My Story – a prostate cancer journey

This article was written by a recent prostate cancer patient and details his post-surgery journey. 

MY STORY – PROSTATE CANCER

Three years ago a polyp taken by my urologist from my urethra was lost between the hospital and the pathology laboratory. Since then he has insisted that I have a cystoscopy every 6 months. As part of this process each time he organised a PSA test and performed a digital prostate check.

On my last visit 6 months ago my PSA level went from very low to 3.8. Whilst this is not very high he then undertook a biopsy on my prostate which revealed a cancer of 7.8 on the Gleason Scale which meant that it was aggressive. This was enough to recommend a prostatectomy.

My first tip then is if your PSA test takes a sudden jump request a biopsy – your urologist may or may not follow this up.

I was then referred to a specialist who uses the robot who booked me in for a prostatectomy. My daughter who is a physiotherapist specialising in men’s health immediately put me on a program to strengthen my pelvic floor (this was 6 weeks prior to surgery) and on a diet that excluded caffeine and alcohol with the aim of losing 5 Kgs before the surgery – the weight loss apparently helps remove fat from around the surgery areas and should lead to a better outcome. Following surgery to remove my prostate the pathology report on my prostate revealed that in 6 weeks the Gleason Scale value had risen to a very aggressive 9.

Note: after surgery you will be incontinent and experience severe erectile dysfunction

My surgery was undertaken with the use of the robot. It is my understanding that using the robot as against open or keyhole surgery results in no difference to your incontinence function but may greatly enhance your erectile recovery, as with the robot your surgeon has a better view of the nerves that service your erectile function and thus he can preserve the nerves. The only disadvantage is that use of the robot will cost in excess of $2500 as components of it are only used once.

After my operation I continued with my exercises (Nuts to Guts) and was put on a course of Cialis (Viagra based pills). Within 6 weeks of my operation my incontinence had gone – I no longer need to wear pads (or nappies as we prosties call them) and importantly there was good “movement at the station”- about 80%.

My tips :

1. a) Definitely commence a pelvic floor strengthening exercise before surgery – the sooner the better and
2. b) If the sexual side of the outcome is important to you, request the robot approach as my outcome demonstrates that it can work. If it is not an issue then you can save money with the older techniques.

Following surgery you are left with a catheter inserted in your penis to allow for urinal flow whilst your surgical wounds heal. Whilst the catheter was in place I experienced excruciating pain every time I had to pass urine. I was given some gel by the prostate cancer nurse that had no effect. Fortunately I was recommended to try a local anaesthetic called Lignocaine which worked wonders.
Two tips on the catheter issue

1. a) Get some Lignocaine – your urologist will give you a prescription and
2. b) Whilst the catheter is still in place look after yourself as an in-hospital patient. I have heard some dreadful stories of blokes doing too much after surgery whilst their catheter is in place.

Whilst your catheter is in place you have a urinal collection bag strapped to your leg that you have to empty frequently. I had great problems with this as it slipped and three times disconnected and urine soaked my trousers – most embarrassing when you are in a shopping centre. I understand that there is a bag available that holds the collection bag. Part of my problem was due to the fact that I was too active with the catheter in place. By the way my catheter was in for 8 days

Tip : Until the catheter is removed do as little as you can to avoid such issues and no doubt your urologist will tell you that this will also help the healing process.

The next issue is the pads that you wear whilst suffering incontinence. I tried 3 brands and by far the most comfortable is a brand called TENA – for ‘’complete male protection” which fits neatly in your jocks and doesn’t slip around. There are two levels – Level1 when your incontinence is mild and Level2 if it is severe. I started on Level 2 but quickly changed to Level 1.

Erectile Function and Medication.

My urologist put me on a program of taking a Cialis pill everyday and1/2 a Viagra twice a week – these are meant to improve the blood flow to your penis and whilst this is probably true they cost $166 a month for 28 pills from your local chemist. Your urologist will probably recommend that you stay on them for 6 months after surgery.

Most private health cover schemes provide for some cover of prescription purchase. However if you get a letter from one of the sexual health therapists at the WA Sexual Health Centre (Phone no 9389 1400) your private cover refund will be greatly enhanced.

Country Patients

Finally if you are a country patient who lives more than 70Kms from the nearest specialist (I live in Bridgetown and there are no visiting specialists) you can get financial support for both travel and accommodation under the Patient Assisted Travel Scheme (PATS). Importantly to receive this support you MUST join PATS before you commence the process and complete the necessary paper work. I have missed most of this as I only found out after the event, The PATS phone no is 1800 623 131.

Relationship

Very important is the on-going relationship you have with your wife / partner. It is a given that you will be impotent for at least a few months or maybe forever. To this end you have to share your thoughts and desires with your wife / partner. In my case I have a very understanding wife and we talk and joke about my incapacity although following my medication some activity is returning. Finally for me (and us) sex is about no 19 on my priority list but if it’s no 1 then I suggest that you visit a doctor at the e WA Sexual Health Centre.

Me 

I am 70 years old and as above, 2 months after surgery both functions have returned to near normal and a PSA test revealed a value of zero which supports the notion, crucially, that the cancer had not escaped the prostate.

I still get a minor leak on two occasions a) if I lift something heavy and b) if I force a fart. The solution before you do either activity is to do a couple of “nuts to guts” movements

New PROSTIES

A gym class especially designed for prostate cancer patients (known as prosties) is run at the Subiaco Football Club gymnasium at Medibank Stadium in Leederville, every Tuesday and Thursday mornings, with both a 9 am, and 10 am session. The gym is run by a qualified exercise physiologist which means that your $10 fee can be claimed provide your private health cover includes exercise physiology.

The entire sessions are geared to prostate cancer patient needs and it also provides a good forum to discuss issue with men and provides mateship for those who have had the same experience.

Conclusion

20 years ago the “BIG C” was like a death sentence and I guess my thoughts have been down this line until now. It was a shock when told but after going through the surgery and the follow up process 4 months after my operation it is almost a dream – did I really have a life threatening illness.  As a final word I can’t stress too much the importance of seeing the physio and commencing your pelvic floor exercises as soon as you can before your operation and you will find as in my case, incontinence is history

Ron

16/10/2015

PS. It is now Nov 17 2015 and I am recovering from a hernia operation. Why? After I came home within 3 weeks I was (against doctors and physio’s orders) doing heavy gardening on my property, stacked 2 ton of firewood, playing golf and so on. This process is most unpleasant but more importantly unnecessary. So now I have to rest for another 3 weeks and of course no golf so boys take heed!