Prostate Cancer Treatment Experience

Hello Coltrane, I think your profile should be sent to your hospital trust! It brilliantly describes the anxieties caused by poor hospital communications! My husband sent a similar report into ‘the powers that be’. He only received an acknowledgement and a statement that they would pursue the matter! The professionals might know what they plan to do but surely a bit of communication with the patient is part of the care they should be offering!  Onwards and upwards!

Hello Coltrane  Thanks for such a detailed profile. I don't think you are being unreasonable, but we have all been there!  I had to wait over 10 months for a TURP operation which delayed my Radiotherapy by 8 months!

There are two occasions on my journey where I could have made a formal complaint (one very serious) and twice consultants have asked me if I wanted to complain about the delays - on reflection I didn't. Two reasons as to why I didn't are that my wife is a nurse and has worked in A and E and I know the pressure they are under and the second reason is that I am still here writing this - without the prompt action at the start of my journey I may well not be here today!

The main issue I have is the lack of being told what was happening and when - I don't suffer anxiety and am a very patient patient - but for many my journey too would have been a nightmare!

We are the "lucky ones" - we have a diagnosis and are in the system and receiving treatment - think of all those suffering, yet to be diagnosed, waiting to join the over burdened - under funded - over stretched NHS.

Kind Regards - Brian.

Hi Coltrane .

I can fully empathise that any wait is stressful. Your HT will now have the cancer in hibernation and the radiotherapy should kill it. Just to reassure you, Chemotherapy is normally reserved for those with a non curative prostate cancer diagnosis and as you are not on this journey then hopefully it will not be necessary. All the best for your RT in May which is only just over 3 weeks away.

Hello Coltrane, after my R. T. finished I had severe issues with my bowels, espcially bleeding and urgency. I had to wait 8 months following referal despite repeated calls to enquire what was happening. It appears the norm now in the health service, the long waits, that is. Finally got the treatment to control the bleeding but parts of that was a farce with me having to keep on top of things. The damage to the bowel lining following R. T. is now something I have to manage. I don't think you are being unreasonable in the least. I know others on here who have to constantly push for things to happen.

Regards, Graham. 

Thanks Worried Wife. I appreciate this.

I agree. I do consider myself to be lucky. I could have been sitting here with advanced metastatic prostate cancer (apart from peeing I had no real symptoms) and its not just the waiting - its the not knowing. I’m not criticising individuals, although the experience with the oncologist could easily have been avoided, I know how hard they work. And i know about the lack of resources (staffing and equipment). My main issue is with the poor communications. 

I agree about the Communications. It would be great if they told you how long the wait for something was, what number you are on the list and an approximate date for the appointment. I am sure the NHS should be able to do this and that would cure anxiety - but hey like you said - why bother communicating with us?

Best wishes - Brian.

Radiology told me that I’m down  for May (didn’t say where i was in the list) but won’t give me a date. They said I’d get a pre-RT appointment in April (its the 6th today). I’m not pushing, I’d just like a date. There’s a family issue which is causing a problem. If we had a date we could make plans. Its frustrating. I’m not pushing and not in a hurry (my PSA is down to 0.3). Its not the waiting as such  -  it’s waiting for a date so we can organise things. I find the booking system to be very frustrating.  Maybe I’m just being selfish. I understand the pressures on the NHS but they don’t seem to realise that patients have other issues. 

Hi Coltrane  If your "planning Scan" is anything like mine you will not only receive your 3 tattoo's (thanks NHS!) you should be given a schedule showing all your individual radiotherapy dates and times.

My team were amazing and were willing to change any times I was unable to attend, however I am lucky as the hospital is a mile away - no parking problems and I was able to walk or go by bus.

best wishes - Brian.

Hi Coltrane, my experience was similar to Brian.  After my planning day, I was given a complete schedule for all 37 sessions.  It is annoying not knowing when you start the process but personally I wouldn’t be worried if I was starting again.  Firstly, your PSA is now down, so there isn’t any mad panic, a few weeks/months isn’t going to change anything.   Secondly, you are still in the queue, so wait until you get your appointment then it is much easier to reschedule if it clashes with something else.  I am sure they will understand.  My experience was that the radiographers have seen it all before and were brilliant at helping me out.  Good luck.  David