Should I be concerned about these timescales?

Hello Dedalus

sorry to hear about the delays and your obvious and well- founded anxiety.

government targets are that from the day of your GP referral for suspected cancer you should be seen by a specialist team within 2 weeks. The target from first day of referral to first day of first treatment ( known as RTT referral to treatment) is 62 days.

Most hospital trusts are struggling to meet these targets because of industrial action.

what we found was that we had to be politely assertive throughout the whole pathway - chasing up appointments and letting each department know that we were prepared to take last minute cancelled appointment slots.

We also contacted our trust patient advice ( information) and liaison service ( PILS or Pals depending on title used). We found them very helpful . They also gave me the direct line to the urology service manager’s team so I could talk directly to people doing the appointment booking

re time being lost - yes you are losing a lot of time ( more than I would be happy with if I had a prostate) but it is important to remember that most prostate cancers grow slowly.  I kicked off ( politely!) when my husbands appointment for getting his scan result was postponed from 6 weeks ( longer than normally acceptable but to accommodate our holiday) for another 3 months. Getting through the treacle of hospital bureaucracy and coping with the stress was so exhausting and probably one of the worst times of my life. We ended up making a formal complaint. 

I hope this gives you some options to speed things up for yourself and wish you all the best

He Dedalus

Worriedwife has hit the nail on the head there. I can only re-echo her comments regarding being proactive in chasing up appointments. All the while it's worth remembering as WW said most cases of PC grow slowly.

I am aware that there is a history of cancer in your family and it may well speed thing up if you do contact the hospital confirming this fact and the anxiety it's causing.

Best wishes - Brian.

Watch this video

https://www.youtube.com/watch?v=aotF2SPzCmU&list=PL4enluvHTUCnaORXgPuMocBCkD01b3JyK&index=54

Taken me a while to work out how to include the video.

Rob

Have a look at our profile to see our timescales earlier this year. My husband had his tests all done on the NHS and then we paid private for the results. As the treatment was going to be no better continuing privately we opted to go back to the NHS. 

Sorry pressed the button before I had finished. I do think we disappeared into a hole when between private and NHS and I felt I was constantly then chasing to get a date for the pet scan. Urology had discharged him to oncology but we had to wait for oncology to pick him up and that he where he seemed to get lost. Finally after getting on my soap box and mentioning pals things moved at a super speed. Also say that you are prepared to go on any cancellation lists.

Thanks to all for your comments.

They will explain that it is a supply/demand issue.  Unfortunately, they are therefore not meeting their targets for various reasons.   Both they and the patients are now cognisant and accepting of this.  It has become the new norm.  As I have experienced in another situation, you can also be accused of trying to 'queue jump' when you express legitimate concerns over delays. 

I previously looked at all your profiles and have gleaned some tips from them.  Thanks for that.  I already used your one WW, to indicate my immediate availability if there was an MRI cancelation.  

Thank you for the link to that interesting video, Sandberg.  I was aware that PCa can be slow growing and console myself to a small extent with that fact.  However, the video says much the same as was in the PROTECT report, i.e. that you have time to make decisions and not rush.   I find this a difficult one to digest and accept, and query how they can say that.  Not one of us knows when the clock started ticking.  It could be 6 hours or 1 minute from midnight.  In my own case, for example:   From the ct scan it was determined there was 'something' detectable in my prostate.  How long has it been growing?  Is it about to leave the capsule?  This is the crucial point that concerns all of us.  If the PCa is contained within the capsule then there is a chance of a cure.  Once it is out of the capsule it is a different ball game and more significant treatment strategies are required.

Shar your experience between NHS and private is my concern.  It is the coordination issues that could result in just as much delay in treatment.

BW

D

We also discovered that at the time only 2 hospitals were doing a private pet scan and both a huge distance from us. Also no quicker to get it done privately 

Try not to panic about the time too much. When we saw the oncologist and he said husband would have chemo we said yes straight away but he wouldn't accept the decision on the day as he wanted us to go away and think about it. I was not happy and told him it was an unnecessary delay as there was no option, but he wouldn't budge and reminded us that it is a slow growing cancer even though it had spread. 

WE also enquired about 'going private' for biopsy and for bone scan. Both were going to be a longer wait than NHS and, obviously very costly. Importantly, too, when we were asking about having the biopsy privately we were told we would have to pay for an initial consultation etc - even though the consultant works at the private hospital and the same NHS hospital urology department we were using!!!!

The late cancellation worked really well for us although I think my non-stop tears at the time could have also helped? I don't know!!!

I looked into a private pet scan and it said from £1,600. We paid £250 to see the consultant privately and then it would have been a further £250 to see him for the results. He is the same consultant that we see now on the nhs.