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User
Posted 12 Apr 2018 at 19:30
My journey with Prostate cancer has been a really roller coaster ride emotionally with much of the stress and anxiety caused by the medical professionals not talking to each other, delays in treatment, inconsistent management of the illness and complications of infections by consultants and surgeon. My post operation PSA test was postponed by 4 weeks on the pretence of having the infections. 4 days before I was to see the surgeon to to get my post op PSA results, through a general phone conversation with the specialist nurse I found out that my PSA test was not done, apparently they hadn’t taken enough blood 16 days earlier which I found frustrating and raised my anxiety leaves even higher. So I had to go and get another blood test. Anyway I went to see the surgeon last Tuesday only for Home to say “obviously I don’t have your PSA results, however from the histology report the operation is a success and you are free of cancer, it had spread but the margins and the lymph nodes showed no sign of cancer. I will see you in a years time, I will send you a letter when I get the PSA result which I am sure will be ok. Get your PSA checked every 4 month” so what I am struggling to get my head around is, they had the histology report 2 weeks after my operation, so if they are using this to tell me I am free of prostate cancer, why wait 12 weeks after my operation to tell me, what is the purpose of the post operation PSA test? Have I been set up For a possible disappointment when the PSA results come. Hopefully not.
User
Posted 16 Apr 2018 at 17:09
Originally Posted by: Online Community Member

You are a Saint, Matron.

Is it really necessary to continually call Lyn “Matron” ?

User
Posted 20 Apr 2018 at 10:17

Well at last the news I have been waiting for, PSA results,under 00.001. Like a million tons off my and my families shoulders. Thank you all for your support which I hope I can return to the group. Onwards and upward🍻🍻

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User
Posted 12 Apr 2018 at 20:23

That's absolutely shocking on three counts:-
1. that the surgeon's ego is so massive that he thinks it is okay to tell you that you are clear of cancer this early - if you get 5 years of undetectable PDA you can start to breathe and you will be officially in remission after 10 years of undetectable PSA
2. that s/he thinks you can get the all clear based purely on the pathology - there are plenty of men on here whose pathology looked great but their post-op PSA said otherwise
3. that s/he has told you to come back in a year and to only have tests 4 monthly - NHS guidelines is 6 weeks post op then 3 monthly for the 1st year then 6 monthly for the next 5 years and annual from then on (assuming all tests are undetectable)

Your GP or the urology nurse should be able to tell you your PSA result. Once you have it you can decide what to do next but you should be able to get 3 monthly PSA tests from the GP practice. If the result comes back as detectable you will be able to ask for an earlier appointment with the urologist and get a referral to an oncologist.

Despite the surgeon's confidence, you need to be aware that the risk of recurrence is much higher with your pathology so this is not a time for taking your eye off the ball. Did he mention the seminal vesicles?

Edited by member 12 Apr 2018 at 20:25  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Apr 2018 at 21:04

Thank you Lyn for your reply, you have confirmed my concerns, I should have challenged the surgeon there and then but I had other issues with my patient care I bought to his attention and my mind was in overload. The sad thing about this is my wife was so happy about hearing I was free of cancer when we walked out of the meeting and the realisation of what he said sent alarm bells off in my head but couldn’t burst her bubble. So I do do want more than ever the PSA results to come back undetectable or my family will be devastated.

User
Posted 12 Apr 2018 at 21:21

I hope that it will be fine for you but some surgeon egos make me so angry. My cousin died age 52 - his surgeon had told him he didn't need any follow up or monitoring because he (the surgeon) was"the best in the business". By the time they realised there was something wrong, it had spread to his liver and lungs and he died within weeks.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Apr 2018 at 04:49

You are a Saint, Matron.

User
Posted 13 Apr 2018 at 08:03
My husband has bloods taken at the hospital his consultant told him that she would have the PSA results within an hour so I don’t see why that hasn’t happened in your case.

I strongly recommend that you contact PALS at your hospital expressing your concerns.

User
Posted 16 Apr 2018 at 17:09
Originally Posted by: Online Community Member

You are a Saint, Matron.

Is it really necessary to continually call Lyn “Matron” ?

User
Posted 16 Apr 2018 at 18:24

Its fine, really - I have been called much worse by angry clients 😕

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Apr 2018 at 20:18
It's an occupational hazard in my job although most folk are fine.😁😁😁😁😁
User
Posted 19 Apr 2018 at 12:53

Just a quick update, rang as agreed for my PSA test results today, they could be found on the system, why am I surprised and upset. I only had my operation on 30th January. Just so exhausted and depressed with it all.

User
Posted 20 Apr 2018 at 10:17

Well at last the news I have been waiting for, PSA results,under 00.001. Like a million tons off my and my families shoulders. Thank you all for your support which I hope I can return to the group. Onwards and upward🍻🍻

 
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