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 BRONZE 
This member is a YANA Mentor This is his Country or State Flag

Paul Matthews and Sashi live in New South Wales, Australia. He was 50 when he was diagnosed in August, 2017. His initial PSA was 4.40 ng/ml, his Gleason Score was 7a, and he was staged Unknown. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

Details:

Gleason 3+4=7, PSA = 4.4. Biopsy revealed 4 lesions in right and left mid peripheral zone. ECE on Left mid zone.
Specialist : Dr Bertram Canagasingham
Surgeons : Professor Mohamed Khadra
Dr Yuigi Yuminaga
Dr Kam Beattie
JMO : Dr Sangha Sukhmandeep

Prior to surgery:

I had been on "watchful waiting" for two years now, after having borderline PSA's at age 48. With a family history of prostate cancer (both my father and his brother have had it), PSA readings of 4.4 and occasional difficulty peeing in the morning was enough. I was referred to Dr. Bertram Canagasingham.

After the initial DRE and CT revealing not much, it was decided that I should go for the full MRI scan. The results were plain, there was definitely two places where something was wrong. A biopsy would be necessary.

Until age 50, I had been the picture postcard of perfect health. Then, in January of this year I was suddenly taken down with a serious case of viral meningitis in my head which sees me hospitalized for 5 days. Then followed gastric trouble, which then leads to a Laproscopic Cholecystectomy in July.

Now this.

I'm given two options for the biopsy: public or private. I'm not insured however our family has long had our own health "savings" account (which was quite healthy) so finance wasn't an issue.

In the case of the biopsy, Dr Canagasingham explained there was a clear benefit in going the private route, as he would be able to use a partly robotic procedure (which links with the data supplied by the MRI scan) that didn't involve penetrating the bowel and had significantly lower risk than the more traditional anal procedure performed at the public hospital. It's a general anaesthetic procedure.

$4.5k and a few weeks later we have the results. Gleason 3+4=7, fairly aggressive but appearing to be entirely contained within the prostate. Four lesions, both right and left. No doubt about it, I have prostate cancer and something has to be done.

Dr. explains the details and I also do my own research. The recommended option is robotic radical prostatectomy. Dr. explains that if I choose the radiation route and if this ends up not working, then surgery will then likely become impossible later.

To say I'm stunned is an understatement. I really don't think it sinks in. Not until I work out that as a result of the surgery I'm going to lose my ability to ejaculate - and possibly more.

I am devastated. Ejaculation has always been so much an important part of who I am sexually – perhaps too important. The clock is now ticking.

"When will be my last time"? "What will it feel like"? "Will it be with my wife or will I be alone"? "Is it possible that my "last time", could now have become our LAST TIME? What's it going to be a like to be a man who isn't a "man" any more? Is this It? Will I be dead? Will I even survive what looks to me to be like a very risky procedure? Is it even worth living this way?

Back 13 years ago, I had lost a very good friend (Norm) to prostate cancer. He worked all his life, retired at 65, bought a new ute and was ready to take on the world with his grand national tour. Six months later he was in hospital. Three months after that, he was dead. Killed by the chemotherapy.

No. Just.. NO. I could not let this happen to me. I owed it to my kids, my wife and Norm's friends who still today lived a dream that Norm once had and that was now coming true. No, there would be no question. I was going to have the surgery.

My father (at age 67) had an open prostatectomy done around that time and had survived, albeit with no sexual function and incontinence issues for years afterwards. His PSA has remained unmeasurable to this day.

So, all there was now, was to decide how it would be done. Again, I had two choices: go through the private system with Dr. Canagasingham at the controls, or subject myself to the vagrancies of the Australian public health system.

Unlike for the biopsy though, this time the scales tipped in favour of the public option. With the robotic procedure now available in Nepean Public since 2014, there was negligible difference between the likely outcomes. The only downside was that I wouldn't get to "choose" my own doctor and would also have to go on a waiting list.

With the private procedure now costed at around $28k (of which over $17k was just the hospital itself), my fate was sealed. Go public. I could not justify $28k of my family's health fund simply for the benefit of choosing who would sit in the chair on the day, when the outcomes regardless would likely be the same. Even Dr. Canagasingham agreed and he spared no time writing out the admission forms to Nepean Public, assuring me of the quality of the team at Nepean and that he was absolutely confident the result would be a good one.

Right away I'll qualify a few things about this decision. While many might argue in favour of the private option and suggest that it's all important to ensure experienced hands are on the controls on the day, after having now gone though the procedure I tend to disagree.

One distinct problem with the private system in Australia is that private hospitals are rarely equipped to handle emergencies and unexpected complications should they arise. They simply aren't large enough. For smaller, less complex procedures they're fine.

We've all heard of cases where a patient has undergone a complex procedure in a private hospital, only to have a patient transferred to the public system after something happens that the private one then can't deliver on, or otherwise leads to an emergency in which the private system just can't move fast enough. We've also got to consider what happens in these "emergency" cases, where costs can absolutely blow out to hundreds of thousands of dollars very quickly, well beyond their initial "quote".

Whereas in the public system, the hospital (in this case Nepean) is large enough to not only have a full emergency department tacked on the end (with a full set of resources to match such as in house, on site pathology, radiology and imaging) but also has just about every other thing anyone is ever likely to need – at very short notice and easily at hand – should it ever be needed.

Most importantly, the public system has at its' disposal not just one "hired gun" specialist, but a whole team of specialists of which many are on staff and ply the wards of the hospital every day, ever ready to step in on an emergency should it arise.

They may be much younger. Many are interns. However in the case of someone on a robot with micrometre accuracy and with arms rummaging around inside my abdomen, I think I would prefer those controls to be handled by someone a little on the younger side, thanks.

Being an Electronics engineer myself, I know how my own "fine motor skills" soldering delicate electronic circuits at 50years of age are now a mere shadow of what they once were when I was 25. In my case, I'll choose youth over experience on those controls any day, especially if the older and more experienced professors are still in the room watching on – as they generally are.

I ended up having a surgical team twice the size of that which I would have ever otherwise had if I had "gone private". When things got complicated and went a little bit left of "normal", this team worked together and got the job done.

I'd rather have a large group of young surgeons looking over each others' shoulders and catching anything that might be out of place, than place my life in the hands of an elderly and probably overpaid "specialist", for whom I am possibly just another of hundreds he has "done" this year and for whom "extra ordinary" surgery might have become a bit too "ordinary".

My initial plan was to delay the surgery until March 2018 because January / February was otherwise an extremely busy time for me where I would find it very difficult to "disappear" for a month. However that all changed when Nepean offered me a place on 7th November, when someone else's procedure had to be postponed.

I took it.

Now the clock really WAS ticking. I had three weeks to get my business affairs straight and clear a month where I could recover without the business falling over while I rested. I also had three weeks left with a prostate.

My emotions were all over the place Up and down like a yo yo.

I would be required to attend a pre op session a week beforehand for bloods to be taken and paperwork to be completed. I also was able to schedule one visit to the pelvic floor physio before I went in.

So the clock ticked and ticked until finally, the last tick.

Tue 7/11/17

Surgery day. Arrive at 6:30am, go through pre op. The moment has come. I prepare for the flood of tears I knew would come on my side and indeed, they flow.

My sexuality was such an important part of my life for 35 years, such a driver of everything I feel I was. But now I'm going to lose part of it, never to return. It's like I'm at my own funeral.

I'm wheeled away from my wife and in to the room next to the theatre. I get up and go for a pee for the last time. The female anaesthetist says hello and goes through the motions. While inserting two canulars (one each arm), she injects a tiny aceditive intended to act as a local anaesthetic for the canular area. To her surprise, I experience a mild dizziness straight away. This prompts a change of strategy for her anaesthetic team. They decide this may have happened as a result of my viral meningitis earlier in the year.

It's becoming clear that Dr. Canagasingham isn't present for the procedure, instead I meet the head surgeon (Dr Yuigi Yuminaga) who will be performing, then am wheeled into the theatre itself which is a hive of activity with a team of at least six beavering away.

There's a little issue with the robot which is quickly resolved. Before long, the familiar pain begins to creep down my arm from my right hand as Michael Jackson's "milk" is administered. However unlike previous times, I can't seem to make fun of this situation like I did twice in the past year. For some reason.. this time it's serious. Damn serious.

I'm falling. Blackness begins to surround me with just a brief closing dot of consciousness ahead. It's not like before. I'm falling into the pit of hell. I don't know what's going to be waiting for me on the other side. Then… nothing.

Unlike previous times and even though I'm utterly unconscious, I feel the passage of time. The first thing I feel when I wake up is that it's been a long time. A very long time, since I went under.

Then, it hits. Excruciating pain.

It feels like I am absolutely busting to go to the toilet, only the pressure is multiplied by ten times. My bladder feels like it is exploding. It's absolute agony. Through the dizzy stupor of post op awareness, I begin to scream for help. As loud as I can.

I'm screaming. I'm in pain, trying to tell the nurses what I am feeling. Again and again "help me help me help me I'm going to explode its agony agony help me help me". The din continues, no doubt now to the concern of all there present.

Almost in an instant, another drip of pain killers is on the line on my left hand. I'm being handed water and two Endone tablets plus a cocktail of other drugs to relax the muscle spasms around my bladder which is causing most of the pain as I wake up. I swallow.

I'm wheeled out of post op, still screaming, in to the ward adjacent where my wife awaits. The nurses pick a bed spot as far away as possible from everyone else. My screams have now settled into quiet moans, through a drunken stupor.

It's 4pm. I went under at 9am. I've been out for seven hours. Clearly something didn't go exactly to plan. I later learn that it took me over two hours to come around after surgery, which in turn took five hours. The surgery had been successful; however I had lost more blood than anticipated (500ml).

As the cocktail of pain killers takes effect, my wife softly strokes my head and I fall asleep. She will stay by my bed side until 9:30 that night tending my every need. I eventually have more drink, am able to have a tub of custard but that's about it for food.

I try and eat more but then throw it back up. The drugs and anaesthetic have obviously put my digestive tract to sleep and it is still struggling to wake up. Eventually the pain killers dull the catheter pain in my bladder enough for me to bear it and stay awake.

Then it's sleep time. The day is over.

Wed 8/11/17

First day after surgery. The pain is now under control, they take my bloods for analysis. Dr. Yuigi arrives and we talk about what happened the day before. They are confident they have got it all and that I should have a full recovery.

They're worried about the blood situation. Creatinine is high at 118 umol/L. Doctor is concerned that I have a slight pain in the right side of my back and that this could be possible damage to the urethra from the kidney causing drainage problems and that I might need to have a perc neph tube inserted.

It is decided early that I will stay a second night under observation and that I should try and walk and pass poo during this time. My wife arrives and helps me all day with all the things I can't do my myself and the public hospital nursing staff don't have time for. She is my rock.

I'll add to casual readers that this is crucial if you ever choose the public system route (for anything!). Public hospital staff do not have time to cater to your every whim or need. For that, you need your "next of kin". Not just to come visit and say hi and make jokes, but to be bed side with you as much as possible during your early recovery.

They will be your eyes and ears, in a world where you're often too drugged up to pay attention. It'll be THEM who remember that someone's forgotten your drugs at 6pm, chase down fresh bedding to replace blood soaked post op sheets, move food trays, clear away rubbish and make sure you're comfortable.. and to be by your side during that all important first few steps and first visit to the toilet.

I'm sitting up, checking my online stuff on the laptop and feeling better. I can eat now, and scoff down Brekky and then Lunch.

The drugs continue and keep the pain under control. I take one attempt at walking to the toilet but there's no way I can get anything to come out. Later that day my wife is replaced by my parents who visit. Before long, I am asleep again.

Thu 9/11/17

Same procedure. Collect bloods and then the Doctor Yuigi comes with the result shortly after. He's concerned about the kidney – wants to do a CT scan to be sure. It takes a little while to arrange it. It's times like this I'm glad I ended up in the public hospital because they have all this stuff on site. I'm eating well now.

Pain is steadily increasing again as my colon is now full and I can't seem to get poo to come out. After Lunch we decide this is now a major concern and the nursing staff suggest a small enema to help flush things out, so I don't cause any damage by trying to push.

Typically, just as I'm in the toilet and inject the stuff up my bum, there's a knock on the door. The porter is here ready to take me down for the CT scan. With nothing coming out, now I have to hope I can hold it for the duration. Even here, Murphy's Law rules.

As the first part of the CT scan is completed, Dr Yuigi has been personally supervising the scan and comes out with a very relieved look on his face. He pronounces the scan has been clear. He was very worried that damage might have been done during the procedure to the right kidney urethra but thankfully the CT proves this not to be the case.

There is however still some minor damage there which appears to have been caused by a prior injury, which may explain the (slightly) heightened creatin level.

They're happy for me to go home, once I have passed some solids. Which now having the enema in me for over an hour, I go back to the ward and do quite easily. However there's another nasty chore yet to be done – removal of the drain tube.

This is done with professional care by the nurses however as the tube (about a foot and a half of it) is pulled out of me, I experience extreme internal pain and scream out. Job now done, the hole is patched but over coming days continues to bleed and has to be re dressed the following Monday.

It takes another few hours for the discharge to go through but I'm out and heading home by 8pm.

The ride home in the car is painful on bumpy roads but I am glad to be home. Pretty much start the prescribed drugs and sit in the lazy chair which will be my new home for at least another week.

Fri 10/11/17

Slept well last night in the chair, pain is ever present but bearable and under control with the pain killers. Bowel is thankfully moving OK too now. I am eating more or less normally.

The main source of pain is now the CO2 gas inside my body from the robotic laproscopic procedure which has made its' way up to my arms and shoulders causing intense pain whenever I stand and move about. This alone is enough to keep me on the Endone for several days afterwards and somewhat distracts me from the pain associated with the catheter.

I've experienced this shoulder pain before – when I had my gall bladder out using a laproscopic procedure back in June. The CT scan report confirms that the gas is there and in fact that some gas may even have still been trapped from the previous procedure as well, making my pain situation worse than usual.

Sat 11/11/17

A slow day of pain, drugs and getting used to new habits. I'm too drugged to do anything useful so it's just listening to music and watching TV. I do get as far as going outside for a walk up and down the balcony.

Sun 12/11/17

More of the same. The pain is now shifting from my shoulders and becoming more obvious in my abdomen and bladder again. It creeps up on you and then overtakes you.

The depression is setting in. The end of this seems a long, long way off. I cry and cry, My wife feels so helpless. So do I. I spend daily time at my parents' house next door, just to give my wife a break.

Mon 13/11/17

Pain, pain, pain. So hard to move. Feel like I have been run over by a bus. Its early days, I know I need to give it time. My bladder continues to clamp down on the catheter balloon and send me messages that my bladder is full and bursting. The only way I can null the feeling is with pain killers.

I'm in the car and down to my local GP for my first post op check up. All goes well, he replaces the drain dressing and confirmed it has closed up.

Tues 14/11/17

One week out from the operation. Ironically, I am sleeping better than I have in years. With the catheter in, there is no need to get up and pee all the time, something I would do regularly pre op. So I sleep in the chair on my back for up to four hours at a time.

I use Panadol with Codeine during the day and Endone at night for the pain. Bowel movement is now good, I am using four Coloxyl a day and two Movicol.

Wed 15/11/17

More of the same. Endone, Panadol with Codeine, enough to keep me groggy most of the time and not feeling the pain. I can't do much more than sit in the chair and watch episodes of South Park. Pooing still OK.

In the evening there is blood in the urine bag, deep red. There's some panic, maybe we should go to Emergency with it. My wife is the voice of reason, suggest empty the bag, relax and wait two hours to see if it improves. It does. Urine bag now blood free.

That night I go to sleep in the bed, I am now able to get myself in and out of the bed by rolling. I can sleep on my back and a bit on my left side but it is too painful to sleep on my right side. Eventually though I go back to the chair anyway.

Thurs 16/11/17

Wake up in the chair and thank gawd, the urine bag is still blood free. However then I go to do a poo and pass it (just). After this there is a sudden dark blood stain in the catheter tube and a visible clot. The urine flow then seems to have completely stopped (unusual for my kidneys in the morning). I panic.

Tell the wife we're going to Emergency at the hospital, NOW. I can't afford any time, if the catheter is blocked then my bladder will explode within the hour such is the amount of pee building up. The pain around the catheter is now strong, I take another Endone.

An hour later we're in Emergency. There has been some urine movement in to the bag on the journey but not much. The Emergency doctor take a look and notes there has been movement and also has a feel around my abdomen. The call goes out to the Urology team (who are on site) and Dr Yuigi later comes down to take a look. He declares that things are "OK" and with it moving again, I should be fine until the catheter comes out tomorrow.

4 hours later we're back home and I'm on the pain killers again. The blood level drops and by night it's clear. Stupidly though today, I have neglected to take my stool softeners and a dose of Movicol. I will pay the price for that tomorrow.

Fri 17/11/17

Slept in chair last night, didn't want to risk the bed. Today this blasted catheter will come out, thank gawd. Constant pain with the thing, still feeling like it did on the first day after surgery at times, need Endone to control the pain. Still lots of blood in urine in bag. Very painful to move about.

Wife drives me to post op at Hospital and I'm admitted. Nurse deflates then pulls out catheter. Fairly painful but at least its quick and a relief once it's out. She gives me a nappy. She notifies urology team about the blood. I'm given 1 litre of water to drink then wait in waiting room with instruction to hold for as long as possible and also to go for a walk. When I can't hold any longer then go to toilet and fill bottle which they then measure.

Takes about 30 mins to first fill. Lots of blood in urine, she checks with ultrasound that bladder is empty then sends me back out for a second go. When walking up and down corridor, I bump in to urology team who are headed to theatre. Dr. Sangha hangs around and talks a bit, explains how much of the prostate they took out.

They had to take out all of the left side nerves but were able to spare some of the nerves on the right side. The op went well but there was higher than usual blood loss – 500ml. He's confident I'll get some functionality back and I shouldn't worry about the blood, that will happen a few times more yet.

Takes another 20 mins to fill to bursting again, can hold it just long enough to get out of chair and fill bottle in toilet which is measured again. Another check with the ultrasound and then a third go of the same.

Eventually they are happy with the result and I'm dismissed to go home. Urethra still very painful. Get home, get out of car and fill nappy up immediately, can't stop it.

I'm in a lot of pain, take more Endone. Prepare chair area and bed for possible "accidents". Can't wear any pants because I'm too slow to get them off whenever I stand up. It's either wear nappies (which spill) or wear nothing and use a bottle. I choose the latter. Thank gawd it's Summer.

Pain builds and builds, its pretty obvious whats wrong, I haven't had a bowel movement since Thurs morning. Try and go, scream with excruciating pain when muscles start to push and I have to stop it.

Wait 30 mins then try again, same result, more blood dripping from penis. Wife is getting depressed, so am I, can't seem to do anything to help me. Fuck this I just wanna die. My life is gone. I will never recover. I am in hell, don't know what to do.

Third time around is even worse. I am screaming in pain, my parents from next door come running. My wife has shut down in to depression. I get a glove and lube and feel up my own arse and there's a rock hard solid turd in there.

Parents take a drive to the chemist and return with a pack of suppositories. I shove one up my arse, walk around in pain and wait.

Eventually about an hour later, the urge to try again. To my absolute relief, this time it works and I am able to pass the poo. Pressure relieved, the pain now finally abates and I can sit down.

Sat 18/11/17

Slept in bed last night with nappy on – useless thing. Pee just runs down penis, down leg and in to bed. Most times I awake to the signal of full bladder and empty it in to a bottle when I hurriedly get out of bed. However obviously one time I didn't wake up, and Mt Vesuvius then erupted by itself, soaking the bed.

Got up and emptied the rest of it then just moved to a different part of the bed and fell asleep again, by morning most of it had dried. This was to become the one and only time I actually "peed the bed". Decide that in future I'll sleep naked with a towel wrapped around my penis and legs so if there is any spill, it will be caught. Then just get up every time I awake and fill the bottle religiously. This strategy works and it's dry bed from this point on.

Can only sit in recliner all day. Start up the routine of putting penis in bottle every time I get up out of the chair to catch the unrestricted flow. I can use my pelvic floor to hold it, but only for a few seconds before it starts to drip then flow again. Need to pee every 15 to 30 mins.

Sun 19/11/17

Still pain in abdomen.Will stay off pain killers now. Feeling a bit stronger today. Passing poo OK now. Occasional blood in urine. Can still only move very slowly. Feels like there is stuff jangling around inside my abdomen every time I move, like a water filled balloon.

Mon 20/11/17

Off pain killers during the day but still need at night. Feeling very depressed. Cried a lot after having shower. Penis is tiny but sometimes grows a bit. Look at family photos and videos – will I ever be that person again? I don't feel like I am a man anymore. I don't know what I am now. I am angry.

Tue 21/11/17

Bad night – needed pain killers to get to sleep. Still pee every single time I sit up. Can only work in office 1~2 hours before pain. First trip out – to see counselor – 3 hours return – Wife drove. Filled nappy, felt awful to wear. Returned home exhausted but glad I went. Counselor amongst other things suggested I contact others in similar situation. Find the YANA web site and start reading. Find someone on there I actually know quite well from years ago. Now spent time writing this.

Wed 22/11/17

Last night I get it up to 60 minutes between toilet breaks. Still painful to move in bed. Couldn't sleep much. Dripping urine all day. 3 laps of yard 600m in morning and again at Lunch. Still lots of pain in bladder area.

Thu 23/11/17

Last night I finally got some muscles back in my stomach. Enough to be able to move about the bed and lay in any position except on my belly because the urine flows out.

Now averaging 90~120 mins between toilet breaks at night. Stomach dressings taken off today. Can finally walk at normal pace, did 4 yard laps this morning 800m, 5 laps in afternoon 1km. Back to 87.5kg now, from around 90kg post op.

Continence still bad, drips constantly whenever I walk. Can hold when seated but then just flows out again when I stand up. Seeing the physio tomorrow. Both my wife and my parents are exploring different continence pad options for me, which I will start trying. Feel that if I wear bike tights and face penis up, that might help when walking.

Fri 24/11/17

Urine flows are good at night and no pain killers needed. Pain in morning though, around bladder area. It's like it keeps reporting "full" when I know it's empty. Did 5 yard laps (1km) this morning without dribbling. I'll need pain killers today if this keeps up.

Take a ride to the Pelvic Floor Physiotherapist for a consultation. She takes a pee sample and checks that there is no bacteria in there which could be causing urethra pain. We then practice perineum massage, stomach and pelvic floor contractions. Max 3 seconds at this stage, she warns me not to hold it longer or more damage might result.

I feel like I have taken a step back in to pain today.

UPDATED

December 2017

The day by day record has herein ended.

Progress has been slow, it feels like 2% improvements every few days then a step backwards. Its only this week that the pain has receded enough for me to start getting involved in normal activities.

My attempts at pelvic floor control are working and continence is improving but only in the morning. By the afternoon, the muscles become super tired, stop working and then the rest of the day it just dribbles and flows like before.

My attempts at getting an erection have been a total failure (not unexpected). The strange thing is, it's actually like a whole part of my sexuality has been removed. Fantasies that used to be guaranteed to get me wound up before, do nothing now. Nothing at all.

I still have all this stuff in my mind but it's now "why bother" and that frightens me. The bit that used to respond to all this stuff is gone. Its like a hifi system with a record player and speakers still there but someone ripped out the amplifier. I hope that changes one day.

The pain, and the sexual uncertainty, routinely sends me in to pits of deep depression. I don't stay there, but it happens. It never happened before.

The pain happens when I go too far and don't take rests while working. I can still only work for 3~4 hours before needing a substantial rest break. If I work and stand / move around too long then all my muscles start to tense up. Before long the bladder and urethra join in the chorus and it's that same pain again that I experienced while I had the catheter in.

Exactly one month out from surgery, I have visited Dr Canagasingham. The pathology results are negative, i.e. no cancer was found in any of the lymph nodes or seminal vesicles, only the prostate itself. That bodes well for this being the end of it, although my first post op PSA will be taken in another few weeks.

He's encouraged about the morning continence, and explains that over coming weeks and months the morning will gradually stretch in to the afternoon and eventually the evening, after which my continence will be pretty much restored. It's just a case of letting those muscles grow and strengthen to the point they can keep working all day.

And on the news tonight.. a story about a team in Western Sydney who think they've developed a "prostate cancer cure" in the form of a pill, and that human trials are to commence soon.

Great.

That makes me feel real good about what I've done.

NOT.

Paul's e-mail address is: zordmaker AT hotmail.com (replace "AT" with "@")


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