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Alfred M lives in Netherlands. He was 48 when he was diagnosed in April, 2009. His initial PSA was 8.60 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

I had had no symptoms and no family history.

I was diagnosed aged 48 in early 2009 as a result of a routine medical when they did assorted blood tests and my PSA came back high. My GP sent me to a uro who did a 12 core biopsy and 2 cores came back positive with a Gleason 6.

I had robotic surgery in Amsterdam aged 49 in July 2009

Gleason was regraded after surgery to 7 (3+4) and I had Seminal Vesicle Invasion.

4 months after surgery my PSA was 0.1 and 8 months after surgery it was 0.4 so I had 66Gy (33 sessions) of SRT (Salvage Radiation Therapy) in the spring of 2010. In the Autumn of 2010 my PSA was "Less than 0.1". In the Autumn of 2012 my PSA was reclassed as "Less than 0.01" as the hospital lab got a more sensitive machine.

I have had little ED. I got a partial erection while the catheter was still in less than a week after surgery. I've had slight problems with leakage of urine during sex.

I had just about reached 100% continence by the time I had to have SRT.

The SRT made my continence worse and in the summer of 2012 I started wearing pads again in the daytime to deal with drips and dribbling. (I use Tena Men Level 2, and use one per day). I am still just about continent and night, but have to get up to pee about 3 or 4 times. Bowel movements also more frequent after SRT and erections less frequent.

I have made a blog about my experiences at http://englishalf.blogspot.nl/ (currently about 40,000 words, plus assorted photos)

I use the name "English Alf" as I'm an Englishman who doesn't live in the UK and my first name is Alf!

UPDATED

November 2013

Had a string of "Less than 0.1" then my lab switched to a new machine and they are now "less than 0.01". So no complaints on the actual cancer side.

Side effects are another story

I have been wearing pads again every day for about a year (Tena level 2). I'm not having floods or anything, but just loads of small dribbles with little or no warning, and they are big enough that they would leave a wet patch on my clothes without a pad. Much easier to get on with life with a pad. About two months ago I did have a flood though, and it was at night, and that was a real nuisance. I have waterproof undersheets and stuff so I did not have to throw away the mattress or anything, but it was a low point, so since then I I have also been wearing a pad at night.

I the day time I am having to pee about once an hour and at night my bladder fills and wakes me up a lot, so I pee quite a few times at night. I doubt I have slept more than 3 hours continuously for four years.

I am also starting to feel like I have a bit of ED, but another problem has been more leaking of urine during sex. I can leak at any time during sex, and even just due to thinking about sex, though I don't seem to leak at orgasm, on the other hand I hardly ever climax. (I feel like I am heading towards an orgasm then everything vanishes and I'm immediately left with the feelings in my penis I used to experience a minute after an orgasm.

And while I can still get an erection I can rarely do so on my own and even with my wife's help it may take over 20 minutes. I am thus losing interest in having sex as it is increasingly unsatisfying: it takes too long to get hard, I pee when I try and then don't have an orgasm. I am though doing my best to see that my wife still has an adequate sex life.

UPDATED

November 2013

Bowel movements also not great. I am often having to go as many as 5 times a day, and occasionally at night. I don't seem to be able to do a "full load" in one go any more. RT docs told be my rectum might suffer collateral damage. This can be a nuisance during the daytime as I like to feel I am never too far away from a WC. Going away requires plenty of advanced planning to find out where there are WCs in towncities I have never been to. (The RADAR scheme in UK is very helpful, I paid to get hold of the key to access disabled toilets and that comes with a book that lists their locations, as well as the location of many other toilets. These toilets are good as they are usually clean and okay for paper soap towels etc. see:http://nks.directenquiries.com/nks/page.aspx?pageid=10&tab=RADAR+Accessible+Toilets&level=1)

UPDATED

December 2014

Another Winter approaches, and I'm amazed that I am more than 5 years on from diagnosis.

It's now four years since my SRT worked and got me down to zero and still in the zero club with my PSA test results at "less than 0.01"

I wear pads day and night (tena 2). Not because I am leaking all the time, but because I have dribbles at unpredictable moments that would leave marks on my clothes without a pad in place.

I thought I was having to pee very frequently at some point during the summer, but when I actually took notes and wrote down when I went it turned out things were okay (it's a good trick to take notes like that).

I even went for four hours on one occasion without needing to pee or having a dribble, so pretty content there.

I can still get erections, but on the other had still have trouble achieving an orgasm and still leak urine most times I have sex. (But leak less if on my back or on my side and thus have to modify how I have sex to make it simpler.)

So it's been more a case of fine tuning than making major changes to my life.

UPDATED

January 2016

No real difference to my side effects in 2015.

When I saw my RT doc in the summer for a regular check-up he said they were going to change to less frequent check-ups. So I will see them every two years now.

The big "news" he gave me was that they now reckon I am cured. He said that six years on from surgery and five years on from Salvage radiation therapy they are pretty sure that there is no cancer left in me, BECAUSE, if there had been any cells left behind then they would have been growing enough since then to now be in the position that they were making PSA at level snttab was detectable. As my PSA is undetectable it thus means I am free.

So trying to enjy life to the full.

UPDATED

February 2017

Told at my last check-up with the urologist that, as my PSA has been undetectable for so long and there's been no significant change in my side effects etc, I no longer need to see the urologist for check-ups and can just get my PSA blood test done via my GP.

Also I only need to get a blood test once a year rather than twice. (Indirect positive side to this is that it will also save time and money).

Alfred's e-mail address is: morrisjtsc@cs.com


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