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Follow Up or lack of.

User
Posted 03 Nov 2019 at 11:57

I was diagnosed (PC) in Nov 2018 and received excellent service having HT stated followed by RT that finished in March. Six weeks later a week after a blood test the Oncologist told me my PSA was down to 0.06 and I was to be handed back to the local Urology Dept. She also gave  me the forms for a further blood test in October. I was expecting to get an appointment that month or possibly in November but heard nothing. I rang several times and spoke to the answer phonethensnt e-mails and they resulted in two missed calls while I was out so I pressed on and had the test anyway. 4 Days later I had a letter from the Doctors asking me to book another test in a months time which made me panic a little. On ringing I was told my Potassium level was high and everything else was OK PSA was down to 0.04 and I wondered if the follow up was a few minutes chat with the GP's receptionist. I've since rung again but I'm beginning  to think my treatment is finished. I do feel it;s a little poor that no one has contacted me as results and waiting for them can be a worrying time. Or is this normal follow up? 

User
Posted 03 Nov 2019 at 22:58
I would ask the GP to look back at the handover letters from the oncologist when your RT was completed. The letter should set out whether you were to be monitored by urology or the GP. It may be that once they had tried to contact you a couple of times, they closed your file, in which case the GP will have to re-refer you. At this stage in your treatment, you should still be being seen by the hospital, even if only once a year and even if the appointment is with the clinical nurse specialist rather than a urologist ... don't let them fob you off.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Nov 2019 at 15:51
The urology dept seeing (hopefully) your good PSA result might due to more urgent appointments could off pushed you down the queue rather than forgot you.

If you were being referred back to GP to monitor PSA with normally a cut of point to go back to consultant (mine is 2) you should have been informed. Again perhaps the urologist would have done that?

Yes poor comms is frustrating but the good news is PSA is at a good level.

Whilst under hospital I was told to wait for appointment until having blood test.

Ray

User
Posted 03 Nov 2019 at 17:18
Are you still having ht ? Yes it’s frustrating comms I had to wait 10 days for my psa results but like you very low 0.01 so blood tests every 6 months . So back of mind and trying to enjoy life even thou still getting some side effects .
User
Posted 04 Nov 2019 at 10:49
Hi Andrew, I'm sure the Oncologist said at my last appointment at the Hospital where I was treated that I was now classed as in remission and would be handed back to the Urology Dept at my local Hospital. But as suggested by LynEyre if I get no contact from them I'll contact my GP but if he is monitoring my PSA he could have let me Know the results. I have the the feeling I might be between the two of them. My HT was prescribed by the Hospital Urology Dept. As you so so long as it goes in the right direction I don't mind who monitors it.

Many thanks

Regards Reg

User
Posted 06 Nov 2019 at 18:19
Hi All, Last night tried one last email and actually received a reply today saying that it was down to my local hospital to conduct the follow up also telling me they are happy with results but should have had an appointment September or October and thanks for bringing it to their attention and an appointment will be made and further Blood Tests will be 6 monthly. So all well that ends well.

Thanks all for your advice.

Best regards Reg

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User
Posted 03 Nov 2019 at 15:51
The urology dept seeing (hopefully) your good PSA result might due to more urgent appointments could off pushed you down the queue rather than forgot you.

If you were being referred back to GP to monitor PSA with normally a cut of point to go back to consultant (mine is 2) you should have been informed. Again perhaps the urologist would have done that?

Yes poor comms is frustrating but the good news is PSA is at a good level.

Whilst under hospital I was told to wait for appointment until having blood test.

Ray

User
Posted 03 Nov 2019 at 16:07
Thanks Ray. Ithink you're probably right and I was pleased with the PSA result and I think the only course is wait and see.As i say the Oncologist told I'd be with my local Hospital and have the Blood Test in October and as with most things medical I just do what I'm told (bit like being at home really).

User
Posted 03 Nov 2019 at 17:18
Are you still having ht ? Yes it’s frustrating comms I had to wait 10 days for my psa results but like you very low 0.01 so blood tests every 6 months . So back of mind and trying to enjoy life even thou still getting some side effects .
User
Posted 03 Nov 2019 at 21:11
Hi Malcolm. Yes still on HT. Thinking back they were very slow to give me the result of the bone scan I had to wait nearly a month but after that they moved with great speed. I think the side effects of HT can be quite traumatic at least that's what I found at first but as you say just got to carry on and hope it's all worth it! Thanks for the reply.

Reg

User
Posted 03 Nov 2019 at 22:58
I would ask the GP to look back at the handover letters from the oncologist when your RT was completed. The letter should set out whether you were to be monitored by urology or the GP. It may be that once they had tried to contact you a couple of times, they closed your file, in which case the GP will have to re-refer you. At this stage in your treatment, you should still be being seen by the hospital, even if only once a year and even if the appointment is with the clinical nurse specialist rather than a urologist ... don't let them fob you off.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Nov 2019 at 10:49
Hi Andrew, I'm sure the Oncologist said at my last appointment at the Hospital where I was treated that I was now classed as in remission and would be handed back to the Urology Dept at my local Hospital. But as suggested by LynEyre if I get no contact from them I'll contact my GP but if he is monitoring my PSA he could have let me Know the results. I have the the feeling I might be between the two of them. My HT was prescribed by the Hospital Urology Dept. As you so so long as it goes in the right direction I don't mind who monitors it.

Many thanks

Regards Reg

User
Posted 06 Nov 2019 at 18:19
Hi All, Last night tried one last email and actually received a reply today saying that it was down to my local hospital to conduct the follow up also telling me they are happy with results but should have had an appointment September or October and thanks for bringing it to their attention and an appointment will be made and further Blood Tests will be 6 monthly. So all well that ends well.

Thanks all for your advice.

Best regards Reg

 
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