family as I don't want to worry them, and to talk with others that have first hand experience of what this involves.

User
Posted 24 Nov 2023 at 18:43
I think there are a couple of different viewpoints - there is the general information that exists about PCa - the facts that it infects so many men, the huge success rates in terms of life expectancy, the treatments that are available and the expected side effects of treatments - and then there is the way that individuals are affected by it - both physically and mentally.

We are all made differently and we all react to the news and treatment of PCa differently - it's not like taking a car for a service where one 'treatment' works in exactly the same way on every occasion - things that I took in my stride affect others differently. At times I am guilty of making light of the things that happened during my treatment and I am reminded that other people may not feel the same way - as an example, my treatment was non-nerve sparing so unless I start sticking needles in it or using the vacuum pump, then I will never have another erection. It doesn't bother me or my wife - we have other ways to enjoy each other and that's fine for us, but it may have a deep psychological impact on others.

But one of the things that really helped me was the support from others on these pages - they helped me understand the process and also to put things in perspective - panicking wasn't helping for sure and when you realise just how many men have gone through, are going through and will go through it, it kind of makes it all a little less scary.

User
Posted 24 Nov 2023 at 20:26

Originally Posted by: Online Community Member
I think there are a couple of different viewpoints - there is the general information that exists about PCa - the facts that it infects so many men, the huge success rates in terms of life expectancy, the treatments that are available and the expected side effects of treatments - and then there is the way that individuals are affected by it - both physically and mentally.
We are all made differently and we all react to the news and treatment of PCa differently - it's not like taking a car for a service where one 'treatment' works in exactly the same way on every occasion - things that I took in my stride affect others differently. At times I am guilty of making light of the things that happened during my treatment and I am reminded that other people may not feel the same way - as an example, my treatment was non-nerve sparing so unless I start sticking needles in it or using the vacuum pump, then I will never have another erection. It doesn't bother me or my wife - we have other ways to enjoy each other and that's fine for us, but it may have a deep psychological impact on others.
But one of the things that really helped me was the support from others on these pages - they helped me understand the process and also to put things in perspective - panicking wasn't helping for sure and when you realise just how many men have gone through, are going through and will go through it, it kind of makes it all a little less scary.

 

Brilliant, honest reply Steve

Well said.

 

Jamie.

User
Posted 05 Dec 2023 at 10:50

Morning everyone 

I had my TP biopsy last Friday, and now I have to wait ....  I know that I'm jumping the gun by asking this question now, but does anyone know if robotic assisted prostatectomy (da vinci) is available on the NHS, or is this only available for private patients?

User
Posted 05 Dec 2023 at 11:00

Hi

Firstly, I hope you don't have to wait long for your results, as I know from experience that this is a particularly stressful time. Hopefully the results will be good and you can stop worrying.

In the event that you do have PCa and you need treatment, then yes, the Robotic Prostatectomy is available on the NHS.

Good luck with your results mate.

User
Posted 05 Dec 2023 at 11:26

Thanks for your reply, and your good wishes Harty 17/21L - greatly appreciated !

User
Posted 05 Dec 2023 at 13:44

Originally Posted by: Online Community Member

So strictly speaking PIRADS4 means it probably isn't cancer. Though obviously with being a mere 2% below 50:50 you need to get the biopsy.

Hi Phil,

Unfortunately, our site states:  Pi rads 4:  It is likely that you have prostate cancer that needs to be treated.

https://prostatecanceruk.org/prostate-information-and-support/prostate-tests/mri-scan#:~:text=PIRADS%20or%20Likert%20score%204,that%20needs%20to%20be%20treated.

 

Edited by member 05 Dec 2023 at 20:40  | Reason: Not specified

User
Posted 05 Dec 2023 at 16:56

Thanks for your post Adrian - this whole process is definitely confusing to those of us that are new to this!

User
Posted 05 Dec 2023 at 20:51

Hi PC60,

I'm sorry that you find yourself here, but yes, Robot-Assisted Prostatectomy is available on the NHS.   I have had it done in Manchester in 2022 and I believe that it's widely available throughout the country.

Best wishes,

JedSee.

User
Posted 06 Dec 2023 at 00:23

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

So strictly speaking PIRADS4 means it probably isn't cancer. Though obviously with being a mere 2% below 50:50 you need to get the biopsy.

Hi Phil,

Unfortunately, our site states:  Pi rads 4:  It is likely that you have prostate cancer that needs to be treated.

https://prostatecanceruk.org/prostate-information-and-support/prostate-tests/mri-scan#:~:text=PIRADS%20or%20Likert%20score%204,that%20needs%20to%20be%20treated.

 

I think you missed the mathematical point Dave was making - with PI-RADS4 there is a 48% chance of clinically significant cancer which means it is more likely not to be (52%)

Edited by member 06 Dec 2023 at 00:24  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Dec 2023 at 16:27
While I was out seeing customers today my wife took a call from the urology department at the hospital where I had a TP biopsy two weeks ago this was following an MRI scan that reported PIRADS 4. (A bit surprised they called my home number as so far they’ve always connected me on my mobile) Anyway they said that following my biopsy they want me to attend the clinic next Friday to discuss treatment options. My wife passed the message on to me, and so in between appointments, I called the urology department to ask them what the results of my biopsy were, there was definitely an awkward pause and then he told me that he couldn’t give me the results as he wasn't medically qualified to do so, I said is "it because you're not allowed to give the results over the phone?" and he said yes there is that but also he wasn’t qualified, I politely asked if there was someone available that was qualified to give me the results, again bit of awkward silence, then I was told no all the doctors were at another 

hospital today and then there’s a doctors strike next week that’s why the appointment is next Friday.

I did say that having waited two weeks already it was really unfair to have to wait another week to find out what the results of the biopsy are, he agreed, apologised, and said there was nothing he could do.

I really don’t want to sound ungrateful because everyone I’ve come into contact with so far for my scans and biopsy etc have been wonderful, but another week waiting is not going to be easy, and has obviously has added 

considerably to the worry.

 

User
Posted 15 Dec 2023 at 17:17

The wait for the biopsy result is undoubtedly excruciating. I believe it is common practice to present the results at a face to face meeting. Three weeks wait is about normal but it does seem like for ever. Fingers crossed.

User
Posted 15 Dec 2023 at 17:19

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

So strictly speaking PIRADS4 means it probably isn't cancer. Though obviously with being a mere 2% below 50:50 you need to get the biopsy.

Hi Phil,

Unfortunately, our site states:  Pi rads 4:  It is likely that you have prostate cancer that needs to be treated.

https://prostatecanceruk.org/prostate-information-and-support/prostate-tests/mri-scan#:~:text=PIRADS%20or%20Likert%20score%204,that%20needs%20to%20be%20treated.

 

I think you missed the mathematical point Dave was making - with PI-RADS4 there is a 48% chance of clinically significant cancer which means it is more likely not to be (52%)

Hi Lyn,

No, I haven't missed or questioned the mathematical probabilities of clinically significant cancer indicated by PI-Rads 4, I'm merely disputing the interpretation of them.  The difference between Dave's "means it probably isn't cancer" and Prostate Cancer UK's, "It is likely that you have prostate cancer that needs to be treated."  Are significantly different. 

Adrian

Edited by member 15 Dec 2023 at 17:23  | Reason: Not specified

User
Posted 15 Dec 2023 at 17:24

It is annoying that you have to wait.

Any biopsy report is going to be a bit of a problem for someone who is not medically qualified to relay over the, phone without the potential for misleading the patient. Everyone on here can tell you that a GP receptionist has no idea what a less than sign is, or that 'normal' for someone without a prostate is not the same as 'normal' for someone with.

Dave

User
Posted 22 Dec 2023 at 18:48

Had the consultation today regarding my biopsy and it’s confirmed that I do have prostate cancer. (Merry Christmas!) It was a shock even though I was kind of expecting it.

The consultant and nurse practitioner were great and handled the whole thing very well, I realise that I’m very lucky that I’ve been told in my case they are extremely confident I can be cured. I’ve opted for surgery which should take place in approx. 16 weeks time. I know I’m just at the start of what will be a long process, but tonight I am relieved that at last I finally know what I have to deal with. We left the consultation feeling positive and it was great to be told that they honestly thought we had made the right decision. I’m going to stay positive and for now concentrate on enjoying Christmas with our Grandkids.

Happy Christmas to everyone on the forum. And a big thank you for your help and advice so far ….

User
Posted 22 Dec 2023 at 19:16

Hello mate,

I'm sorry that you've joined the Club but I wish you the very best on your journey.

Adrian

 

User
Posted 22 Dec 2023 at 20:10

Thank you Adrian - really appreciate your support, hope you have a good Christmas mate! 
phil

 
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