John McPetrie

20190501_150637.jpg

I was 43 back in 1996 when a doctor whom I’d seenfor an executive health medical asked me when I’d last had my PSA tested. I’d never heardof PSA.  And so began a long journey. My first reading was 4.5 which I learnt was outside the normal range and far higher than a man of forty-odd should have. Things got worse from there. By the early 2000’s I’d had PSA checks more or less every six months and more fingers stuck up my rectum than I care to boast about. But the resultswere always the same – ‘small and soft’ (the sort of situation I face now but on the other side!). The PSA tests generated more interest because the score kept rising. I went on to heavy antibiotics and eventually I had my first biopsy. What joy! The results came back negative. I said “I told you so”, everyone spoke of a ‘false positive’,I urinated and secreted blood for a while – and then things went back to normal.

 

By 2010 my PSA reached 10.8 and after all those fingers again, I went for yet another biopsy. Also negative. And then my PSA began to fall. My urologist was convinced that whatever it was that had caused the high readings (for 15 years or so!)had now healed itself. (Be warned–  I’ve since learnt from my oncologist that cancer can ‘put the squeeze’ on the PSA reading so that a fallingreading can  actually mean advancing cancer…). Then in mid-2017, I had my lowest reading ever, 4.02, and my urologist retired. Almost scornfully, I went to one of his partners  who,after the finger check  (“not so small John, nor so soft…”), suggested I go for an MRI. Ho, hum. Off I went to the Kingsbury and fell asleep in that noisy machine. The good doctor phoned me to say that I should come to see him. I was convinced I was fine.My PSA was falling, for heaven’s sake, and it was year-end and I just forgot.

 

In July 2018 I went for my usual mid-year PSA test and it was 4.4 but this time the very good doctor reminded me that he had had something to tell me. It turned out that the MRI had indicated that not only did I have cancer but that it was quite likely already out of the capsule. This led to a third biopsy and the confirmation that I had prostate canceralright but with a Gleason score of  7(3 plus 4)which is a Gleason grade group score of 2 . (Gleason grade group 1is the least aggressive and Gleason grade group 5 is the worst). I  needed to have the prostate out in a hurry. “No problem,” said everyone, “no one battles with prostate cancer. They whip it out, you pee yourself for a bit and then everything comes right”.  Off to aurologistwho, I learned, did something called a radical nerve-sparing robotic prostatectomy and then off for another more definitive MRI out in Milnerton. The results of that little expedition were sobering and perhaps for the first timeI began to realise that I might be in some trouble. My Gleason score was not a low 7, but a solid 8which is a Gleason grade group 4.The cancer was not confined to the prostate but had invaded  the seminal vesicles andthe nerves that run along both sides of the prostate which are responsible for erections.I was at Stage 3(b). I had all the signs of locally advanced cancer. About the only good news was that the cancer did not appear to be  in my lymph nodes from where it can spread all over the body andparticularly into the bones(this is advanced metastatic prostate cancer for which there is no cure). Nevertheless, despite what I was beginning to understand was a fairly advanced and aggressive cancer – if localised to the pelvic area – the urologistwas pretty confident that he could get it all out.

 

Going into theatre wasnothingspecial; the surgeon’sclerical assistantsdo all the preparatory work withthe medical aids and you just pitchup early in the morning of the day of the operation. In my case theop was in the afternoon and I spent a quietmorning reading and getting my vitalstatisticstakenby a succession of pleasant nurses. Then it was time for theatre and I was wheeled to the operating area where the anaesthetistmet me and took me throughthe drill. To add to the interest, my surgeon had recentlytaken on a new robotic operating machine and a crowd of newspaper reporters and photographers were there to get some copy andpictures. I learned that Iwas his16thpatient on the new machine, which was comforting. When I was wheeled intotheatre, my surgeongreeted me from the far side of the room where he was seated in front of a monitor. The robotic machine which was going todo all the work (it sends in five arms , one with a camera)was at the far side of the room. I was moved toward the machine and told that my legs would be put into stirrups  butI don’t recall getting that far. Someone put amaskover my nose and I was gone…..It was the 9thNovember – I had my very own personal 9/11 experience.

 

The op went well enough, if a little longerin durationthan usual because the good doctor had to ensure that all the cancerous tissue was removed in order to ensure negative surgical margins (the pathology lab checks all tissue removed for cancer cells).Recovering from the procedure wasn’t much of a hassle – I’m fit, which helped.  Myurologistassured me that despite having to go to the margins, he felt that he’d ‘got it all out’,along with a seminal vesicle and about 75% of my bilateral nerves. This was not great news on the erectile front but hey, if it meant that the cancer was gone, both my wife and I were up for it. Well, sort of.

 

I’d had some training on how to hold my urine with the single remaining sphincter and slowly,over two to three months, that element of my pelvic function returned to normal, along with the odd mishap. I’m a regular short distance runner, so I rested for about a week then started walking for another and within two weeks I was running again, ‘nappies’ and all! I even had the experience while running,early on, of hanging onto my pad as I jogged past some other runners who asked if I was okay. I explained that ‘my nappy had come undone’ and we had a good laugh and then chatted about the rigours of prostate cancer! Things went well. I got back into my normal routine and was running with smaller and smaller pads until, after a few leaks, eventually no drips at all. If all the cancer was out, the operation was entirely successful.

 

But it wasn’t all out.In February2019,I had my first post-op PSA test. I popped across from my office for what I hoped was to be a short visit, hoping to hear that my PSA reading was down below 0.02, or better, at the undetectable level. But it wasn’t. The reading was 0.18,far too high for a lad with a Gleason 8 and Stage T3 readings. I needed further treatment. The rest of the session was about meeting someoneI hoped never to have to visit -an oncologist.

 

Now things began to change. I found myself in a state of limbo not knowing whether the reading might  be indicative of cancer not detected and not removedduring the surgery, or cancer in some other part of the  greater pelvic area or worse, in some more distant body part,or in the bloodstream, either dying away (one prays) or looking fora place to hook up.  And that is what the oncologist and the wonderful folk atthe Radiation Department,down in the bowels of the Rondebosch Oncology Hospital,wantedto sort out.

 

At this stage I want to digress to observe that this is a very good time to get a book by Dr Patrick Walsh called “(Dr Patrick Walsh’s) Guide to surviving prostate cancer”.You’re no longer part of that nice big fraternity who had the op and all is well.  While they’re focusing on getting out of pads, how quickly their erectile function returns and getting back on the road or into the gym, you have other things on your mind. You’re part of a much smaller group for whom the operation was not wholly successful (but a very good thing, nevertheless), and you’re starting to think about how long you’ve got to live! Doctor Walsh’s book gets you in touch with everything you need to know and probably quite a lot you don’t. But being informed helps you to ask questionsand to make decisions.

 

This is also a good time to find others like you, ‘ in the same boat’as it were, who can ease the strain of being alone out there. As you’ll gather, I’m happy to chat about the various aspects of the disease, the surgery, therapy, exercise and my own personal condition – what does and doesn’t work. It’s good to find others to chat to because it helps to put things in order, in perspective and itcan help withdecisionmaking. Alsoyou need to talk to those you love.Keep them in the picture; theyare your best support. And if I may suggest, don’t get too embarrassed by what you can’t do anymore or may perhaps never be able to do again. I’ve found it much easier to laugh at the issues than to be depressed by them. What the hell, you get to live once and we’re on a journey just a little different from others. The prognosis is not all doom and gloom.

 

Anyway, the oncologist told me that because they couldn’t know where this 0,18 PSA reading was coming from, they would assume it was from the ‘prostate bed’, the area where they had operated. They would focus therapy inthat area andin thenearby lymph nodes. So, I was going to have 34 bouts of external beam radiationwhich involves  aiming  high-intensity beams precisely at that areato destroy anyremaining cancer cells. Just how precisely is another story which isn’t of consequence here, but you end up with little tattoos to help the therapists position you under the machines! And because prostate cancer is hormone sensitive (weakened in a low testosterone environment) to further enhance the chances of killing offwhat cancer remained, I’d be getting injections of something called Luteinizing Hormone-Releasing Hormone (LHRH) agonist, a form of chemical castration. This treatment, also known as Androgen Deprivation Therapy (ADT),turns regular bursts of instructions from the pituitary gland into one long unbroken signal which confuses the hell out of the bits and pieces between itself and the testes. The end result is a shutdown of testosterone production from the testes. That’s how I remember it, anyway.

 

I found absolutely no discomfort associated with the radiation therapy – you just lie on a table of sorts, attended to by wonderful,kind, friendly radiation therapists,while the machine buzzes around you for 10 to 15 minutes.Getting away for 34  consecutive working-day sessions, however,is a hassle. And the hormone injection, to implant a small pellet which secretes its contents happily into your abdominal fat over the next three months,is something to remember.  The needle is bigger than a bayonet, but hey, it’s only once every three months. You’ve got lots of time to recover and you almost forget the experience….. But don’t be fooled, hormone therapy is not a fun ride. I’ve had two major negative response: hot flushes,which seriouslyimpactone’s sleep, and a serious loss of stamina when exercising-not surprisingly,because I have no testosterone.Thehotflushes hit you regularly but it’s those at night which make a lastingimpression. The loss of stamina has gottentougher as the treatment has progressed.And remember, this is aside from the complete loss of libido and erectile function (if you’d got it back, in between!)-‘you lose your software, your firmware, your hardware, your desire, your ability and um.. anyhard evidence’. In addition I’ve lost a lot of my body hair which is no big deal;my skin has dried considerably;my balance has been affected (although I have complicating factors here) but,those aside, there are a lot of other possible side effects, far moreserious. Doctor Walsh’s book spells them out in some detail,moresothan the doctors do, be warned.The message is to keep as fit as possibledespite the increased effort required. Don’t lose muscle mass, don’t put on weight, watch your vital signs…..and don’t listen to the little voice that says you can’t do it, because that’s tempting. You can and you must push yourself.

 

I’m a year into my hormone treatment. Along the way, I’ve had three PSA readings which have come out at ‘below 0.01-undetectable’. That’s great, but it’s also what it shouldbe,given that I’m on ADT.  I’m battling with the impact of the interrupted sleepand my running,which I try to do five or six times a week,is becomingtougher with each injection. My exercise routine is less impacted, strangely, than my aerobic exercise, but it too has suffered. My body shape has changed, subtly, with my fat moving from my hips to my belly, though I’ve been able to keep my weight down without much effort. It’s not great fun, though, I confess.

 

How long does one stay on this LHRH/ADT stuff? At the time I began writing this tome, my  oncologist  had just come back from a high level overseas oncology convention where this very issue was debated. Despite what Doctor Walsh notes in his book, namely,  that there is no benefit inextending hormone therapy beyond 9 months,more up-to-date evidence suggests that 18 months is the ideal lengthof time. Less, and you don’t give the body enough time to work on the weakened cancer which has survived radiation; longer, and you take a hammering along with no evidence of further benefits (at least that is how I understand it).

 

I’m nowinto my second year on LHRH agonist therapy. I work for a church and I’ve adapted my life and my workday (with thanks to my colleagues) around the impact of poor sleep. My wife and family have beengreat support. So too have the lads who are part of our little group still undergoing treatment. Lots of laughs as we speak of the struggles and successes. As I’ve said, I try to exercise everyday and I’ve found that even as my stamina slowly wanes, my strength is pretty much unaffected. Most importantly I feel that my faith keeps me balanced and keeps things in perspective. I do earnestly propose, as does Doctor Walsh in his great book, that if you are a prostate cancer sufferer this is a very good time, in the context of your mortality, to carefully consider the reality of ‘The Transcendent’.  This provides not simply comfort (referred tocynically bysomeas ‘acrutch), but a real sense of purpose, which one can practise by simply reaching out to another sufferer…..

 

Keep positive; keep communicating, keep fit and keep the faith.

 

John McPetrie 042020.

 

 

Thulani Sibisi

Thulani’s story is one of a constant struggle to win, despite the odds. He grew up in poverty in rural KZN near to Newcastle. Initially he could only attend school for the first 6 months of every year as he was required to assist on the farm where his parents worked for the remainder of the year. In an effort to assist him with his education they moved and built a house in Blaauwbosch so that he could attend school. But life was still hard as he would have to rise every morning at 4am for the 9km walk to the local school.  Like many of his generation he left school before he had matriculated to seek work in the city.

As luck would have it he got a job as a gardener with Johan Rupert, eldest son of South African business tycoon Anton Rupert. Whist working for Johan he saw a marathon on TV and proclaimed that he could run faster than the athletes competing in the race being broadcast. Johan decided to see if the young man’s boasting was for real and assisted him to enter his first race, the Soweto half marathon.  He placed 5th and his running career began.  He was assisted along the way by a number of famous sporting celebrities, from Springbok rugby player Morné Du Plessis, who organised him his first pair of running shoes, to Johnny Halberstadt, who organised him his first full set of kit, to Bob De La Motte who became a trusted friend.

In 1983 he left Johan Rupert’s employ to join the Frontrunner shop in Sandton and pursue his passion. He was given time off in the mornings and afternoon to run and he began to make rapid progress under the coaching of Tony Frost. But there were still obstacles. These were the days of Apartheid and freedom of movement was against the law. Running alone without a ‘dompas’ could land you in jail, but thankfully there were men who were willing to help. David Flood, the owner of Deans clothing store in Sandton, would often accompany Thulani on his bicycle. Nothing could hold Thulani back, he was hungry for victory.

The training paid off and he soon began placing amongst the top athletes of the day. Placing 2nd place in The Peninsula and Stock Exchange Marathons in 1985 earned him a place as one of the serious marathon runners of the day. But it was the Two Oceans title that he really wanted. In 1983 he had been dropped after 43 km’s by the formidable Bruce Fordyce and he had sworn that the next time he entered the race he would win it. But he knew that guts alone was not enough, so he took his time and learned the strategy required to compete against the elite runners of the day. By 1986 he was ready. His only obstacle was to find the money for a plane ticket and accommodation in Cape Town. He went back to his old boss Johan Rupert, who booked him a plane ticket and accommodation. He jokingly told Thulani that if he didn’t win he would expect a full refund. He stepped onto the plane and couldn’t believe it when he was ushered into business class. He couldn’t believe that only 5 months before he had been sitting in the back of a police vehicle, arrested for not having a ‘dompas’. He won the race and sent Johan a video of his performance to thank him. He had earned his place as one of the top athletes in the country.

In 1987 he finished 2nd behind Thompson Magawana, who is still the record holder. Unfortunately he had also reached the end of his career as a runner due to continuous problems with stress fractures. But his greatest challenge still lay ahead.

In 2012 he began experiencing urinary and bowel problems. His condition worsened and it was when he collapsed on the way to work one day that he realised that something was seriously wrong. The timing could not have been worse, it was just before Christmas and although the doctor had already picked up that there was a prostate problem with the digital rectal examination, he would have to wait until after Christmas for the PSA results. But cancer cells don’t take holidays and Thulani’s body had had enough. On Christmas day his prostate cancer caused a blockage of the urethra (the tube that transports urine from the bladder out of the body via the penis).  He thought that drinking lots of water would help to clear the blockage. This only served to make things worse as it caused his bladder to distend. Unable to urinate he was taken to hospital and catheterised. The PSA tests confirmed a strong suspicion for prostate cancer and he was placed on the waiting list for a biopsy. The results of the biopsy confirmed the diagnosis of prostate cancer and treatment was initiated.

I asked Thulani what he found the hardest about his ordeal. His answer encapsulates the typical male sense of denial when it comes to serious health issues, “my biggest challenge was to accept that I had prostate cancer.”

With the acceptance came the realisation that something more needs be done to create awareness about prostate cancer. Today Thulani uses every platform available to him to talk about his experience and to encourage men to be more responsible about their health. He is one of the founding members of the Soweto marathon and he hopes that this event can be used to educate men within the community about prostate cancer. He believes that men need to support each other more. His own life bears testimony to this.  He has weekly contact with two of his old running comrades, Johnny Halberstadt and Bob De La motte, despite the fact that both live thousands of kilometres away.

He believes that his life has been spared for a reason and his purpose now is to help men to be open about prostate cancer. He has the tenacity and motivation to make a difference in the lives of South African men. His victory now will be to save lives by motivating men to go for screening and to give support to those who have been diagnosed with cancer.

By Andrew Oberholzer CEO of The Prostate Cancer Foundation.

From an interview conducted in September 2015 with Thulani.