PSA

Good Morning Alan (Al985 ) 

I saw your post last night but decided to have a think about my reply - so here goes.

You can't "turn back time" so you need to accept the situation as it is. You don't trust your surgeon, he's got a gatekeeper (his CNS) however you have an appointment with him tomorrow. You don't want this to turn into a "bun fight" so

* Take someone you trust to the meeting.

* Have your list of questions set out in order - remember the surgeon will be ready for you with pre-prepared answers as I think he will be aware of why you are there. (Here's a list of possible questions just in case you miss anything).Questions to ask your healthcare team.

* I assume you want two things out of this meeting.

   a) An answer as to why he went ahead with the surgery when he was aware of the PIN and you were not told of this until later.

   b) What action does he intend to take with your rising PSA.

* Only the surgeon can answer a - but for b - you need a referral to oncology as you are not happy with the rising PSA.

* Prior to the meeting ask if it can be recorded and to be sent a copy of the meeting notes after the meeting.

I hope the above helps, it's easy for me to type my answer, it's your body and you who has to go to the meeting. Try and keep your cool and today think of something positive.

Just a thought but to help with your mental state why not give our Support Line a call on 0808 808 00 00 (8am to 8 pm 7 days a week) They can help. Have you considered a self referral to NHS Talking Therapies through the NHS - you can do this online without going through your GP.

I wish you well tomorrow and hope you have a good meeting with positive results.

Best wishes - Brian.

Hi Ai985

I agree with what Brian has said especially the bit about you can't turn back time.

Also you have to consider that the PSA is still very low and you Def need some more PSA tests to really establish if any cancer is still there.

In a way it's a shame that you are going to see the same surgeon as don't think much to achieve really.

You need to see someone new but probably not a surgeon cos if further treatment necessary then it's probably the Radiotherapy route to go down 

I hope things go ok on Wednesday, try and stay calm.

All the best 

Steve 

As a follow up to Brian’s reply, I think there are some more important facts

1. As Brian suggests, prepare your questions in advance. Print them out and have a copy for yourself, one for the consultant and one for somebody you should choose to take with you as a note take and support for you.

2.If the consultant agrees to refer you to oncology be sure to agree a time scale for this! The consultant might say the referral will go ahead but might otherwise not make it a priority action!

3. You are clearly and understandably anxious and angry. Please control these emotions and talk in a calm, measured, informed but politely assertive manner. ‘Letting rip’ will not achieve anything other than raise everybody’s blood pressure.

4. Do you have evidence that it was certain that it was known that the nerves were involved before the surgery and that this increases the risk of recurrence? If you do - take this with you and also the references to any peer reviewed research that has given you the knowledge about recurrence ( ie academic journals or well respected publications eg from organisations such as prostate cancer uk.

Think of this upcoming convo as a business transaction ! Don’t follow the current American approach - be calm, informed, consistent, have a plan and articulate your desired outcome:)

best of luck and let us know how it goes

Hi Al985 , the others have given great advice. As for the PSA, I can share your concern but realistically this is so low that if there is anything lurking, it is probably too small to detect.  I would try and move to an oncologist, but realistically I don’t think they would do any further tests until the PSA is higher.  The advantage with moving now is that you ditch your surgeon and get someone who can do something if the PSA rises.

Again my sincere thanks to all those who have taken their time to help me through this difficult time. My head is totaly  mashed and I am so angry with the surgeon who patronisingly advised me I had the best option available to me with no thoughts of how the news I received after the op about PIN may affect me. I am sure he is an amazing surgeon but on this occasion he got it wrong. I will take the advice of Milibob and present the two questions he suggested and see what happens from there.

aAl985

If your head is mashed, write everything down, give it a few hours, recorder and revise, and then keep doing that until you have got a series of notes.

Putting anger aside is the hardest thing.

I wish you very well for this.

If you feel that a formal complaint is in order, which appears to be the case, then consult your local healthwatch.

Hi milibob. I am not sure if the surgeon did have the results as I only got the letter from oncology 10 or 12 days after the op. But surely he had  all the results before the op

Hello Alan (Al985 ) 

Gotch ya! In that case why did he perform the surgery when he wasn't in possession of the full facts.

He's not going to get out of this easily.

Keep calm and carry on.

Best wishes - Brian.

Hi.

Sat shaking like a leaf in hospital canteen. This is one hell of a mess, I am with you all the way with this but her indoors said there is nothing to gain from manouvering the surgeon into a corner. However she isng the one who has yo get her head round the fact the surgeon may have made a massive error.

Hello Alan (Al985) 

Keep calm, be nice and remember, you are in the right.

Good luck.

Kind regards - Brian.