Early recurrence progress.

Hi Al985 thank you for your honesty. As many people on here know, I urge everyone to think very carefully about going down the surgery route.  I’m not saying it’s the wrong route, all I’m saying is do your research and study - a great depth - the probability of side effects and the probability of cure / long term remission.  Histology is king, but your age, fitness and long term aspirations all make up an important part of your decision making process.  AW

I totally agree suegeey needs to be researched very carefully. My husband is living with his decision regret after surgery and it’s had a major impact on our marriag

Hi there A1985,

there are many similarities in our experience of surgery for PC that should have been easily treatable failing to work at all leaving us with having to have further treatment and additional damage and QoL issues that should have been avoided which is a real downer.

You say you met several people who had failed surgery by the same surgeon.

Did they get any honest explanation of what went wrong?

Has anyone else on here had an explanation?

There seem to be so many of us where something went wrong along the way that should not have done that I think it would be useful to compare notes to see if there is some common theme that could be raised with the hospitals we were treated at to prevent others having the same awful experience.

Good luck with your salvage treatment.

Bert

I did not get an explanation just the arrogant paternalistic monster telling me I was unlucky and that not reading the biopsy until 10 months after the op was not relevant to my recurrence. Well it was relevant to me. I raised the issue with my gp that it took another 3 months to write what was an attempt to deceive the gp. The gp just shook his head and said shocking.

I wonder if anyone has had any success getting their surgeon to give a proper explanation and can give us advice on how they went about it?

I would like to enquire to find out what went wrong with my treatment.

There is a formal complaints procedure here:

https://www.england.nhs.uk/contact-us/feedback-and-complaints/complaint/

You can identify where you believe you are in the process and go straight to the Ombudsman if appropriate. Your MP’s help can be good.

You can also apply for copies of your medical record. There is a guide about how to do it here:

https://ico.org.uk/for-the-public/getting-copies-of-your-information-subject-access-request/?search=right+of+access

If you have heard stories of other people having problems then the more complaints the better.

The system moves exceedingly slowly, but it does move.

Hello Alan (Al985 ) 

You know my opinion of your surgeon and the advice that should be given to people undergoing surgery so I will leave it there.

I am pleased to see you have confidence in one member of staff and the Radiotherapy is going well. Look on the bright side that you are being treated and all this along with the Hormone Therapy should "right the wrong".

You need to complete you treatment and move on for your own mental health - you need to look after yourself.

Best wishes - Brian.