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Prostate cancer patient Q&A

Joe is 41 years old and the Managing Director of IdenTrust in EMEA. He was diagnosed with prostate cancer in January 2010 and had robotic surgery one year ago.

You seem very young to have prostate cancer. Did you have any idea you had a problem?

I had no idea whatsoever. I didn’t have any of the typical symptoms and felt completely fine. I had a typical lifestyle for someone my age. It was only after I was diagnosed that I learned that my grandfather had prostate problems for 15 years before he died, although he died of different causes. You never think this sort of thing will happen to you; I was one of the youngest my doctor had ever diagnosed.

So how did you find out you had the disease?

I have been very, very lucky. My dad had a major operation earlier in the year and he suggested that I should have a general check up and get a PSA done. I didn’t even know what a PSA was at the time.

I had never had any serious health issues, and didn’t think I needed a check up, but he kept on at me about it, so I finally went to see my GP. They did the usual stuff, blood pressure, BMI, etc. I suggested a PSA test, but was told it was only done if a patient had specific symptoms or was 50 or older – I didn’t have any noticeable symptoms and I was only 39 at the time, so I left it at that. But, they did suggest doing a cholesterol test. The cholesterol test requires you to fast before you give blood, so I had to schedule another appointment with the nurse. I got a form to bring back, and I noticed a tick-box for PSA. I found a same coloured pen and ticked the box myself.

I went to see the nurse a few days later. She was surprised to see me down for a PSA (“you’re a bit young for that, aren’t you?”), but I said if it was on the form she may as well do it. They take a small amount of blood and I didn’t have any concerns that it would come back as abnormal – but it did. My PSA wasn’t off the charts, but it was higher than it should have been. This could have been down to a number of things, so they ran the tests again – my PSA went up. At that time they referred me to a urologist at a local hospital. I had the delight (not!) of the first of many internal exams, but was told everything felt normal and not to worry. I was put on antibiotics, as the elevated PSA could have been down to an infection. The PSA was repeated and it went down a little, but was still too high for my age. I went round this cycle again, but the PSA remained raised. I wasn’t concerned at that time as each doctor kept saying that the prostate felt normal. At that point, the next step was to have a biopsy.

Was the biopsy as bad as it sounds?

Well, it wasn’t the most fun I’ve ever had! I was confident that it was the last step in confirming that I didn’t have cancer and therefore worth getting it done. The procedure is uncomfortable, rather than painful, but I was cursing my dad for suggesting I had the PSA test in the first place. I didn’t feel great for a couple of hours afterwards, but nothing worse than that.

And the result came back positive…

It was a massive shock. I didn’t expect to be told that I had cancer. But I was. I didn’t have to tell my wife, she could tell by the look on my face when I got home. It knocked me sideways for a few days as you realise that you’re not indestructable and you think about your own mortality and the impact on loved ones. It was also really weird, as I still didn’t have any symptoms and felt absolutely fine. I was open about it with family, friends and colleagues – not broadcasting it, but raising it when appropriate. I am still touched by the support I started to get from that point onwards. It made a huge difference.

What was your next step?

I got a second opinion from another oncologist, Professor Jonathan Waxman. The result didn’t change, but I felt very comfortable with Jonathan and have been his patient ever since. He’s a super guy and a leading expert in his field. He explained things very clearly and made as much time as I needed to answer any questions, and gave me fantastic insight and advice. He referred me to a leading radiotherapist and to The Prostate Centre, which is when I first met Professor Roger Kirby and the wonderful team that he has.

Were you given different treatment options?

There were three options for me to consider – active surveillance (i.e. keep monitoring my PSA levels, but nothing more), brachytherapy (a type of radiotherapy) and radical prostatectomy (surgery to remove the prostate).

What treatment did you choose and why? Who helped you to decide?

Once I understood the options, the decision was easy – surgery. Active surveillance was never a real option given my age, the cancer would have got me in the end; it was just a matter of how long. I was initially attracted to radiotherapy, but I found out that if it doesn’t work, it didn’t seem there were many/any options after that. However, if I had surgery and that didn’t work, I then always had the option of radiotherapy – two bites at the cherry. Added to that, the side effects of both were similar, so it was a no brainer.

The questions were then… What type of surgery – robotic or traditional? And with which surgeon? Patients may not realise, but there is choice out there and it is really important that you make the decision, not someone else, and that you are comfortable with it. Roger is an amazing guy and I immediately felt at ease. He talked me through in detail what would be involved. It is a major procedure and I wanted to know as much about it as I could. Roger uses the Da Vinci technique, where he operates using a very sophisticated robot to undertake the operation. I wanted to go this route as it is said to be more precise and spares more of the nerves than traditional surgery can. Added to this is that The Prostate Centre is truly an amazing place. From the moment I walked in, everyone was so kind, considerate and obviously experts in all matters prostate. I felt like I was going to get the best possible treatment I could find.

You chose robotically assisted radical prostatectomy (keyhole surgery). How did you find that experience?

Despite all of the preparation and everything that I had been told, I belittled in my own mind what was going to happen. It is a major procedure, but I definitely made the right decision to go for the robotic approach. Six incisions were made across my stomach, tiny things really, all less than an inch long. I was told that I was a model patient, but I didn’t feel that great when I came around, nor for a few days after. I was on my feet, albeit shuffling along the hospital corridor, the following day and the nurses encouraged me to be active. I got regular vists from the Prostate Centre team, which was great.

I stayed in hospital for three nights and went home on the fourth day. It wasn’t until I came home that the enormity of it all sunk in – the “what might have been”. I was very lucky. Roger and the team got all of the cancer out. It was close to spreading outside of the prostate itself. If I hadn’t known, things would probably be very different now. I’ll always be grateful to my dad for making me get the test.

I hadn’t ever had an operation and thought that I would be back to normal straight away, but I felt weak for a week or two. I didn’t return to the office for four or five weeks, although I did a bit of work from home. All patients who go through this have the joys of having a catheter for a while, but it wasn’t as big a deal as I thought it might be. You have to adjust, but it’s amazing how quickly that happens.

Was the operation a success?

I got my histology results a week after the surgery and they confirmed that the cancer had gone and that my PSA was now “undetectable”.

As I write, it’s nearly 12 months to the day of my operation and I am cancer free. It’s a wonderful feeling. I am checked every three months and will continue to be monitored for the rest of my life. As cliched as it sounds, it really has changed my outlook on life.

What did you find the most troublesome aspect of the post-op period?

Having the catheter out wasn’t much fun, nor was the period of continence issues thereafter, but given the alternative it wasn’t much to complain about.

How do you feel looking back now, one year on? Any lasting side-effects?

I feel great, but most of all lucky. Lucky to have been diagnosed when I didn’t have any symptoms. Lucky to have been diagnosed early enough, just. Lucky that I had some wonderful care and treatment by some amazingly gifted people. Lucky that it has helped me realise what’s important in life.

What message, if any, do you have for men going through a similar experience?

First of all, I have a message for any man reading this – go to your doctor and ask for a PSA. 10,000 men die from prostate cancer each year in the UK, yet an inexpensive test can help identify if further exploration is needed. Prostate cancer is treatable if caught early enough.

For anyone going through the same thing as I did, I would say…

  1. Keep the faith – you can get through this.
  2. Do your research – make sure you know what your options are and what’s involved
  3. Get the best possible advice – speak to a lot of different experts and people who have been through the same thing
  4. Take control – it’s your body, your life, so you decide what is best for you
  5. Get fit – looking back, I really do believe that the fitter you are, the faster you recover
  6. Keep some perspective – everyone has side effects after. The question is how long they last, everyone is different. But they will go, and better to have the side effects than the alternative of not being around. And remember, after the operation you can’t do too many pelvic floor exercises!
  7. Have a positive mindset, before, during and after – it really will make a difference.

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