Updated: Mar 5, 2020
Rob is 56 years old, married with a grown-up daughter, a job, a house and a mortgage. Rob is not his real name but he is a very real man who had his prostate removed two and a half years ago. This is his story.
How did it start? I was 54, happily married and as far as I was concerned in good health. My family did have a history of prostate cancer. It killed my father and my older brother but I had never had a problem. I played badminton twice a week, I played football, I was still in good shape.
During an annual check-up, the nurse suggested I have a blood test for prostate cancer. I wasn't worried so I had the test. Three days later I got the results. They weren't good. I had prostate cancer, it was aggressive, and I needed to act fast.
I couldn't believe it. I had no symptoms! No pains. I had an MRI scan, a biopsy was taken and I got a second opinion. They all said the same thing. I had prostate cancer and it was bad.
I was told I had a Gleason reading of 9.
The Gleason Score is the grading system used to determine the aggressiveness of prostate cancer. The score ranges from 1-5 and describes how much cancer from a biopsy looks like healthy tissue (lower score) or abnormal tissue (higher score). Most cancers score a grade of 3 or higher.
Prostate tumours are normally made up of cancerous cells that have different grades, each patient is assigned 2 grades. A primary grade which describes the cells that make up the largest area of the tumour, and a secondary grade which describes the cells of the next largest area. For instance, if the Gleason Score is written as 3+4=7, it means most of the tumour is grade 3 and the next largest section of the tumour is grade 4, together they make up the total Gleason Score.
If the cancer is almost entirely made up of cells with the same score, the grade for that area is counted twice to calculated the total Gleason Score.
Typical Gleason Scores range from 6-10. The higher the Gleason Score, the more likely that cancer will grow and spread quickly.
Scores of 6 or less describe cancer cells that look similar to normal cells and suggest that the cancer is likely to grow slowly. A score of 7 suggests an intermediate risk for aggressive cancer. Scoring 7 means that the primary score (largest section of the tumour) scored a 3 or 4. Tumours with a primary score of 3 and a secondary score of 4 have a fairly good outlook, whereas cancers with a primary Gleason Score of 4 and a secondary score of 3, are more likely to grow and spread. Scores of 8 or higher describe cancers that are likely to spread more rapidly, these cancers are often referred to as poorly differentiated or high grade.
With my Gleason Score of 9 my consultant recommended a radical prostatectomy followed by radiation therapy and hormone treatment.
A ‘Radical Prostatectomy’ is an operation where your whole prostate is removed. The surgery involves removing the prostate gland, seminal vesicles (glands that store semen), as well as any blood vessels, nerves and fat around the prostate. Your urethra is cut during the operation and re-attached to the bladder.
I was warned that there could be side effects (more about those later) but with Gleason score of 9 and cancer about to burst out of my prostate, I didn't feel I had much choice. I agreed to the surgery.
In the UK when having your prostate removed you have two basic options. Both are carried out under general anaesthetic:
Open prostatectomy. This is a traditional “open” surgical procedure, where the surgeon gains access to the prostate gland by way of a 10-15-centimetre incision in your lower abdomen.
Laparoscopic surgery is also often called keyhole surgery. A laparoscopic prostatectomy is carried out using six small incisions (called keyholes or portholes). A camera is inserted into one just above your belly button. This transmits the view from inside your body to monitor screens in the operating room. It magnifies the image of your pelvis, so your surgeon has a detailed view. The remaining keyholes allow access for the surgical instruments used during the procedure.
Robotic-assisted surgery is a laparoscopic technique that uses a robotic console (the daVinci® system) to help the surgeon during your operation.
The robot has three arms; one of which holds a high magnification 3D camera, whilst the other two are equipped with various instruments, to be used during the surgery. The surgeon controls every movement of these arms from a booth on the other side of the theatre.
The operation. Six weeks later I found myself on the operating table in a surgical theatre lying underneath a surgical robot. ( The delay was down to me. I wanted to walk my daughter down the aisle so the operation had to wait until after her wedding. I was told it was a risk but one that was acceptable now I was taking the appropriate hormone medication.) My surgeon sat at a control console on the other side of the room. I was frightened but fascinated by the machine suspended above me. It looked like something out of a sci-fi movie. That was the last thing I remember before everything went black.
Post-surgery. I awoke to find the operation had been a success. My prostate had been removed, and there had been no sign of any cancerous cells in the surrounding tissue.
They say you can normally expect to be home within 24 hrs of key-hole prostate surgery and I was. I had a catheter strapped to my leg, which meant I had to wear baggy clothes but considering what I had just gone through things seemed to be going pretty well. I was prescribed morphine etc but within a few days, I stopped taking pain medication altogether. The cancer was gone but my prostatectomy journey was far from over.
The side effects. I had been told that I might suffer some side effects. I did.
Erectile dysfunction (ED). An inability to get it up! I'd heard about it, I was warned by my doctors that prostate surgery could affect my sex life. I had even read about it in some of the pre-surgery pamphlets I had been given. Despite everything that had happened to me I thought I’d be OK, but I wasn’t.
My wife and I tried to make love post-surgery but I couldn’t maintain an erection. I was suffering from ED. A common but nevertheless very distressing side effect of a prostatectomy. I went to my doctor and told him what was happening. He didn't really say much, he just put me on Viagra and sent me home.
Nothing prepared me for the humiliation of not being able to make love to my woman. The fear of rejection and failure are a toxic mix at the best of times, in the bedroom, after surgery, for me, sexually they proved terminal. Even with the Viagra I was unable to maintain an erection.
The combination of surgery, hormone treatment and fear seemed to suppress my sex drive to the point where its now almost none existent. I still have the occasional urge but to be honest these days that’s not very often. It’s got to the point now where my wife and I don’t have sex any more. We don't even really try. We have the occasional cuddle but that is about it. I am hoping once I am off the medication my sex drive will return and that things will improve.
Weight gain. I was told that the hormone treatment (androgen-deprivation therapy (ADT). A hormone therapy that deprives the patient's body of androgens, such as testosterone, which have been shown to stimulate the growth of prostate cancer cells) can encourage weight gain. Again I thought that's not going to happen to me. Again I was wrong.
I remember feeling almost proud when I was able to report at my first post-operation meeting that my weight had not changed. I'd always been fit, weight gain had never been an issue. So you can imagine how unhappy I was when I found over the next 18 months that my weight slowly began to creep up. I was getting fat, developing breasts!
When I raised this with the medical team, they did not seem particularly concerned. They saw it as just another side effect of the treatment regime. They suggested I wear loose clothes and not worry too much about it. But I did worry about. I became very conscious of my changing body. I tried to exercise, but the other side effects made it difficult. In the end, the only thing I could do to control the weight gain was change my diet. I eat much less now than I used to. Despite my best efforts, I am still 14 lbs heavier today than I was before my surgery.
My peeing problem. Incontinence was not something as a grown man, I had ever had a problem with. This all changed after my surgery.
Post-op incontinence. Following the operation, I found that I had almost no bladder control. I was told that this was normal and that things were likely to improve. I knew I would have to wear a catheter after my operation and whilst I was at home it wasn’t too big a problem. It had been inserted in hospital and as long I stayed in the house and wore baggy trousers it wasn’t an issue. It only became a problem when I went out. I was on the bus going to the hospital for a check-up and somebody or something knocked the drainage tap on my catheter. I didn't know anything about it until I had a shoe full of cold pee. I felt so ashamed. I wasn't sure if anybody could smell it. I got off the bus. I had to walk home which as you can imagine was not the most comfortable of experiences. I wore the catheter for two weeks. I stayed in the majority of that time.
Day time Incontinence.When the catheter was removed my problems did not go away. I was still peeing a lot and when I had the urge to go, I had to go. No argument no delays. All trips had to be planned around access to toilets. Where are they, how can I get access to one? No toilet. No, go. As you can imagine this added another layer of complication to my life. Things did improve but my day time bladder control issues have never completely gone away and even now two and half years later I am still dealing with them.
Night time incontinence is not something I thought about before it happened and if anything its was even worse than day time incontinence.
The first time it happened I was mortified. I woke up and found I'd wet the bed. A bed I shared with my wife. I was in tears. I thought my world had come to an end. I couldn’t control myself when I was sleeping. I was like a little child. I’d embarrassed myself in front of the woman I love. A woman I couldn't even make love too. All I could think was "why would she want to be with me." My wife was amazing , she reassured me, helped me re make the bed , and did her best not to make me feel any worse. Despite her best efforts I felt terrible.
I started to worry about going to sleep. In fact, I tried not to sleep! My wife saw what was happening and encouraged me to go back to my doctors. With the doctor's help and her encouragement, I put together a bedtime routine which has helped me gain some control my night time incontinence. I now have my last drink 3 hrs before I plan to go to sleep. After that final drink, I empty my bladder before I go to bed. Even after taking these precautions I still have to get up 3 or 4 times a night to pee. On my best nights, my sleep is broken at least 3 times.
Personality. I'm not sure whether it's the hormone treatment or surgery or both but I have noticed a change in my personality. I used to be a person who saw the world as a glass that is half full. Now I see it as a glass that is half empty. I have become much more emotional and sensitive. I have never been a person to shy away from the emotions. I used to cry before my operation, I just seem to cry more now and for a wider range of reasons.
Maybe I'm just getting older, but since the operation, I feel more fearful. I analyse things more. Things worry me now, that never used to. If somebodies house gets burgled on my street, these days i feel compelled to check every lock in my house repeatedly. I don't think I would have done that before.
I haven't been able to talk to my friends about what has happened to me. I'm frightened that they'd laugh. Changing room banter can be cruel. We make jokes about not being able to get it up. I've always said if you're going to dish it out, you've got to be ready to take it. I have certainly dished it out over the years and now I'm not sure I can take it. If they did laugh I'd be devastated, if they didn't I'd be worried about what they were thinking. So right now talking to my friends is not an option.
The radical prostatectomy surgery probably saved my life and I'm grateful to God for that, but I lost something when I had my prostate removed. Something important and I'm not sure I'm going to get it back.
18 months after surgery my bladder control was improving, there was no sign of cancer and it was time to start my radiation therapy. Part 2 of Rob's story can be found in the next prostate diary where he'll talk about the radiation treatment he has had and the side effects he's had to deal with.
Editors note: This is one person's journey. Its not meant to frighten. It's meant to inform. Everybody has their own journey. Delay in diagnosis does not improve your prognosis so get checked, and take control. JG