What now - any advice?

However, way back in 2011 when I collapsed with pulmonary embolism following a Hellux Vaglus (bunions to you and me!) operation, I was put on warfarin. After 3 months I informed the hospital I am stopping the course. One lady of fearsome proportions who was dealing with my case was not pleased. She said it was safer to stay on it for life - to which I responded "No way." She scribbled gown on a piece of paper (cos I could not lipread her when she was moving her lips in anger) "You have 22% chance of recurrence of blood clots within 5 years if you stop warfarin now." I wrote back on the same piece of paper "Thank you for being helpful and giving me confidence to stop warfarin. Having 78% chance of not getting it within 5 years is great news." I just walked out. Warfarin interfered with my lifestyle and had to go. My GP was not pleased but it was my choice.

I did raise the question at my meeting on 3rd April whether the cancer will eventually return. He simply said to me to read the pathology report and accept it. If it says all clear, then it is all clear.

I think all the good doctors actually try to be impartial and factual, not giving patients any false sense of hope. The urology doctors in Guildford seem to fit that mould and they have my respect.

I believe that in all reality every person on planet earth has a daily 50-50 chance of living another day, so any suggested percentage greater than this is very welcome (sic)!

I would not read too much into percentages because they are always based on generalisations, not tailored for an individual. Ignore the 37% and think about the 63%, it looks better doesn't it?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 05 Apr 2018 at 09:56  | Reason: Not specified

Allow me to put it the correct way of saying - the tool used to calculate the percentage of recurrence of PCa is a general one. I have not got my prediction in my diagnosis letter and it is a good thing because I am not one who is taking predictions seriously with regard to my part. Anyone can obtain a prediction by going to https://www.mskcc.org/nomograms/prostate, fill in the details and get a percentage prediction. But at the end of the day, it is just that, a prediction.
Some men may feel reassured by the prediction but there are others who will be scared by it. It is my life experience that predictions should not be given unless requested.
Suum Cuique - but this is my approach.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 05 Apr 2018 at 12:51  | Reason: Not specified

Yes it has been shared before, as 2 of the 3 were / are trustees of PCUK. There is also a 4th consultant, Sean Vesey, and they published a paper together - https://onlinelibrary.wiley.com/doi/pdf/10.1002/tre.322

Sadly, John Anderson and Sean Vesey died (in 2013 and 2015) but the other two are alive, kicking, still improving men's health and in Roger's case - tweeting.

www.dailymail.co.uk/health/article-5596559/Would-try-plug-stops-men-going-loo.html

It sounds very helpful and hopefully it won't be too long before it can be made freely available in our country.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

I am 20 weeks post-op and I got my first PSA result this morning. It is <0.1 ug/L. Is this good? There is a note added to the result and it reads:

Age related PSA reference range for Caucasian men PSA reportable lower limit has been reset to 0.1ug/L as of 12/08/2016 from a previous limit of 0.02 ug/L adopted on December 2014, following notification by the assay manufacturer.

Can anyone inform me of my PSA situation as I can't make heads or tails of what the above note is talking about. I am not due to see my urologist until Tuesday 11 July.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 06 Jul 2018 at 10:50  | Reason: Mispelling

Auld Codger,

Thank you for your explanation. "Less than 0.1" sounds very loose and indecisive to me.  How disappointing that we now cannot obtain greater measurement accuracy than the term "less than 0.1." If that is what we get nowadays, oh well then.

Rafael

He who lives, loves and knows what it means to die  - Jiddu Krishnamurti 

Hi Rafael,

What a strange turn up for the books! I presume you did actually have cancer?

But thanks to the ministrations of Da Vinci and his sidekick Professor Whocannotbenamed, you and I, have not got cancer any longer. I have just sent Da Vinci a can of WD40 for Christmas and a bottle of Champagne (to lubricate his sidekick) by way of a thank you.

At least your cancer is gone, so I suppose we could complain about the ‘trauma’ we suffered with our prostatectomy - I know neither of us did in fact, thanks to our brilliant surgeon.

On one hand you might think f*** it, I’m cancer free, but on the other hand the avaricious side of me thinks “do I fancy a fortnight at Sandy Lane in Barbados by way of compo in a medical negligence claim?”

If you were on active surveillance instead of surgery you would most probably have had to have radical treatment at some point later anyway.

So you could do nothing or sue for negligence. I wouldn’t blame you whichever path you choose.

Merry Christmas. Off for a large dose of vitamin sea tomorrow - the Red Sea.

Cheers, John.

Edited by member 13 Dec 2018 at 19:14  | Reason: Not specified

Chris

Chris

I had a look through all my letters and test results, both TRUS and removed prostate gland results. I came across another letter which refers to my pre-op test results and it mentioned my PSA before the operation was 3.8! I recall making a query about it and asked why it was so low compared with the TRUS biopsy results which placed me in stage 3, Gleason 4+3 T2b. The response was that it was unusual but could be a one-off oddity. This recall struck a match for me. The pathology result on my prostate gland  turned out to be T1cN0M0, and the volume of cancer <0.1% and contained within the prostate gland.

I am starting to feel I have been mislead by the initial biopsy diagnosis. But I still have to discipline myself to adopt a wait and see stance until the result of the investigation is made available.

I will just enjoy Christmas with family and friends and may I take this opportunity to wish you all and everyone a very happy Christmas filled with love and warmth with your family and friends. God Bless you all.