MY STORY

In late 2013 at age 56 I was diagnosed with Prostate cancer, and in January 2014 had a robotic removal of my Prostate. I'm a single hetrosexual male, divoced and living in the inner west of Sydney. I am average weight and height, in good health, and have a positive disposition.

I have a family history of Prostate cancer so I have been checked each November. In 2013 I went early, the blood test PSA was 4.2 (average is around 2.0) and my GP suggested waiting 6 weeks as her DRE (digital rectal examination) may have angered the Prostate. In any case, she advised, it may have been an inflammation that would settle.

Several years earlier I'd returned a very high PSA (24) and my doctor referred me to a Urologist who after a DRE determined I probably had prostatitis, which is an infection. This jived with me feeling 'off' around the time of the blood test. He prescribed antibiotics and the PSA did indeed drop back to normal.

Knowing that it was possible I just had an infection again, helped my mindset.

But by late November my PSA was still elevated and I was referred to a Urologist in Sydney - Associate Professor Manish Patel. He did a more thorough DRE using 'the American method', different in that I bent over his bench, whereas all my GP examinations were lying sideways. At this stage I stress that DRE’s do not hurt at all.

He discerned ‘softness’ on one side, which was hardly conclusive. He suggested an MRI scan, which carries a cost of about $400 in Australia. That produced an image showing a hazy mass occupying 80% of the prostate. A biopsy was booked quickly, I paid extra for a general anaesthetic. Nothing I’ve read anywhere says that being awake for this is a good idea. The cost was again about an extra $400, as I have hospital insurance in Australia.

The biopsy was fast, I was unconscious for less than an hour, and at midday went home feeling tender. I pissed blood for a few days, and had a reducing blood presence in my ejaculate. This ranged from full blood several days later, to almost zero in three weeks.

Several days after the biopsy Dr. Patel confirmed of the 12 samples removed, 8 were cancerous and it was rated 7 on the Gleeson scale, or ‘semi’ aggressive. It took me 5 seconds to agree to have the prostate removed. We had to wait 3 weeks as it was Christmas and the operation was on January 10, 2014.

The low point was a bone scan a few days after diagnosis, to rule out any cancer breakouts. This was a nervous wait, it came in clear. Had there been a breakout, I had resolved to die happy and not go out in a blizzard of chemo and radiation. No kidding – I was resolved. I have friends I’ve buried because of this, and had another one at that time in a Hospice. He died a week after I was cured by the removal of the Prostate gland.

This is a fatal disease if men don’t act fast. Don’t be lulled by the reports of slow growth, mine was 7 and had I not acted fast I would be facing a very early death.


PREPARING FOR THE OPERATION

In the meantime, Dr. Patel introduced me to his support crew. I was booked with a principal sports Physiotherapist, Sean Mungovan, at his practice at Westmead Private Physiotherapy Services. He is a fairly intense, fit guy in his 30’s who hammered the realities of his experience in this field. He did an ultrasound of my pelvic contraction function.

This was the Eldorado moment for me, as I had at least 18 months solid Pilates classes under my belt, and I knew what a pelvic contraction was, despite not bothering too much about it during my Pilates classes. I’d stepped up to four classes a week some months earlier, loving the flexibility and the gentle nature of the exercise. Pilates had already given me the flexibility of a young man, and I felt fit and vital as a consequence.

Earlier on it probably also gave me the confidence to pursue a new girlfriend - Suzanne, who at 47 was awesomely fit but in a lovely feminine way. She wasn’t a 'ripped gristle-tripod' like some gym girls. I knew that dating her meant being and staying fit (in body and mind) and Pilates was that pass card. Thank goodness! Poor Suzanne – I’d met her in October, and in December was looking down the barrel of uncertainty.

Dr. Patel was open to my questions about recovery. I didn't want to be incontinent. Most importantly I didn't want to be impotent. He suggested as much 'stimulation' as possible, pre-operation. I took to his orders with gleeful gusto.

Sean the Physio had me doing a lot of pelvic floor contraction exercises. His first session culminated in giving me a brown shopping bag loaded with incontinence pads, at a net cost of $60. It was a powerful whack on the head, to say ‘hey, every man in incontinent after the operation’. He had a plastic anatomy toy on his desk and gave me the whole chapter and the whole verse on what would happen.

I went back and had several exercise sessions, all based on pelvic floor exercises. I was doing them in bed, I was doing them in the car, and I was told to walk 12,000 paces a day. An iPhone app helped me achieve this. *

Although mine was a short treatment period, I listened to Sean and did what he said. It did impact on my work hours. I had time off, and I also had funds devoted to me for treatment. These are essential elements to the outcome.

Interestingly I have met men since then who were not refered to a phsiotherapist at all. Many had not had a proper discussion with their Urologist about impotence either.

There is no 'standard' approach to pre-operative care, or indeed post-operative care.


WHAT DOES THE PROSTATE DO?

This is a layman description. It is a gland through which runs the urethra. The prostate makes semen, which is mixed with sperm at the time of ejaculation. A two way 'valve' switches the urethra from the bladder, to the delivery pipe for the sperm and semen mix.

Without a Prostate, you still manufacture sperm, but it has nowhere to go. Removing the prostate has the identical effect of having a vasectomy. I'd had one of those, so I was shooting 'blanks', in other words on orgasm I was producing semen minus sperm.

The vasectomy had zero effect on sex or orgasm. Having the prostate removed means no ejaculation, but you still have an orgasm. Minus the mess. More on this later!


THE OPERATION

On January 10 I checked in, and within an hour was out of it. The operation was performed with a Da Vinci machine. The anesthetist had called a day earlier to negotiate his account – ‘around $2000’ and the hospital – Macquarie Uni had me in for a pre-op consult earlier. That was helpful - the specialist nurse showed me the catheter and bag system that I would wear for a week after the operation.

The operation takes around 4 hours, it is not a short operation. I had six small incisions, with no external stitches.

Because the cancer was entirely inside the gland, Professor Patel could filet around, and 'preserve' the layer of erectile nerves. He told me later they were 'invigorated' and 'active'. I'm not sure this is discernible, but it was psychologically helpful.

That same operation day I walked up-stairs in hospital. The hospital physio put a giant TICK on my chart and I didn’t see her again.

The one big discomfort was the gas. They inflate your gut, and it is very uncomfortable when you stand and walk, but in your shoulders! Like being hung on a hook from each shoulder. Lying back down fixes it. Knowing about that helps too, they forgot to tell me, so I was confused why I hurt so bad.

I was released within 48 hours. The pain was only Panadol threshold! Just six days after the operation I was unwired from the post-op hardware (a catheter, with a bag strapped to my leg) and I discovered to my immense joy that I was NOT incontinent. Far from it - all the mental prep work the physios have done was wasted, as I was operating entirely normally!

While wearing the catheter and bag, I would visit the pub for some essential hydration. Being summer, the bag was strapped to my leg under my shorts. I went to the urinal, pulled the leg of my shorts up, and released the drain valve. The guy who came in saw just the rush of urine from the bottom of my shorts, and assumed I had an enormous penis.

Word spread!

When the catheter came out  (it doesn't hurt at all) the nurse whacked a pad in my under pants and said ‘ every man in incontinent after this’. I was NOT.

Next day Dr. Patel called to advise the pathology showed ALL the cancer was contained in the removed gland, and there were no breakouts. I did a mental cartwheel.


THE RECOVERY

I went back to work on day 5 (after the op) for a few hours. On day 6, I did my usual journalistic work from my kitchen table. And I was down to the pub every day for a beer or three as well. After a week there were no more daytime sleeps.

You are weakened, and need to recover. Physical exercise is not possible, other than some gentle swimming which I recommend, and walking.

Dr. Patel ordered me, so I did it. I became a porn connoisseur. Tasteful always, and stricly in the name of recovery.

Just days after, I had sensations, and a few weeks on, I was 35 – 40% there with an erection. Which was very encouraging. I had my first orgasm - alone, practicing doctors orders to maintain a lot of 'stimulation'. That was a milestone.

My girlfriend dumped me late February which wasn't unexpected but it was a shame.

In April I was confident enough to start dating again, and discovered being upfront about my condition helped build trust. It also opened up some (often funny) stories about men who can't get it up in normal daily life. I found a girlfriend who was happy to see how my condition could be improved with the assistance of fine food and wine. Music and candles all helped too.

By about October I felt almost fully recovered. This is written in December (11 months on) and I am still on a daily dose of 5mg of Cialis, which the Urologist says assists the nerve recovery. It is expensive still, not yet off patent like Viagra. These drugs work slightly differently - Viagra which comes in 25, 50 and 100mg doses, clears your system after the effect ends, within 4 hours (I am told). 5mg of Cialis is roughly equivalent to 12.5mg of Viagra, and Cialis remains in the system. Anyone with better info, please correct me!

My whole urological 'system' is different, but good different. For the first few weeks I had cramps if I waited too long to piss. They went away. The urine flow is awesome now, I could have a pissing competition with a 12 year old, and probably win! But I don't think it is a good idea.

A prior year of Pilates really helped my recovery. Please do consider this form of exercise; with its focus on core and pelvic contraction. Most men think it is girly, but once I started, I fast got back to how I felt as a young man! Many guys tell me it cures aches, pains and sore backs too.

I had the robotic removal in a private hospital. Don't wait for the public system to schedule you with a specialist down the track that does the old fashioned full operation - you'll be munted.

I got this monster (Gleeson 7, Stage 2) just BEFORE it went berserk. It came on FAST, within 12 months of my previous clear PSA and DRE.

I’m the luckiest guy alive. Total out of pocket costs are about 14 grand Australian. Just pay for it. Borrow the bucks if need be. I am told you can hassle your Super (retirement) fund in Australia for an advance. Do it.


MYTHS AND CONFUSIONS

Most Prostate cancers grow slow. Mine didn't. Men assume you can defer or delay treatment or even diagnosis. Don't!

The PSA number is not a diagnosis, it is just a marker. How high can the PSA go? I know a guy, now terminally ill with the cancer throughout his body, whose PSA was SEVEN HUNDRED! He had never had it checked, because he was always well and didn't need to visit a doctor.

Bzzzzt! That was also the fate of my well loved number one lawyer Ross McGlynn, whose help and counsel I desperately miss.

My very good chick friend Zoe is a neuro psychologist, who is by profession fascinated with the pathways from the brain. She did a lot of research for me.

Zoe asked me a few months after the operation whether anyone in the treatment chain asked me how I was. I was surprised on reflection that no one ever did. So there is a treatment gap there, where men less resilient and less supported than I could be left alone and in distress.

That's part of the reason for this Blog.

I've since spoken to many men who have had the diagnosis, and the operation. I'm happy to talk anytime, so contact me at juliusmedia@me.com.

MORE: I have a personal Blog which captures the emotions through this, and other things. Here.

- Julius

* More about Pelvic Floor exercises: With an ultrasound you can see the muscle contract when you clench. At first it is a weak piston action, with exercise it becomes a slamming action.

The activation is similar to when you clench to stop urinating.

Without definite control over the muscle, you'll leak when you exert. This is when you stand; cough; stretch; or brake the car. The exercises are done in a block of ten - clench, count to three, clench again, repeat.

After ten, you are starting to get muscle fatigue so you hold off a minute or two before starting another set. Do ten sitting, then ten standing.

Once the catheter came out, I was obsessed about contractions before every exertion. It was a bit of an ordeal, and eventually I realised I was forgetting sometimes yet not leaking. So I declared myself cured of an incontinence I didn't have.

I got the sense, over a few weeks, that the muscle memory was working properly, and stopped thinking about it.

So if it all seems horrible, it won't remain horrible.