Decision time when the Urologist calls – the process l took.
In 2013 on the Male Bag Ride (MBR), I travelled from Perth to Melbourne on a Postie motorbike, with 25 other male riders and 7 support crew. This fantastic event was held to raise money for prostate cancer research and to build awareness of the disease. We left Perth on April 3rd and finished on Saturday April 13th at the Melbourne Cricket Ground – at an AFL match between Melbourne and West Coast, (being most appropriate, as we started in the West and finished in Melbourne). The 4,500km of us all riding the valiant little Honda 110cc Postie Bikes helped to raise in excess of $450,000 and growing still. Pretty amazing numbers plus a significant increase in awareness. And all great fun as well.
However, for me to truly understand the very human significance of this trip to many men and their families, I had to first face another kind of trip altogether. I was diagnosed with Prostate Cancer some 7 months after committing to go on the trip. What an irony. What a challenge. I wasn’t sure whether I would even be able to go on the trip. And one of my sons had also signed on. This is my story of that other journey, the back roads travelled in discovering, facing and surviving Prostate Cancer.
Frequent tests, blood tests for all things like Cholesterol, blood sugars, PSA and others had been done regularly since l was about 40. I have a history in the family of severe heart disease so l was quite happy to get involved in preventative action. You just have to do it.
In August 2011 my PSA was 4.3 and my GP, in a very relaxed manner, suggested l see a Urologist as l had had a slight increase in PSA level; greater than what he thought appropriate for my age, then 58. Digital examination (something l had got accustomed to accepting, but figured irrelevant to me) indicated no enlarged Prostate gland.
In keeping with the low-key nature of the conversation, l slipped the referral into my desk draw without a second thought. It remained there until January 2012, when I was clearing the decks for the coming year. l decided l should make the appointment. At the appointment on a Tuesday the Urologist pointed out the age of the referral. He then did an examination and said all he would have done if l had come in earlier was to wait 6 months and do another blood test to get another PSA reading. So l was sent packing up stairs to Pathology to get that done. Not a problem. The Urologist told me he would ring me at a particular time the next day with the result. This he did to the minute. I was impressed. The PSA had risen to 5.2 and he wanted to do a biopsy the following Tuesday. A what? I needed to get a few basics explained about what that meant and why.
The biopsy was an absolute pleasure, woke up after a short nap feeling like l had the best sleep. This time the Urologist had told me to ring him the following day at a specific time, as l recall 3.00pm. I deliberately delayed ringing by 30 minutes, thinking this guy was so particular if there was an issue he would ring me. I made the call, he answered and said in a quiet straight forward manner that l had Prostate Cancer. Asking did l have a partner, he wanted to see us both that afternoon? Very much on the back foot l rang my wife at work and with some difficulty told her the news and the need to front-up, now! We turned up to the meeting and had the news reiterated in a blunt but considerate manner, and what it meant in terms of needing to do something and the options we needed to consider. He was doing international aid work the following week and so made an appointment for the week after that.
He gave me several booklets to read and gave me what his experience on the percentage odds associated with each of the options. They were, ‘Watch it and monitor’ or go for a “cure” with two different forms of Radiation therapy or finally surgery and removal of the prostate and all that involved (l had little idea of what it all meant). Side effects for the Radiation were potential damage to the bowel or bladder and impotence 20 – 80% (what?). With surgery things seemed very ugly, major surgery (l had never been to hospital for anything other than birth and the biopsy the day before). Side effects from surgery include incontinence at 5% permanent and about 40% for impotence. Fantastic, 2 hours ago my wife and l were happily working away on our occupations and suddenly I am told all this is my problem. They were the facts, backed by rubbery statistics and opinions however, and l had to do something soon.
I went home had dinner and then rang up my 3 sons and 2 siblings to pass on the news of the day. Very hard work for me to tell them. The deathly quiet on the other end of the phone was eerie and a little scary. Two days later l did my Motorbike licence test for the MBR with two friends also doing the ride and told them over lunch. A shocked but supportive response ensued, for which l was grateful. We then went and played golf!
I had a week to work out what to do and l was already getting conflicting advice. So l decided to take this approach:
- The information available to me from credible sources was great but the statistics on outcomes where hugely variable as noted previously.
- By reading the booklets and the net l learnt quite a bit more but found different articles from different researchers in various countries mostly conflicting on advice. No answers here. To me it sounded like surgery or treatment in some countries was being undertaken when perhaps unnecessary. Lack of hard research data meant that advice given, and decisions taken, had to be done with a great deal of diligence by both the Doctor and the patient.
- There was so much grey area and very little black and white. It was disturbing. I figured talking to guys with the disease was probably going to be potentially misleading as they were going to be heavily weighted to their own experience and outcome, good or bad. Outcomes differed for all sorts of reasons, particularly the stage at which the cancer was detected and its aggressiveness. So l decided not to seek council amongst survivors. My thought was that advice from these guys would be most helpful after any procedure, depending on my own outcome.
- My strong preference was that l didn’t want surgery and as no option seemed to be clearly the correct one, why not avoid it? Also, radical surgery (the long cut) had a long recovery time, robotic less so (smaller cuts). No one direction would guarantee a particular result. It was dawning on me that the decision was going to have to be mine and l had to be accountable to myself for determining and accepting the outcome.
- My course of action was to discuss with medical people who may not be experts on my problem but were faced with serious medical decisions with patients daily. So l spoke to a Gastroenterologist l knew, then a Heart surgeon, then an Intensive Care Doctor and then importantly my referring GP. My questions were, what option would they recommend and did they know of or could they check out the reputation of the Urologist l was seeing. If you like a reference check. To a Doctor they recommended surgery and they had positive things to say about the success rate of my Urologist. Yuk, why did l ask them?
- So back to the Urologist without my mind made up. I had a referral to a well regarded Robotic surgeon in my pocket from the GP. Discussing the issue with the Urologist that day was a good, open dialogue. He said he could do robotic surgery but was better at the radical. He would give me a referral to a Robotic Surgeon if l wanted a second opinion. More options….
- Crunch time – l had determined a process to make this decision and l had followed that through and got an answer from people l knew and trusted and although l did not like their answers, realised seeking more opinions was just delaying the decision. I liked the style of my Urologist, his descriptions of my situation were straight, a little blunt and he didn’t pamper me with “feel goods”. This inspired my confidence and trust. He declared again that his personal skill was radical surgery. I gulped and said let’s do it, put a date in the diary, now, before l got scared. The date listed was for about 4 weeks after the biopsy, he didn’t like to operate any sooner so as to give the prostate gland time to heal after that.
- The day after the operation the Urologist came into see me and virtually gave me the classic “good news bad news” story. First the operation was successful, no problems or complications and l should heal quickly. The bad news was the full biopsy of the removed Prostate resulted in the cancer been upgraded to a very aggressive one that had escaped the prostate gland. In fact I had a cancer Gleeson’s score the like of which he had never seen before in his many years of experience. On asking l found out that about 20% of biopsies on the removed prostate are different to the ones done initially. The majority of these are upgrades!
- I wasn’t happy with this news and didn’t really fully understand it. However it did sink in that the process of getting to this point was almost certainly of benefit. The Urologist felt he had removed all the surrounding infected tissue and that any delay of months in making a decision may have ended up with, as he put it, “a very different type of conversation”. A wider spread of the cancer in the pelvic area would have been very likely.
- My response was one of focussing on targets of physical and personal goals l wanted to reach during recovery from surgery. I reached them; lunch out with friends the day after the catheter was taken out (didn’t like that awful implement, but it did its job well) and came home by tram; walked up to 6 km per day from that point; went away for Easter with friends just ex catheter; swam 1.5km before 3 weeks, very slowly but with Doctors approval and wife’s disapproval; sons wedding at 6 weeks and just following that an 8 km Mothers Day walk/run with my wife. All the above was done very gingerly, with no lifting of any weight and of course whilst learning from scratch, that old habit of urinating all over again. Safely guarded of course by all important security of continence pads and pants. These l had great fun in buying from the chemist; the young girls serving often did so with a wondering grin on their faces.
- At 12 months the PSA is not a problem; the Urologist did do a good job in removing all that was necessary. He is still talking “cure”; l am still expecting a return but only time will tell. Either way l am not expecting to die from Prostate Cancer.
- I have not spoken about it too much, after all it seems everyone knows someone who has the disease, wouldn’t they know more than l did a year ago. However l found out differently when on the Male Bag Ride (which was of course to raise awareness and money for research of the disease) when l was asked to talk to my fellow travellers about my case study of prostate cancer after dinner at the salubrious in-house restaurant at a Ceduna Caravan Park. How could l say no to this bunch of fellows who had devoted two weeks of their time and a generous sum of money to assist research in the disease l had. I spoke after the Gynaecologist spoke on men’s health (true, an MBR rider and he was very good). The guys all seemed to appreciate my comments, to my enormous surprise. Perhaps it was because the talk gave them an honest and open understanding of what happened in this powerful and common human drama – many had family members or friends who would never speak of such untidy men’s business. Or perhaps it gave them more understanding of what we were trying to achieve with this adventure. David Parkin, also a MBR rider did understand and incessantly beat the drum on PSA tests and the digital examination for very good reasons.
- On the last night of the journey from Perth to Melbourne, we had an exclusive MBR riders and crew dinner, and speeches night, in Lorne. Here l was asked if l would ride my Postie bike on the MCG (that was all we were allowed, for some VIP reason, David Parkin plus one other). l accepted the privilege with surprise and pride. So come the Saturday. After the police escort from Williamstown to the MCG, Parko and l eventually did the MCG honours on the bikes. The other guys walked the lap and were warmly greeted by the massive WCE vs. Melbourne crowd. The last year has not been from hell for me, l have learnt a lot about myself and others and certainly value the relationships and experiences gained on the Male Bag Ride. It could all be described as the journey, some parts have been great and enriched my life, others not so fondly remembered.
My message, for what it is worth to any fellow who is faced with a similar decision to me, which will be 20,000 plus Australians this year (over 3,300 men die each year of prostate cancer), is to think hard about how you are going to make that decision of what to do. The current state of knowledge says to me that the information is not black and white. You should make a decision based on your own investigations and be the one accountable. Seek wise and trusted council. No outcome will ever make you the same again. It is a life changing play, more important than many decisions you will make. No guarantees are given by anyone. I am happy with the path l took and the support l have had along the way from medicos, friends and family.
Doug Marshall