Diagnosed 13 weeks no treatment yet

User

Posted 09 Oct 2018 at 11:24

Initially I was diagnosed with enlarged prostate in 2016 but at 12 month checkup PSA had risen to 8.4 so was given MRI scan - had to chase result after waiting for 6 weeks . It was then decided that I should have a biopsy . I was then informed at a consultation - again a chased appointment - that I had aggressive cancer .That was 10/7/2018. Gleason score 4+5 =9 T2C NO MX . A bone scan was done and was clear .

This was at Kettering General Hospital and I was then referred to Leicester General Hospital for surgery and Northampton General Hospital if I decided on the radiotherapy route .

After more chasing and a possibly lost or mislaid referral letter I had an appointment at Leicester with the surgeon on 6/9/2018 and was put on his list for surgery on 13/9/2018 with a possible waiting time of 4 to 6 weeks - still waiting for a date for surgery .

I have at long last been given an appointment at Northampton on 19/10/2018 .

It is now 13 weeks since being diagnosed with aggressive cancer and still no treatment . How long can anyone wait with this condition ? It is causing both my wife and myself a great deal of stress having to wait for this length of time .

Has anyone else in the community had to wait this length of time for treatment ?

User

Posted 09 Oct 2018 at 16:22

It took me a similar length of time. Diagnosed early May, started treatment mid August. Admittedly in my case that was largely because the scans done for my prostate found kidney cancer too, which necessitated additional tests.

Best of luck with your treatment,

Chris

User

Posted 09 Oct 2018 at 18:51

Hi Pete. We were more or less in the same position as yourself in 2017. Doesn't look like the KGH urology department is in any better a state.

Look on my husband's profile. After his MRI he was sent an appointment for 7 months time ( even although it showed lesions) We had to keep going through PALS to get anywhere but pleased to say once referred to Leicester we had a better experience. I think they still have just the 2 Mr B' s doing the prostectomies there.

Hope you don't have anymore delays now but something needs to be done about KGH as they keep failing their patients.

Regards

Ann

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User

Posted 09 Oct 2018 at 16:22

Best of luck with your treatment,

Chris

User

Posted 09 Oct 2018 at 18:51

Hi Pete. We were more or less in the same position as yourself in 2017. Doesn't look like the KGH urology department is in any better a state.

Hope you don't have anymore delays now but something needs to be done about KGH as they keep failing their patients.

Regards

Ann

User

Posted 14 Oct 2018 at 07:27

I really sorry to hear of the delays you've experienced. Kettering Hospital was named in a report on unacceptable delays in diagnostic image reporting done by the Care Quality Commission (CQC) earlier this year. The CQC has a form on it's website so you can provide feedback that may alert them to significant problems in the system. It might help others if you did that.

It's no consolation but feedback on my mpMRI came after I'd been discharged from the Urology department that commissioned it. I assumed at the discharge consultation that no problem had been seen on MRI, but obviously the Urology team had not even looked at it. It showed an "indeterminate area" in the prostate gland which requires a further TRUS biopsy. More worrying an incidental finding was a lesion in the head of my femur. It took a total of 18.5 weeks for me to receive this feedback.

I've since had a specific femoral MRI that confirms the lesion and I'm having a bone scan and TRUS biopsy this week.

There's an NHS report "Implementing a Prostate Cancer Pathway" from April 2018 which sets out how the course of diagnosis and treatment should go. It seems that management of the pathway is patchy with some areas doing well and others doing abysmally.

You know about PALS so it seems like you're on the case. I've accepted that I have to be the co-ordinator of my own case because at this stage I seem to be the only person who can provide this continuity as I've attended Urology for a little over a year now and have seen a different person every single time.

User

Posted 14 Oct 2018 at 11:36

We can all be wise after the event and so many people go on about the fantastic treatment with short delay they have within the NHS, so good that these people are well satisfied. However, others like yourself have been less fortunate. I suppose men with possible PCa should get an idea of how good a hospital is when discussing referral with their GP and in need be prepared to attend a well regarded one even if it means further travel but it is probably not something men think of or are told at the time.

Hope treatment now goes well.

Barry

User

Posted 14 Oct 2018 at 11:55

I agree it's a good idea to discuss referral choices with the GP because often there's little information to go on. I made my choice based on the hospital A&E I attended when in retention and the fact that coincidentally the hospital had the shortest waiting time for an initial consultation. They gave me a choice of five or six and my GP looked askance when I said which I'd chosen!!

User

Posted 14 Oct 2018 at 12:46

Hi Pete,

Very sorry to read of the tardiness of your diagnosis which should really have been followed up with PSA tests sooner than 12 months after 2016.

In my own case my raised PSA was discovered in November 2017 and my surgery was this June, and that delay was largely due me deciding on what biopsy to have, when and where and which surgeon to carry out the operation, and advice from oncology as to whether surgery was the way to go rather than radiotherapy.
At almost every step of the way, I have had to be pro-active, chasing up results and sweet-talking consultants’ secretaries to arrange appointments.

The end result is I have had very good service from the NHS, apart from no PSA testing from 2010 (2.2) until 2017 (16.7). I trotted off annually with a phlebotomy form ticked ‘Full blood count’ naïvely assuming that included a sample for PSA testing, which of course it did not. A GP also declined a requested DRE whilst I was on his couch in my underpants for something else, with the words “We don’t do that these days”, which was news to the urology department when I was finally referred to them.

If I had been passive and waited for envelopes to arrive from the NHS I shudder to think what the outcome would have been.

The best advice I can give you now is to check out the credentials, experience and outcomes of your surgeon, as this could seriously affect your recovery for years to come. My local surgeon shows results for 184 prostatectomies, whereas the one I ended up with has done over 3000 worldwide, and I couldn’t be more pleased with my result, except if I had been diagnosed much earlier, before my cancer had spread to two out of fourteen lymph nodes removed post-operative, which may affect my lifespan.

I wish you the best of luck.

Cheers, John.

https://www.baus.org.uk/patients/surgical_outcomes/radical_prostatectomy/default.aspx

Edited by member 14 Oct 2018 at 16:47 | Reason: Not specified

User

Posted 14 Oct 2018 at 13:10

I’d just like to echo John and reiterate it’s worth finding out your consultant‘s assistants phone numbers and any other phone numbers and/or emails to push it along. In the vast majority of cases you will find excellent care within the NHS but it’s perhaps wise to not rely on their admin.

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