Treatment time-line your experiences please

Hi Osca

Looks like you've been through it, sorry to hear

Couple of things though , can't see a Gleeson anywhere,  also do u know what the Mri says in order to give a staging, ie hopefully contained within the gland, a couple of important pieces of info and will help u get the best advice

Regards

Steve

Hello Osca2023  Yes I agree with you - there is a delay in your treatment and I think you have grounds for a formal complaint. First off I would contact the hospital PALS (Patient Advisory and Liaison Service) at the hospital. Tell them of your concerns, advise them you are a cancer patient and that the delay in booking your Radiotherapy from September 2023 to April 2024 is causing you acute anxiety.

Whilst your treatment path has been slow - this is the NHS today - and you don't appear to have an aggressive cancer - the HT is keeping it under control - the delay in the RT should not affect you medically - but I can understand your fears.

If PALS can't help, come back to me, I have other arrows in my quiver!

Best wishes - Brian.

Hi Osca2023

Just read your profile and important info is missing: T/N?M? GLEASON?

At this stage you should have the full diagnostic. You also should have an oncologist team and consultant that look after you. The GP and urologist are not the main players in your life now but the oncologist consultant and his team. The hospital should give you all the reports including MRI disc and Bone disc etc. 

On the good note, your PSA is dropping dramatically so the cancer is at bay now.

Best wishes

Dafna

Hi Steve, thanks for your response.

My hospital told me that they don't report Gleeson any more but when pressed I verbally had the figures 3-4 or maybe 4-3 quoted.

MRI & Bone scan confirmed verbally that there is no spread to other parts of the body. I am afraid our hospital trust are very reluctant to provide anything in writing as I assume they are terrified of it backfiring on them. 

Locally they have a reputation being at the level of a snakes belly.

Thanks Brian,

That was my assumption regarding the delay. During my conversation with the radiotherapy secretary I was told that they don't call anyone in my situation until the patient has been on RT for six months but from other conversations with staff there that is variable depending on the direction of the wind!

Thanks for the pointer to PALS I will get on to them, I have been in contact with PALS before regarding a visit to A&E last February which was managed in a totally incompetent manner. That complaint is now eleven months into mission and still not resolved despite being raised right up to the CEO and many department heads.

As you say there is a degree of anxiety but even more annoyance in the totally unprofessional manner in which the management of the trust deal with customers (patients).

Hi Dafna,

I read your reply with interest especially the comment about receiving the reports. Are you being treated by a UK NHS hospital? I ask as such information seems to be beyond anything I have ever heard of here in the wilds of Shropshire.

For Gleeson etc, see my reply to Grundo.

At this point the radiology team tell me that it's nothing to do with them until I have been called for my assessment by them, up to then it is all back to the urology team.

I'll keep you all posted if/when things alter.

Hello Osca2023  Thanks for your reply - I hope you make some progress.

If you are in England (I have a Geography A level) and I understand Shropshire is (but not Wales and Scotland) you can request FULL access to your NHS records on the NHS app - you need to do this at your GP Practice and make sure you ask for FULL access - not what they try and fob you off with.

I have it on my App and get my results etc at the same time they are made available.

Best wishes - Brian.

Hi Osca2023,

Yes my husband is treated in Sussex, we are in Brighton. As Brian millibob says. You should have full access to all your reports and tests. It should all be available for you on-line or the app. For instance, the biopsy report which give you the Gleeson score should be at your disposal. You should find one contact in that trust that should be your focal point and help you with all that. 

I am so sorry for all your troubles. It is not enough that you have PC you have to fight for all this. PAL is very slow and time is of essence so you should find who is your oncologist team and demand your treatment and your paperwork.

Lots of love from Brighton

Dafna

Osca2023,

One more thing. When you met your urologist at the time of the first diagnostic, did you meet the Macmilan nurse which is part of the team? The Macmillan nurses located in the hospital were God send for us. Always on the other side of the phone, helping with anything we need. Do you have contact details of the Macmillan nurses in your hospital? This is very good place to start getting help with organizing everything.

Best wishes

Dafna

Hi Osca

never heard that before, not giving Gleeson in writing, terrible, also not wanting to give in the first place, more terrible.  Gleeson score is essential information.

Some good news though, looks like a low grade affair so time on your side , Just wait for the RT and def potentially curable

Good luck

Steve