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!

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.

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)

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.

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.

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).

Yana update March 2018

Doing an update now, as I've just got the results back from my annual blood tests.

PSA still undetectable.

There would not really be much to add to that, but due to a non-Prostate Cancer related health issue that was also spotted last year I have actually had a very slight improvement in my overall situation.

The blood tests I had done a year ago included testing my cholesterol and sugar levels, and my sugar levels were so high that my GP said I was only a few decimal points away from diabetes.

My GP also reckoned I was too heavy, my weight was 83Kg when I had my surgery in 2009, but was now up to about 90Kg (approx. 89Kg before breakfast and 91Kg in the evenings). I'm just 1.79m tall.

So I set about changing my diet to reduce my cholesterol sugar and weight. And I've done so. My weight is now down to 75Kg before breakfast and 77Kg in the evening. In "old money" I've basically lost two stone.

About six months after my PCa surgery I had had just about no side-effects when it came to ED, incontinence and bowel problems. All I was really bothered about was the fact that even though I could get an erection, my orgasms were had to achieve so very different when they eventually happened, and also always followed by very sharp pain deep inside me where my prostate had been.

Then I had to have SRT, and over the years that followed the side effects gradually got worse. I started to have issues with incontinence that ended up with there being so much dribbling that I had to start wearing a pad day and night. My bowel movements also became very erratic and far more frequent, hardly ever less than 4 per day. As for my sex life, well I was having less trouble with the pain and the orgasms and more trouble with urine squirting out of me at frequent intervals at any point during the "process" of having sex.

The loss of weight over the last year has thus improved things in the following ways. There has been far less dribbling due I guess to not having the weight of the extra bulge of flesh on my belly near my bladder, though the dribbling is still enough that I have to carry on wearing a pad.
The extra fruit, veg and fibre in my diet has vastly improved my bowel movements, in some ways they are almost better than they were before I was diagnosed with PCa!

My sex life still suffers from the unexpected loss of urine, but sex itself is now often better as I am slimmer, and it's also quite satisfying simply to be able to see my penis more easily when I look down when I am naked!

If anyone is interested, the main aspects of my new diet are as follows:

I eat more than I did before. Sounds weird, but I think the crucial thing has been to the success I've had losing weight has been for me to avoid feeling hungry by making sure I feel full. So I fill up with healthy food instead of junk food.

I've been eating almost no sweets, chocolate, cake, or biscuits. (In the past I could easily eat the equivalent of say three Mars bars and three or four biscuits every day)

I've cut back massively on sugar and carbohydrate in general, or altered the way I'm taking it in.

I eat loads more fruit and veg.

Thus, at breakfast I'll have porridge oats with lots of fibre, instead of cereal (and that's oats made with water not milk, but with tasty raisins added). Toast made with wholemeal bread (a high fibre make called Allinson.). I'll also have water instead of fruit juice, but eat a banana as extra.

At lunch it's water instead of juice again, then in place of white bread rolls I now have high-fibre crackers (a variety made by Wasa that is 35% fibre and so much tastier than something like Ryvita!). I'll eat the crackers with low-fat liver pate, and home-made jam (I make loads of jams). I'll also have tomatoes and/or cucumber and eat an apple with low-fat cheese (usually goat's cheese); afterwards I'll have a decent portion of tasty fresh fruit (e.g. raspberries, blueberries, grapes, mango, pineapple, nectarines, pears; it usually depends on what's on offer at the supermarket each week!).

In the evening I'll still basically eat the same food, but if I'm cooking something like curry I'll use less meat, more vegetables like onions and tomatoes and I'll serve it with less rice (and it will be a high fibre brown rice of some sort). Similarly, for Italian meals I'll use more veg and wholemeal pastas, or even replace the pasta altogether and use Courgetti. I now also cook far more meals that involve fish or a completely vegetarian, but which have plenty of herbs and spices to give them flavour.

I eat a lot of things like yoghurt as a dessert, and always preferred thick ones to runny ones, thus I used to eat high fat ones, but I have now switched to thick varieties that are 0% fat such as Greek and Icelandic ones, or Quark, and I now buy unflavoured ones that are thus also sugar-free to which I add fruit or a little bit of my home-made jam.

When it comes to tea and coffee I'm drinking almost exactly the same as before, meaning a take them white with a little semi-skimmed milk, but if I have fresh coffee then I now drink it black.

I'm still drinking wines and beer, but less frequently and drink less of them. That means usually as little one glass (half a pint) of beer a week, and one or two small glasses of wine a week. I've cut out almost all spirits (I had got into the habit of drinking a small scotch or similar in the evenings).

As for "snacks" in between meals I now stick to stuff like dried apricots and prunes and (unsalted) nuts. Instead of biscuits I'll also eat flapjacks, ones made by me that have less sugar and butter in proportion to the oats and which are made tastier by the addition of something like banana, lemon, ginger, or raisins.

I do, however, eat whatever I fancy off the menu in a restaurant, and have enjoyed all the usual food while on holiday and a Christmas without it having been a problem.

All the best

(Thinner) Alfred

I'm just coming up to 10 years since I was diagnosed.

My PSA has been "undetectable" for so long now that I'm not really sure how long it has been like that without looking it up! It must be over 8 years!

I was 48 when I was diagnosed and had surgery not long after my 49th Birthday. At the time I told a friend that I was going to make it to my 50th Birthday no trouble, that there was a very good chance that I'd make it to my 60th, but a slight chance I might not make it to my 70th. Well that view has very much been revised. I now feel like I'm very much on course to make it to my 70th without much trouble (unless something other than PCa kills me). More birthdays beyond that are also planned.

I'm trying to make the most of it by doing things I like as much as possible. Thus I have taken up golf again after not playing since I was a teenager. I still seem to have a swing, and the exertion of hitting a ball has not been a problem for my bladder (but I've limited things to 9 holes for the moment)!

My incontinence has neither got better or worse over the last year. As for ED I have a sense that it is getting harder to get hard enough, but as I did not suffer from ED after surgery or SRT I am not really in the same boat as a lot of guys. The only thing I've changed is that when I find I have an erection, eg in the morning, then I try to use it, which requires a bit more understanding from my wife.

All the best to anyone reading this.

About three years ago after a succession of PSA results of "Less than 0.01" or even "Less than 0.001" via my urologist, they said I was stable enough to just get tested via my GP. Trouble is that the GP's lab does not give a result to a degree of accuracy better than "Less than 0.1", which has always left me wondering. So after getting this year's vague result once more I decided to switch back to going to see my urologist for some more accurtacy, but then Coroan/Covid-19 came along so I did not think it wise to go visiting a hospital for the time being.

I also want to speak to my urologist as in the last year or so I have had a great deal of trouble getting an erection and it goes away in seconds if I do not make a great deal of effort; it also seems to be the case that the pressure on my erectiopn resulting from "insertion" causes it to deflate. I think the time has therefore come to try adding a blue pill to my sex life, so that sex can be about the sex, instead of it being about me concentrating on not losing what erection I still have.

I'm still incontient enough to need to wear a pad 24/7, but the incontinence has not got any worse. (Using Tena level 2)

First time I've genuinely had to include "Erectile Dysfunction" as one of the side effects.

I do not think I have had a "proper" erection at any time during the last year, when there is anything, then it is only about 75%, and it can vanish within seconds if I do not concnetrate. And what I do achieve has not enough to have penetrative sex.

The incontinence has got worse. And that has complicated my sex life too, to the point where my wife and I have not had sex of any kind in the last five to six weeks, though that seems to have more to do with us both being extremely busy and tired.

I still take heart from the fact that I the PCA has not returned, I am very aware that I am alive in the light of recent deaths in my family and circle of friends.

A while back my uro and I agreed that as my PSA had been undetectable for so long I no longer needed to keep coming to the hospital to see a uro and could just do an annual PSA test via my GP to keep an eye on things.

However, by this summer I decided that I needed to go back and see the uro as the side effects were now very obvious, and more importantly affecting me between the ears as well as in my underwear.

I had been leaking loads more urine; had been having to pee very frequently, eg four times at night; I had been almost completely unable to get any sort of erection and have any meaningful sort of sex, and almost every time I did try to do anything sexual urine would really leak from my penis.

I saw the same uro that did my surgery in 2009. He said it sounded like I had all the typical problems that would occur over time for someone who had also had RT. He suggested a few things needed to happen:

1- I should see a physio about pelvic floor muscle exercises,

2- I should have a cystoscopy to check there was nothing wrong inside me like a stricture in the pipework.

3- I should see a sex therapist.

I have still not been to see a physio yet as I have always felt like I have been okay about doing the pelvic floor muscle exercises ever since I was told what to do ten years ago.

The hospital managed to arrange the cystoscopy within a week. I was more than a little apprehensive about having a big fat tube with a camera on it shoved up my penis, but it was actually really fine. No pain, no discomfort whatsoever, and it was quite interesting to be able to follow what was happening on the TV screen. The conclusion from the cystoscopy was that there was nothing physically wrong inside, and I could still squeeze the muscle nice and tight at the bladder neck.

The visit to the sex therapist was a great success (I took my wife along so that she could hear and contribute). I should point out that the hospital I was treated at is a hospital that only treats cancers and it has a department for dealing with any problems cancer patients may have with their sex lives. The lady doctor we saw was thus actually a urologist who additionally specialises in treating sexual problems; she was very easy to talk to and recognised all the issues I was having.

She prescribed Betmiga/mirabegron to help calm my bladder down (50mg once a day), and it seems to be working. I have much less dribbling and far fewer visits to the bathroom, especially at night.

She prescribed Tadalafil (Cialis) 5mg every day for my erection. That has also been working, I have even had several spontaneous nocturnal erections like the old days. And penetrative sex has even been possible a couple of times.

She also recommended using a penis pump to keep plenty of blood flowing through the tissues of my penis to keep it healthy. She even showed my wife and me a video of how to use a pump. She recommended using the pump FIVE times a day for two minutes, but I have not been able to use it anything like as frequently as my day is too busy. (I have the manual sort with a rubber ball on the end, which produces results after squeezing the ball about six times; it has been handy to keep my pubes shaved to get a good seal round the open end of the pump)

And she also said I need to use a nice tight cock ring to stop urine leaking during sex, but I must never leave the ring on for more than 30 minutes. This is a work in progress, as the rings I have been able to buy so far are not quite tight enough.

The sex therapist/uro phoned me yesterday to check up one month on, and she was sufficiently pleased with the results to write me repeat prescriptions for the medications. The plan is to take the Tadalafil once a day for another two months, and then take it as required when I plan to have sex.

I was glad to be able to tell her that I was also feeling a lot better between my ears than I had been in the summer.

Alfred's e-mail address is: morrisjtsc AT cs.com (replace "AT" with "@")