Mid Treatment and Transferred.

Hello Racketballplayer 

There are about 220 NHS Trusts in the UK. Take off the ambulance and mental health trusts that leaves about 190 - and they all go about their business in their own way.

I agree with you and thought you would be under oncology until possibly a year after treatment has been completed. I am under The Christie in Manchester and the first time my treatment finished (yes not a good sign!!) I was under their care for the next 3 years.

I find GP's are not very well versed in dealing with cancer - my GP is a large group practice and I have to lead at most meetings - they aren't aware HT can lead to increased blood results in type 2 diabetes or weight gain!!

If that's the case I would take management of your journey in hand yourself - make sure you have full access to your test results on the NHS App. Make sure you book your own HT injections and ask for full blood tests not just PSA at least every 6 months.

I hope the above helps.

Best wishes moving forward - Brian.

Many thanks I appreciate your advice.

Regards

Hello Racketballplayer,

I'd echo Brian's (Millibob's) comments.

I was also discharged at a similar point to my GP for ongoing routine PSA blood tests and HT injections. 

I didn't find it particularly satisfactory and, to cut a long story short, when my PSA eventually broke through the 2.0 threshold which should have prompted referral back to onclogy (turned out I had recurrence 8 years after initial treatment) my GP recorded "normal - no action required". 

So my suggestion is make sure you take full ownership of your own health and check results after every blood test to make sure any issue is actioned - don't ever rely on the GP to do it right. 

All the best, Derek.

Hi RBP

This is fairly normal unfortunately but possibly more concerning as your treatment ,HT, is still ongoing 

The most important thing here is the PSA , to keep monitoring regularly and if there are some increases hopefully you can contact the cancer centre for advice .

Although I was discharged from the hospital when my treatment was over they did at least ask for PSa results whenever I had them via the GP.

Anyway hopefully the PSA continues stable and everything ok.

Best wishes 

Steve 

Thanks Derek.

regards

Many thanks and best wishes 

Many thanks Steve. Best wishes.

Hi Racketballplayer

Quite normal to be referred to your GP for ongoing treatment and PSA tests. I had my hormone injections at my surgery before RT. I now have my PSA tests done by one of the nurses at my surgery and the results get sent straight to Oncology at my cancer care hospital in Sheffield electronically. They also appear in my NHS app very quickly. I have had no issues so far.

Good luck 

Sezlez 

Many thanks. As I have been discharged I don’t think oncology are monitoring at all it’s been left to the GP (and me) . Will make further enquiries.

Regards 

Hi RBP

Firstly your not rambling i can completely understand your concerns , its always amazed me that different trusts have different ideas about how patients journey’s differ . I have always thought ,  that depending what type  and how aggressive your cancer is , there is a set plan . That’s obviously not the case . Like most businesses theres the good , average and bad employees . 
Personally I would check to see if this is correct, your PSA is still quite high considering the treatment you have had , GPs will tell you there is nothing to worry about if your PSA is under 4 , they don’t consider whats happened before . Having your HT injections at the GP is one thing being discharged back to your GP is quite another.
I have been under the hospital 5 years mainly due to 2 recurrences, however its my understanding , that if I was still on the curative pathway , the time between PSA tests would increase if the PSA number stayed low , until then the hospital would discharge me back to the GP .

We all can have good and bad experiences, mine was after my biopsy and remember at that stage you are still under investigation, even though my vibe was not great .I went back to the day unit told I had to pass urine before they would let me go , which I did , they gave me a discharge form which i placed in my bag . During train stations i decided to see what was written on the form , first page normal stuff , turned the page and it said at the very top , prostate cancer confirmed, thats how I found out , I’m pretty sure that’s not protocol, no face to face , not even a phone call ,  just written on some form.

Hospitals make mistakes and I’m pretty sure in your case you should still be under the hospital and not the GP, its worth checking, they will probably tell you thats how we do it here , Did you make any RT friends that you are still in contact, if you are ask about their experience.

I wish you all the luck moving Forward 

Tony