18 replies to this topic

[JohnLindsay]

I was diagnosed with prostate cancer in early December last year, and have since had my prostate removed through surgery. This experience has made me acutely aware of the importance of having regular screening if you are male and over 50, or younger if there is a family history of the disease.

I decided to tell my story on Coolrunning after reading of a man who wrote an article about his prostate surgery for his local paper, and because of that article, a number of men took the test. Three found they had cancer. Perhaps he saved their lives. Perhaps my story will help a runner or someone close to them.

I had my PSA checked every 2 years since I turned 50 (I’m now 58). It rose gradually over that time, and in 2005 reached 5.4, above the recommended maximum of 4.0. I was also experiencing frequency of urination at night, and because of these two factors, I was referred to a urologist and had a biopsy performed to check for cancer. 12 cores were taken, and no cancer was found. The diagnosis was benign enlarged prostate, which is common in about 50% of all men 60 and above.

I went to the doctor last year for another reason, and had another blood test. My PSA had climbed to 8, so it was back to the urologist for another biopsy. It was a blood chilling experience some days later to receive the news that I had cancer. It was even harder to tell my wife.

They found cancer in 3 of 12 biopsy cores. The urologist described it as a reasonably aggressive cancer (Gleeson 3+4=7), but it was early stage (T1C) and most likely would result in a complete cure with surgery, he said. As a runner of 30 years, I put some questions to him: Would I be able to run again (yes)? How long would it take (6 weeks)? And would I be able to continue to participate in ultra marathons (yes)? At 58 years of age and very fit, I was an ideal candidate for surgery, he said.

I hit the books and the internet to learn as much as I could about prostate cancer. My preferred goal was to defeat the disease without resorting to surgery, radiation, hormones or other non-natural methods. Surely there must be a natural approach, organic foods or whatever, which could turn this around, and people must have written up their success stories? I did turn up some information on the subject, more on prevention than cure, but none that I was happy to trust with my life. Had the cancer been less aggressive, I may well have trialled some of these remedies. But the clock was ticking in my case, with the imperative to do something soon to prevent it moving into other organs.

So after carefully considering all the alternatives, the decision in favour of surgery was taken. I scheduled it for 10 January, the week after the Bogong to Hotham Run which I was helping to organise (and which was subsequently cancelled due to the bushfires). I chose the Da Vinci robotic method due to the shorter recovery and less blood loss. The surgery went well, and most importantly, the post surgery pathology report indicated no extension of the cancer beyond the prostate capsule. When combined with my pre-operation numbers, the computer model indicates a 95% cancer free status in 5 years – a very good outcome.

Last Wednesday marked the end of the six weeks during which I was told not to run or lift anything heavy. For me personally though, it meant the return to running that has been part of my life for so many years. In the days leading up to Wednesday, I had added in short periods of gentle running of 50-100 metres to test the waters, just to make sure nothing came apart. It didn’t. So Wednesday morning, in the semi-dark, I headed out on my favourite trail. I started walking and running, and progressively increased the running component so that all up I ran probably 80% of the way. It lasted 45 minutes, and I was surprised how normal it felt. I repeated the process on Thursday and Friday, rested Saturday, and then on Sunday, decided to do my 90 minute course. Same result – it just didn’t feel I had been out of action for all those weeks.

I still have a way to go for complete recovery, though. One of the side effects of prostate surgery is incontinence. During surgery, a lot of damage can be done to the nerves and muscles that control urinary function. This normally takes 3 – 6 months to come good, and I’m at best only half way through that process. But when all is said and done, it’s a minor inconvenience that can be dealt with, and it does not interfere with my running enjoyment.

According to statistics, one in six Australian men will be diagnosed with prostate cancer within their lifetime, 12,000 are diagnosed each year. Approximately 2,600 Australian men die annually due to prostate cancer, making it the second most fatal cancer in men. These numbers are sobering. You don’t feel ill with prostate cancer – not until it has escaped the prostate and gone into other organs of the body. If you catch it before it escapes, the chances of a cure are very high. The test is simple and inexpensive. By taking action now, you may save your life, and thereby enjoy a long and healthy running career.

John Lindsay

[Spud]

Wow, thank you for sharing what is a very personal story John and
a timely reminder for many I'm sure.
All the best mate.

[tim]

John glad to hear you are recovering well and starting to run again.

What is the procedure to check your prostate? Does it involve what i think it involves? And at what age do you start worry about it?

[Dom]

John,

Thanks for sharing your story with us. It is important that men talk about these issues. Hope your recovery continues well.

tim, on Feb 27 2007, 08:54 AM, said:

John glad to hear you are recovering well and starting to run again.

What is the procedure to check your prostate? Does it involve what i think it involves? And at what age do you start worry about it?

Tim,

There are others more qualified to answer this question, though as part of my PhD (some years ago now) was on prostate cancer (from a geographical/health inequality/spatial epidemiology perspective) I have some understanding of it. Firstly, most men will encounter some prostate trouble through their lifetime. There are three common diseases that involve the prostate: prostatitis, Benign Prostatic Hyperplasia (BPH) and prostate cancer. Prostate cancer is the most serious of these conditions and BPH is the most common by far. Prostatitis lies somewhere between BPH and prostate cancer.

There are a range of methods to check the prostate and for prostate cancer.

John mentioned the PSA (Prostate Specific Antigen) test. PSA is a substance produced by the prostate gland that helps to liquify the jelly-like storage state of sperm (Kirby 2000). If there is damage to prostate cell tissue, then PSA is allowed to "seep" into the blood Thus a rise in the PSA count is generally indicative of some form of prostate trouble. Typically normal PSA levels are about 4ng/ml, though do vary between men. Thus as John mentioned it is best to get your PSA levels checked regularly to identify any changes.

A second option is DRE (digital rectal examination). The test is to examine the size and feel of the prostate to check for any irregularities. The fact that the prostate is enlarged is not indicative of cancer, but in conjunction with an irregular “feel” to the prostate could be cause for concern and so further tests might be necessary.

Thirdly there are ultrasound and biopsies. The ultrasound process is known as TRUS – Transrectal Ultrasonography. The resulting echoes from the ultrasound waves are analysed by a computer to build an image of the prostate. At this stage, though, the presence of cancer still has not been verified. In order to tell whether or not the enlarged prostate is due to cancer a biopsy is needed. This can be done during the TRUS procedure known as a TRUS biopsy. The ultrasound probe is used for guidance and a very small, fine needle is inserted into the prostate to collect the cells. The cells are then analysed in the laboratory and if cancer is present they will be given a grading (Gleason Score) depending upon how advanced and aggressive the cancer is.

This is based on work i did in 2002 and so there is probably some updated information out there. A couple of sites worth checking are:

Prostate Cancer Foundation of Australia

The Prostate Cancer Charity

Again, apologies if I've misunderstood any of the above - my background is geography, not medicine. In my research on health inequalities i identified a large need for greater research and communication in male diseases, therefore people like John with the courage to tell their tale should be applauded.

Regards

Dom

[JohnLindsay]

Thanks for the comments Spud & Tim.

Two methods for prostate check. First is a blood test in which they measure the level of PSA in the blood. Totally painless, answer in a couple of days. The second is DRE (digital rectal examination). The prostate rests against the rectum wall and the doctor can feel any anomalies such as lumps of hardness. Some doctors say all that's needed is the blood test; however a book I bought written by a leading US prostate surgeon disagrees and says both should be done. The DRE sounds worse than it is - it's a simple 30 second procedure which may play a part in saving your life.

Most authorities say you should start getting checks from age 50 on, every 2 years. However if your brother or father has had prostate cancer, your odds go up and you should start from at least 40 or earlier. I shared a room for a time in hospital with a bloke whose father had prostate surgery a year ago. Because of this, his 4 sons all went and had the test. Three were OK, but this one had cancer. He was aged 43, and was going into surgery the day I was discharged from hospital.

So putting it all together, there's no downside to the tests, and the upside is that it could save your life.

John

Disclaimer: Just for the record, I am not a doctor and everyone needs to seek their own medical advice.

[JohnLindsay]

Great answer Dom.

Regards
John Lindsay

[Horrie]

Thanks for sharing your story with us John.

Glad to see you are back on the trails.

[Slow Roastin' TURKEY]

John
The warmest of wishes for your continued recovery and my sincerest admiration for your courage to share your story.
I have a very close mate who has had similar experiences to you. He is now 66 and had a TURP (which as I understand it is the surgical removal of approx. 85% of the prostrate) about 5 years ago. As far as I am aware no biospy (either pre or post surgery) has ever confirmed cancer however his urologist was obviously concerned enough about his prostrate enlargement to do the TURP.
He has an athletic background and was a leading miler in his late teens however he is restricted nowdays because of a heart condition (5 stents).
He is as strong as an ox in the upper body from years & years of heavy weights.
He has experienced the incontinence problems like you to the stage where he had to wear male nappies for quite a while. He has also confided in me that the surgery and the removal of most of his prostrate has left him with a very low testosterone level & some fairly major psychological problems dealing with what he perceves to be his "highly reduced masculinity". He has a great relationship with his wife and only partner however he feels he is "less than half a man" with her. I hope that you are not experiencing similar problems.
I am nearly 44 so my peers and I are rapidly approaching the vulnerable age group. I have obviously learnt alot from my mates experiences and from stories such as your own. One thing that has really stood out to me is the ongoing difficulties that the medical profession still appear to be having both diagnosing and dealing with prostrate cancer and prostrate enlargement. As you experienced first hand, an elevated PSA may not necessarily mean prostate cancer and even a biopsy can prove inconclusive. I understand the protocols that a GP must observe are changing where it is now recommended that they do not do a DRE (digital rectal examination - finger up the bum!) and instead refer any patient complaining of potential prostrate symptoms straight to an urologist. The urologist must be careful with the DRE so as not to inflame any agressive cancer cells and they still appear to rely very heavily on the biopsy result.
I would encourage every male at and coming towards the vulnerable ages to be very proactive, not only in their regular check ups and thereabouts but in their consultations and discussions with their GP's. I believe a number of doctors read these forums and I certainly don't want to appear smart or disrespectful (and I'd welcome their comments in reply) but I am hearing of more experiences like John's and my mates where they really aren't being diagnosed correctly until it is almost too late.
John, may you enjoy many hundreds and hundreds more miles - you certainly have the courage to be a leader of the pack.
Warmest Regards
Graham

[Whippet Man]

John, thanks for sharing your experience. I am glad to hear you are back on the trails and look forward to catching up with you at an ultra sometime soon.

[Eagle]

John:
Thank you for sharing your experience. I am fully aware of what you say from recent personal experince.

[rocket]

John,
Thanks for raising this issue. I had the biops in late 2005 that indicated inflamation & PINs but no cancer. I was then put on a course of strong antibiotics, after these my PSA went back to an ok range. A few weeks ago I had my blood test for in preparation for my anual visit to the urologist. The PSA was up again (5) with a ratio that is border line. So I wait for my visit to Urologist (later this month) with some apprehension.
Best Wishes
Rod

[JohnLindsay]

Hi Rod,

Good luck with your urologist visit. Let's know how things go.

Regards
John

PS. Went for my first official "race" today after my operation - a 4 km fun run around Lilydale Lake. Beautiful run. Took it fairly easy and enjoyed it immensely.

[rocket]

John,
Good to you see that you are running again. Thanks for your wishes I will keep you posted.
Regards & Best Wishes
Rod

[rocket]

John,
Quite a relief. I have just returned from the specialist. Went through the usual manual examination. He wants to monitor psa more closely, now at 6 monthly intervals.
Regards
Rod

[JohnLindsay]

That's good news Rod. My first post-operation PSA results last week showed PSA as undetectable, which is what I was looking for. Still problems with my water works, but it is not stopping me from running.
John

[celtic runr]

John Lindsay, on Mar 28 2007, 02:27 AM, said:

That's good news Rod. My first post-operation PSA results last week showed PSA as undetectable, which is what I was looking for. Still problems with my water works, but it is not stopping me from running.
John

I starting having the blood and finger tests after I turned 50 but I was told not to worry. So I stopped. Later I had a new GP and she said go and do it again. So at 58 I was also diagnosed at PSA 6 and Gleeson 6, so I had the option of LDR brachytherapy instead of surgery. Afterwards for the next month I was affected by the drugs and side effects and my heart rate during running was very high. When I got to run more than a few minutes. This was very depressing but your stories kept me going. The side effects have reduced so I am hoping this will continue. The radiation half life is 60 days so its now at 1/6th strength.

Its been 5 months now and I will do my first post cancer race tomorrow - Adelaide Marathon.

[Buttonbuster]

Good topic guys, something that doesn't usually get talked about. I was 45 when I was diagnosed with prostate cancer and went in and had it surgically removed. I had no symptons when I was diagnosed, so it was a bit strange to go in to hospital feeling fantastic and coming out feeling like crap!!!!! It took me a while to get over the op but the worst bit was having a catheter inserted into willie wonker for 4 weeks - god I hated that thing!!!!! But you get through it and everything returns to normal. Make sure you keep up with your blood tests post op though, my PSA came back raised after one of my tests, 2 yrs after the op. I had radiation treatment for 8 weeks last year and thankfully my PSA has returned to normal, so fingers crossed. So now I am trying to get fit and feeling great again. So good luck to all of you, I wish you all well.

Cheers

[celtic runr]

Buttonbuster Sorry to hear it came back and that you have to start your fitness all over again. I always thought that after surgery it was gone while after brachy it can rise again after two years and then fall. I intend to get tested regularly. I ran the marathon 1 hr slower than my PB so I was pleased to actually finish.

Edited by celtic runr, 16 September 2009 - 08:56 AM.

[Louise]

My Dad was in his late 60's when he was diagnosed, and had surgery. It took him probably the best part of a year to recover enough to come tramping with me again, and he was pretty fit and healthy to start with. YMMV.

He was also told that he was at the upper age limit for what they will operate on. He also heard/read? that most men die with some form of prostate problem, though of course they don't necessarily die *because* of it.