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PSA Anxiety

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User
Posted 15 Mar 2019 at 20:20

Dear community,


A little background. I'm 41 years old and for the past couple of years I have suffered from nocturia. Every time I have mentioned this to various doctor's, they would test me for diabetes and the results were always negative. I do have an erratic sleep pattern and drink a lot of caffeine so I assumed the issue was related to my lifestyle. It never caused me too much concern and is something I just learned to live with. Last year I had a short spell in hospital due to bowel issues and was diagnosed with acute diverticulitis which is a complication of diverticular disease (bulging pouches in the sigmoid colon). Since then I have made gradual improvements to my diet and eat a lot more fibre and much less fat. It's been a tough journey with bouts of diarrhoea and constipation. One of the biggest issues has been more frequent nocturia and problems with my urine flow (stopping and starting) and peeing little and often during the day. I also noticed that my urine flow had gotten very slow with a lot of dribbling. When I try to pee it feels like something is constantly pressing against my bladder. I put this down to my diverticular disease and dietary changes, but as it's been getting progressively worse - I decided to go back to the doctor for advice.


I had my appointment with the doctor Monday just gone. She suspected an issue with my prostate and suggested a PSA blood test and a urine sample to rule out a possible UTI. She also wanted to get me back this week for a DRE. Then on Wednesday I get a text to contact my surgery. It turns out that my PSA levels are elevated and she wanted to refer me to a Urologist immediately to rule out prostate cancer. As soon as I heard the 'C' word I must admit that my recollection of the conversation is a bit of a blur. I'm not sure if she mentioned what my PSA level actually was and I didn't have the foresight to ask. I now have an appointment to see a Urologist next Friday. The reason I'm here is that I'm now in panic mode. Dr. Google has been freaking me out and I can't remember if my doctor said my PSA levels were elevated or highly elevated. I think I might be reimagining the conversation and I'm definitely overthinking everything. My doctor did not invite me back for the DRE so does that mean my immediate referral to the Urologist means she strongly suspects cancer? Why was my Urologist appointment scheduled so fast? I'm not complaining, but the expedited nature of the referral has sent my anxiety levels through the roof. Have I been prioritised? The NHS specialist referral process usually runs much slower - based on my past experiences. Should I ring the doctor back and ask for my PSA level? Will knowing this level help me calculate a much better statistical probability of whether or not I have PC? Will not knowing this level allow me to wrap myself up in a comforting blanket of ignorance and help me get through the week - until my Urology appointment next Friday? I don't even know what's going to happen at this appointment. Will they want to do scans and biopsies right away?


The optimist in me is telling me that no news is good news and until I actually know - it could be something else. The pessimist in me is telling me to prepare for the worst and that I have no future. I don't even know where my realist is at. I don't even fully understand my motivations for making this post. Am I seeking comfort? Sanity? Understanding? I'm so confused and scared right now. I keep telling myself to 'man up' but then consider that kind of mentality is a big reason why so many men ignore medical symptoms in the first place. My girlfriend has had many health issues recently and I feel guilty for burdening her with them because she has enough on her plate. I also feel guilty for venting on here like this. I have read a number of discussions here and based on where I am in comparison to some of them - I have no right for sympathy or compassion. I guess I'm just in a kind of limbo right now. It has helped me to write this. I hope it helps someone else in the future. PSA anxiety is not pleasant, but it's nice to know that other people go through the same thing (not that I would wish it on anyone).


 


Thanks for reading and bless you all.


Mark

User
Posted 16 Mar 2019 at 08:20

Don't worry about the rapid urology appointment - that's completely normal in any situation where cancer is a possibility  and certainly doesn't mean that it IS cancer. As has been said, cancer would be unusual, although certainly not impossible, at your young age. I can completely relate to the fact that everything was a blur after your GP said the word cancer - I went through exactly the same thing myself. Even if it does turn out to be cancer be reassured that localised prostate cancer is a treatable condition and vanishingly unlikely to kill you. It's natural to think that cancer is a death sentence, but for localised prostate cancer it isn't!


Do try not to assume the worst, and stay away from "Dr Google" - he is not a reliable diagnostician! You're on the correct diagnostic path now and a urologist is the appropriate person to see.


Please keep us updated!


All the best,


Chris

Edited by member 16 Mar 2019 at 08:27  | Reason: Not specified

User
Posted 16 Mar 2019 at 13:45
If we all stayed away from Google, most of us never would have found this site, and many would not be half as well informed as we are.

Google is an essential part of 21st century life, and - in my view - a marvellous resource.

All the advice you need (though my guess is that you know it already!), is to use Google carefully, thoughtfully, and selectively.

Yes, there's a lot of twaddle out on the web, and Google can only find what you tell it to find, it will not vet the sites for you (except for malware, but that's another story). But there's a wealth of high quality info out there too, probably enough to make your head spin.

There are, of course other search engines, but Google is probably the best at the moment.

Disclaimer: I have no shares in Google, nor any other interest, except finding the info I need. ;-)
User
Posted 22 Mar 2019 at 19:07
Sounds as if you're in good hands now, Mark. I know there are those here who advocate "demanding" particular tests, but I think personally that creating an adversarial atmosphere with your urologist does no good at all. He's the expert; I'd take his advice on the best way to proceed.

Very best of luck with the MRI!

Chris
User
Posted 15 Mar 2019 at 23:55
Well it's good it's being looked at but unfortunately there is no option but to let the diagnostics take their course until you get a result good or bad. The good news for you is that it's highly unlikely to be PC at your tender age and the fact you have discomfort makes more likely to be infection causing the raised PSA.
User
Posted 16 Mar 2019 at 02:35
It would be sensible to call the GP practice back and ask what your PSA is because the urologist will assume you know when you see him/her. Unfortunately, the PSA cannot usually predict the seriousness of your situation, it can only flag up that further investigation is needed which is why your GP has made the referral. We have had men whose PSA was 70, 80 or more but they were given the all clear and we have had men with a PSA of 3 or 4 who had extensive spread. There are exceptions - if a man had a PSA of 200 or 1000 or even (in one case on here) 13000 then it is certain to be prostate cancer.

I imagine that the urologist will do a DRE and perhaps another PSA test. It was sensible of the GP not to go ahead with the DRE as it could affect the results of a follow up PSA test and also why put a man through it if s/he knows the urologist will be doing one a week later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Mar 2019 at 03:46
It is unfortunate that you have not been referred to urology some time earlier in the past two years with your waterworks problems. There are several causes of raised PSA other than cancer anyway, so at least now you will be in good hands and on the right track.

If you want, you can register for EMIS Patient Access, which lets you access all your medical records. I have a PSA blood test one day and I can see the results on the app first thing next morning, the same time as the surgery receives them.

I hope your worst fears prove to be unfounded. Best of luck.

Cheers, John.
User
Posted 16 Mar 2019 at 13:11

All good replies , yes stay away from dr google and usa sites this site is the one to use

User
Posted 16 Mar 2019 at 15:03

Originally Posted by: Online Community Member
If we all stayed away from Google, most of us never would have found this site


 


I think that is probably true although in our case, John was given a leaflet about support at his diagnosis appointment and the leaflet included details of this website. We did used to have a couple of urologists who were members of the forum (readers but not posters) and also at least one CNS plus a community PCa support worker so presumably they also recommend the forum to their patients. 


Three or four years ago, someone here posted criticism of his CNS and she mentioned it at their next meeting; it makes for an awkward patient / professional relationship :-/ 

Edited by member 16 Mar 2019 at 15:03  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Mar 2019 at 00:45

Originally Posted by: Online Community Member


 I will also see about signing up to their EMIS system next week. I never realised what this system was for and just assumed it was only for making appointments or renewing prescriptions. 



Bollinge has described a system that must be quite local to him where it just happens that the hospital trust uses EMIS and the GP practice has also chosen to use EMIS (or software has been purchased to allow their system to talk to EMIS) and has chosen to allow patients to see their results. 


It doesn't work like this everywhere! NHS trusts use a number of different electronic patíent record systems, while GP practices have only 4 to choose from. System one is the most common, followed by EMIS I think. A GP practice can refuse to have it, or they can install an e-system but decide that this will only be for appointments & prescriptions, etc. 


Don't assume that your GP practice offers something just because Bollinge’s does. In the area where I live, patients dont get access to their results online. I can log in and see my medical notes & referrals but not test results; we have to phone or visit in person to get those. My husband visits the GP practice a week after each PSA test and asks the receptionist to print the result off for him. 

Edited by member 17 Mar 2019 at 01:02  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Mar 2019 at 06:59
Same for me, Lyn. I can request my repeat prescriptions online but have to visit the surgery for test results. I was interested to read that you have to wait a week for PSA test results - I get mine in two days!

Cheers,

Chris
User
Posted 17 Mar 2019 at 07:20
I use the EMIS system and love it for re-ordering meds’ and booking blood tests etc. The medical history section is very random though. Any blood tests and results ordered by MY GP show up on there clearly. But blood tests ordered at hospital don’t. Psa test takes 2 days.
User
Posted 18 Mar 2019 at 19:13
That's good news, Mark. Thanks for keeping us updated.

Best of luck with your appointment,

Chris
User
Posted 19 Mar 2019 at 21:10

Geordie Mark, hope all goes well.


This site helped calm my nerves, I can tell you!


Are you going to the RVI Newcastle, or Durham/Sunderland Urology Department?


From a Mackem who has to say a big thank you to the Consultant at Durham/Sunderland, 8 months in after op, 2 blood tests below 0.03, getting there.


what ever happens we are all here to help in some small way.


 

User
Posted 19 Mar 2019 at 22:03

Hi Mark


Yes it was, just behind the Pulman garage at Belmont, then robotic surgery at Sunderland with a DaVinci machine. 


If it's the same consultant Mr SD? The site doesn't let you name anyone, he is a really nice guy, down to earth.


Hope all goes well


Andy


 


 

User
Posted 22 Mar 2019 at 18:34
So I had my Urology appointment today and the consultant performed a DRE. He said my prostate was slightly enlarged for my age, but he could feel nothing out of the ordinary. He has arranged for me to have an MRI at the Sunderland Royal Hospital and put the odds of me having PC at 25%. Depending on the MRI results - he will then discuss the possibility of having a biopsy. Even if I didn't have a biopsy he said it would be prudent to have a repeat PSA test every 6 months. I guess all I can do now is wait for my MRI appointment to come through the post.

Thinking ahead. If the MRI came back negative do any of you think it wise to push for a biopsy? I have read a few times that scans sometimes miss things and a biopsy would be much more likely to detect anything untoward. I understand that a biopsy might not be the most pleasant thing in the world, but peace of mind is very important to me.

I would also like to say that now I have seen a specialist, I'm not as anxious or worried - compared to when I made my first post. The feeling of having something done about it and having that process started is quite empowering. I feel like I have some control back and when I came here panicking last week - I felt no control, fear and completely detached from reality. I don't know how I would have grounded myself if it weren't for all you kind folk on here so thanks again for that. I will continue to update this thread.

Cheers,
Mark

P.S. This is for Andy63. The consultant I saw could have been Mr. SD as those letters certainly go into his name. The chap I saw was very pleasant, down to earth and professional. I felt completely at ease. Thumbs up for the Durham Diagnostics & Treatment Centre. Thumbs down to whoever runs the paid parking as the machine wasn't accepting cards so I had to make payment by phone.
User
Posted 22 Mar 2019 at 21:00
Hi Geordie,
it would depend a little bit on what kind of MRI they give you. If a standard MRI then yes, these can miss tumours so a clear scan would not necessarily mean you didn't have any cancer. Also, a normal mRI can show suspicious areas but can't tell the difference between bruising, infection and tumour. If however, you are offered an mpMRI (which uses 3 or 4 different technologies to get an in depth view of your prostate, they can assess how likely any suspicious area is to actually be cancer (in a range of five from 'definitely not cancer' to 'almost definitely cancer'.

A clear normal scan should not necessarily rule out the need for biopsy but a clear mpMRI could possibly be so definitive that a biopsy would be an unnecessary intrusion. County Durham & Darlington NHS trust offers mpMRI to the PROMIS standard; Sunderland NHS trust offers mpMRI but not to the required standard. As CC says, consider the specialist's advice as s/he has had many years training & experience.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Mar 2019 at 21:02
I agree with Cheshire Chris yet at the same time have learned that the specialists just follow an agreed flow plan whether it suits or not for a particular patient. It is a NICE flowplan and I guess they have to follow it to the T , unless someone in the know challenges their sometimes pointless or useless treatment plan. Yes they offer everything they can in the right order but sometimes in the detriment to QOL and with no total gain to life span. Some people grab it by the horns and others judge it more wisely. When you actually challenge an Onco , they agree they are only following guidelines and that it is up to you. It is your cancer and you own it , and you can choose whatever you want that suits you. You don’t have to nod your head and take what their guidelines say. Some Oncos wouldnt put their own families through it all tbh. My brother who is a fully qualified consultant Radiologist won’t take a psa test despite my journey and to be fair I don’t blame him given what I’ve bedn through for zero results. I’ve recently had a 90 minute research call for PCUK and told them in my opinion a widespread PSA testing program is not right for young men. Such an unreliable test and putting thousands of men through unnecessary tests and strain and worry and procedures when they may not need it. Something more reliable needed !
User
Posted 22 Mar 2019 at 22:09
I can’t reply however hard I try. I just resent the “ he’s the expert post “ because they are all experts but treat differently in every region. I believe it’s right to challenge a man or woman Onco bound by guidelines rather than smile and be chemically castrated and just accept it re Cheshire C post. We are not all the same and have the right to question our treatment. When challenged , my Onco agrees RT is practically worthless but is obligated to keep offering it. Others just bite their hands off whatever the outcome. Sorry to waver from the original post ok , but I dislike misguided advice also
User
Posted 22 Mar 2019 at 22:40

Hi Mark


Not sure if you got my earlier reply?


Personally I would ask for the biopsy, yes a little uncomfortable, bit like stapling your finger! But after the second dart you get used to it, lol


The only reason is because my own journey matches yours to a certain degree, small slightly enlarged prostate, but biopsy confirmed everything. OK I was 54 so slightly order.


Take care, 


Andy


 


 

User
Posted 23 Mar 2019 at 18:20

Many thanks for all the comments and advice. There are obviously a lot of conflicting opinions here and that's all good. Everything said is representative of making good informed decisions - based on individual personality types and past experiences. For someone like me, these personal beliefs are invaluable. I'm quite agnostic and a very deep thinker. I do frequently overthink things and this will often lead me down a path where I will worry and fixate about stuff. Sometimes this can be a blessing and other times it can be a curse. Striking a balance is difficult, especially when it concerns anything that's health related and even more so; when it's potentially something quite serious. I need to be in possession of the facts and I need to listen to every side of all arguments. This thread has now become an internal debate inside my head and I have no doubt it will eventually lead to making the best decisions that are right for me. I cannot express how much I appreciate the impact you're all having on this process. It means a lot.


As it stands right now. I haven't had an MRI yet and I have not been diagnosed with anything. However, I do not think a clear MRI would give me enough peace of mind to formally dismiss the prospect of potentially having PC. I think a clear mpMRI would have been more helpful in doing that. Thanks Lyn for mentioning this. I didn't realise there were different types of MRI or different standards. I do trust my Urologist and Cheshire Chris raises a very good point about not creating an adversarial atmosphere by demanding particular tests. I also understand that our NHS is stretched when it concerns time, money and resources. The last thing I want to do is become a drain on the system or take valuable diagnostic and treatment time away - from those who may need it more. At the same time I have to consider my own peace of mind and how not having any would effect my life in the future. I think I will wait for the MRI and what comes next, but if that scan is clear, I will have to express my concerns and fears to the Urologist and see if I could possibly convince him to take me down the route of a biopsy. This is not something I would look forward to, but it's something that would give me enough closure, especially after reading Andy's story and feedback. Everything is of course based on a 'what if' for me right now, but it helps to think about outcomes and plan for possibilities and eventualities. I do not want to be caught off guard.


Just touching on what Chris J said about widespread PSA testing not being routinely performed on young men. I would have to agree with this. I only had a PSA test done because of issues with my water works. I think PSA testing at a younger age would create a lot of anxiety and stress for people who generally do not need to worry. I do wish they could develop a more accurate test in the future, although I'm sure this is something that people are working on right now and hopefully will become a reality someday.


Thanks again for all the replies and I wish you all a great weekend. 


All the best, Mark.

Edited by member 23 Mar 2019 at 18:29  | Reason: Two people named Chris. Needed to differentiate.

User
Posted 23 Mar 2019 at 18:35

Originally Posted by: Online Community Member


I do trust my Urologist and Chris raises a very good point about not creating an adversarial atmosphere by demanding particular tests. I also understand that our NHS is stretched when it concerns time, money and resources. The last thing I want to do is become a drain on the system or take valuable diagnostic and treatment time away - from those who may need it more. At the same time I have to consider my own peace of mind and how not having any would effect my life in the future. I think I will wait for the MRI and what comes next, but if that scan is clear, I will have to express my concerns and fears to the Urologist and see if I could possibly convince him to take me down the route of a biopsy. This is not something I would look forward to, but it's something that would give me enough closure, especially after reading Andy's story and feedback.



Just a small clarification, Mark. I'm certainly not suggesting that you don't discuss your diagnosis and the best way forward with your urologist; having such discussions is an excellent idea, and the more you know about your diagnosis the better the position you'll be in to make an informed decision should the necessity arise further down the road. It seems entirely reasonable to me to express your wish for a biopsy if the MRI scan leaves even the smallest doubt about cancer.


Best wishes,


Chris

User
Posted 18 Apr 2019 at 13:01
I would presume ‘something’ suspicious was found in your MRI scan, warranting further investigation, hence your biopsy letter.

What a shame no-one in urology had a few minutes to advise you by phone of their suspicions, rather than a biopsy appointment dropping on your doormat.

Now you can look forward to a wait for the biopsy and then two to three weeks for the results of it. I trust you are a patient man, and anyway, the ‘suspicion’ could turn out to be benign.

Best of luck.

Cheers, John.
User
Posted 18 Apr 2019 at 14:13

A prostate MRI (even with contrast) can't diagnose PC by itself.
It can highlight any areas which need investigating, and it's really good to have had it before a biopsy, because it enables the biopsy to be targeted to the right area. It might be that either the TRUS or a transperineal template prostate biopsy (TTPB) would have been done anyway, but they were waiting for the MRI result first in case it shows specific areas to target, or that one biopsy method is more appropriate in your case. Would have been nice to explain this first though.


TRUS is a bit uncomfortable, but not painful. Most people have no bad effects from TRUS, beyond blood in semen for 3-6 weeks, and blood in urine and rectum for a couple of days.

Edited by member 18 Apr 2019 at 14:32  | Reason: Not specified

User
Posted 18 Apr 2019 at 17:09

Hi Mark


don't worry to much about the biopsy procedure, its not that bad, a little uncomfortable but the guy at Durham was great and explained everything as he went and what to expect.


Normally with SD, you can ring his secretary a week later to make the next appointment to see him that same week.


Hope it all works out


I see Rafa has worked his miracle again!!  :-(


andy 

User
Posted 18 Apr 2019 at 17:59

Don’t assume that they found something on the MRI - it wouldn’t be best practice to rely solely on the scan. The best diagnostics are by combining all available results... the PSA, DRE, MRI and biopsy. Even if there is a grey area on the scan, it may not be cancer.


In your own words “However, I do not think a clear MRI would give me enough peace of mind to formally dismiss the prospect of potentially having PC.” If they had written saying “hey your scan was clear, off you go” you would probably be anxious that they hadn’t done full checks. 

Edited by member 18 Apr 2019 at 18:19  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Apr 2019 at 18:15
Rafa, Rafa, Rafa 🎉💕
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Apr 2019 at 08:22
Glad to hear that the biopsy went well, Mark. As you say, the anticipation is far worse than the actual event!

All the best,

Chris
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User
Posted 15 Mar 2019 at 23:55
Well it's good it's being looked at but unfortunately there is no option but to let the diagnostics take their course until you get a result good or bad. The good news for you is that it's highly unlikely to be PC at your tender age and the fact you have discomfort makes more likely to be infection causing the raised PSA.
User
Posted 16 Mar 2019 at 02:35
It would be sensible to call the GP practice back and ask what your PSA is because the urologist will assume you know when you see him/her. Unfortunately, the PSA cannot usually predict the seriousness of your situation, it can only flag up that further investigation is needed which is why your GP has made the referral. We have had men whose PSA was 70, 80 or more but they were given the all clear and we have had men with a PSA of 3 or 4 who had extensive spread. There are exceptions - if a man had a PSA of 200 or 1000 or even (in one case on here) 13000 then it is certain to be prostate cancer.

I imagine that the urologist will do a DRE and perhaps another PSA test. It was sensible of the GP not to go ahead with the DRE as it could affect the results of a follow up PSA test and also why put a man through it if s/he knows the urologist will be doing one a week later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Mar 2019 at 03:46
It is unfortunate that you have not been referred to urology some time earlier in the past two years with your waterworks problems. There are several causes of raised PSA other than cancer anyway, so at least now you will be in good hands and on the right track.

If you want, you can register for EMIS Patient Access, which lets you access all your medical records. I have a PSA blood test one day and I can see the results on the app first thing next morning, the same time as the surgery receives them.

I hope your worst fears prove to be unfounded. Best of luck.

Cheers, John.
User
Posted 16 Mar 2019 at 08:20

Don't worry about the rapid urology appointment - that's completely normal in any situation where cancer is a possibility  and certainly doesn't mean that it IS cancer. As has been said, cancer would be unusual, although certainly not impossible, at your young age. I can completely relate to the fact that everything was a blur after your GP said the word cancer - I went through exactly the same thing myself. Even if it does turn out to be cancer be reassured that localised prostate cancer is a treatable condition and vanishingly unlikely to kill you. It's natural to think that cancer is a death sentence, but for localised prostate cancer it isn't!


Do try not to assume the worst, and stay away from "Dr Google" - he is not a reliable diagnostician! You're on the correct diagnostic path now and a urologist is the appropriate person to see.


Please keep us updated!


All the best,


Chris

Edited by member 16 Mar 2019 at 08:27  | Reason: Not specified

User
Posted 16 Mar 2019 at 13:11

All good replies , yes stay away from dr google and usa sites this site is the one to use

User
Posted 16 Mar 2019 at 13:45
If we all stayed away from Google, most of us never would have found this site, and many would not be half as well informed as we are.

Google is an essential part of 21st century life, and - in my view - a marvellous resource.

All the advice you need (though my guess is that you know it already!), is to use Google carefully, thoughtfully, and selectively.

Yes, there's a lot of twaddle out on the web, and Google can only find what you tell it to find, it will not vet the sites for you (except for malware, but that's another story). But there's a wealth of high quality info out there too, probably enough to make your head spin.

There are, of course other search engines, but Google is probably the best at the moment.

Disclaimer: I have no shares in Google, nor any other interest, except finding the info I need. ;-)
User
Posted 16 Mar 2019 at 15:03

Originally Posted by: Online Community Member
If we all stayed away from Google, most of us never would have found this site


 


I think that is probably true although in our case, John was given a leaflet about support at his diagnosis appointment and the leaflet included details of this website. We did used to have a couple of urologists who were members of the forum (readers but not posters) and also at least one CNS plus a community PCa support worker so presumably they also recommend the forum to their patients. 


Three or four years ago, someone here posted criticism of his CNS and she mentioned it at their next meeting; it makes for an awkward patient / professional relationship :-/ 

Edited by member 16 Mar 2019 at 15:03  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Mar 2019 at 23:14

Many thanks for all your replies. They are much appreciated and I feel a little bit more grounded because of them. I think fear of the unknown and not having any answers is the main cause of my anxiety and I suppose that's only natural. I have contacted my surgery and left them a message to get back to me with my PSA number. They are closed at weekends so hopefully I'll hear back from them on Monday. I will also see about signing up to their EMIS system next week. I never realised what this system was for and just assumed it was only for making appointments or renewing prescriptions. I'll keep this thread updated when I find out what my PSA number actually is and how I get on with the Urologist on Friday. I'm trying to remain upbeat and positive. Even though I do not know the outcome yet, it's not like I can change what the outcome will be and this thought makes it easier to accept my current situation.


Thanks again for listening and for all advice received. Dr. Google did bring me here so I guess not all his referrals are that bad. :)


Cheers,


Mark


 

Edited by member 16 Mar 2019 at 23:15  | Reason: Not specified

User
Posted 17 Mar 2019 at 00:45

Originally Posted by: Online Community Member


 I will also see about signing up to their EMIS system next week. I never realised what this system was for and just assumed it was only for making appointments or renewing prescriptions. 



Bollinge has described a system that must be quite local to him where it just happens that the hospital trust uses EMIS and the GP practice has also chosen to use EMIS (or software has been purchased to allow their system to talk to EMIS) and has chosen to allow patients to see their results. 


It doesn't work like this everywhere! NHS trusts use a number of different electronic patíent record systems, while GP practices have only 4 to choose from. System one is the most common, followed by EMIS I think. A GP practice can refuse to have it, or they can install an e-system but decide that this will only be for appointments & prescriptions, etc. 


Don't assume that your GP practice offers something just because Bollinge’s does. In the area where I live, patients dont get access to their results online. I can log in and see my medical notes & referrals but not test results; we have to phone or visit in person to get those. My husband visits the GP practice a week after each PSA test and asks the receptionist to print the result off for him. 

Edited by member 17 Mar 2019 at 01:02  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Mar 2019 at 06:59
Same for me, Lyn. I can request my repeat prescriptions online but have to visit the surgery for test results. I was interested to read that you have to wait a week for PSA test results - I get mine in two days!

Cheers,

Chris
User
Posted 17 Mar 2019 at 07:20
I use the EMIS system and love it for re-ordering meds’ and booking blood tests etc. The medical history section is very random though. Any blood tests and results ordered by MY GP show up on there clearly. But blood tests ordered at hospital don’t. Psa test takes 2 days.
User
Posted 18 Mar 2019 at 18:54

My doctor phoned back today to confirm my PSA level. My PSA level is 3.370. I'm relieved it's not a ridiculously high number. I do understand that it doesn't necessarily mean I haven't got PC, but it's statistically less likely. The level is definitely outside the accepted normal range for someone my age. I'm both looking forward to and dreading my Urology appointment on Friday. I will update this thread with how that goes. I'm feeling much calmer today. Thanks everyone.


Mark

User
Posted 18 Mar 2019 at 19:13
That's good news, Mark. Thanks for keeping us updated.

Best of luck with your appointment,

Chris
User
Posted 18 Mar 2019 at 19:28

Originally Posted by: Online Community Member
Same for me, Lyn. I can request my repeat prescriptions online but have to visit the surgery for test results. I was interested to read that you have to wait a week for PSA test results - I get mine in two days!

Cheers,

Chris


I don't think they have ever said that it always takes the full week but it is a routine that works for him - he books his blood test for a week before the uro or onco appointment and then on appointment day, calls at the surgery for the result to take to the consultant's appointment later that day. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Mar 2019 at 23:02

Hello All Saint's 


Google is not the only search engine on this planet! Google is not different then CIA  or Mossad ot MI5 ot KGB.what ever you type on Google can be recorded or they can be tracked. 


World wide web has been created by Sir Tim burners Lee....Google? By Microsoft.


An American company:) who uses Google initially and afterwards? CIA. :)


So because of most of you use Google search engine ....AND most of you thinks that we are chatting on here because of Google or we should thanks to Google for everything's! ****That's is wrong! So wrong****


Google is a Global company that shares our details same as Facebook! But there are private search none profitable Search engines as well such as I use DUCK DUCK GO.


Unlike Google what ever you do with it .they cannot record  they cannot trace your store your details....its a private search engine!


Dear Friends I appreciated your help & Advise I personally gained so much from your advise since last December but on this case (Google) your wrong. 


Please try Duck duck go 


....you won't be disappointed. 


D.R 


 

User
Posted 19 Mar 2019 at 18:10

Originally Posted by: Online Community Member
Same for me, Lyn. I can request my repeat prescriptions online but have to visit the surgery for test results. I was interested to read that you have to wait a week for PSA test results - I get mine in two days!

Cheers,

Chris


At first I used emis for meds etc., then found that I can access my medical records and test results.


But you have to request it, the GP may edit the records so they may not be complete

User
Posted 19 Mar 2019 at 21:10

Geordie Mark, hope all goes well.


This site helped calm my nerves, I can tell you!


Are you going to the RVI Newcastle, or Durham/Sunderland Urology Department?


From a Mackem who has to say a big thank you to the Consultant at Durham/Sunderland, 8 months in after op, 2 blood tests below 0.03, getting there.


what ever happens we are all here to help in some small way.


 

User
Posted 19 Mar 2019 at 21:25

Originally Posted by: Online Community Member


Geordie Mark, hope all goes well.


This site helped calm my nerves, I can tell you!


Are you going to the RVI Newcastle, or Durham/Sunderland Urology Department?


From a Mackem who has to say a big thank you to the Consultant at Durham/Sunderland, 8 months in after op, 2 blood tests below 0.03, getting there.


what ever happens we are all here to help in some small way.


Many thanks Andy. This site has certainly helped my nerves a lot.


My Urology appointment is at the Durham Diagnostics & Treatment Centre which is part of the Sunderland NHS Foundation. Was this where you went? It looks like a fairly new building from the pictures I found online.


I'm glad you are getting there and recovering well. Best wishes from my side of the Tyne.


Mark

Edited by member 19 Mar 2019 at 21:45  | Reason: Spelling

User
Posted 19 Mar 2019 at 22:03

Hi Mark


Yes it was, just behind the Pulman garage at Belmont, then robotic surgery at Sunderland with a DaVinci machine. 


If it's the same consultant Mr SD? The site doesn't let you name anyone, he is a really nice guy, down to earth.


Hope all goes well


Andy


 


 

User
Posted 19 Mar 2019 at 22:09
Yes, that's the one Andy. Belmont Industrial Estate. It's reassuring to know you had a good experience there.

I don't yet have a named consultant yet so I'm not sure who I'll be seeing. I'll let you know if it's the same guy.

Cheers, Mark
User
Posted 22 Mar 2019 at 18:34
So I had my Urology appointment today and the consultant performed a DRE. He said my prostate was slightly enlarged for my age, but he could feel nothing out of the ordinary. He has arranged for me to have an MRI at the Sunderland Royal Hospital and put the odds of me having PC at 25%. Depending on the MRI results - he will then discuss the possibility of having a biopsy. Even if I didn't have a biopsy he said it would be prudent to have a repeat PSA test every 6 months. I guess all I can do now is wait for my MRI appointment to come through the post.

Thinking ahead. If the MRI came back negative do any of you think it wise to push for a biopsy? I have read a few times that scans sometimes miss things and a biopsy would be much more likely to detect anything untoward. I understand that a biopsy might not be the most pleasant thing in the world, but peace of mind is very important to me.

I would also like to say that now I have seen a specialist, I'm not as anxious or worried - compared to when I made my first post. The feeling of having something done about it and having that process started is quite empowering. I feel like I have some control back and when I came here panicking last week - I felt no control, fear and completely detached from reality. I don't know how I would have grounded myself if it weren't for all you kind folk on here so thanks again for that. I will continue to update this thread.

Cheers,
Mark

P.S. This is for Andy63. The consultant I saw could have been Mr. SD as those letters certainly go into his name. The chap I saw was very pleasant, down to earth and professional. I felt completely at ease. Thumbs up for the Durham Diagnostics & Treatment Centre. Thumbs down to whoever runs the paid parking as the machine wasn't accepting cards so I had to make payment by phone.
User
Posted 22 Mar 2019 at 19:07
Sounds as if you're in good hands now, Mark. I know there are those here who advocate "demanding" particular tests, but I think personally that creating an adversarial atmosphere with your urologist does no good at all. He's the expert; I'd take his advice on the best way to proceed.

Very best of luck with the MRI!

Chris
User
Posted 22 Mar 2019 at 21:00
Hi Geordie,
it would depend a little bit on what kind of MRI they give you. If a standard MRI then yes, these can miss tumours so a clear scan would not necessarily mean you didn't have any cancer. Also, a normal mRI can show suspicious areas but can't tell the difference between bruising, infection and tumour. If however, you are offered an mpMRI (which uses 3 or 4 different technologies to get an in depth view of your prostate, they can assess how likely any suspicious area is to actually be cancer (in a range of five from 'definitely not cancer' to 'almost definitely cancer'.

A clear normal scan should not necessarily rule out the need for biopsy but a clear mpMRI could possibly be so definitive that a biopsy would be an unnecessary intrusion. County Durham & Darlington NHS trust offers mpMRI to the PROMIS standard; Sunderland NHS trust offers mpMRI but not to the required standard. As CC says, consider the specialist's advice as s/he has had many years training & experience.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Mar 2019 at 21:02
I agree with Cheshire Chris yet at the same time have learned that the specialists just follow an agreed flow plan whether it suits or not for a particular patient. It is a NICE flowplan and I guess they have to follow it to the T , unless someone in the know challenges their sometimes pointless or useless treatment plan. Yes they offer everything they can in the right order but sometimes in the detriment to QOL and with no total gain to life span. Some people grab it by the horns and others judge it more wisely. When you actually challenge an Onco , they agree they are only following guidelines and that it is up to you. It is your cancer and you own it , and you can choose whatever you want that suits you. You don’t have to nod your head and take what their guidelines say. Some Oncos wouldnt put their own families through it all tbh. My brother who is a fully qualified consultant Radiologist won’t take a psa test despite my journey and to be fair I don’t blame him given what I’ve bedn through for zero results. I’ve recently had a 90 minute research call for PCUK and told them in my opinion a widespread PSA testing program is not right for young men. Such an unreliable test and putting thousands of men through unnecessary tests and strain and worry and procedures when they may not need it. Something more reliable needed !
User
Posted 22 Mar 2019 at 21:42
Bit of an odd reply to someone who is only waiting for an initial scan, CJ :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Mar 2019 at 22:09
I can’t reply however hard I try. I just resent the “ he’s the expert post “ because they are all experts but treat differently in every region. I believe it’s right to challenge a man or woman Onco bound by guidelines rather than smile and be chemically castrated and just accept it re Cheshire C post. We are not all the same and have the right to question our treatment. When challenged , my Onco agrees RT is practically worthless but is obligated to keep offering it. Others just bite their hands off whatever the outcome. Sorry to waver from the original post ok , but I dislike misguided advice also
User
Posted 22 Mar 2019 at 22:40

Hi Mark


Not sure if you got my earlier reply?


Personally I would ask for the biopsy, yes a little uncomfortable, bit like stapling your finger! But after the second dart you get used to it, lol


The only reason is because my own journey matches yours to a certain degree, small slightly enlarged prostate, but biopsy confirmed everything. OK I was 54 so slightly order.


Take care, 


Andy


 


 

User
Posted 23 Mar 2019 at 18:20

Many thanks for all the comments and advice. There are obviously a lot of conflicting opinions here and that's all good. Everything said is representative of making good informed decisions - based on individual personality types and past experiences. For someone like me, these personal beliefs are invaluable. I'm quite agnostic and a very deep thinker. I do frequently overthink things and this will often lead me down a path where I will worry and fixate about stuff. Sometimes this can be a blessing and other times it can be a curse. Striking a balance is difficult, especially when it concerns anything that's health related and even more so; when it's potentially something quite serious. I need to be in possession of the facts and I need to listen to every side of all arguments. This thread has now become an internal debate inside my head and I have no doubt it will eventually lead to making the best decisions that are right for me. I cannot express how much I appreciate the impact you're all having on this process. It means a lot.


As it stands right now. I haven't had an MRI yet and I have not been diagnosed with anything. However, I do not think a clear MRI would give me enough peace of mind to formally dismiss the prospect of potentially having PC. I think a clear mpMRI would have been more helpful in doing that. Thanks Lyn for mentioning this. I didn't realise there were different types of MRI or different standards. I do trust my Urologist and Cheshire Chris raises a very good point about not creating an adversarial atmosphere by demanding particular tests. I also understand that our NHS is stretched when it concerns time, money and resources. The last thing I want to do is become a drain on the system or take valuable diagnostic and treatment time away - from those who may need it more. At the same time I have to consider my own peace of mind and how not having any would effect my life in the future. I think I will wait for the MRI and what comes next, but if that scan is clear, I will have to express my concerns and fears to the Urologist and see if I could possibly convince him to take me down the route of a biopsy. This is not something I would look forward to, but it's something that would give me enough closure, especially after reading Andy's story and feedback. Everything is of course based on a 'what if' for me right now, but it helps to think about outcomes and plan for possibilities and eventualities. I do not want to be caught off guard.


Just touching on what Chris J said about widespread PSA testing not being routinely performed on young men. I would have to agree with this. I only had a PSA test done because of issues with my water works. I think PSA testing at a younger age would create a lot of anxiety and stress for people who generally do not need to worry. I do wish they could develop a more accurate test in the future, although I'm sure this is something that people are working on right now and hopefully will become a reality someday.


Thanks again for all the replies and I wish you all a great weekend. 


All the best, Mark.

Edited by member 23 Mar 2019 at 18:29  | Reason: Two people named Chris. Needed to differentiate.

User
Posted 23 Mar 2019 at 18:35

Originally Posted by: Online Community Member


I do trust my Urologist and Chris raises a very good point about not creating an adversarial atmosphere by demanding particular tests. I also understand that our NHS is stretched when it concerns time, money and resources. The last thing I want to do is become a drain on the system or take valuable diagnostic and treatment time away - from those who may need it more. At the same time I have to consider my own peace of mind and how not having any would effect my life in the future. I think I will wait for the MRI and what comes next, but if that scan is clear, I will have to express my concerns and fears to the Urologist and see if I could possibly convince him to take me down the route of a biopsy. This is not something I would look forward to, but it's something that would give me enough closure, especially after reading Andy's story and feedback.



Just a small clarification, Mark. I'm certainly not suggesting that you don't discuss your diagnosis and the best way forward with your urologist; having such discussions is an excellent idea, and the more you know about your diagnosis the better the position you'll be in to make an informed decision should the necessity arise further down the road. It seems entirely reasonable to me to express your wish for a biopsy if the MRI scan leaves even the smallest doubt about cancer.


Best wishes,


Chris

User
Posted 18 Apr 2019 at 12:38

Just thought I would update this thread. Since I last posted; I had an MRI at the Sunderland Royal Hospital and a urine flow test at the Durham Diagnostics & Treatment Centre. I have not heard back from Urology with any formal results from these two tests, but today I received an appointment letter for a TRUS biopsy. I can only assume that they found something suspicious on the MRI? I do feel a little bit anxious about this assumption and I'm definitely nervous about having the TRUS procedure. The BAUS pamphlet they sent lists the odds of all the possible complications. Not good for the occasional worrier like myself. However, I am generally in good spirits about the whole thing and trying to remain cautiously optimistic. I will keep all of you great people updated with how things progress.


Best wishes, Mark.

User
Posted 18 Apr 2019 at 13:01
I would presume ‘something’ suspicious was found in your MRI scan, warranting further investigation, hence your biopsy letter.

What a shame no-one in urology had a few minutes to advise you by phone of their suspicions, rather than a biopsy appointment dropping on your doormat.

Now you can look forward to a wait for the biopsy and then two to three weeks for the results of it. I trust you are a patient man, and anyway, the ‘suspicion’ could turn out to be benign.

Best of luck.

Cheers, John.
User
Posted 18 Apr 2019 at 14:13

A prostate MRI (even with contrast) can't diagnose PC by itself.
It can highlight any areas which need investigating, and it's really good to have had it before a biopsy, because it enables the biopsy to be targeted to the right area. It might be that either the TRUS or a transperineal template prostate biopsy (TTPB) would have been done anyway, but they were waiting for the MRI result first in case it shows specific areas to target, or that one biopsy method is more appropriate in your case. Would have been nice to explain this first though.


TRUS is a bit uncomfortable, but not painful. Most people have no bad effects from TRUS, beyond blood in semen for 3-6 weeks, and blood in urine and rectum for a couple of days.

Edited by member 18 Apr 2019 at 14:32  | Reason: Not specified

User
Posted 18 Apr 2019 at 17:09

Hi Mark


don't worry to much about the biopsy procedure, its not that bad, a little uncomfortable but the guy at Durham was great and explained everything as he went and what to expect.


Normally with SD, you can ring his secretary a week later to make the next appointment to see him that same week.


Hope it all works out


I see Rafa has worked his miracle again!!  :-(


andy 

User
Posted 18 Apr 2019 at 17:59

Don’t assume that they found something on the MRI - it wouldn’t be best practice to rely solely on the scan. The best diagnostics are by combining all available results... the PSA, DRE, MRI and biopsy. Even if there is a grey area on the scan, it may not be cancer.


In your own words “However, I do not think a clear MRI would give me enough peace of mind to formally dismiss the prospect of potentially having PC.” If they had written saying “hey your scan was clear, off you go” you would probably be anxious that they hadn’t done full checks. 

Edited by member 18 Apr 2019 at 18:19  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Apr 2019 at 18:15
Rafa, Rafa, Rafa 🎉💕
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Apr 2019 at 15:40

Thank you for all your replies.


Another update: This morning I had my TRUS biopsy. For anyone who is reading this thread and hasn't had one of these before, there really isn't anything to worry about. My threshold for pain isn't great, but the procedure isn't painful at all. I would describe it as slightly uncomfortable with the sensation of a staple gun without any pain (the local anaesthetic really does work a treat). I was a little alarmed to find blood in my urine afterwards, but this is expected and a normal side-effect. It still took me by surprise though and freaked me out for a minute or two. Anticipation of having a TRUS biopsy is far worse than the procedure itself. If I could advise my former self then I would tell myself to not dwell on that appointment date in my diary. I really did make a fuss about nothing.


As for waiting for the results. I'm not going to worry about that either or torture myself in the meantime. What will be, will be and waiting a few weeks is not going to change the outcome. As LynEyre pointed out when she quoted back my own words. Not having a biopsy would not have given me the peace of mind I needed so it would have been something I would have eventually requested, regardless of the MRI results. I also learned what my MRI results actually were today. The result of my scan was inconclusive. There was nothing on it to rule-in or rule-out PC which is why my Urologist referred me for the biopsy, taking into account that I have slightly elevated PSA levels. It would have been nice to have received this information before the biopsy appointment, but I'm not going to complain too much about that. I have received excellent overall care, thus far, and no system is perfect I suppose.


Have a great week all. Mark.

User
Posted 25 Apr 2019 at 08:22
Glad to hear that the biopsy went well, Mark. As you say, the anticipation is far worse than the actual event!

All the best,

Chris
 
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