Waiting times and treatment

Hi Rosiejane - yes, he will have to wait until he’s had all scans before starting hormone therapy.  They need no shrinkage so they have a better chance of seeing where the cancer is.  However, once you go to the hospital for the scan, ask them for the hormone therapy to start immediately.  As a Gleason 9, he is almost certain to go that route.

They will give him bicalutamide tablets as a precursor to the hormone therapy jabs.  Once he starts on the tablets / jabs, all the pressure is off. They will then plan the radiotherapy.    AW

Once the decision was made for me, I collected the tablets on the way out of the hospital!  Read my bio: if he’s Gleason 9, you may want to consider brachytherapy boost.  Click on the snowy scene.  I think you will both find it reassuring.  I’m pretty sure that, if they initially thought surgery would be best, that he is still on a curative pathway.  I would also go for full pelvic radiotherapy to make sure all cancer is dealt with.  Cure rates are good.   AW

Hello Rosiejane 

A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here.

The Cancer Pathway is 14 days from GP to first meeting and 62 days thereafter to start treatment.

Sadly in this day and age you need to advocate for yourself.  i agree with Alpine Wanderer he's no doubt going to go down the HT/RT route so you really could do with an oncology appointment. I would be in touch with the hospital pushing for the appointment telling them you are available for any late cancellation.

if that doesn't work the next step is the hospital PALS service (Patient Advisory and Liaison Service or PASS if you are in Scotland). You need to tell them he's a Gleason 9 so an aggressive cancer and the lack of appointment is causing anxiety.

I hope this works for you - do let us know how you get on.

Best wishes - Brian.

Sounds like a very similar path to mine have a look at my profile, my treatment is all done but still on HT but great PSA result! Take all you can get it Will do the job as I was told the day of my diagnosis Best Wishes David.

Another brachytherapy boost success story.  AW

Yes, good idea from Millibob - ask for any cancellation appointment for oncology.  The fact that prostatectomy seems to be off the cards (referral back to your own county), means highly likely to be oncology route.  Can’t see why you need to see another urologist.   AW

I have already asked this question to the Sp Nurse and she said we are seeing the urologist who referred us to another county?  I thought we would be seeing an oncologist? 
And yes I have asked for all appointments that we can take a cancellation 

Hello Rosiejane 

Time to ask PALS to get things moving with oncology. If they can't do anything then time for the formal complaints to kick in.

Sadly you need to keep pushing - as my CNS said "in the NHS he who shouts loudest gets".

Best wishes - Brian.

Brian my understanding of the conversation with the nurse is that we will discuss what they said at the MDT and the PET scan results and then prescriptions will be sent to GP and we will start treatment, ??

If they’re already mentioning prescriptions, it will be for bicalutamide tablets.  I would call them and ask if you can go to the hospital pharmacy to pick them up today.    AW