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Mixed Messages in the Midlands

User
Posted 25 Feb 2020 at 14:50

Hi All, I've been lurking around here for a couple of months gathering useful info before and since my husband was recently diagnosed with prostate cancer. As far as we know it's the least worst kind - Gleason 6 - but dealing with hospitals and getting info has us stressed to the max right now, so I'm letting off steam on his behalf.


So for reasons unrelated to prostate cancer he was having fairly regular PSA tests for a number of years. Early last year the GP said the results were concerning him and recommended a biopsy. Now, husband is quite squeamish about this area and didn't want any unneccessary invasive procedures considering his PSA level had been high-ish for some time. Sorry, I don't have the figures to hand for those tests. But later last year the GP contacted him again for a chat and almost insisted he have the biopsy because "I think it's cancer and it would be remiss of me not to tell you."


Now the dreaded C-word is mentioned he went ahead with the TRUS biopsy on 16th December. Obviously the waiting is stressful, but by 10th January when he hadn't heard anything I called around and nobody could tell me anything. Then a letter came for an appointment at Urology for 21st January. As the lengthy wait was becoming unbearably stressful I called to ask for the biopsy results but they don't give info over the phone. So at the appointment cancer was confirmed. I should explain here my husband is hard of hearing so I go to appointments with him and we get everything repeated to make sure it's correct. And we were told to begin having PSA blood tests every fortnight starting a week or two before having a template biopsy in around six weeks time, to continue fortnightly tests for a few months - all being stable to have them every few months. He explained what to expect with the template biopsy and my husband said to confirm "So the next step is wait for the biopsy appointment?" and the consultant confirmed yes, you'll get an appointment letter in the post. The nurse gave us a card with two names and two extension numbers on it, plus an info pack. Went home and immediately told the family about the biopsy around the first week of March while it was fresh in our minds.


Then he receives a normal appointment letter with Urology for the 17th March but no mention of a biopsy so I called one of the extension numbers to ask what this appointment was actually for, but they had no idea. She said she'd find out and ring back but never did. I rang again a few days later. Spoke to a different nurse I think, who again didn't know what the appointment was for and said "Maybe it's to discuss biopsy results" and I said "We haven't had a letter for the second biopsy yet" to which she replied "Oh that won't be for 12 months." I was shocked and explained what we'd been told at the 21st January appointment so she said she'd look into it and get back to me but never did.


So I rang them a third time to ask what was going on, she didn't know (see a pattern yet?), but then said "Oh, the appointment just changed on my screen as I was looking at it. It's changed to August." I'm saying "I just want to find out what this appointment is actually for if it's not for a follow-up to a second biopsy" and she replied "I'd like to find out just as much as you do!" Said she'd look into it and get back to me. Never did. Received a letter for an appointment on 25th August stating "The reason this appointment has been changed is due to the medical team being unable to attend clinic."


Now we're up to date. Yesterday he received a further letter with an appointment cancelling the August one and bringing it forward to 10th March instead. I rang again only to be told this appointment is because the consultant wants to explain everything "in person". And I have no idea what that means or what the appointment was even for in the first place. There's no explanation as to whether they expected my husband to continue having fortnightly blood tests until August then, or how we could have mixed up "biopsy in six weeks" to "biopsy in twelve months". Now I'm waiting for the GP to ring back this afternoon in the hope he can clarify some of it.


Sorry to whinge! But everything would have been so much easier to deal with if we hadn't got mixed messages and now another worrying three weeks wondering what they want to talk about.


 


 

User
Posted 27 Feb 2020 at 17:41
It's shame you have been messed about, I had my tests and MRI etc at Kidderminster and Redditch and it all worked quite well. My Urologist who cannot be named was very precise with everything that needed to be done. His advice was spot on and he even arranged for my treatment at another out of area hospital. I wish he hadn't moved to another local hospital in an adjacent NHS area.
I cannot help but feel that the consultant in charge of the case can make a very big difference, if you read this Mr who cannot be named, you will know who I am, thanks for everything.

John






Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 25 Feb 2020 at 16:03

Hi, 


It will be better to find out more information about the biopsy.   For example:


 - What is his Gleason Score which could be for example 3+3?


 - How many pins did they find cancer on?


Also separately what is his psa reading?


He hasn't had an MRI by the sound of it.  Nowadays it's usual to have an MRI before the biopsy.


The GP might sort it out but they aren't specialists.   I wonder if you have a choice of hospital as it sounds a bit strange.

User
Posted 25 Feb 2020 at 16:36

That is rather bad service you are receiving. Unfortunately I think people do fall through the cracks in the system and this sort of thing happens. 


The NHS has a target of 62 days between GP referral and start of treatment for cancer. It sounds like they have missed this target, or maybe they have decided that active surveillance is the treatment and the two weekly psa tests are part of that surveillance.


I know my hospital appoint a named key worker for each patient, mine was called Nurse WhoCanNotBeNamed. She was there for all appointments, I had her card with her number, so any questions I could call her, this way you have one point of contact, which is good. If you can get the hospital to assign one nurse to your case that will help. 


Having two weekly psa tests sounds strange this cancer is not so aggressive that things will change in that short time period. Having a template biopsy after a TRUS when they have already diagnosed G3+3 seems strange.


Maybe someone (Lyn), has seen this abundance of diagnostic tests after cancer has been diagnosed, and prior to treatment but it makes no sense to me. 

Dave

User
Posted 25 Feb 2020 at 16:46

Your old man is a victim of the TRUS biopsy inaccuracy, ‘the trial has shown us it’s as bad as we thought it was’ in the words of a top prostate oncologist. Many hospitals are abandoning them in favour of transperineal biopsies which do not perforate the bowel with the attendant risk of infection by doing so.


We had a guy this week who has had to have three of the bloody things! The template biopsy should tell you what’s what, and give you an idea of the way forward.


And you are quite correct to be pro-active, and chase up any shortcomings and miscommunication. There is always the sanction of a chat with the hospital PALS (complaints) department, which tends to concentrate everyone’s mind! I have not needed to in my own case but I help an elderly friend in his late eight eighties with the disease who was being neglected and buggered about, but a word to PALS got everything back on course.


When you say West Midlands, which hospital is he under?


Best of luck.


Cheers, John.

Edited by member 25 Feb 2020 at 16:55  | Reason: Not specified

User
Posted 25 Feb 2020 at 18:55

The most up to date guidance is that a man diagnosed with a G3+3 who may be suitable for active surveillance should have a more detailed biopsy first to check that the TRUS was accurate. It seems that this is what your urologist had in mind but no one has told the urology nurses. I have never, ever heard of anyone being advised to have 2 weekly PSA tests (what a waste of NHS resources!) but the advice to have a PSA test a couple of weeks before he second biopsy was wise because his PSA results won't be reliable immediately after the biopsy.


If he was my dad or friend, I would be advising him to write down (in list format rather than narrative as you have done above) exactly what you believe the agreed next steps were, and take that to the appointment on 10th March. Call me a cynic but my worry for you is that having decided that he wanted a more detailed biopsy, the urologist has been told by a manager or finance person that it isn't necessary - clinical decisions should not be over-ridden by cost implications but I think they often are.


By the way, I think that the comment above about the 62 day target isn't relevant to you; it seems from what you have said that the decision on the 21st January was to put your husband on AS. This would explain a) the person on the phone thinking that you didn't need another biopsy appointment for a year, b) their casual approach to postponing your appointment from March to August. 

Edited by member 25 Feb 2020 at 18:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 25 Feb 2020 at 16:03

Hi, 


It will be better to find out more information about the biopsy.   For example:


 - What is his Gleason Score which could be for example 3+3?


 - How many pins did they find cancer on?


Also separately what is his psa reading?


He hasn't had an MRI by the sound of it.  Nowadays it's usual to have an MRI before the biopsy.


The GP might sort it out but they aren't specialists.   I wonder if you have a choice of hospital as it sounds a bit strange.

User
Posted 25 Feb 2020 at 16:36

That is rather bad service you are receiving. Unfortunately I think people do fall through the cracks in the system and this sort of thing happens. 


The NHS has a target of 62 days between GP referral and start of treatment for cancer. It sounds like they have missed this target, or maybe they have decided that active surveillance is the treatment and the two weekly psa tests are part of that surveillance.


I know my hospital appoint a named key worker for each patient, mine was called Nurse WhoCanNotBeNamed. She was there for all appointments, I had her card with her number, so any questions I could call her, this way you have one point of contact, which is good. If you can get the hospital to assign one nurse to your case that will help. 


Having two weekly psa tests sounds strange this cancer is not so aggressive that things will change in that short time period. Having a template biopsy after a TRUS when they have already diagnosed G3+3 seems strange.


Maybe someone (Lyn), has seen this abundance of diagnostic tests after cancer has been diagnosed, and prior to treatment but it makes no sense to me. 

Dave

User
Posted 25 Feb 2020 at 16:46

Your old man is a victim of the TRUS biopsy inaccuracy, ‘the trial has shown us it’s as bad as we thought it was’ in the words of a top prostate oncologist. Many hospitals are abandoning them in favour of transperineal biopsies which do not perforate the bowel with the attendant risk of infection by doing so.


We had a guy this week who has had to have three of the bloody things! The template biopsy should tell you what’s what, and give you an idea of the way forward.


And you are quite correct to be pro-active, and chase up any shortcomings and miscommunication. There is always the sanction of a chat with the hospital PALS (complaints) department, which tends to concentrate everyone’s mind! I have not needed to in my own case but I help an elderly friend in his late eight eighties with the disease who was being neglected and buggered about, but a word to PALS got everything back on course.


When you say West Midlands, which hospital is he under?


Best of luck.


Cheers, John.

Edited by member 25 Feb 2020 at 16:55  | Reason: Not specified

User
Posted 25 Feb 2020 at 18:55

The most up to date guidance is that a man diagnosed with a G3+3 who may be suitable for active surveillance should have a more detailed biopsy first to check that the TRUS was accurate. It seems that this is what your urologist had in mind but no one has told the urology nurses. I have never, ever heard of anyone being advised to have 2 weekly PSA tests (what a waste of NHS resources!) but the advice to have a PSA test a couple of weeks before he second biopsy was wise because his PSA results won't be reliable immediately after the biopsy.


If he was my dad or friend, I would be advising him to write down (in list format rather than narrative as you have done above) exactly what you believe the agreed next steps were, and take that to the appointment on 10th March. Call me a cynic but my worry for you is that having decided that he wanted a more detailed biopsy, the urologist has been told by a manager or finance person that it isn't necessary - clinical decisions should not be over-ridden by cost implications but I think they often are.


By the way, I think that the comment above about the 62 day target isn't relevant to you; it seems from what you have said that the decision on the 21st January was to put your husband on AS. This would explain a) the person on the phone thinking that you didn't need another biopsy appointment for a year, b) their casual approach to postponing your appointment from March to August. 

Edited by member 25 Feb 2020 at 18:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Feb 2020 at 11:46

Thanks for the great advice Lyn, it makes sense that the urologist's decision was overridden because he seemed very pro-active at the time, mainly because my husband is 51 so a little on the younger side for PC. With the nurses unable to explain what's happening either we were getting the impression he had been "downgraded" somehow. We're going to ask the urologist to actually put it in writing at the next appointment to avoid further stress and mix-ups.

User
Posted 26 Feb 2020 at 11:51

Cheers John. Yes, I've seen a few other horror stories here. The general consensus seems to be that the care is fairly good but the admin side is a nightmare.


Another possible cause of the mix-up is that he's being seen at both Redditch and Kidderminster hospitals. I'll bear PALS in mind but hopefully it won't come to that. Thanks again for replying.

User
Posted 27 Feb 2020 at 17:41
It's shame you have been messed about, I had my tests and MRI etc at Kidderminster and Redditch and it all worked quite well. My Urologist who cannot be named was very precise with everything that needed to be done. His advice was spot on and he even arranged for my treatment at another out of area hospital. I wish he hadn't moved to another local hospital in an adjacent NHS area.
I cannot help but feel that the consultant in charge of the case can make a very big difference, if you read this Mr who cannot be named, you will know who I am, thanks for everything.

John






Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

 
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