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Tell us about when you were diagnosed - diagnosis

User
Posted 20 Dec 2015 at 12:25

I visited my GP to instigate an investigation into an ongoing knee problem.....

I was about to leave, and casually mentioned if there was such a thing as an 'MOT' for blokes like me who hardly ever visited him.

He arranged for numerous blood tests to be carried out, one of which was a PSA level check at my request..

The PSA reading came back as 9.86....the rest is recorded here on my profile.

Ironically, given my family history ( dad died of PCA at 55 years of age ) I had requested a PSA test two years earlier.

On that occasion he  talked me out of a test at that time.... Partly my fault as I should have insisted, but you assume that the GP knows best don't you?..... 
If I had the knowledge and info that I've accumulated since, I would have challenged him..... I've since changed my GP as I have no longer any confidence in him for a number of reasons...

So no thanks to him that my PCa was still contained when I was diagnosed.

Edited by member 20 Dec 2015 at 12:28  | Reason: Not specified

User
Posted 15 Jan 2016 at 14:15

Don't know if you are still collecting data guys and I have put up a post about my diagnosis in the "welcome" section but here are some thoughts.

I was asymptomatic. I never had to get up at night (unless I had been to the pub lol!), reasonable flow and apart from some frequency early in the morning (say from 9 am to about 11 am when I might go 3 times) nothing had really changed over the years or not significantly so. My impetus to get myself checked out was family history. Dad died of Pca in 1971 at 57. I had a PSA test in 2011 (it was normal but, foolishly, I didn't ask for my actual score). In 2013 my older brother was diagnosed with Pca having had difficulties with really weak stream. He put off going because he basically didn't want to know but my sister in law prevailed in the end. His PSA was 14 and his Gleason score was 9.

Given that family history I regarded it as a racing certainty that I would get Pca or even already have it. My family history meant there was a one in two chance. I admit I did put off getting a second test done. I had always wanted to go on a cruise (which we did in September last year) and I didn't want anything as inconvenient as Pca getting in the way. It was a frivolous attitude but because I was convinced I was going to get the disease I didn't really care that much.

So I went for a PSA test in late October. The surgery rang me within 3 days I think asking me to come in. My GP said my PSA was 7.2 and, in view of that he would refer me to a urologist. The rest, as they say, is history. I was diagnosed last month with a Gleason score of 7 (4+3) and stage T2b.

Now they say a cancer diagnosis comes as a shock. In my case it didn't come as a shock. I was certain in my own mind that I would get this disease. It did come as a blow however and there is a subtle difference here.

Another thing was my life long fear of cancer. Like many, despite expecting to get it, I have been terrified of Cancer all my adult life. My Dad had a terrible time in the months before he died. I also saw my sister-in-law die at age 39 of breast cancer and her physical and mental suffering was awful, truly awful as she left 2 young sons behind.

Now I have a variant of the disease and I can't explain this but I do not feel any fear of the disease. Obviously treatment has come on in leaps and bounds so that is a factor. I am 67 so have had the greater part of my life - that's another factor. I have been diagnosed at an early stage - yet another factor as is the fact that my older brother has been through the thing and come out the other side in good shape.

My fear is all around the treatment. I ruled out surgery because I didn't think I could face the unacceptably high risk of urinary incontinence but I am hearing horror stories about radiotherapy and fecal incontinence and/or rectal urgency.

As regards the effect on my wife and my children (both adults 35 and 37 respectively) they have been greatly encouraged by the favourable stats for getting a grip of this disease at the stage I am at and, more recently, by the very recent news that my brother was told by his oncologist after his latest PSA test that he was "90% certain the disease has gone."

But, for me, the fear of side effects dominate my thinking. I am not afraid of the disease or death but I might struggle to cope with fecal incontinence.

User
Posted 15 Jan 2016 at 17:24
My Oh saw a doctor about something else and mentioned increasing nocturnal visits, the doctor decided to do a PSA test. He was 61. We got a non urgent call to attend an appointment with no idea what it might be about. He went alone and was told his PSA was 25 but not to worry as it was probably BPH. An appointment with a urologist followed, by which time I had googled PSA 25 and had a pretty clear idea that it was cancer. Well what I actually found was if PSA was more than 10 there was a 50% chance of cancer.

The urologist did a DRE and immediately said that the prostate was hard, so we knew if was cancer. Then came the bone scan and MRIs and then another appointment where were were told that there were lesions in the bone and lymph and told to speak to the specialist nurse and to be positive. Th specialist nurse was on holiday so it was two weeks before we saw her and got the picture. g10 was the scariest bit.

Our first oncology appointment involved an ignorant pig who took two calls from his wife while telling us our full diagnosis. He gave us the two years prognosis. Luckily I found this site and what a help it has been. I've learnt so much that I simply had no idea about previously.

We have been extraordinarily lucky, 5 years on life is ok, no chemo yet or any other the new drugs. Some bad times yes, but lots of good ones too.

Devonmaid.

 
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