Dealing with prostate cancer, diagnosis to cure!

Let me start at the beginning (probably best).  At 52 I was having problems peeing.  Most nights I was up 5/6/7 times and my flow rate was down to a mere trickle at best.  My wife was also nagging at me to get it checked. I said ’Hey, its just my age, no need to worry.’

Sadly, I was wrong.  I booked a GP appointment, under duress, and went along expecting a quick chat and then some pee power pills.  My GP decided that was not in order and did a prostate check.  A feel around using my bum as an entrance point.  Not the most comfortable but it could have been worse. I was prescribed pills for my enlarged prostate and also sent for a blood test.  10 days later and a phone call driving home from work.  ”Your PSA is high, I want another blood test”. It was 17. The next one was 19 and I was told not to worry it was unlikely to be cancer but just to be on the safe side a referral to a prostate specialist.

At this point a little research followed, and noting some have PSA in the many hundreds I began to relax again.

Next visit was for a scan at the local hospital.  Very nervous and very isolated (the only time my wife didn’t come with me) your bits are x-rayed. Please note there is no nudity boys - dignity intact. Its nearly xmas and by now you wonder if it will be your last, so you make it as special as you can, but all the while your head says, ’how long have I got’ and ’I must make sure everything is sorted for those left behind’. 

Then you go see the consultant.  Mine was not very personable - well having a specialism that involves looking and playing with arses may explain a lot. In he goes with his clicking machine, through the wall of the bowel for sample extraction.  Mildly uncomfortable and several days of minor bleeding follow. He is convinced there is something to find and so takes a few extra just for good measure.

Then you get a letter. It tells you that 3 days after your next consultants meeting you have a bone scan. Bloody hell. Now I am not stupid and with precious NHS resources they are not going to do that unless they have to. 

More research, ok lets see, how is this measured and what treatment options are there? Well measurement is easy - its called a Gleason score 3,4, or 5 and twice.  First is the most number in the sample and second the worst of the rest (3 is best, 4 mildly aggressive, 5 its got its angry head on). Treatment is varied and advancing all the time.  It depends on your age, Gleason and other factors. It can be various forms of radiotherapy from x-ray bombardment externally, the insertion of radioactive grains, inserted rods for a single mega blast or surgery. 

So you go see your prostate man and take the wind right out of his sails.  ’I know I have cancer as I have a bone scan appointment, whats my Gleason score’. Well that pissed him right off I can tell you. Still he told me I was 3+4 = 7, could be worse.  He refers you to oncology.

You have done the research and you redo it and redo it.  Now you are really concentrating on prognosis and side effects.  The main concern for me is inability to perform and incontinence. These are real concerns, but see later.

First appointment in the cancer clinic, that blows your mind as once again a real reality check sets in.  I will mention at this point that since the bone scan letter comes not a moment goes by when this is not at the forefront of your every waking moment. The consultant is truly wonderful, a woman who explains everything she thinks you ought to know.  You discuss the range of treatments and come to an agreed plan of action. You are placed on female hormones (lady boy injections) to prevent the cancer growing.  Side effects: hot flushes, weight gain, fatigue, loss of libido. That's ok so as a bloke I am now going to be menopausal - yep you are.  Tell the ladies and you don’t get a sniff of sympathy. An injection every month in the arse for 6 months before you can begin radiotherapy.

The side effects in reality:

Hot flushes: Your body heats internally from your midriff. The heat expands to the top of your head. You sweat from your head and torso, real workout sweat. It last 2 or 3 minutes. They catch you unawares and come in tranches, one after another, until they have had enough.  Buy a good fan and keep it by the bed.  Mornings are the worst.

Weight gain: That year you spent in the gym has just been taken away in its entirety.  I put on over a stone in weight.

Fatigue: You are not simply tired, you are devoid of energy.  All day, every day, you are extremely tired.  By the evening you are knackered. You have no stamina, no get up and go.  You will sleep long hours, afternoon naps and in bed asleep by 8pm, and you will sleep, a deep sleep but still be exhausted in the morning.

Libido: Get ready fellas!  Its not a gradual process, a switch that is immediate simply cancels out your sex drive completely.  You have no thoughts towards any woman, its as though sex never existed in your life, you don’t miss it or desire it. It is the weirdest thing.

During this 6 months you will have an appointment with your radiographer.  They will scan you and tattoo you, 3 needle heads to form datum points for the treatment (sniper targets). You are also encouraged to get your daily water intake up to 1.5l per day. You will pee often during this time.

For the treatment itself you will attend Monday to Friday every day for treatment. Get to the hospital then empty your bladder. At the clinic you take your cancer cup and fill it with 1/2l water.  When instructed you pee again and then must consume the whole cup in 5 mins.  Next you wait a whole 30 mins so your bladder is a breaking point and then you can go for treatment which last 5 mins or so, lying very still on a flat x-ray bed with your knees bent, pants down a little but still dignified.  If the bladder is not full enough you get rejected and have to try again in 10 mins or so.  Remember through this you are bursting!! After the treatment you will seek out several toilets until you get a real flow and only then will you start to relax.  The radiographers themselves are truly lovely and helpful people. They are internally cooking you and radiation bleed leads to pain and bleeding going to the loo - both ends! Pain killers and anti inflammatories help. As for the incontinence don’t worry, it means simply when you gotta go you gotta go but you do get warnings, no need for adult size nappies.

4 weeks later another blood test and a week later the results.  By now you are less fatigued and can start mild exercise, maybe. If you are lucky your sex drive may start to come back.  Hot flushes may be starting to decrease in number. Going to the toilet will improve (you hope - otherwise its a short course of steroids and maybe a catheter to resolve the problem). Relief at the good news takes a couple of days to sink in and by now you have a totally different outlook on your life and what is really important.  Oh yes, the sex drive, well that will return but you will be firing blank with little or no actual discharge on orgasm - thats an odd experience in itself but I suppose I will get used to that. Fatigue could take many months to go, just be patient - I am not!

Assuming the result is good and the radiographer hit the target well then 6 months for another blood test and annually for life thereafter.

My final thought - The above is better than the alternative!