YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Tim Godfrey and Sandi live in Hout Bay, Cape Town, South Africa. He was 48 when he was diagnosed on September 3, 2009. His initial PSA was 4.5 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c. His choice of treatment was radical perineal prostatectomy. Here is his story.

In September 2008 I went for a medical - PSA was around 4.3. I was sent to a specialist who repeated the PSA and did a DRE. The prostate felt normal and he suggested another PSA in 3 months time.

The second PSA was much the same as before and he suggested a biopsy which he did in his rooms. Three cores were taken from each side as I have a small prostate (~20g) The results came back as atypical but without a diagnosis for cancer

A further biopsy four months later again showed no definite cancer although this time the pathology was "highly suspicious" in one of the cores.

A further PSA 3 months later was measured at 5.3 and I was advised to have a "saturation biopsy" under general anaesthetic. This turned out to be eight cores, of which two came back positive for cancer. After waiting for a year, I was not that shocked at the news. My wife Sandi has been with me throughout this journey and has been a great source of support.

( As an interesting aside, post the diagnosis I found a PSA test from Feb 2007 at 4.13 - that GP doctor kept going on about my high cholesterol, neglecting the high PSA - In those days the normal upper level was considered to be 4.0 - on my latest test it is 2.6)

Having been diagnosed my specialist advised me to get other opinions on treatment although he had not given me his advice. He had spent a lot of time going on about Active Surveillance, at the same time mentioning how young I was. This put me off AS, although effectively that is what I had been doing anyway.

My initial thoughts were towards brachytherapy, however the more I looked into it the more I was put off by the potential side effects. HIFU is available in Cape Town, but it is a new procedure here and someone has to pay off an awful amount of money for the machine. The fact that there are no long term studies on it's effectiveness put me off this route.

After consulting the university academic hospital Professor of Urology as well as another surgeon urologist I have decided to go the surgical route. Sandi and I liked the guy and he could answer all our questions in a factual and honest way. My advise would be to only go with someone you feel 100% comfortable with

I am not aware of any laparoscopic prostate removals in Cape Town, and I am put off by the remoteness of the procedure anyway - I don't think that there are any Da Vinci robots here either.

Anyway my final choice of surgery may be of interest to some - my specialist only does perineal RP's. He started off doing retropubic, and after observing his first perineal op, vowed to never do another retro. The big advantage to him is the significantly lower blood loss (200ml vs 1200ml) which enables him to SEE what he is doing clearly. He says that you cannot easily see the nerves anyway, but claims to have good success in nerve sparing through clear cutting around the prostate. For those considering surgery, its important to talk to your surgeon about success rates and experience. He studied the perineal procedure under Lance Coetzee in Pretoria, and has done 170 perineal ops and about the same retropubic prior to that.

I am booked in to the Christiaan Barnard Memorial Hospital on the 3rd November. I have provisionally set myself two recovery goals

1. Celebrate my birthday on the 21st November
2. Ride the Argus cycle tour (the largest timed event worldwide) It will be my 10th tour.

In the meantime I am working at improving my fitness levels and eating healthily, as I am convinced that these will improve my recovery rate.

I'll add some more after my surgery.

 

UPDATED

November 2009

 

 

Had the RPP on Nov 3 - The surgery was about 3 hours and I came round early evening. I was kept in high care which was unpleasant with drip alarms going off all night and a lot of noise from the night staff. I had been given an epidural which was wearing off, leaving my legs full of pins and needles, making sleep difficult. I also bled more than usual (400ml), but the surgeon said all had gone very well - he had hit the plane well, easily removed the prostate and was pleased with the bladder reconnection.

The following morning I was moved to a private room with amazing views of the city, mountain and sea. It made a huge difference to my well being and if you have the opportunity to have your own room it is worth paying for.

I was discharged on Friday 6th November and am now recovering at home. The pathology shows PCa in both lobes, no extra capsular or positive margins. Gleason upgraded to 3+4.

I battle to sit for long at the moment but can climb up and down stairs fairly easily. Like many others, the catheter is the biggest issue at the moment. I have had intermittent bleeds/clots and some bladder spasms - which is a feeling of a full bladder with an urge but inability to urinate. I am now on antispasmodics, as well as 6 hourly pain meds, 2 daily antibiotics and 1/day Movicol, a PEG stool softener. Some practical things to help that I have used are:

- sections of ladies stockings to anchor catheter bag works well

- I remove the bag completely when showering

- Baby wet wipes for cleaning wound/backside

- separate big bag for nighttimes

The catheter remains in for 14 days from op. My urologist is very against earlier removal as the bladder neck must heal correctly and is the key to continence recovery. I am happy to live with it for now therefore.

That's all the updates for now.

Later: 19 November 2009 Yesterday I had the catheter removed, 14 days after my surgery. As I mentioned my uro, Dr Dave Bowden, is against early removal to allow proper healing. If you want your continence put up with the catheter.

So like everyone else, I have learnt to live with my new friend. It's manageable. I have had a lot of bleeding into the catheter as well as a bypass bleed linked to doing a bowel motion.

On the subject of BM, I have had to juggle my Movicol (PEG stool softener) to try and get a gentle bowel motion without diarrhoea. So I do not take it every day. A very good tip when sitting on the loo is to lift your arms above your head - this lifts the abdominal organs and allows easier bowel movement.

Anyway, back to the catheter removal - It was uncomfortable, a mix of ticklish and pain. It came out with some blood that the Dr suggested could be a haematoma. I had my pad inserted in my undies and Sandi was handed the pack of pads to carry.

Well needless to say I have not had any leaking and seem to have full control of my bladder. I'm going to aim for 1.5 litres water today to test things, and flush the system, as I have a weaker flow and blood in the urine. I will call the uro tomorrow to give an update. With my first pee, quite a lot of 'debris' were ejected.

Over the past few days I have managed to walk about 4km per day, with catheter. This I would highly recommend - it promotes the healing, psychologically and physically. The catheter does rub and pull a bit, put up with it.

I have also given up my ring cushion - with the perineal cut that I have it kind of pulls at the outer regions of the incision. You have to have it at the start but later I believe it becomes a hindrance. What did work well for me at the beginning was to sit in an aluminium frame fold up nylon camping chair with my ring.

I feel great now the catheter is out and I am dry, and Dave is confident the PSA test in 2 weeks time will go well. Next to robotics, he is convinced that the perineal op is greatly advantageous to the retropubic RP. He felt right from the start that I would have no continence issues.

 

UPDATED

December 2009

 

 

Four weeks after my op had the first PSA which came out at 0.02. Not as low as I had hoped but still good and may still drop.

No incontinence, but ED. We decided on 5mg daily Cialis with either 10 mg Levitra or 20mg Cialis on demand. I was also keen on a VED but my doctor is concerned about possible damage to the anastamosis [I thnk Tim is referring to the surgical join in the urethra], so I will leave that for now.

Otherwise I'm recovering well - the wound is a bit tender still but I have been doing a lot of walking which causes it to rub.

Urination is a bit tender and I can sometimes feel the anastamosis, but the main thing is that continence was 100% from day 1.

I started work today, 5 weeks after the op, and am doing a 5km charity walk tomorrow evening. PSA follow ups are 3 monthly for 2 years.

Thats all for now. This is a brilliant site. Thanks to Terry and all the contributors

Regards Tim

 

UPDATED

March 2010

 

 

I was relieved to get my PSA reading in at <0.01. This had been worrying me since the one month PSA was 0.02. My uro was not concerned - his theory is that bits of prostate tissue left behind can survive for a while, but lacking the proper vascular structures, will die off.

So with the cancer no longer an issue, incontinence never being an issue, my focus for now is on ED. I am taking daily low dose 5mg Cialis, have purchased a Vacurect™ VED, and have started using Trimix injections. Some observations

The VED works well and produces usable erections although the erection is only after the ring

Higher dose Cialis, Viagra and Levitra do little or nothing

The trimix works to give normal erections, although I do get some pain. I started off at 0.5 ml dose which was far to strong and after 2.5 hrs was getting worried. I have reduced to 0.15ml and that gives 1hr plus still with pain, so will look at 0.1ml next. These doses are low, and the Cialis my be having a synergistic effect.

Doc still very confident that all functions will return, says give it 6 months. Still happy with choice of treatment and choice of urologist

Tim

Tim's e-mail address is: timandsandi@gmail.com