I was first alerted to the possibility of a prostate problem back in 2003 when my (new) doctor enquired as to when I had last had a prostate check. I guessed that it was at least 10 years prior, so I was soon up on the table undergoing that digital rectal examination that all us squeamish men dread. The verdict was that the prostate was enlarged but otherwise felt ok. However a PSA test was scheduled with a 4.1 ng/ml result. Evidently with was not considered good for a 57 year old so I was packed off to see a Urologist.
Another finger test: ?feels ok but we should do a biopsy?. I was a bit shocked and left in a bit of a daze. In the following days I did a lot of research and, perhaps with a touch of denial, decided that I was not ready to be subjected to a biopsy and its possible side effects. My reading suggested that the PSA test was useful but far from foolproof and as a result too many unnecessary biopsies were performed. This was quite a stressful time with restless three-in-the-morning anxiety. I decided on another PSA a few months down the track. Result 3.6 ng/ml , not great but below the magic 4.00 ng/ml. Over the next two years my PSA results bounced around before taking a couple of swift leaps to 6.00 ng/ml then 8.10 ng/ml. I also had the Free PSA results reported as a cross check. Watchful waiting time was over.
During this period a small cancer had been detected in a kidney which I had removed via keyhole surgery. The surgeon did a brilliant job which saw me out of hospital in 48 hours and back running within a week. The same urologist was now consulted about the PSA. This time there was no avoiding the biopsy, about which I had heard some horror stories. So in November 2005 in fear and trepidation I had a biopsy; ten samples take. Under a local anaesthetic the procedure was only slightly uncomfortable. I was not surprised at the results, two of the ten samples were positive with a Gleeson score 3+3=6 . The good news was that this is low grade, detected early.
Prior to biopsy I was told of possible side effects including blood in the urine and/or semen and possible bowel infection. I read some useful literature so that I understood what was involved. My first pass of urine had a small amount of blood, but blood in the semen was a different story. Perhaps there was semen in the blood, it would be hard to know. I certainly wasn't prepared for the amount of blood. From a practical point of view use condoms until the blood has disappeared and perhaps it is a good idea to warn your wife/partner. I wish I had been warned of the possible quantity of blood.
Back to the main story. I was faced with some decisions. I absolutely did not want surgery. A very good friend of mine had been one of the first men in Australia to have brachytherapy. He had a great outcome. That was what I wanted. But the gods had decided to thwart that idea. My prostate was way too big, > 70cc. If I really wanted brachytherapy I would have to go on to hormone treatment for at least nine months to shrink the prostate to a size that would make the therapy a practical proposition. Very frustrating. I didn't fancy the side effects of hormone treatment, primarily the loss of sex drive, as my wife and I still enjoy a very active sex life.
The urologist suggested another meeting with my wife present and other members of the family if required. This is very important. The consistent advice that I received from friends that I consulted who had been through all this was: "be open, talk about it, the worst thing I did was keep it to myself ". It was sound advice that helped greatly.
So the decision really made itself. I knew I had a good surgeon. I discussed with him his approach, the likely outcomes and asked a lot of questions. I talked to two good friends, the one who had brachytherapy and one who had a radical prostatectomy. Both had enjoyed good outcomes and were able to describe their experiences. I had been reading a lot of material from web sites, but decided that there is a point where you can simply confuse yourself. One disappointment was that I couldn't have keyhole surgery due to the scar tissue from the previous operation. I confirmed my decision with the surgeon, (stressing /nerve sparing), and we set a date two weeks later. That allowed enough time for me to have a CT scan, give two units of blood for use in the operation and practice my pelvic floor muscle exercises. I didn't see any reason to delay. I wanted to remove the problem, remove the anxiety and start my recovery.
December 21 2005
The operation went as planned. The next morning, after the drain tube and monitoring cables had been removed, I was able to shower, shave and walk, albeit cautiously. Of course the dreaded catheter was still in place so I had to carry a bag with me. It wasn't that embarrassing. Going to the toilet was difficult and painful in the first couple of days, but a couple of suppositories got things working, but it was still uncomfortable while the catheter was in.
I was in hospital a total of three days and left with the catheter in place with a leg bag and a larger bag for night time. It was a nuisance and a bit uncomfortable but nothing more. The catheter was removed a week after the operation. I wore a pad for the first day but found that I didn't need it. Perhaps all the work that I had put in on pelvic floor muscle exercises had paid off or was it the surgeon's skill, my fitness level, good luck or a combination of all of these. Very occasionally I lose a drop but this is rare and does not warrant wearing a pad. I have to get up once during the night but I suspect that need will disappear once everything has healed up. During the day I urinate less than pre-op despite drinking water all day long.
The pathology confirmed that the cancer was Gleeson score 6 and completely confined to the prostate. Good news.
9 January 2006
It is less than three weeks since the operation as I write this. I am back at work full time and I have been back at the gym for the last week, (upper body work only of course), have done a lot of walking but haven't started running yet as I feel as if I have a groin strain on the right side and I don't want to take a risk. There is of course some bruising and minor discomfort and no doubt a few weeks of healing to go. I might be overly optimistic hoping for the return of erections at this early stage, but there are other ways of loving, (and there are promising signs!).
As you can see from all the case studies available, there are lots of different experiences. I believe that you can help yourself somewhat by keeping fit, enjoying a balanced diet, being open and discussing the issues with your partner, family and friends. Then you have to have a very good, very experienced urologist/surgeon that you trust and can talk to. Remember, you are not alone.
It is now four months since my operation. I had a blood test, CT Scan and chest Xray last week and then a consultation with my surgeon. All the results were good with no PSA trace and clear scans and Xray. I have had no incontinence problems at all since the day that the catheter was removed, (a week after the operation). Erections are a problem with only partial firming rather than an erection. Levitra has been prescribed, (expensive little tablets!), I have tried one which provided significant improvement but hardly impressive! There were some side effects: a mild headache and some stomach impact which is hard to describe but resulted in slight pain when when eating. I am not sure if these effects will prove to be a problem. Otherwise recovery has been great and its good to know that everything is clear.
It is just over six months since I had the operation and I am in very good shape. Erections still need improvement but the Levitra has helped considerably with penetrative intercourse being possible on accasions. I have found that the side effects from the Levitra are only minor if I eat before I take the tablet and drink lots of water. In my case if I have had more than a small glass of wine beforehand then the tablet is wasted! But generally I think that my own erections are improving as time passes. The surgeon said it could take a year. I am starting to believe him!
Just before Christmas was the first anniversary my operation. My X-rays were clear and PSA undetectable. As recorded earlier I have not had any incontinence problems and my fitness and general health is great. However, normal erections have not yet returned and I am starting to wonder whether they will. This has had a bigger mental impact on me than I probably liked to admit as I was so confident that I would recover fully. Sure I sometimes get "useful" erections without the help of a tablet, but these would hardly give a stallion a fright! I am not keen to take tablets regularly as for me the side effects are uncomfortable. I have road tested Levitra, Viagra and Cialis; the later suits me the best with the least side effects, but each person's experience could well be different.
I guess I just have to come to grips with the change in my lifestyle and be thankful that everything else is good.
I am about to reach the second anniversary of my surgery so it seemed a good time to update my story. My X-rays were all clear a couple of months ago and PSA was undetectable. Sexual function is pretty good, perhaps not quite at pre-operation level as far as maintaining an erection is concerned but with a little occasional help from Cialis I am very happy. I have been able to almost cut out Cialis only using a low dose tablet occasionally.
On reflection, and discussion with my wife, the mental impact of the change in sexual function, (or fear of change), was probably greater than I realised. I think that it would have been very helpful if I had been offered some counselling from a suitably experienced psychologist. Consider this if you are concerned about post-op sexual function.
Otherwise life is good and it is great to have a clean sheet.
It's now three years since the operation and all is well. The scans and checks are annual now; health great. Absolutely no problem with any leakage but just need not to rush away after urinating - take time to make sure the pipe is empty!
Sexual function is pretty well normal. I use one third of a Cialis tablet ocassionally, (I sometimes wonder if that's a mental thing!) But it does seem to strengthen the erection so the chemist still makes some money out of me.
So stay positive and keep fit.
It's been so long now I have to count back the years. All scans and tests have be fine and I don't have to have a scan next year. I have had no negative after effects from the operation. No leakage at all. Erections good with occasional help from 5mg Cialis (I sometimes wonder if a placebo would have the same effect :-) ).
I think it must be around seven years since my "radical". Everything is good. I use Cialis occasionally to help with a better erection but it's not always needed. I am quite fit and exercise a lot which I believe helped at the time of the operation and now.
It must be getting close to ten years now since my first awareness of an elevated PSA level. I have had no problems since the Op (8 years ago?). I have my PSA checked with other blood tests every six months or so. My health has been great, no incontinence or erection problems. Everything is good.
Must be getting close to the tenth anniversary now and all is well. Keeping fit, eating properly and enjoying life.
More than ten years now and everything is good. I use 5mg Cialis a couple of times a week and that's all I need to ensure good erections. Zero incontinence problems. It's good to see much more openness about prostate cancer discussions in the ten years since my experience and I have been able to help friends who have been diagnosed and treated in recent years.
Another year has passed so quickly. There is nothing new to report. I continue to enjoy good health and other than some use of low dose Cialis, my life is better than it was before my diagnosis. I continue to keep very fit through running and gym work - I'm sure this helps.
Peter's e-mail address is: firstname.lastname@example.org