It's taken me a while to get round to telling my story but better late than never.
I had a routine blood test over 4 years ago. Everything was OK but my doctor said my PSA was on the high side 4.4...though according to everything I've read, that didn't seem particularly high to me. Anyway she wanted me to do another blood test 6 months later...I think I left it a bit longer...a few more months which could have been a fatal mistake. Anyway the later blood test showed a PSA of 5.5. My doctor said she wanted me to have an investigation at the urology department. This was the euphemistically called digital rectal exam. I believe some men don't like the prospect of this....but if you've ever had a colonoscopy, the DRE is a walk in the park. The exam was done ....samples were taken. I remember saying to the specialist nurse that I'm sure when she was a young girl she didn't forsee spending her days poking a finger up the backsides of middle aged men....and in my case not so middle aged. I think she laughed. She told me I could take someone to the follow up consulatation in 10 days time. I had no idea of the significance of this remark, and attached no importance to it. What I didn't know....and there were many things I didn't know about life and death at that point....was that she could feel immediately that something was wrong. I skipped off home without a care in the world. Ten days later I went to get the results of the biopsy confident in the knowledge that I would be in there for 5 minutes having been told there was nothing wrong with me. It NEVER once entered my mind that the reverse would be the case.The consultant said I had aggressive prostate cancer. He said this cancer had to be treated with the greatest respect and an appointment would be made to discuss the next step...which I will describe when my computer stops making this whirring sound.
When the consultant asked if I had any questions ...I was mute. I only had one and I didn't really want to ask it. 'How long have I got?' seemed a tad over theatrical. Basically the consultant said there were 2 choices. Active surveillance was not one of them. Radiotherapy...involving hormone treatment and 6 days a week driving to the hospital for 6 weeks OR just getting it out. But first an MRI which happened a week or so later. I was fascinated by the MRI and to this day, each time I think I may have created something worthwhile (I'm a composer) I remember Raymond Ramadian who figured out how to see inside the human body by exciting water molecules in human cells by magnetic resonance....and the twenty something guy Michael Minovitch who figured out how to slingshot the Voyager space craft around Mars Jupiter and Saturn. My achievements seem positively pedestrian by comparison. I digress....though I was soon to meet some remarkable people on this journey.
The next appointment was on my birthday at the Macmillan centre to discuss the future. My wife met me there and said I looked like a condemned man sitting in the waiting room. A very bright and bubbly consultant launched into what seemed like a presentation on the virtues of radiotherapy. Why was she not telling me the results of the MRI? I thought that would have been the first topic of conversation. She wasn't being evasive and dismissed my question with wave of her hand saying 'oh...the MRI scan was fine'. So I didn't have it anywhere else...a nice birthday present!
I have to admit to being something of a coward when it comes to being cut open so would have opted for radiotherapy which somehow seemed to be the option that would have kept a bit of me more intact than if I opted for surgery.Having said that....had we still lived in Surrey I would probably have fallen victim to the incompetent urologist at our old local hospital who burned through several mens' rectums. A colostomy bag has no silver lining and my wife who said 'you need to get it out....as quickly as possible'.
Having decided to go for surgery I went to Addenbrookes in Cambridge to meet Mr.Shah and the mysteries of the DaVinci robot. I had no reason to know of the existence of such an incredible machine and was wide eyed with astonishment when he described the procedure. The robot was originally designed for the military whereby a surgeon, who was arguably more indispensable than his patient, could operate from a remote location. Unbelievable!
After a series of tests to make sure I was able to undergo what is quite a grueling operation...5 hours upside down...I was deemed fit...and due to a cancellation by someone who wasn't fit, I was back there less than a week later for the operation.
Through a morphine haze (me ...not the doctor) Mr.Shah told me that the operation was long but successful. I lost a nerve (damn) and the cancer was beginning to come out of the prostate capsule. The histology would reveal all in a week.The catheter redefined the word uncomfortable.They wanted me out of there ...not because they wanted the bed but they wanted me walking about to pass out the debris that was floating around inside me. I peed crimson for a week. The pulling out of the abdominal drain was an experience I hope not to visit again. I was home the next day and sat in the garden room feeling like one of those WWII pilots who were recovering after being shot down by the hun. The weather that week was beautiful...I felt strangely elated. I think the word surreal just about covers it.
My apologies for doing this a couple of years after the event...but I still have school age children and life has been hectic! I consider myself very fortunate when I compare my story to some of those I read on this site. I've had a relatively successful outcome. My PSA has remained low...undetectable at 0.01. I'm just coming up to the 4-year appointment and have my fingers crossed as usual. Continence is something I hardly think about...though I have to say I get a bit of leakage if I sneeze, carry something heavy or even sometimes when a tap is running though I never use pads. The elephant in the room is of course ....sex.
Most of my story so far has been retrospective...so now we're up to date and I'm more than happy to say my PSA is 0.01 as of April 18 2018. 4 years and it's looking good! But I should go back 3 years to my appointment with the ED specialist nurse. I'd read all the statistics about regaining my sexual function. I only lost one nerve in the operation and I kind of supposed that because my sex drive was very strong....that somehow I'd be OK. I don't quite know how I figured that. Well I wasn't OK. The truth is that pre-op at age 60 I was relying more heavily on Viagra to do the job which it did brilliantly. But now that didn't work any more. I tried Cialis and Stendra and all I got was vicious heartburn and a red face. So that's the situation. Be honest about how you were BEFORE surgery and then assume you're going to go a little downhill from there. Sure if you're 50 and manage a strong erection and then keep both nerves, you'll probably be fine with minimal help.
Anyway I went in there with some preconceptions. Firstly there was no way I was ever going to inject myself and whatever she had planned, as far as I was concerned, it wasn't going to include a needle. The first thing she said was 'do you want to try the thing that works?' Well of course I did. She explained the shortcomings (no pun intended) with the vacuum pump and said that 'the thing that works' is injecting with Viridal or Caverject. Gulp! So she did it on what was left of me...no pain. I went home and felt a sensation I hadn't felt for 12 months. Something good. Not quite good enough, but nice. We tried a higher dose at our next appointment. Similar result...slightly better and so on. I mastered the technique pretty quickly and can now do it almost completely painlessly. In fact because the results are so good I wouldn't care even if it did hurt. You get the hang of it (again no pun intended). I ended up using the maximum dose of Viridal which is 40 mcgms. Bingo. Sex is totally different to before. Spontaneity is not one of the hallmarks of this therapy, especially with children still living at home, but the pre-planning that you have to do to make it work, makes it quite an occasion, and you have the nurse's advice to indulge in whatever turns you on to help make it a success. At last an account at Agent Provocateur!
Just getting to the 5 year point when I'll be discharged to the care of the family doctor. Haven't had the last PSA result and perhaps I'm presuming too much when I'm hoping it's still going to be undetectable. Will do the blood test next week...always a tense moment but life is hectic with school age children still at home so I never get a chance to dwell on it. I consider myself very fortunate when I read the nightmares other men have been through. I get very occasional urine leakage...mainly after carrying something heavy...but it's so insignificant it's barely worth mentioning. One interesting discovery is a thing called Uro Stop which is a little loop thing to stop urine leakage during sex. It seems to work by squeezing the urethra...and as far as I can tell...it works. It wasn't a huge problem but leakage does happen....though not any more.Anyone reading this and worrying about their sex life if Viagra doesn't work....get Viridal. A wonder drug!
It's been 5 years since my operation and so I've been signed off from the hospital to the care of my GP. Thankfully my PSA has remained low throughout the 5 years. After reading some of the dreadful experiences some men have had to endure....I consider myself very lucky.I have not, so far, had to undergo radiotherapy or go on a regime of drugs. ED is probably to be expected in one's mid 60's....it would be great if Viagra actually worked like it did before....but the miracle drug Viradal keeps life wonderful. I've spoken to some men who can't stand the idea of injections ....but it's the thing that works. I can do it without feeling any pain whatsoever. If anybody reading this is reluctant to use this method.....take it from me...it's the mutts nuts!
It's been awhile since I updated my story. I guess there was not much to say apart from the fact that my PSA has remained undetectable every year. I will say once again I consider myself fortunate since I didn't have to go through what some other men on this site have endured. My continence is fine though ED has not improved .Viagra & all the others still do not work though I do try them once in a while.The miracle drug is Viridal and it has made life joyous once more! I urge every man to try it...though it seems to be in short supply nowadays. Caverject is the alternative that works just as well.
It's been a while since I updated my story. Next year will be my 10th year of hopefully having undetectable PSA. It's always a tense time but after 9 years my chances are probably good. I always appreciate how lucky I am to have not been through the hormone/radiotherapy scenario...and for those who have been through that, well you have to do whatever it takes to beat this little bastard. I had a robotic prostatectomy 9 years ago and the only real side effect was on my sex life. I only lost one nerve...but I was 60 and had used Viagra for a couple of years....so to think the op was going to improve things would have been a mistake. But and it's a big but....thanks to Viridal and Caverject my sex life is possibly better than before. That may be difficult to believe but it's true. It takes a bit more planning but suits both of us just fine! The downside here in the UK is that Viridal and Caverject have both become difficult to get on the NHS. I'm not sure why this is but since it is possible to buy it from online pharmacies it probably is a purchasing issue with the NHS. I can't complain since they've been supplying it to me for 9 years. I have a tiny bit of urine leakage but only when I lift something heavy or run a tap! I suspect at my age I'm not in the minority! For anyone hesitating about using penile injections....don't waste a second. Get on with it....it works...is painless...and gives you back your sex life. Get a pump as well...use both!
Not much to say really....10 years on from surgery I'm very thankful that my PSA has remained undetectable and I know this is not true for many men in a similar situation to mine. The only thing I would say and I have said it in earlier years is that surgery does not have to be the end of your sex life. Caverject and Viridal are wonder drugs and the slight inconvenience of using them can be discounted bearing in mind the results. I still have minor urine leakage but only when I'm under physical stress!
Tell your friends to get tested. Early detection is everything.
Andy's e-mail address is: andyboy283 AT yahoo.com (replace "AT" with "@")
