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NHS 2 week pathway for diagnosis

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User
Posted 09 Aug 2023 at 14:22

Hi all and thanks in advance for looking.


Over the last 2 years i have had the onset of all the prostate related issues with flow, dribbling, urgency and night time urination which i just put down to getting older.  Then in April this year i was diagnosed with Prostatitis and underwent a 2 week course of antibiotics.  After a few days things got much better and after the 2 week course a urine test confirmed everything was back to normal.  However my GP arranged a routine blood test for  4 weeks after the antibiotics.  The results came back showing a PSA level of 3.9, i had had a previous test done in February of this year and it was 1.6. (so more than doubled in 6 months)


Therefore i was referred to see an Urology consultant under the NHS 2 week wait cancer pathway.  The letter i had stated that if i had not heard anything within the first 5 days to contact the Hospital.  As i did not hear anything i rang them only to be fobbed off with how busy they are and i will hear something soon.  They did say my appointment may go a little past the 2 weeks.  Although slightly annoyed i accepted that they are very busy and i would probably get my consultation in the next 2 to 3 weeks.


However today i have received an appointment for a date in the 3rd week of September which will be 8 weeks from the referral.  I obviously rang the and just got the same story about how busy everyone is and the date is the earliest i can be seen.  I also contacted PALS who said they could lodge a complaint and i might get an answer in 7 days.


So was just wandering is this normal? am i over reacting? do i need to push harder for an earlier appointment?


Like most of you on this site you will know how it feels, "not to know"...i must spend the majority of time from when i get up to going to bed thinking about whether i have prostate cancer or not.  And having to wait a further 7 weeks just for a consultation is cruel in my opinion.  Apolgies to anyone reading this who has been diagnosed as it may seem like i am whinging about nothing.


Thanks David.


 


 

User
Posted 13 Aug 2023 at 10:54

A risk of a private diagnosis is not having an MDT (Multi-Disciplinary Team) overseeing your diagnosis. If you go privately in an NHS hospital or large private hospital, you probably will, but if you just go to a urology consultant working in private rented outpatient facility, you might not. In that case, you don't have the oversight of other surgeons, oncologists, radiologists, CNS's, etc reviewing your case each time new test results come back.


Private treatment is a separate issue from a private diagnosis. A difficulty there is you won't get any of the support services included. In theory, you can go back to the NHS for them, but in practice, it's difficult to get on the train later, if you weren't on when it started out.

User
Posted 09 Aug 2023 at 14:22

Hi all and thanks in advance for looking.


Over the last 2 years i have had the onset of all the prostate related issues with flow, dribbling, urgency and night time urination which i just put down to getting older.  Then in April this year i was diagnosed with Prostatitis and underwent a 2 week course of antibiotics.  After a few days things got much better and after the 2 week course a urine test confirmed everything was back to normal.  However my GP arranged a routine blood test for  4 weeks after the antibiotics.  The results came back showing a PSA level of 3.9, i had had a previous test done in February of this year and it was 1.6. (so more than doubled in 6 months)


Therefore i was referred to see an Urology consultant under the NHS 2 week wait cancer pathway.  The letter i had stated that if i had not heard anything within the first 5 days to contact the Hospital.  As i did not hear anything i rang them only to be fobbed off with how busy they are and i will hear something soon.  They did say my appointment may go a little past the 2 weeks.  Although slightly annoyed i accepted that they are very busy and i would probably get my consultation in the next 2 to 3 weeks.


However today i have received an appointment for a date in the 3rd week of September which will be 8 weeks from the referral.  I obviously rang the and just got the same story about how busy everyone is and the date is the earliest i can be seen.  I also contacted PALS who said they could lodge a complaint and i might get an answer in 7 days.


So was just wandering is this normal? am i over reacting? do i need to push harder for an earlier appointment?


Like most of you on this site you will know how it feels, "not to know"...i must spend the majority of time from when i get up to going to bed thinking about whether i have prostate cancer or not.  And having to wait a further 7 weeks just for a consultation is cruel in my opinion.  Apolgies to anyone reading this who has been diagnosed as it may seem like i am whinging about nothing.


Thanks David.


 


 

User
Posted 27 Oct 2023 at 11:26
Hi all,

Apologies for no updates but here is were what has happened since above referrals...

I went private and had an initial consultation where we discussed my symptoms and a DRE was performed.
Consultant thought the previous blood test was too close to the original infection and booked another test.
The DRE felt smooth with no obvious signs of any bumps or lumps, although it was confirmed that the protate was enlarged. Also a mini utrasound was done, only concern was amount of urine being left in my bladder after trying to empty as much as i could. Consultant arranged a full detailed ultrasound at the same time as the blood test.
Blood test result showed PSA level still at the same level 3.9, which was now 14 weeks post infection. Consultant stated that it could still be a result of the infection.
Detailed ultrasound apart from confirming prostate enlargment, did not show any major issues other than retention of fluid post passing of urine.
Consultant agreed to carry out an MRI to investigate further.
MRI showed a 55cc prostate giving a PSA density of 0.07. It also showed two small areas in the left peripheral zone which are slighly atypical but no other serious problems.
The consultant described the lesions seen in the MRI as consistent with inflamation but cannot be 100% sure. Therefore we
discussed the possibity of carrying out a biopsy but we both agreed that it would be better to wait a little longer to see how things progress.
Therefore another blood test has been arranged for the end of November and depending on the results of that another MRI may be needed to see if there has been any changes to the lesions.
However the consultant is quite concerned about the urine retention in the bladder and how this could lead to ther complications going forward. He prescribed me with Tamsulosin to relax the prostate which initially seemed to have a little bit of success with not having to get out of be during the night as often to urinate. There are side affects also which go with the Tamsulosin which i experienced, stuffy nose, head aches and more common reduced seamen quatity, vitually zero! But the biggest side affect which has led me stop taking them is tooth dissorder, pain in the teeth and gums.
Also consultant has prescibed some other medicine to go alongside the Tamsulosin and to combat the the bladder outflow obstruction. He has suggested Finasteride or Dutesteride which are both long term drugs which also can have some more severe side affects.
I have decided not to take any more medicines until after the next blood test as they can reduce PSA levels and i want to compare apples with apples.
In summary its looking more likely not to be PC and if it is, it will be very early stages, so either way a positive i think.
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User
Posted 09 Aug 2023 at 14:56

I sympathise with you because it resonates with my situation in many ways - prostatitis, dribble, frequency, night time trips, burning etc. Sudden rise in PSA, the GP did not think it relevant but I knew it was, so I bypassed the GP (private health insurance), three weeks later I had prostatectomy. That was 12 years ago and my PSA has been <0.003 since surgery. You are quite right to pressurise the hospital. During my time prostate cancer wasn't taken seriously, situation is quite different now. Keep pressurising the hospital, earlier you see someone the better. Good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 09 Aug 2023 at 15:32

I think your GP should have waited more than 4 weeks before doing the PSA test. It's a minimum of 6 weeks to wait after a biopsy before testing PSA again, and even then it won't yet have returned quite back to base.


As for the delay, are you within reach of another hospital? If so, you could ask your GP if you can be referred there instead.


If you end up with a long wait, it would be ideal to have the PSA test done again after another, say, 4-6 weeks, but there may be no easy route to do this.

User
Posted 09 Aug 2023 at 16:33

Pratap,  Thank you for your reply and its really encouraging to hear your story and that you are well 12 years after your operation.  I do have an option to go private so it will be something i may pursue after speaking to my GP.


Thanks for the advice.

User
Posted 09 Aug 2023 at 16:39

Thank Andy for the reply,  I did wonder myself if the blood test was too soon after the Prostatitis and questioned it with the GP who said the timescale was more about the antibiotics being cleared out of my system.


I do fall within a catchment area between two Hospitals, so this was going to be the basis of my discussion with the GP.  Good call on the additional blood test, i will ask.


Thanks

User
Posted 13 Aug 2023 at 10:40

Just an update, i have decided to go down the private route although there is still a three week wait.  So my initial consultation will be 29th August.  I will update this conversation afterwards for information just in case it may help someone in the future.


One very good peace of advice i have taken from this site with going private is to obviously do some research on the consultant that you chose.  The one i have chosen is also the senior consultant for one of the local NHS hospitals so if for some reason i need ongoing support outside or after the private medical cover i can still be under the care of the same consultant.  Well that's the plan!

User
Posted 13 Aug 2023 at 10:54

A risk of a private diagnosis is not having an MDT (Multi-Disciplinary Team) overseeing your diagnosis. If you go privately in an NHS hospital or large private hospital, you probably will, but if you just go to a urology consultant working in private rented outpatient facility, you might not. In that case, you don't have the oversight of other surgeons, oncologists, radiologists, CNS's, etc reviewing your case each time new test results come back.


Private treatment is a separate issue from a private diagnosis. A difficulty there is you won't get any of the support services included. In theory, you can go back to the NHS for them, but in practice, it's difficult to get on the train later, if you weren't on when it started out.

User
Posted 27 Oct 2023 at 11:26
Hi all,

Apologies for no updates but here is were what has happened since above referrals...

I went private and had an initial consultation where we discussed my symptoms and a DRE was performed.
Consultant thought the previous blood test was too close to the original infection and booked another test.
The DRE felt smooth with no obvious signs of any bumps or lumps, although it was confirmed that the protate was enlarged. Also a mini utrasound was done, only concern was amount of urine being left in my bladder after trying to empty as much as i could. Consultant arranged a full detailed ultrasound at the same time as the blood test.
Blood test result showed PSA level still at the same level 3.9, which was now 14 weeks post infection. Consultant stated that it could still be a result of the infection.
Detailed ultrasound apart from confirming prostate enlargment, did not show any major issues other than retention of fluid post passing of urine.
Consultant agreed to carry out an MRI to investigate further.
MRI showed a 55cc prostate giving a PSA density of 0.07. It also showed two small areas in the left peripheral zone which are slighly atypical but no other serious problems.
The consultant described the lesions seen in the MRI as consistent with inflamation but cannot be 100% sure. Therefore we
discussed the possibity of carrying out a biopsy but we both agreed that it would be better to wait a little longer to see how things progress.
Therefore another blood test has been arranged for the end of November and depending on the results of that another MRI may be needed to see if there has been any changes to the lesions.
However the consultant is quite concerned about the urine retention in the bladder and how this could lead to ther complications going forward. He prescribed me with Tamsulosin to relax the prostate which initially seemed to have a little bit of success with not having to get out of be during the night as often to urinate. There are side affects also which go with the Tamsulosin which i experienced, stuffy nose, head aches and more common reduced seamen quatity, vitually zero! But the biggest side affect which has led me stop taking them is tooth dissorder, pain in the teeth and gums.
Also consultant has prescibed some other medicine to go alongside the Tamsulosin and to combat the the bladder outflow obstruction. He has suggested Finasteride or Dutesteride which are both long term drugs which also can have some more severe side affects.
I have decided not to take any more medicines until after the next blood test as they can reduce PSA levels and i want to compare apples with apples.
In summary its looking more likely not to be PC and if it is, it will be very early stages, so either way a positive i think.
User
Posted 27 Oct 2023 at 17:53

If urine retention is a problem and medication is not working for you, consider Clean Intermittent Self Catheterisation (CISC)


 https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter


 

Dave

User
Posted 27 Oct 2023 at 21:28

David Woodland,


Here's hoping that it's not Prostate Cancer at all, but sorry to hear about your Prostatitis and urinary problems.


It sounds like your Consultant is on the case, though, so you seem to be in good hands.


Best wishes,


JedSee.

 
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