THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.

Was told about this site by my lovely lady.

A real bolt from the blue and shock. Prostate cancer is something that happens to old men. I felt ripped off!

I am now nine weeks post surgery and coming to terms with the whole thing. Nerve sparing operation was successful (they assure me) so I am waiting for things to come alive again. [There is a view that it might be better to be proactive than waiting for developments - see Use It Or Lose It] Am getting better with the continence issue, but still got a little way to go there.

Pre-op I was in denial, sure that something must have gone wrong in the diagnosis on the inside and brave on the outside. Not a smart strategy. I held the person I love at arms length, not wanting to hurt her. In being so brave and heroic I did just that - hurt her. I am now trying to repair that damage and work towards a new future.

The medical stuff. 5% cancer all contained in the prostate. No further cancer treatment planned at this stage (but this has raised another small procedure that I need to get done). Gleason score ended up 3 + 4. PSA levels down to 0.1 and hoping it stays that way.

Willing to talk to anyone.

I am now eleven weeks post surgery. Have finally got continence sorted over the last two weeks. A friend made me a timer that plays a tune every hour. That reminded me to exercise the pelvic floor muscles. I kept forgetting as so busy at work. The timer was a great idea and improvement was very quick. Have now switched my attention to erectile function.

Saw story on this web site about using Viagra to stimulate function. Spoke to my doctor and was referred to a sex therapist about it. Am now trialling Viagra, Cialis and Levitra in stages to see which is best. So far have tried the Viagra. No immediate effect however I suspect some activity is starting.

Biggest issue for me so far was depression. I was very badly affected and pushed the woman I love away. It wasn't me talking. I hope to explain that to her and hopefully get another chance as we had a great relationship up to that point.

If you get this disease DO NOT STOP TALKING TO THOSE CLOSE TO YOU. It is very destructive. I can handle the fact I got cancer. I can handle the physical effects, especially as they appear to be returning to normality. I can't handle the fact I hurt the person closest to me. The lady I love.

I am now 4 months post op. PSA levels are below measurable so that is good. I believe the cancer is gone.

I joined a local prostate cancer support group. It is good also but I am the youngest member by far and so many of the experiences and feelings are different. I also went on a mild antidepressant which has helped lift the black feeling I was having and smoothed my emotions out.

Have gone onto Selenium and a good multivitamin just to supplement my diet and make sure I am getting vital nutrients.

Erectile function has still not returned. I had some success with Cialis, but since I am not in a relationship it is difficult getting much happening. Had 1/2 erections twice a couple of months ago. Levitra had no effect except to give me really bad headaches.

I have fairly good control on the continence now. Am using ladies light flow pads for the odd bit of leakage that happens and I am hopeful I will get total control in the future.

Had an operation last week to deal with 2 side effects of the original surgery.

1. I had to have a Bladder Neck Incision (BNI) as the healing of the urethra was blocking flow. Effects started about 8 weeks ago and got steadily worse, until I couldn't empty the bladder fully and it took up to 10 minutes to wee. Since the operation, the flow is back to normal.
2. I had to have a circumcision. The foreskin had always been prone to tearing but with the continence problems the skin went to pieces. I kept tearing and becoming very tight. Dr's advised that eventually it would close the end of the penis off, so it had to be removed. Bit of a shock as I was quite attached to it :-) I am recovering but the area really aches.

I was told not to have sex for at least 3 weeks. Bit of a laugh considering everything (ED, single, bruised, sore etc). I believe I have beaten this disease.

Now I have to adjust to a different lifestyle. Will have to see how different.

What an interesting year it has been since my last entry.

I started injections to get erectile function going again. Was great to finally see the old thing working again. Was a mix of 2 drugs injected into the shaft and 10-15 mins later I found out what is meant by the term "a woody". Never seen it so hard. Five and a half hours later down it went.

Have had all sorts of adventures with it. With the same dose sometimes it goes up and down in about 30mins other times its hours and hospital visits. After 6 hrs it aches (you should be at the hospital about here), after 9 it hurts like hell after 12 you want to cut it off. The hospital staff are always great and caring.

I am using Papavine (or something like that) [close but no prize ....actually Papaverine] now. Have come to grips with stabbing myself, but still adjusting dosage levels.

The pills don't work for me (except to give me terrible headaches that last for days). Function is returning naturally but I don't have control over it. A bit like being a teenage boy again. It goes up and down at odd times of its own accord, but is dead when I want to use it for real. I think it is performance anxiety killing it then. I think it will come right eventually, but expect to use needles for the foreseeable future.

Last check the cancer is still gone and PSA levels below measurable limits.

Last Christmas I had an operation to insert an Advance sling. It loops through the pelvis and sits under the bladder to give support and allow continence. For the first four months it was wonderful. No pads and total control, however in the last two months I have had the odd leak, especially when coughing (winter colds) or the bladder is getting full. Still no need for pads and I am a lot better off than before the operation, I just need to adjust to the change a bit.

Having the sling was the best thing that could happen for my self confidence. I felt better about myself and my mindset changed. I am a lot happier now.

The change in mindset has allowed me to take the move to change jobs, Don't know what I am going to do, but I leave my job at the end of this week. The adventure continues.......

Thanks to all the people who have emailed me with support and/or questions. It is great to know there are others out there who read and find value in our shared experiences.

It is almost 18 months since I last updated my story and what an interesting period it has been.

I left my job of 8 1/2 years June last year and shifted to Christchurch (New Zealand) before the start of the devastating earthquakes. My last PSA test results prior to leaving were still zero, the Advance sling was working well and erectile function was intermittantly returning.

I am now 3 1/4 years post cancer operation and 2 years post Advance sling insertion. PSA results are still below measurable limits. The sling is working ok. It is not perfect but I wouldn't be without it. When I am tired I leak. Occasionaly bad enough it shows on my pants (very embarrasing) but I have learnt the warning signs and go to the toilet more frequently. I have had a couple of accidents in bed. That does my head in as you feel like a kid again. Suz is great about it though. It helps to have her understanding and support.

Erectile function is still getting to me. Sometimes it gets really hard naturally but when I go use it we get a flat and no action. It is definitely in my head but we haven't been able to crack that nut yet. We do what we can with what we have got and I still inject every so often so we can enjoy some time without having to worry about how long we have got. I look forward to the day I don't need it anymore but in the meantime I accept things as they are. Injecting doesn't bother me any more and I haven't had any trips to the hospital for over 18 months.

There is an art to getting the doseage right. To little and it doesn't last. I have a doseage band I work with that seems to do the trick. From a cost perspective it is way cheaper than the pills which still don't work for me and still give me headaches. We don't have sex as often as we once did. I worry about what effect injecting has on Suz. It is a real dampener having to stop during foreplay and inject and I worry about what that does to her perception of how in to it I am. Talking about this is very important and I wonder if we do enough, but I believe we will be ok and in the end things will sort out. [Prostate cancer is often said the be a 'man's disease' and whilst the disease itself affects only men, the effects of the disease, physical and psychological affect men's partners, sometimes severely. Some women find comfort amongst the links on the Resources for Women page.]

Having this page is excellent. It is very good to have somewhere to let it all out in a frank manner. I have met a few men in the last couple of years who are going through their own battles. It has been great to point them to this site and my story. The feedback I have had from a couple has made the effort worthwhile. I am a lucky man and to everyone best wishes going forward. The fight continues.

I am still clear of cancer which is great. Very occasionally I leak whilst sleeping. It is gutting but I do what I can to avoid it and it is rare. The sling works well and I still practice my pelvic floor exercises to kept things as tight as I can.

Erectile function has returned but longevity is hit and miss. It is not physical. I have lost confidence in myself and have to get my headspace right. It is hard to build confidence again as each time I fail it re-enforces feelings of failure. I will get there though.

Last November I did Movember again. This time I sent an email to everyone at work with the link to my story. Got some good feedback and great support for the cause, but I did get a couple of funny looks and comments. It was worth it though for spreading the message.

You can beat this.

It is now 6 years since I was diagnosed, started treatment and my life changed.

Last PSA check was below measureable levels so I'm still clear and erectile function is back. Still not as reliable or long lasting as pre operation but I believe that is a confidence thing.

The sling works well. It has been in over 5 years and made a huge difference in my life. I still have issues when I get tired or have a cold but during the average day I don't think about it. Problems mainly show up at the end of the day. Still shatters me when I leak though. I'm 50 and worry about how bad it will get as I get older.

I do miss how life used to be and sometimes I wish I hadn't been diagnosed. I get growled if I say anything and I know it is not helpful or sane to feel that way, but it happens. Please don't miss understand me, treatment was appropriate but I still grieve occasionally.

Overall life is good. I survived.

Seven years have gone very quickly. I haven't had a PSA test in the last year but after years of nil reading I am not too concerned.

The sling is still workuing well. When it was put in I was told it should last at least 5 years (that was all the history he had for them then) which is now up. Fingers crossed it keeps going well. If that failed I would be shattered.

I have shared my story with many over the years. It stuns me how many men choose to ignore even advanced symptoms. I understand it is scary but knowing allows informed choices as opposed to fear of the unknown.

Colin's e-mail address is: oldozifriend AT hotmail.co.nz (replace "AT" with "@")

NOTE: Colin has not updated his story for more than 15 months, so you may not receive any response from him.