I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Not all treated the same !!

User
Posted 20 Apr 2016 at 13:40
Hello all,it is a while since I last wrote on this forum, but I have been reading the posts regularly.

To recap I was diagnosed in June 2015 Gleason 3+3 PSA 9.4 .Following MRI in November and a second biopsy I am now Gleason 3+4,PSA 9.7 and on active surveillance. Due for another PSA blood test soon.

However since reading a lot of the posts on this site it does occur to me that many appear to have been given much more information about their Pca than I have,such as location in the prostate etc.

All I was told was my Gleason score no spread outside the prostate and OK to continue on AS.

I did ask my uro oncology nurse practitioner if I could get my diagnosis in writing but nothing has been forthcoming.

The hospital I go to is the big one in Plymouth (don't know if I am supposed to say the name) but I have found that when you go to get results etc they have already decided what you will be doing before you get there and they just present the results and off you go.

Does any one else have similar experiences or is it just me being touchy because it is coming up to PSA time again.

User
Posted 20 Apr 2016 at 15:08

Hi Perki

The hospital must be writing to your GP each time they do anything or get any results so the easiest solution is probably to make an appointment with the GP, ask him/her to go through it with you and print off a copy of the consultant's letter for you to keep.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Apr 2016 at 15:09
I was lucky and able to go private (work provided insurance)...

Someone else will correct me if I am wrong.. but I believe that you should be provided with written results and then offered the range of treatments available and then it is for you to choose the route that you want to go.

AS is not for everyone and after a short while on it I decided to have Open RP. If suitable for your particular case, I think that you should be offered a full range of treatments for you to choose from.

User
Posted 20 Apr 2016 at 16:52

Hi, Perkij.
I agree with Lyn and KRO.
You should really receive all their letters about you that the service sends to your GP unless you have asked not to be sent them. On top of that you can ask for copies of the results/reports of tests and scans, etc.
Good luck with the forthcoming PSA result.
Henry

User
Posted 20 Apr 2016 at 19:14

I found that if I didn't ask, I was told just the bare minimum.

I'm not sure why they do this, but appreciate that some may not want to know all the fine detail?

This forum provided me with a lot of info, so I was able to ask most of the 'right questions'

Also I'm copied into all correspondence between consultant and GP.

I did have to ask for a copy of the biopsy report and also post op histology, but had no problem in getting them sent on to me from the out of area hospital who dealt with my surgery.

Luther



User
Posted 20 Apr 2016 at 20:44

KRO, the point is that Perki sees only a nurse when he attends each appointment and in January said he was happy to go along with AS until after a big holiday planned for this June. The fact that his Gleason has now risen from 6 to 7 means though that this next appointment needs to cover some proper discussion about treatment options so they are in place for after the holiday.

Perki, ask the GP to go through the results with you and then when you go for your next hospital appointment, if you only see the nurse tell him/her that you would like to see the doctor this time as well. AS stops being a good choice if the disease progresses and nobody does anything.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Apr 2016 at 21:52

You can ask to receive copies of all correspondence between the treating hospital and your GP on a permanent basis so you are kept fully informed of your situation and progress.

Barry
User
Posted 21 Apr 2016 at 21:51
Hi do you have to pay to receive all your results etc and can you just go to go and ask them. I spoke to secretary at hospital and she said need to pay plus need form witnessed then gt to be approved by consultant then I need to specify the exact things I want to see seems so long winded just to get access to my results. I was also told I get free prescriptions now but I'm still paying as they ask for exemption certificate anyone shed any light on how I go about this.

Thanks

Andrew

User
Posted 21 Apr 2016 at 22:25

Hi Barney
They should actually have a form at your local GP which you fill in , requesting free prescriptions based on prostate cancer. This will be put in front of your GP to sign who will look at your notes then sign it. You will then receive in the post a credit-card sized exemption certificate which lasts 5 yrs. I've only had to show it to my regular pharmacist once per year.
Chris

User
Posted 21 Apr 2016 at 22:34

Barney, when the secretary gave you this information it sounds like she might have thought you were asking for access to your medical records under Subject Access rights (data protection). Next time you see the consultant - or you could phone your nurse specialist if you have one - just ask them to copy you into any GP letters they send.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Apr 2016 at 22:35

GP surgery will have the form for exemption from prescription charges on the grounds of having cancer. This is known as 'medical exemption'. You fill out your bit of the form, then the GP signs a bit and it can be sent off. All treatments for cancer or for the effects of treatment are included.
With regards results: you can ask to see you medical records (not that you should need to go through that process), so there is no question of charging. The information is yours,being about you!
The only possible exception is if someone has decided that you lack capacity and that it is not in you best interests to see the results. But that won't apply to you - that is when you have lost you faculties.
Another exception is for them to put something like a scan on a CD: there is a charge, but that is for the CD,not for the information.
Your local patient advice and liaison service (pals) can help you with getting your hospital results.
Good luck!
Henry

User
Posted 21 Apr 2016 at 23:24

Acquiring information about your treatment tends to work best if you make a direct request, at the start of each meeting, for a copy of any relevant information derived from that hospital visit (this might be done verbally, speaking to the health professional- alternatively there may have been something in the paperwork you received early on from the consultant,  to the effect that 'if you would like to receive...x, then tick this box').

Requesting info' this way, it's a simple matter for the admin staff at the hospital to just cc (add your name) to the relevant people who are sent a printed copy of that meetings' plan or test results.

By contrast, when people ask for information retrospectively, it adds another layer of administrative difficulty when hard pressed hospital staff have to search for the info' and gain clearance to give it out.   Not everything is computerised  and different health professionals may use different computer systems that don't talk to each other.  Your medical notes may be simply hand written  in a big cardboard folder  which contains everything and is stashed away in medical records until the next phase of things. Make no mistake, it's not always about people deliberately keeping information from you. This is often the reason why hospitals may charge an admin fee for information retrieval- someone in the hospital has to do the leg work to find that info'- and it is the NHS, you haven't paid for extra admin. There's generally a form to fill in relating to the Freedom of Information Act as well.

It would be a very expensive and wasteful thing to do if every patient received every bit of information regarding their treatment- and in many cases ( at the risk of sounding patronising) may provoke undue anxiety and misinterpretation by the patient /and family.

Having said all this, I had my treatment at a hospital which prides itself on its' level of engagement with informed consent. There were notices: ' Please ask if you would like a copy of all the correspondence which we send to your GP'. Well, I did ask, but so far, all I have had was a PSA test result . I know the GP has had histology results, etc, etc. I will have to challenge them at the next visit regarding their failed promises.

User
Posted 22 Apr 2016 at 21:41

Thanks everyone for all your advice.
Today I saw my GP and he gave my the results from my MRI and subsequent biopsy.
He also gave me the letter from the consultant which came with it.
It made interesting reading.
So now I am to have a PSA test next week before another phone consultation with my nurse specialist.
If my PSA has risen I think it may be time to seriously consider having some treatment.
Watch this space.

Edited by member 22 Apr 2016 at 22:25  | Reason: Not specified

User
Posted 23 Apr 2016 at 16:00

Hi ,

If your oncologist , and more importantly you , decide to have a procedure be careful.

In my case I was offered EBRT or a prostectomy only. It transpired that this was the only treatment that the hospital offered and if I had not carried out any research I would have accepted one or the other.

In the end I had low dose seed brachytherapy at another hospital and have been very pleased with the results/side effects.

User
Posted 23 Apr 2016 at 16:30

Thanks banjoman,
My local hospital offers all treatments I believe.
However I have already been told that because my prostate is very large I will not be suitable for Brachytherapy, but Radiotherapy, Hormone Therapy and Surgery including Da Vinci are all an option.
I have not yet made a choice .

 
Forum Jump  
©2024 Prostate Cancer UK