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

BJC and Jean live in Victoria, Australia. He was 61 when he was diagnosed in March, 2004. His initial PSA was 9.00 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Surgery (Perineal Prostatectomy). Here is his story.

My prostate history started in 1998 with a PSA of 4+. I was concerned about frequency of urination and alerted to the wisdom of prostate testing by a newspaper article. We took no action. Subsequent testing through to 2002 saw the PSA rise to 7+ but after DREs by the local doctor and a urologist we decided to take no further action.

In January 2004 I thought it might be time to have another look. The PSA had hit 9+ and the alarm bells started ringing. Despite another inconclusive DRE, didn't find DREs painful just uncomfortable and mildly embarrassing, but that soon passed, a biopsy was the next step.

In a process that took about half an hour I had an ultrasound probe and pair of scissors inserted into my rectum. Again I didn't find this painful at all, merely uncomfortable. Perhaps my description of the equipment is a little misleading. However ultra sound pictures were being looked at and some snipping of 6 tissue samples took place. The result, delivered on a fateful 1 March 2004, was 10% cancer in one sample and 40% in another from the left side of the prostate.

My comment as we I walked from the appointment: 'Well if I'm going to have cancer I guess this one is a good one to get', wasn't appreciated by my wife Jean.

We researched treatment options thoroughly and read extensively about the experiences of fellow travellers. [YANA was invaluable.] We decided Brachytherapy might be the best option. It appeared to have a high success rate and the side-effects appeared less extreme than other choices. However after a cystoscopy (another camera, this time inserted through your penis, again, not painful) indicated that my urethra was too restricted to proceed. (Apparently this form of treatment can enlarge the prostate and if your prostate is already impeding urine flow this treatment extenuates the blockage.)

We then decided on surgery. I use 'we' here because my wife has provided invaluable support throughout. Surgery appealed mainly because it offered the chance of a once-only treatment that would leave me free of cancer and able to continue life as before. Okay, there would be possible incontinence and loss of erections to deal with but the radiotherapy option seemed to have similar side-effects and some possible bowel damage thrown in. Watching and waiting didn't appeal at all although we did flirt with the possibility of trying extreme diets to see if we could arrest the cancer but in the end something was telling me 'get it out!' Furthermore my 'youth', my otherwise healthy state and resassurances about the surgeon led us to feel optimistic about the outcome of surgery.

The surgery took place on 16 June and its now 6 July. I'm hoping to return to work next Monday. I was in hospital for 4 days and during this time received regular pain relief and tutoring in the management of a catheter. I felt quite well during this time and enjoyed the rest, companionship of the nurses and patients and regular cups of tea. I was also able to walk around the ward on the second day.

The surgeon entered my body via the perineum. He seemed to think this was a good option and I'm not sure why however the body position during surgery is somewhat contorted, not that I knew anything about it, and my back ached for 24 hours. My earlier yoga exercise no doubt helped to mitigate the effects.

The pathology report after surgery indicated that there was a clear margin; cancer did not reach to the edge of the prostate. This was an enormous relief, further treatment will be unnecessary and visits to the doctor will be for checks only.

My time at home has been okay. The catheter was a nuisance but it did cut the urge to urinate, particularly if I laid on my side. My bed rest at night was undisturbed, a nice change. The catheter was removed 2 weeks after surgery. This was a painless procedure and it provided some immediate comfort.

Home recuperation has been all about coping with incontinence, the pain of surgery and idleness. There is some urine leakage but this is expected at such an early stage. I do mild exercises to strengthen the muscles around the wound site. Hopefully the leakage will stop completely but it is not going to happen overnight.

The pain at the wound site and around my scrotum feels like sunburn and it doesn't go away. I take four-hourly pain tablets and spend most of my day in a recliner. Its very uncomfortable to stand in one position or sit upright. However I am hoping this will lessen enough to allow a return to work in 6 days. The 2km walk is a daily highlight and I sleep with a pillow between my legs at night.

And one final note: We always ensure my diet is rich in fibre, fruit and vegetables because the bowels do get disrupted during this period of pain killers and inactivity.

I'll let you know how I'm going further down the track and please contact me if I can help in anyway.

UPDATED

April 2005

It's been 10 months since the operation and I'm going fine. Have been tested twice and PSA is not detectable. My general health is excellent and I am engaged in all of my pre-op activities except two. More about that later.

My operation site was the perineum and this area is still sore. Apparently nerves are cut and take some time to repair. The feeling is like mild sunburn and the scrotum is still a bit sensitive to touch. It is also too sore to ride a bicycle (one of the pre-op activities0 but I'm okay on horseback.

I haven't experienced feelings of depression and I was able to go back to work, assuming a regular load, after 5 weeks of rest, mainly in a recliner. I was very thankful that Wimbledon tennis was on television during the recovery period.

On the whole the experience has not caused a setback. In fact, after talking to others, I feel lucky.

There was only minor incontinence from very early in the recovery period and I was able to abandon pads within a two or three weeks although there was one notable occasion when I suddenly felt my legs get wet and a puddle appeared on the floor. Fortunately that was at home. But incontinence is not an issue. The only residual problem is the need to empty my bladder thoroughly; just spend a little more time beyond what feels like the end of urination because there will often be a little bit more just waiting to burst out as I fold back into my briefs.

The other non-activity is erection. There has been no action in this area at all. It has comprimised sexual activity with Jean but we still enjoy some intimacy, perhaps a little one-sided. However, we were amazed to discover that I could still achieve a mild orgasm and a sense of 'completion' at climax and there is no cleaning up afterwards! All is not lost.

I am confident that penile injections would work fine but we haven't sought this treatment despite reminders from my specialist. There's some diffidence there and the need is not vital.

That's the story to date! Its a good story. It can also change your outlook on life in a positive way and in small ways that has happened to me. I hope fellow travellers get similar benefits.

If I can share with anyone on a one to one level please make contact via the email and I will be sure to reply (provided your email doesn't get caught in the spam net).

Best wishes and swift and complete recovery to you all.

Barry Curtis.

UPDATED

August 2006

It's just over two years since the surgery and my PSA is undetectable. I keep good health, still play tennis, ride my horse and don't take any medicines. On the second anniversary my doctor cut the 6-monthly visits to annual.

Since June 2004 we have been busy designing and helping with the building of a new home. You can see the proto-type at www.ralhomes.com.au; its a really interesting concept. We finally moved in at Easter and I commenced a two-year course in organic farming to assist us to live in a healthy environment.

I have found the residual effects of surgery to be relatively minor. I guess there are two.

The first is a tendency to fart at the wrong times. My control is okay in public places most of the time if I find an excuse to stop moving and squeeze. However my family are regularly treated to some Harley-like renditions at times. Its not a big deal but it did cause one of my two most embarassing moments in the stillness of a sitting meditation in my yoga class. I don't do classes anymore. I do however admire the restraint of my classmates.

The second is my inability to achieve a hard erection which, of course, might also be due to age or lack of practice. My doctor regularly reminds me that if I 'don't use it I'll lose it'. However we do manage intimate moments quite well and I'm able to achieve a satisfying orgasm. My wife is very supportive (in many ways) and all in all it is not something we worry about. We have tried some erection aids with limited success. Viagra didn't work for me. The penile injection was about 80% but despite the fact that it doesn't hurt I find it all a bit of a nuisance and tend to avoid it.

That's my story to date. Life goes on and I'd have to say I've drawn a pretty good lot.

UPDATED

September 2007

Am waiting for specialist appointment 6 Sep to discuss latest PSA. Its quite likely further radiotherapy will be required. Will write further after discussion.

Later:
My prostate was removed in June 2004. PSA readings registered as undetectable until Dec 2006. The testing unit installed a more precise machine and I was immediately detectable at a reading of .09 ng/ml.

In May 2007 the PSA was .06 ng/ml and the urologist urged immediate radiation. The radiologist was reluctant to act without further testing. I was tested again in August 2007 and this time measured .14 ng/ml. We agreed to commence radiation immediately as a precaution and because we are travelling to Colombia for my son's wedding in December and wanted to have the treatment well out of the way before departure.

Only one week later I underwent a planning CAT scan. This was to provide data which would pinpoint the target area and therefore facilitate future treatments. The target area is the operation area. The site formerly occupied by my prostate.

On the following Monday treatments commenced at the Tattersalls Cancer Centre in Melbourne. Thirty-five daily treatments are proposed. I am required to drink three glasses of water prior to treatment then strip to my underpants and wander to the radiation room in a hospital gown. The water has the effect of moving my bladder away from the target area. The treatment is painless. Six doses of radiation are delivered to the site from different angles. I am at the hospital for about 40 minutes each day.

I have had my first week of treatments and I feel fine, more so because my football team won their way into the Grand Final at the end of the week. It is expected that I will get tired from the cumulative effect of the treatment. It is also possible that urine frequency might increase and my bowel movements could be disturbed. However none of these things are present at the moment.

We stay in free accomodation in the city which is a real boon because we live about three hours out of Melbourne and we have a great opportunity to explore the city. Its a strange way to have a holiday!

UPDATED

December 2008

Two days ago I visited my urologist for the 6 monthly check. The PSA was undetectable. We talked about my erectile dysfunction and bowel incontinence. These 'inconveniences' are now part of my daily life. Of course I'd rather not have them but they don't have much affect on my daily routine. Apparently the phrase 'such is life' comes readily to Indian people. I must have inherited some of their genes.

As usual, the urologist tried to gently persuade me to try an erectile aid. This time we made the decision to try a vacuum pump. The injections seemed too invasive and chemical treatments did not work. At Australian $660 its a bit of a leap of faith and all we can say at this time is; 'hold on for future reports'.

The bowel condition requires lengthy morning sessions on the toilet one positive being the improvement in my sudoku skills. In addition I wear a light napkin and there is minor 'leakage' during the day and sometimes an 'accident'. Fortunately the accidents are reasonably infrequent if I'm careful with my diet. The big four; rice, bananas, toast and boiled potatoes do make a difference!

Nothing else to report Terry. My busy life continues, bookkeeping for local businesses, golf once a week and continued development of the organic farm. Our latest challenge is to try to separate five lambs from their mothers. They always seem to find a way out of the weaning paddock.

UPDATED

June 2010

In short everything is going well and I am about to have another 6 monthly check up in a couple of weeks. So far, my 6 monthly PSA tests have all been 'undetectable' which is good news.

My residual problems include some minor bowel incontinence, long sessions on the toilet in the morning to ensure I'm not likely to have an 'accident' during the day, the wearing of a small sanitary pad which 'smudges' most days, loss of a full penis erection and some discomfort in riding a bike at the surgery site; the operation was in June '04.

In terms of my daily routine, apart from 'time out' in the mornings as noted above, I am able to do nearly all of the things I might have done without surgery and radiology. The major exception would be sex with my partner which is now somewhat compromised but still enjoyable. I also avoid bike riding but I can ride my horse quite comfortably. I don't take any medication and still have the benefit of a very understanding wife.

That's about it Terry. I have retired as indicated in previous correspondence but still operate a small bookkeeping business which keeps me connected with the community and provides a sense of doing something worthwhile. We also have a small 'farm' of 70 acres on which we run Dorper sheep; the retired person's sheep. They don't require anywhere near the maintenance as the traditional Australian Merino. They are lambing at the moment and we get quite a kick out of watching the lambs band together at play time. Our vegies have been fantastic this year because we have been blessed with moisture.

UPDATED

January 2012

My physical and mental health is excellent. No medication required and I am still working and playing a weekly round of golf.

I wear a small sanitary pad due to minor discharge of anal fluid and minor soiling requires attention daily. Some days are better than others. Stools are usually soft.

Occasionally will have involuntary discharge of urine. This might be once a fortnight but is quite random. Still enjoy sexual activity with my partner despite a limited erection.

I would say that due to recent public discussion on radio and newsletters and the experience of acquaintances my view of the appropriate treatment has changed. I am much more supportive of 'watching and waiting' than I was when this episode began in 2004 or thereabouts.

UPDATED

April 2012

Life hasn't changed much since my last entry. My daily life is largely unimpeded by the effects of past treatments, however, I do avoid bicycle riding due to some tenderness on my rear end but there again, I'm also somewhat lazier these days; I call it a privelege of old age.

There is still some anal leakage. I wear a small female sanitary pad daily. The leakage can be an anal fluid and sometimes, but less often, faeces. However, I do spend extra time on the toilet each morning, usually about 40 minutes, to ensure a thorough 'clean out' in order to avoid soiling. This can be an inconvenience, particularly when travelling. However it has improved my Sudoku skills. During the day I feel stickiness which I wipe from time to time.

Sometimes I'll suddenly urinate a small amount without warning. This doesn't happen frequently, maybe once every two to three weeks perhaps, but it's irregular. Its just another little nuisance.

I'm otherwise fine, happy to be approaching 70 next month with zero readings on the PSA scale and no other medical issues, in fact, no medication of any kind, which is a blessing.

Best wishes

Barry Curtis

UPDATED

May 2013

2012/13 has been great. My annual visit confirmed an undetectable PSA reading and my good health continues. The incontinence has diminished and I no longer wear pads. It is rare to have soiled underpants. Incidences of spontaneous urination are virtually zero.

The lack of erections continues but I'm able to maintain satisfying intimacy with my partner. I don't expect much to change in this regard. My partner continues to be very supportive and this is a great help.

I'm cheerful most of the time and engage more in physical activity than I did last time I wrote. The weekly golf game still goes on, I ride a bike for exercise using a wide seat for comfort. Previously the site of my surgery meant that bike riding was quite uncomfortable. The new seat and time seem to have solved this problem. I now do some strengthening exercises, a short intensive session on the bike, daily golf practice and tai chi.

I'm also controlling the calories and as a result am lighter, enjoying my food more and feeling better.

It's a good story and I hope you can gain some encouragement from it. The journey continues but we are on the right path.

Barry

UPDATED

July 2014

Very little has changed since my last report. My wife and I live a simple life on our small 'farm'. We've sold our sheep and lease the place to a neighbour. We spend much of our time growing some of our own food and making small trips to visit our children and grandchildren; we now have three.

My health is good although a persistent inability to get quality sleep and a lift in my blood pressure is being explored at the moment. In terms of my prostate-related side-effects, nothing has changed. My annual visits have ceased and the latest PSA readings are 'undetectable'.

I'm doing okay for an old fella but the golf game is deteriorating.

UPDATED

August 2015

Today's update will be brief. To recap, my surgery was in 2004 followed by radiation in 2007. Subsequently my PSA was tested six monthly, then annually. I have not been tested for 2 years.

Ongoing issues have been erectile dysfunction (ED) and incontinence. The ED has persisted but the incontinence is now very minor.

I enjoy an active, enjoyable life and don't take any tablets. We now live close to the beach and the lifestyle that brings with it. I am very lucky.

PS I suppose I should have my PSA checked soon!

UPDATED

October 2016

I'm doing fine. Have just completed the Camino de Santiago which took my wife and I 22 days, 4 of which we walked and the remainder, including a couple of rest days, on mountain bikes. Hard work but an incredible experience.

I guess this achievement tells the story about my ongoing good health. Incontinence is not an issue but impotence remains. Nothing has changed in this respect.

I'm still feeling that we may have acted too quickly in undertaking the surgical and radiological treatment. Of course we will never know but overall I can't complain about the outcome. My life has indeed been a fortunate one.


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