What now - any advice?

The meeting today was very informative and interesting. The pathology report on my prostate gland showed slightly different results from that obtained via MRI and TRUS biopsy. My cancer turned out to be only stage 2, not stage 3 as originally stated. It is T1bN0M0, not T2bN0M0. This is quite interesting and leads me to believe that men who were initially diagnosed should not worry too much when they get higher measurements of cancer than what really is. My initial Gleason scale of 4+3=7 was slight wrong - the pathology report says it is 3+4=7.

Anyway, it is all over now for me (touch wood) and it is time for globetrotting. A lot of people keep telling me to enjoy life as much as one can because no one knows what is round the corner. This puzzled me because I always know that there is a pub around the corner. That is my attitude to life and I do not intend to change it. However, having been diagnosed with prostate cancer made me feel more humble and and recognise the fragility of life. With that in mind, I am donating towards the new cancer centre at the Royal Surrey County Hospital, towards CRUK and towards the Great Ormond Street Hospital for Sick Children. I think they all deserve more than what I got, bearing in mind I was operated on by a truly brilliant surgeon. For him I have nothing but gratitude - and gratitude is the memory of the heart.

When is your operation due?

Rafael

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

Edited by member 03 Apr 2018 at 21:58  | Reason: Not specified

My case was let's get it over and done with as quick as I can as I have holidays booked - Barbados from 14 April, Cyprus in June, Las Vegas in July, Benidorm in September and Barbados again in November. I have left August free for that appointment with the Professor!

Nevertheless I will keep an eye out for your progress.

Cheers

Rafael

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

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 10:56  | 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 13:51  | 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 11:50  | 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.

Thrc Saturday before Christmas I was told I may have prostrate Cancer.  I'm still stunded.  I work at a mall and went to the Santa house and told Santa thanks for the stocking stuffer.  He asked if I liked it.  I asks him whatcis nice about prostrate Cancer and then said why couldn't you of just given me a lump of coal.  Seam like alot of you diagnosed with this cancer at Christmas time.  

In 2016 had biopsy all was benign.  My PSA has been up.  Prostrate has been enlarged.  Since biopsy had like 6 infections and one bout of prostatitis.  Now PSA up again think 7.0 was my last number and no infection.  So Dr. had me get an MRI.  It shows a nodal about 5mm may be cancer.  Dr. is sending me to another Dr Dr Ellis in Seattle WA.  Anyone here know him?  I have an appointment Jan 23 2019.  Talk about this and about my holding pee in my bladder.  Void 325cc but do ultrasound and see 400cc still in.  Did ultrasound of my kidneys and found they are ok.

I'm scared, find myself criing alot at times, I praying but at times feel like G_d is far way. (I'm Jewish so we don't spell out G_d's name as then we can't use it in vain).  I'm also a Christian so I know who my Redeemer is.  I also know that G_d will never leave me or forsake me.  But right now He seams so far away.  Dispare seems right around the corner but I don't want to think of it want it as far away as I can as I have tried to kill myself 3 times in my life.  I don't want to go down that path with this.  I just pray and talk to folks I know about it.  Thats only reason I'm sharing here cause I know others here may gone or going through same thing.  My regular Dr. Wants to put me on depression meds but all of them have a side effect of wanting to kill yourself so why take something that will do that to me.  Each time I try before I was on meds.  No thank you, been there, done that, got the tee shirt to prove it, not really the tee shirt but thats how the sane goes.  LOL

So where do I go from here.

I got back from Barbados to find England cold and damp. On the 31st, I had a PSA blood test (11 months post-op). I got the result this morning and it read <0.1. Strangely in view of the fact that my initial biopsy may have been mixed up with another person, I expected the <0.1 result with utter confidence. I am due to see my urologist at noon on 8 January. Hopefully the result of the investigation will be made known, but if not, then I will have to find out on 30 January when I have an appointment with the other urologist who dealt with my biopsy in the first place.

As for Bollinge's comment that T1 is barely a cancer, I am no expert but I can see that his comment is just a figure of speech. I understand there are two different stagings, clinical and pathologic. I suppose  Bollinge was commenting on the pathologic stage of T1. I am aware that there is no T1 classification for pathologic staging of prostate cancer in many literature available, and yet my laboratory results state that my cancer is pT1c, Grade group 2 (Gleason 3+4=7). This is considered low risk by my urologist.

Regards

Rafael

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

Thanks will look that site up.  And now they have the mri Corazon I think it's called the stuff they put in you arm.  Any how my uraluist said in this report that dr may just look at it and say it's ok.  So I assume (You know what that is right ASSUMING makes a ASS out of U and Me) That maybe they found its not cancer just a tumor.

Edited by moderator 07 Jan 2019 at 01:00  | Reason: Not specified

Rafael

Sorry you have to wait a bit longer to get an update on the 'mix-up'.  Glad your PSA is stable.

Ulsterman

I got a confirmation that the investigation is due to end before the end of this month and they expect the CCG to ratify the report by the end of February. So it is another month's wait.

Regards

Rafael

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

Yes. I went through the biopsy laboratory report all over again and I spotted a discrepancy after all that time.

There is a heading MACROSCOPY which clearly  stated that 19 cores were recorded. Then under the heading MICROSCOPY only 17 cores were recorded. Where have the other two cores disappeared to? I can just laugh at it - it is quite comical. I don't know how I missed that over a year ago.

Regards

Rafael

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

You are right to wait until you get the report.

My heart goes out to you, what a situation to be presented with.

Ian