? Misinformation used to decide treatment

Hello Al985 . Don't panic is the first thing to say. The main question seems to be how many nerves are involved with the perineural invasion and you will only get an answer once you get the report back from the prostatectomy. The predictive value of PNI is still uncertain on its own and I hope that the attached article helps put it into perspective and a predictor of POSSIBLE biochemical recurrence.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9454778/

For now concentrate on recovery from the surgery. There is a backup plan if necessary which will keep you on the curative pathway.

This has been a hell of a journey.My original operation was cancel because a nurse from the gastroenthology team took the same  as the people that I did it with me now. You are an insignificant allen, and it doesn't matter if we get it wrong.

On this occSion a nurse, who sent me for investigations on my liver but didn't wait for results, labelling me an alcoholic with  stage 4 liver disease.

It took over two years to get that taken from my notes  and in the end the results  were classed  as erroneous. By then my first prostatectomy cancelled while they did further investigations.

This isn't from  different  rom that 

situation.

No again.I will have to go through hell until somebody can clarify exactly what is going on. 

I work for forty eight years as a nurses were sentient society for worse than it, my community could throw at it, i might as well have been a the waste of taking everything but giving nothing.

I cannot get rid of this anger, this should never happen.

The backup plan will further treatment treatment.Now I am not strong enough to manage at the moment 

My specific went for surgery because it would cure me. No further treatment needed.

Now I am facing further investigations and further treatment full stop the incompetents are don't give a d*** attitude is a contributory factor to this.I just need to know what to do

Let's take this one step at a time.

You have recently had surgery but are you clear on the catheter removal and how to deal with the initial possible incontinence?

Has anyone talked to you about your penile health in terms of pelvic floor exercises after the catheter has been removed plus tablets which might be prescribed to help maintain blood flow plus a pump? We can guide you if you want.

The surgeon should tell you how the surgery went, whether you have clear margins, the level of perineural involvement plus any other observations but it will take a little while for the pathologist to supply the report. The fact that you now know that you had PNI does not necessarily mean that you will have to have more treatment - this will be determined by your PSA in the future. After surgery the PSA should be negligible but this is not normally done until just before your next meeting with the surgeon because it takes a little while for it to be cleared out of the blood. You will be monitored with blood tests at regular intervals to ensure that it stays below 0.2. It is only if the PSA starts to rise on 3 consecutive tests or it goes above 0.2 that further investigation will be needed.

You made the decision to have surgery based on incomplete information and feel you have been let down. You have an option to complain and each health authority have their own complaints procedure.

The alternative to surgery would have been radiotherapy and/or a focal therapy plus maybe hormone therapy. These can come with a different set of side effects plus you would have the same risks associated with PNI of an increased risk of future progression but maybe at a lower level.

Hello Al985 

I am so sorry to read of the issues you have faced here, sadly we can't go back so let me try and help:

* We have the support line, yes I know you are angry but they will be able to help. Please do give them a call on 0808 808 00 00 (8am to 8pm 7 days a week).

* Do you have a "Maggie's" near you? This is a cancer support centre where you can call in for a chat and discuss your cancer - or anything else. Link here : "Maggie's"

* Have you contacted your hospital PALS service (Patient Advice and Liaison Service). They will be able to help you progress any complaint and get your treatment plan back on track.

Al985 said:

Now I am not strong enough to manage at the moment 

What can we do to help with this?

As I have been typing this I notice Alwayshope has posted above me. That's a great post. We are trying to help you with the situation moving forward - we can't go back.

Stick with us, we are here for you.

Best wishes - Brian.

Hello Al985, I am finding it hard to understand from this post quite what is happening and where you are with it all this afternoon. 

However, reading your initial posts it seems you think you have been a victim of wrong or incomplete information prompting a wrong decision to have surgery??

 Please note I am not a urology expert but I recall being at a local support group several months ago. The speaker was a urology surgical consultant. He spoke about the difficulties of doing a prostatectomy and then , once 'getting in there' finding that there had been nerve invasion. This then meant that he could try to struggle with an almost impossible task of disentangling the nerves from the tumour. All of this was weighed up with the short term risks to the patient of attempting this (ie 'on the table' for a long while etc) v the risks of long term ED.

that said, we were also told that radiotherapy can 'frazzle the nerves' so much that long term ED is also a possible side effect of that treatment pathway.

I appreciate that a Friday afternoon is the worst possible time to get hold of anybody, anyway to have a sensible conversation. When something upsets us on a Friday, Monday seems too long to have to wait to get hold of somebody. 

If you need to 'talk it out' with others, just post here - somebody will get back to you. the important thing to remember now is that you are not alone in this and we all know what its like to question what the NHS has done, is doing or plans to do with us. 

Finally, if you do wish to make a complaint, it is important to have all the facts etc in a comprehensive form and chronological order. To do this, I suggest you prepare a list of your medical encounters etc so that is ready to use and justify the complaint. This will also clear some 'head space' so that you will feel more in control of the situation, feel that you are doing something positive and taking control - I hope! (It works for me!!!)

I hope you feel better soon

Response to Both Alwayshope and Millibob.

i will start will thanking you both for taking the time to offer me support.

I think the problem may lie with the fact that a letter arrives on my mat which I do not really have the knowledge or at this time, the mental health strength to deal with and I went into immediate panic mode. From a very simplistic approach when I was told the tumour was encapsulated I took that literally so when I got a copy of a letter which mentioned perineural invasion positive, I was majorly confused and my brain just lost all perspective. If patients are to be given a choice to make they need all the information required to do this in one place and at one time. Having received this letter well after my surgery my concerns are that the surgeon may not have been aware and therefore was not able to give me the full facts on which to make the decision. It may well be that perineural invasion positives has no effect on the decision to be made but I was not given a choice in the matter. 

I suppose the question I am asking is  should I have been given this information before I chose my treatment route, and if so by whom?

Hi Worriedwife. I chose surgery because I was told that there was no EPE, I don’t know the exact words but this along with the information that that tumour was fully encapsulated,  in my simplistic interpretation of things it equated to prostate surgery, prostate gone, tumour gone, no spread. There was no mention of perineural invasion either with the consultant at the inititial hospital which carried out the investigations, nor during  the surgeon consultation during which I explained I wanted the cancer out of my body and lastly with the oncologists where I again explained my rational for surgery. At what point will this information  have been anvailable  and is my limited research which identifies it as a pointer towards more aggressive tumours outside the prostate barking up the wrong tree.

It will never be about a complaint, we  are all human after all,  but making sure if I have been given insufficient advice to make the right choice for me initially that I am given  the right information going forwards to rectify this.

Al985