Hi, I’ve just been diagnosed with prostate cancer, Gleason score 4:4, so not the best result. I have enlarged lymph nodes and back pain which makes me think it has metastasised, but of course it might not. It’s taken me a year to get to get from GP consultation to a biopsy, and now I want to get to treatment. I am worried about the lack of urgency to have the next scans, bone scan etc as they say it will take 6 weeks or so and no treatment can be offered until then. I will start looking at private scans to speed up things, but it’s expensive. Anybody else resorted to private scans to speed up access to treatment? Is 6 weeks wait for treatment normal?
Hello NorthWestU
Welcome to the Macmillan Online Prostate Cancer Group, although I am so sorry to find you here.
You clearly have waited more than the 62 days as advised by the National Cancer Pathway - the problem with the NHS is you need to advocate for yourself. In view of the delays my first port of call would be the hospital PALS (Patient Advisory and Liaison Service) and advise them of the delays and see if they can speed things up. If you don't get any joy with them it's the complaints system next.
(going off your user name I am also in the North West of England - I needed a CT scan in May - it was booked and done in less than a week).
As to going private, we have had plenty of Community Members do that, the issue then is getting back to where you were in the NHS system - in a nutshell it's no quicker.
You have your biopsy results - what additional scans have you been told you will need? and don't forget once you have had these there will be a further delay whilst the MDT Meeting work out your best treatment plan.
I hope this helps.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello NorthWestU
So that's 4 more scans/procedures even before a MDT meeting so if they don't pull their finger out it's going to be September before the MDT and October before any treatment starts,
When speaking to anyone about the delays don't forget to mention the delays being outside the Governments Cancer Pathway, the anxiety it's causing and the fact you are a Gleason 8 - quite an aggressive cancer!
As an aside last year we had a couple of Community members living in Wales but had treatment in England because of the backlogs!!
Keep us in the loop as to how you get on.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
