I wrote a thread a month or back on feeling abandoned by Oncology and having been discharged and referred back to my GP for monitoring.
My latest PSA reading has come just now at 1.2 from 1.7. 3 months post radiotherapy and now 11 months into 24 of Decapeptyl. PSA on diagnosis was 134. My GP texted me just now to say that my testosterone at 0.7 was very low!!. I asked for this test to have a marker for effectiveness of the ADT but it seems a surprise to my surgery that it is low!! I may be being unkind but the testosterone text has made me feel more so that I need to take hold of my own monitoring.
I have a feeling of disappointment and anxiety that my PSA isn’t lower I don’t know whether my result is as expected or not. The GP didn’t even mention my PSA result which i have been anxious for I used the NHS App.
I also (other than this forum ) don’t know who to contact. I have no oncologist or specialists Nurse having been discharged and my GP surgery doesn’t seem to know about basic ADT side effects Blood tests issues or PSA readings.
I think I have just written the above to get things of my chest. I may ring one of MacMillan team.
Thanks for reading this.
Best wishes Richard
Hello Richard (Racketballplaye)
Thank you for your post. Let me say at the outset, I am not medically trained and this is my understanding of "stuff" having been here for over 4 years.
* The NHS App - if you are in England get the NHS app and once you have it, request full access to your medical records. Once you have this you can check your results. (at one point my GP wrote on my eGFR (Kidney function) "Acceptable for this patient" - well it wasn't acceptable to me - and I sorted out the problem with the pharmacist.
* My GP Practice know virtually nothing of Hormone Therapy. They do give me my Decapeptyl injections under a "shared agreement" with my oncologist.
* Is your GP Practice up to speed that Decapeptyl should be listed under the "high risk monitoring scheme?" and I quote
"High risk drug monitoring ensures the safety of the patients prescribed medications with a narrow therapeutic index. It requires routine blood tests, clinical reviews and dosage adjustments to prevent toxicity. This is coordinated between hospital specialists and the GP Practice with a shared care agreement"
Now I have seen a copy my shared care agreement as my GP has a copy of it on my notes.
* I am not being funny but your original PSA was 134 - now it's down to 1.2 that's good and your testosterone is down to 0.7 that's good too. The thing with that original high PSA is that like me - you have a chance that after 24 months - your PSA will start to rise again. You should in my opinion still be under oncology just in case.
My oncology team state:
"After active treatment ends you are considered in remission. This typically happens once you have completed a personalised follow up programme - usually about 5 years after your last active treatment when we will discharge you back to your GP".
Something is very wrong here - I think you need to raise your voice first with your GP - if you get no help there then the hospital PALS Office (Patient Advice and Liaison Office). If that fails it's a formal complaint.
To me you should still be under oncology (G P = General Practice NOT cancer specialist).
I hope the above helps - if I can do anything to help please do get back to me.
Best wishes - Brian.
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