Waiting Times/delays

User

Posted 16 Mar 2025 at 09:19

Hi all,

A lovely bright spring morning!

Was given my biopsy results Friday before last by my nominated CNS. I was given my diagnosis at same time and we “decided” that preferred treatment is RP.

Advised it would be sometime in April for meeting with consultant surgeon and oncologist. Thereafter 8 - 10 weeks for RP to be done. No suggestion of HT and cannot have RT as have IBD.

This seems to be a pretty long timescale to me. Especially so as I now understand that my bilateral Pca with PNI makes me high risk.

The CNS did ask me several times if I have Private Health cover and even gave me the names of Consultant surgeons and hospitals in the area that could support.

We live in the Essex area.

Has anyone else had same the recent experience? I’m struggling enough with the waiting and they have now hit me with a 3-4 week wait for a PSMA PET-CT scan to add to the mix which feels like it is about to tip me over the top!

User

Posted 16 Mar 2025 at 13:41

We are in Essex, and have found waiting times difficult, not helped by the near impossibility from the beginning to get a response from CNS.

April isn’t far away now, hopefully you will see a surgeon and oncologist in the next few weeks and they might reassure you that the waits will not affect the outcome.

It’s such a shame the NHS is struggling, I, wondering whether recent high profile cases have lead to a bubble of men getting tested.

User

Posted 16 Mar 2025 at 14:11

Thank you Turkey2222,

It was mentioned to us as well that some of the delay was due to the high profile case you mention. Had to fight hard to get the biopsy done and it was only as a result of Mid Essex trust getting some extra resource that freed up spaces.

I do hope that your journey isn’t impacted too badly either. Good luck to you in this uncertain time.

User

Posted 16 Mar 2025 at 19:08

Hi golfnut

I was diagnosed with Bilateral disease with PNI also, with cribriform pattern 4 which is a subtype aggressive cancer, that was back in August 2024 and still not started my RT but been on ADT for 5 months. So your wait for April treatment is tremendous. My initial PSA was 25.9 back in July 2024 so 10 months before RT which is scheduled for start of next week, for 20 sessions over 4 weeks.

I had to request a PSMA PET CT SCAN because they don't do them as standard in UK and are definitely needed for spotting spread of cancer

Good luck

User

Posted 16 Mar 2025 at 20:33

Thank you DaveR61,

That certainly puts it into perspective.

There doesn’t appear to be a consistent approach in any of this. My hospital appears to do 24 biopsy cores as normal plus extra target cores, whereas, I see some on here only having 12 or fewer.

When I questioned the hospital about the need for the PSMA Pet-CT scan they said it was normal procedure “in most cases”. I think I was still reeling from having been told only 3 days earlier that my PCa is non aggressive to the hospital then telling me I need a whole body scan but nothing more.

How long did it take for the PSMA test results to come back for you and how were the results delivered?

I’m still yet to talk to a Doctor/consulatant and, as mentioned by Turkey2222, it’s almost impossible to get through to the CNS team.

Good luck with your journey too!

User

Posted 16 Mar 2025 at 21:00

You can't usefully compare RP with RT in terms of waiting time in norman times. During the height of the Covid Pandemic because of prolonged waiting for surgery, some men were started on HT as a sort of holding operation. It might still happen but if so very rarely. So we are now back to the pre Covid situation where generally men just have to wait to reach the top of a Surgeon's list, although advanced cases should be given priority. With RT, this is nearly always preceeded by HT which is generally started soon after the treatment plan has been determined. The patient therefore starts treatment quite quickly. It has been found that in most cases 6 months of HT is helpful because it tends to shrink tumours and make subsequent RT more effective. The 6 month period of HT prior to RT might be shortened or lengthened depending on circumstances, (It was 8 months in my case). Going back some years, it was quite norman for a consultant to want to keep a patient on HT until he reached a certain PSA level before administering RT. This seems to be less often the case nowadays.

Barry

User

Posted 16 Mar 2025 at 21:41

Thank you Old Barry for your comprehensive reply.

A most interesting profile too. May I also ask if the Prof E you refer to is related to the “Garden of E”?

User

Posted 17 Mar 2025 at 19:06

Hi there, I was told last Feb that I had an aggressive PCA (Gleason 4+4) waited 10 weeks until i had the RALP. Unfortunately had to wait 11 weeks for a follow up with the consultant / surgeon only to be told the cancer was still present. Since then i have been having hormone injections and have only just this week been given a date for Radiotherapy. (11 months on from the surgery) My advice would be to not stop pestering them, as you are very lucky if anyone ever responds to your calls. (as Turkey2222 alluded to)

Hope all goes well

User

Posted 17 Mar 2025 at 19:25

Thank you Pete,

Sorry to hear that you are having to have further treatment. I hope it goes well when it does start.

I see we are both in Essex and appear to be being given similar timelines as I’m one month away from meeting with the consultant (date received today) and then advised RALP time 8 - 10 weeks from that meeting. This seems a very long delay to me!

Were you offered a PSMA scan ahead of the surgery?

Once again fingers crossed for you.

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