I have been on the Watchful waiting regime for a couple of years. Test every six months then a phone clinic. Psa last time slightly rising to 8.5. It is always very stressful waiting for the numbers. My urologist decided that I should now have a test every 3 months and only have the "clinic" call if my Psa went over 10.2. I was happy with that but i still wanted my result. I had a test a month ago and as I haven't heard anything I assume that the result was below 10.2. I have tried to explain in the past that the wait for the result is the worst thing. It was ok when I had a Macmillan nurse that i could ring, she would tell me immediately but last time I rang urology there is no longer a Macmillan nurse and I was given a lecture from urology saying if they had to ring everyone with their result, they wouldn't do anything else. So now I am in a worse position. All they have to do is to email me the number. There is a definite lack of understanding , Prostate cancer and its progress is measured by a number, just give me the number.
Hello Robin (Robin2381).
They are your medical test results - you are entitled to them and would be available to the medical staff - surely if you telephone and ask for them, it's easy enough to be given them.
I am under The Christie in Manchester where I understand they have around 6000 "prostate clients". We have a service called PEASS - Prostate Easy Access Self Service. Once you are enrolled.
* You are e-mailed when your PSA test is due with a link to book it - you also get a medical question form to complete about your health.
* You book your blood test somewhere local - mine is a hospice just a mile away.
* The day following the blood test you are e-mailed with your results and if action is needed you get a telephone call.
* You have two cancer nurses who are named and their telephone number - you can call Monday to Friday with any issues you have.
It's a great system and I understand it's being rolled out to other hospitals.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello Everyone
I just thought I would nip back onto this thread as there is a difference between Active Surveillance and Watchful Waiting - the differences can be found here:
Active-surveillance and Watchful Waiting.
I hope this helps.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
