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Referal back to Oncology

User
Posted 06 Nov 2015 at 11:28
I am 2.5 years post RP - my PSA has been rising slowly since December last year and based on the result recieved this monring has doubled since the summer to 1.3. The special nurse explained that I will be referred back to oncology to discuss next steps but I'm wondering if I should consider a change of NHS trust as my experiance with Peterborough during diagnosis was pretty bad. Does anyone have any experiance of Liecester hospital and what kind of reputation they have in the PCa treatment field?

Thanks.

User
Posted 06 Nov 2015 at 16:23

Hi,
I don't know about the hospitals involved but bear in mind that your diagnosis was probably handled through urology and the oncology department will be a different team.

You could pop in and have a chat with the Macmillan team at Peterborough and ask them what kind of feedback they get? Or you could see how the referral goes and then ask for a second opinion at Leicester if you are concerned.

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

User
Posted 06 Nov 2015 at 18:10

A

Below is a link to a local support Prostate support group, I do not know anything about them but there are some contact details on the page.

I could not see a prostatecanceruk support group which surprised me.

http://www.c-w-c.org.uk/prostate-cancer-support-group_a24.aspx

Thanks Chris

 

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User
Posted 06 Nov 2015 at 16:01

Can't help with your query Andrew but hoping by posting somebody else will see it for you

We can't control the winds - but we can adjust our sails
User
Posted 06 Nov 2015 at 16:23

Hi,
I don't know about the hospitals involved but bear in mind that your diagnosis was probably handled through urology and the oncology department will be a different team.

You could pop in and have a chat with the Macmillan team at Peterborough and ask them what kind of feedback they get? Or you could see how the referral goes and then ask for a second opinion at Leicester if you are concerned.

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

User
Posted 06 Nov 2015 at 18:10

A

Below is a link to a local support Prostate support group, I do not know anything about them but there are some contact details on the page.

I could not see a prostatecanceruk support group which surprised me.

http://www.c-w-c.org.uk/prostate-cancer-support-group_a24.aspx

Thanks Chris

 

User
Posted 06 Nov 2015 at 18:50

Did addenbrookes do further tests of their own to upgrade Gleason score? My husband had been on active surveillance for over 2 years with Gleason 6,then his psa started to rise,so we were told a trans perineal biopsy would be needed as the whole prostate could not be biopsied with a trans rectal,for this we were referred to addenbrookes,the Gleason was upgraded to 7 with now more cores positive. The Mri reported as completely reassuring originally was at addenbrookes reported as one area of concern, I asked why this was and the urologist said they had more experience at reading the scans. This left us concerned that as the biopsy wasn't until September and the mri had been in March that the cancer may have had time to spread! Thankfully as far as we know this is not the case. Like you we have now been referred back to our own hospital to discuss treatment with the oncologist. I understand your concern but feel we now have the true picture any trust that the oncologists advice and treatment will be as good as at any hospital,appointment for this on Thursday so we will see how it goes.

User
Posted 06 Nov 2015 at 19:54

Sofijoan, I think Addenbrookes upgraded the Gleason once they had his whole gland in a Petrie dish and could do proper tests.

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

User
Posted 07 Nov 2015 at 09:51

Actually Addenbrookes upgraded my Gleason score from the information provided to them by Peterborough where my original scans and biopsy were completed. They did of course confirm my upgraded score post surgery. I did ask Peterborough how their assessment could have been so different from Addenbrookes and was told by the Oncologist that it's because 'they see more prostates than we do' - very reassuring!

Andrew

User
Posted 07 Nov 2015 at 14:00

There must be situations where for example a Gleason may be seen by one path lab as nearer to a 3 whereas another think it is nearer to a 4 maybe 3.8 or 3.9 if more finely graded. It is a matter of interpretation and experience. In a similar vein PSA is sometimes just given as say sub one whereas other labs give it to one or more decimal places because more sensitive machines help calibrate. Except in cases where PSA is very low this makes little difference but with Gleason there is quite a difference between say a 3 and a 4 as judged by the assessor. It also has to be remembered that within the prostate there can be a range of cells and ongoing mutation with latest and better opportunity to arrive at a determination when a prostate is examined in the path lab after prostatectomy.

Barry
User
Posted 07 Nov 2015 at 15:38

Hi Lyn,sorry crossed wires here,the prostate is still in my husband not the dish!

User
Posted 07 Nov 2015 at 17:07

Sofijoan , I am confused now unless you are married to Andrew? It was his prostate I was referring to but as it turned out I had misread his profile anyway!

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

User
Posted 08 Nov 2015 at 12:44
Now I know we did right to go privately to Addenbrooks/Nuffield. The consultant has tesla3 MRI not 1.5 as is standard and he says they have vast experience of reading MRI results and in assessing biopsy results. We now wait for results and his guidance on where we go next with them

 
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