Oncology monitoring

Hi Skeptic 

I haven't seen anyone since my RT finished in 2017. Telephone conversation only mainly to do with PSA.

Think this is fairly normal.

PSA checks are the most important thing after treatment is over if you are on HT or not.

How long are u on HT for?

Regards

Steve 

Good Morning Skeptic

I start my RT next week so that's something to look forward to!  During my "journey" I had an interesting conversation with my dedicated urology nurse and in her own words - "Brian - in the NHS he who pushes and asks the most gets what they want". Since then I have been proactive and asked and chased anything I have needed - I suggest you stick a note in your diary and request a PSA test from your GP every 6 months - don't wait on them contacting you.

Kind Regards - Brian.

hi Grundo.

20 sessions of RT March to April 2022; bicaltamide hrt tablets Dec 2021 to May 2022 & monthly prostap injections Jan to May 2022.

Never seen Oncologist or team since diagnosis by Urologist in Jan 2021,only 3 monthly telephone consults.GP tells me to talk to Oncology team whenever symptoms or concerns arise.

Telephone call from oncologist late yesterday afternoon telling me he has discharged me to GP care (God help me!).When I expressed concern he gave usual "lack of resources" explanation but admitted he & other cancer doctors are very concerned over lack of what he termed "surviver specialists in NHS"

Hi,

I don't usually comment on other sufferers treatment as we are all individuals and what's good for one may not be for someone else.

FYI I have monitored my PC for about 12 years had a psa 21 ish never changing much.  Have a Gleason of 3+4..

I am now half way through RT after 3 lots of HT.  I wanted to avoid surgery at all cost but didn't want to rush into anything. I am 73 years old. Many of us will die with PC not from PC.

So I asked for a second opinion in June..  You are entitled to one and the GP can't refuse.  After seeing the surgeon and oncologist again I decided now was the time to have the treatment.

My advise to anyone would be to take control of the process.  Get as much info as possible and then decide what is best for you.  Remember all doctors what to do something. They want to treat  not wait.  I was advised by a surgeon to have my prostrate out 12 years ago.  Well I have had 12 years of good health by waiting. 12 years of no side effects etc.

I not sure where in the UK you are.  You are entitled to a face to face.  I hope may experience may be of use to you.

Goof Luck

Take care

So your HT finished about 6 months ago.

I dont't think they would have discharged u if they were still concerned.

Do u have your PSA readings since  before u started treatment?

Steve

First PSA readings leading to investigation  5.4.;rising to 8 following biopsies; falling back to 6 before RT & HRT.Now at 0.01.

My concern is that access to GP service  is so restricted & performance so poor that I may be left hanging.It is certainly not the level of support promised in all the literature provided by the NHS & cancer charities.

Good Evening

Our GP Practice will give face to face appointments out but you have to either ring on the day at 8.00am or go in person and queue at 8.00am. I have had no issues in booking appointments and I always mention to the receptionist that I am a cancer patient, even if it's not about PC!! As I said before in this day and age he who asks gets.

Once you are in to see our GP's they are not bad but sometimes you need to "guide" them as they appear to be out of their depth with things like the reaction to HT and Type 2 diabetes.

Take Care and Best Wishes for 2023.

Brian.

I just used my GP to gain access to PSa testing, nothing else.

Your PSA is great especially now that you've been off HT for a while .

So PSa test every 3 or 6 months , only start being concerned if it rises again for 2 or 3 consecutive tests.

You can always give the cancer centre a ring if u have a major concern.

At the moment you have nothing to worry about.

Don't forget all of us having had the treatment has a PSA rise worry  in the back of our minds 

Good luck

Steve 

Hello Skeptic. My understanding ( and I may be wrong!) is that you remain officially under the care of the urologists after RT? 
that said, you should be able to arrange your own appointments to have your blood checked for PSA with your gp. If you have downloaded the nhs app onto your mobile phone or tablet you can then check your PSA results. This will give you ( hopefully) peace of mind but , if you have concerns you should be able to speak to urology or to your gp?

I add question marks because we haven’t got there yet . It will be interesting to hear how this works out so we know what to expect!

re your dissatisfaction with your GP - that is another matter but it is something  we are all experiencing. Why not write to your GP or the practice manager expressing your concerns and asking for clarification. If you don’t get a reply within a reasonable time then complain.

 like Millibob, I have learned this last few months that the only way you can get the care you deserve is to be very politely assertive and not take ‘no’ for an answer. I just keep going higher up the chain of command now until somebody says yes! I know I must be ‘black marked’ as ‘Trouble’ but I don’t care so long as my husband gets the care he needs. I am exhausted with the fighting for every appointment! 

best of luck!