Personal Stories

> Wal Crellin - Is frequent urination a sign of prostate cancer?

> Testing for Prostate Cancer - a Consumer's Journey

> A Personal Story About Prostate Cancer - Allan Hedges

> Len's story

> The brachytherapy experience

> Just how good is brachytherapy?

> A Personal Experience of Seed Implant Brachytherapy

> My journey after HIFU

> A personal story

> Some reflections on coping with prostate cancer

> The Road To Prostate Cancer: How to fall over the line - just

> Radiation Therapy - A Consumer's Perspective

> Prostate Cancer ... What ... Me?



A Personal Story About Prostate Cancer - Allan Hedges

Each year many men and their families will discover the dilemma and trauma associated with a diagnosis of prostate cancer and in many cases panic and seek a form of treatment that may have far reaching consequences, without stopping and seeking further advice.

This was almost the situation I found myself in when, in 1994 I was advised that I had an early stage of this disease which is now the most common cancer found in men. In 1995 there were 2670 deaths from this disease. My diagnosis followed a slightly rising PSA blood test from 5.2 to 7.1 over a period of some 15 months and the finding of a "nodule" on the prostate following a digital rectal examination and a later ultrasound and needle biopsy. I had no other indication of any problems.

My GP had referred me to a Urologist/Surgeon and because of my good health at age 64, I was informed by the Urologist that surgery (and major surgery at that) was my option. In requesting other options he tried to convince me that my life expectancy was greater by having the prostate removed, a fact that his graphs did not convince me was correct, and in returning to see my GP I sought the advice of a Radiation Oncologist, and it was this course of treatment that I finally pursued.

Before making this decision, however, I had obtained as much information, scarce as it was then, spoke to other men and being very conscious of what "quality of life" may or may not be after treatment, made my own decision for what I truly believed was right for me. The point of my story is this - Do not panic if a diagnosis of cancer is given by your urologist. Step back after your initial shock, be very positive about your future and return to your GP.

Then discuss the other options available and seek 2nd or 3rd opinions. Watchful waiting, radiation treatment and hormonal therapy are some of these and seek out a support group where experiences from other men and their families can throw much light on your dilemma.

This particular cancer does not play by any rules and its detection and treatment are subject to much medical controversy. In many cases there are no symptoms until it is well established and once it has progressed past the gland itself, surgery is not an option. For men over 50 years of age, or 45 years if there is a family history of prostate disease, it is considered essential to have an annual PSA blood test and digital rectum examination.

Don?t be put off if your doctor is reluctant to have either of these tests carried out - seek one who will and note your annual PSA count. If it rises at a rate not in keeping with your age it could indicate some activity within the prostate requiring further investigation, but not necessarily meaning cancer. Notwithstanding the form of treatment, full and frank discussion should be made with each specialist concerning possible effects of treatment, especially incontinence and impotence and as the patient, you should be armed with all the questions in order to be given definitive answers.

Remember the final decision must be an informed one made by you and not your doctor because it is your life and health that is being determined. There are no guarantees given for any form of treatment, including surgery, that the cancer will not return, but by adopting an absolutely positive outlook, a sensible lifestyle and diet, and not being afraid to share your experience with others, especially in a support group, your expectations for living well should be enhanced.

> 23 July 2012 Update - Allan Hedges Obituary

 

Len's Story

Len Robbins was diagnosed with prostate cancer in May 2000 when his PSA test showed 6.7.

Three weeks later after a TURP, Len’s PSA registered 87 and after seven more weeks registered 150.

Not knowing what this meant, Len called a local support group led by Don Baumber on the Gold Coast and soon found out that this was not a good situation.

Len’s disease had been quite "silent" with no obvious symptoms until changes in his urinations highlighted a need for further investigation. Len’s cancer was classified as advanced on diagnosis, it had spread beyond the localised area of the prostate and treatment available could only be palliative.

Len sought a second opinion and was placed on "triple barricade hormone therapy" for two years and subsequently has been on two separate chemotherapy regimens. The latter regime combined two chemotherapies. He remains on a monthly hormone therapy transplant.

Currently Len’s PSA is 12 and has been stable for four months. Len never took his diagnosis as a death warrant and has always kept an earnest interest in his problem. He researches web pages, speaks with other sufferers, seeks opinions from overseas medical experts and has an active, ongoing dialogue with his own Australian-based specialists about options available.

Len’s cancer spread from the prostate into his bones. Len has bone metastases, not a new form of cancer but rather a new growth of his (primary) prostate cancer. His major concern is osteoporosis and the incidence of fractures due to the weakening of his bones.

Len has chosen to add a bisphosphonate medication for treating his bone metastases. The bisphosphonate works directly on his bones assisting in the orderly replacement of bone material, so reducing further damage to be caused by the cancer. Len believes this medication has his cancer under control.

"I am arthritic so I walk with two sticks or a wheeled walker as I am not very stable on my feet. I have had several falls, one when I tripped on a carpet and fell over a sofa at home and recently while I was on a cruise I slipped on a wet deck and fell to my knees. In both of these incidents, I was badly bruised and sore but I did not fracture any bones. My bisphosphonate medication has allowed my bones to repair and strengthen in an orderly manner. I have had no further spinal compression from damaged bones on the spine and the size of the existing lesions located all over my body have not increased."

Len has an active community life supporting a local computer-training group, Retired Online, set up for retirees with limited incomes. He was a founding member and is currently vicepresident and secretary. He also attends a prostate cancer support group and speaks with patients recently diagnosed, helping them to see beyond the initial shock and recognise that they can keep living but must take control of the situation and learn as much as they can about what is available to manage their disease.

Bisphosphonates is one treatment for bone metastases. Other treatments include:
•hormone therapy, often used with other treatments;

•radiotherapy, directed at the bone metastases to destroy them and reduce pain;

•metal pins inserted into the bones surgically to support the weakening bones; and

•chemotherapy to kill the cancer cells.

Recent bisphosphonates are the only treatment that has shown cases where the bone damage caused by metastases is reversed. Many patients may report reactions to the first treatment but these are usually mild and short lived. As a preventive to further bone damage, Zometa is the only bisphosphonate that has prostate cancer patients talking about a reduction in their incidence of bone fracture, pain, spinal cord compression, radiotherapy and orthopaedic procedures.

 

The Brachytherapy Experience

Alex had some non-malignant prostate problems in 1993, which were treated successfully, however his PSA was monitored regularly after that. Early in 1997, Alex’s PSA rose from 7 to 11. His doctor referred him to a Urologist who performed a digital examination which found a lump. A biopsy revealed cancer of the prostate with a Gleason score of 5. As Alex says:

"I was dismayed at this and was about to have dinner with my wife and daughter. I did not alert them to the news until, at the end of the meal, my wife remarked that we had not heard from the Urologist. I then told them the news, but insisted that while we were not dealing with a "hair cut gone wrong," I absolutely wished the whole affair to be handled lightly. No tears! No "poor Daddy!" No "how unfair!" Because none of that would be of use, and would only serve to lower our quality of life. At this stage I would not allow them to discuss the situation with friends or relatives, as this also would be to no point. I insisted we face facts and get on with doing something positive.

"The Urologist ordered bone scans and cat scans and various X-rays to determine if the cancer had escaped the prostate capsule. The results seemed to confirm the cancer was contained in the prostate only. His advice was that, at Gleason 5, I could not just ignore the cancer and some course of action had to be contemplated as we could assume the cancer was aggressive. I was not happy to go the surgical route, because I was doubtful all the cancerous tissue could be removed beyond doubt. Also, probably illogically, I was worried that the operation itself may set off secondary cancers which could exacerbate the original problem.

"The second option of "external beam radiation" I also dismissed because as the prostate, bladder, urethra and bowel are so close to one another, it is impossible to "zap" the prostate satisfactorily without doing damage to the other organs. This would most likely involve incontinence, impotence, and pain and distress with bowel movement. I was not game to take this risk. The third option was brachytherapy, where radioactive seeds are introduced directly into the prostate in such a pattern as to cover the extent of the cancer, but leave surrounding tissue unaffected. This seemed to be an elegant, sophisticated solution, which appealed to both my technical and artistic upbringing. Something like the "bypass". All the above three solutions seemed to have comparable success rates but the brachytherapy the least side effects,

Alex was referred on to another Urologist who specialised in Low Dose (seed implant) brachytherapy, who said the constraints for this type of brachytherapy were:

* Prostate volume to be 40 c.c. or less,

* Gleason Score to be 6 or less.

* PSA of 10 or less but circumstance could allow some lee-way on this.

* Cancer to be confined to the prostate capsule.

* Life expectancy of at least 10 years.

Alex continues: "Fortunately I was in good physical condition, playing tennis two or three times weekly and going to the gymnasium twice weekly. The fly in the ointment was that my prostate volume was calculated at 63 c.c. I was put on hormone treatment in October 1997, to starve the cancer of testosterone, stop it growing, and hopefully to shrink the prostate back to 40 c.c. At this stage I reviewed my financial affairs, so that in the event of failure, my loved ones would be able to continue to enjoy life in the manner to which we had become accustomed. The hormone treatment was not particularly pleasant as I suffered from time to time what in women is called PMT, however a daily 100 mgm slow release Vitamin B6 tablet mostly offset this. As well I suffered a degree of lassitude, lack of drive (not only sexual), loss of concentration which resulted in me regularly being thrashed at tennis, but in April 1998, my prostate volume was calculated at 32 c.c. and my PSA was down to about 4.7. At this stage my Urologist could order the radioactive seeds and plan with his team the most effective placement of them."

Alex found he would be treated by a team of specialists including an anaesthetist, an oncologist, a radiologist, and a planner. Alex continues:

"10 June 1998 was D-day and I turned up looking forward to what I hoped would be the beginning of the end of the cancer. Two and a half hours later I awoke with absolutely no pain, and such little discomfort as to be negligible, even though some 30 needles had been pushed through my peritoneum into the prostate. The nursing staff kept asking me if I needed tablets or an injection for pain but this was totally unnecessary and I watched part of the soccer that night. The next day the catheter was removed and I was ready to go home.

"Unfortunately, because of the peculiar shape of my urethra as it enters the bladder, and the inevitable inflammation of the prostate due to the procedure, combined with my inability to tolerate anti inflammatory drugs, I was unable to pass urine. A catheter was introduced with a tap at the end instead of a bag, so I could go home and let things settle down. Seven days later the catheter was removed."

With medication for two weeks to help the settling down process, Alex recovered well. As he reports:

"Today, just 19 days after brachytherapy, I have played three sets of singles tennis (about two hours), no discomfort, no urgency to pass urine, no frequency and also no aces. I pass urine about three hourly at night but am able to drop off to sleep pretty quickly. During daytime there are much longer periods between voids which is very pleasant, and I take the precaution of voiding before going to a concert or out for dinner or going for long walks. Occasionally I am very tired and have an extra half a day in bed. I do not know whether this is the result of the radiation treatment or the result of my hormones beginning to re-adjust or a combination of both. I also still have some sweating at odd times. However, I am not fussed by any of this and am confident all will normalise in time. I have put on 2 kilos since the brachytherapy but put this down to lack of exercise and no gym work. So it is back to the gym, no more morning and afternoon teas, and my wife and I will continue as we have always done to enjoy each day as it comes around."

 

Just How Good Is Brachytherapy?

Frank's Story

In June 1999 Dr Mark Stevens, who practices at St Vincent’s Hospitals in Sydney spoke to the St Vincent’s support group on the two methods of brachytherapy offered at this institution. While the medical profession in Australia still considers brachytherapy as somewhat new technology and not as well proven a radical prostatectomy or conventional external beam radiotherapy, more patients are opting for it each year. One of the major reasons lies in the fact that the procedure is less invasive, allowing the patients to recover far more quickly with fewer side effects. A disadvantage is that the procedure is not covered by health funds, making the cost to the patients fairly high.

As Dr Stevens explained, brachytherapy involves introducing radioactive material into the prostate and using the radiation to kill the tumour without damage to other tissues, as inevitably occurs with surgery or external beam radiotherapy. Guided by ultrasound, hollow needles are inserted into the tumour in the prostate. If “low dose” brachytherapy is employed, small seeds of irradiated iodine are inserted via the needles into the prostate and left permanently in position. If the “high dose” method is used, a much more radioactive liquid is pumped briefly into the needles and withdrawn once sufficient radiation has been administered.

Of course, the whole procedure is vastly more technical than this brief description suggests, requiring a team of people including a trained nuclear physicist and a computer specialist as well as a surgeon, radiologist and physician. However, the patient is in hospital for only two or three days, suffers little discomfort, and usually can expect to return to normal life within days. Bladder or sexual dysfunction is largely avoided.

For those considering brachytherapy, here is an edited account of one man’s experience of treatment.

Frank is a builder, aged 67, normally active and out of doors, with no previous health problems. About 8 years ago his GP recommended PSA blood tests which were normal until November 1998 when the reading suddenly doubled with the year to 6.3ng/l. Frank was referred to an urologist for a biopsy. Fifty percent of the samples returned a Gleason Score of 9, confirming the diagnosis. His CAT and bone scans were clear, but the urologist considered the cancer grade and location to be unsuitable for surgery.

Frank was initially recommended to choose external beam radiotherapy. While investigating the options, Frank learned about brachytherapy, which was highly recommended by his daughter, a nursing sister. After a second opinion that surgery was inappropriate, Frank chose brachytherapy. Further investigation confirmed that high-dose brachytherapy was an appropriate treatment. By this time Frank felt very comfortable with his choice of medical team and the brachytherapy procedure.

During the afternoon of admission to hospital, nineteen needles and a catheter were inserted under general anaesthetic, a CAT scan was performed and he was returned to the ward for a comfortable night’s sleep. At 9.30 the next morning the first radiation dose was given and repeated at 2.30pm.

Immediately afterwards the needles and catheter were removed, bringing “great relief”. Frank felt only “some discomfort” during the procedure, but was determined to “stay focused” and was able to feel “100% positive” throughout. As an immediate follow-up, Frank had 25 doses of external beam radiation, five days per week for five weeks. "This was the easy part”, said Frank.

Throughout the whole experience Frank found great comfort in his religious beliefs and the prayers and company of his friends and relatives. All decisions about treatment were made by Frank and his wife, calmly without any “panic mode” on the basis of reason and good information. Frank thinks the impact of the diagnosis was probably more severe on his other family members.

He added, "In the few short months since diagnosis we have had great support and friendship from members of our local prostate cancer support group. We found this invaluable, so strongly recommend anyone in the same situation to get in touch as soon as you can and reap the benefits of a great group of carers. The saying “no man is an island” is never more true than when you are concerned and maybe confused about your health. There is great help and encouragement available to you, your spouse and family at the end of the phone."

 

A Personal Experience of Seed Implant Brachytherapy

When, during a routine annual check-up I was advised my PSA was high at 7.6, my life suddenly took a different course. My GP immediately referred me to a urologist who took a biopsy. This gave the dreaded confirmation that I indeed had cancer in my prostate, but it did not appear to have spread outside the capsule. My Gleason score was 6 (3 + 3).

I had four options: Remove the prostate by radical surgery, high dose (needles) brachytherapy, low dose (implanted radioactive seeds) brachytherapy or, of course, do nothing. Being aged 65 and otherwise very healthy, I made strenuous efforts to find every possible bit of information about what would be the best course for me. Everyone had an opinion, most being “don’t let a surgeon touch you!” however I found most people confused my situation with an enlarged prostate (benign prostatic hyperplasia), which is very different to treating cancer.

After three weeks of investigation and thinking of side effects compared to my probable length of life, I advised my urologist I had decided on seed implant brachytherapy. He agreed this was the best way to go, but pointed out that the cost would be around $23,000 and no health fund cover would apply. I thought “what price life, the cost of a small car perhaps?” and went ahead.

I entered the day clinic supposedly for a four hour procedure to evaluate how many seeds would be needed and where they would be placed. I awoke from the anaesthetic to find a drip in my arm and a catheter in my penis. The doctors had discovered a middle lobe in my prostate, which had to be removed by laser. As a result I spent two unexpected nights in hospital, although there were no other side effects.

My next interview was with the radio-therapist who advised that, because my prostate was enlarged, I would have to undergo seven monthly injections of Zoladex to shrink it to a size suitable for seed treatment. The injections - in my stomach - were not as bad as I expected, but I was very happy when that treatment ended and I re-entered the clinic to have the seeds inserted. The operation went according to plan and I was discharged the following day after several X-rays.

After effects have been few, apart from some tiredness, a little weight gain, and a couple of bowel blockages which were dealt with by standing under a hot shower. Apart from that, all bodily functions are back to normal. I feel I made the best decision for myself. I was pleased that all information I was given beforehand about the treatment, what it would cost and what would happen, was detailed and correct. I look forward to helping others who face having to make their own decision about treatment. I know what they are going through.

Christopher Deans is on the committee of the St Vincent’s and RPA Support Group in Sydney and would be happy to hear from anyone considering seed implant brachytherapy. Call him on 02-9358 4624

 

My Journey After HIFU

John Baddeley journey after HIFU

It is now one year after having HIFU treatment for prostate cancer and it is time to follow up on my journey from the first initial report.

With the help of Ural the stinging whilst urinating subsided after two weeks, what a relief and the feeling of sitting on a lump of concrete finally disappeared about ten weeks after the HIFU procedure. I am not sure if another side effect of this procedure is constipation but I suffered chronic constipation for five weeks. My approach to correct this was through a better diet, more fibre, not by using medications (drugs). I have not had any further problems with constipation.

There was a period of three months immediately after treatment when I felt lethargic and not my normal self but by mid January 2006 this had passed and I was feeling like my young self again.

Dr Stricker gave me one guarantee with HIFU and that was permanent impotency; yes he got that right. One other side effect is I now experience very minor incontinence which I have learned to control and live with.

My first check up was in February 2006 with biopsy and PSA. Fourteen biopsies were taken and all came back with no cancer detected and PSA was 1.3; it was better than winning lotto. My next PSA test was in June 2006, I saw my GP for this result and received a shock when it was 1.9. I believed there had to be an error and requested another blood test. I saw Dr Yaxley for this second test result and it was 1.8. It was explained that the increased PSA could have been due to an irritation or minor infection. It was not time to panic and lets see what the next PSA reading will reveal.

The next blood test was in September 2006 and the PSA had risen to 2.3. Once again I picked myself up from the floor and put on the boxing gloves because this bastard (cancer) is not going to control my life. I have a great team in my corner and we won’t be throwing in the towel. As these levels are still relatively low our next decision on treatment will probably be made in 2007, however I will be having monthly PSA checks.

It is not until we have a problem that we realise life is very short and I make the most of every moment these days. I still believe HIFU is a very effective treatment and would have this procedure again if I have the cancer still localised.

John Baddeley - Elanora QLD


A Personal Story

Mr Jim Lloyd MP, Federal Minister

My early diagnosis for prostate cancer came about because of a routine PSA test, which was recommended by my local GP. I had visited my doctor in March 2002 seeking some travel inoculations, as I was attending the 2002 Anzac Day Service in Gallipoli, Turkey.

My GP recommended I have a routine PSA and Cholesterol blood test. Despite having no symptoms, my PSA was elevated at four (4). I was not concerned as I virtually knew nothing about prostate cancer. My GP recommended a further test in three months time.

Like most men I delayed having the test for a further six months until I visited my GP on an unrelated matter. The second test revealed a further elevation of my PSA to six (6) and I was referred to a Urologist in September 2002.

My Urologist recommended a biopsy, and whilst I was warned that this was uncomfortable, nothing really prepared me for the reality. I can’t say it was painful but I can only describe it as a builder’s rivet gun being discharged inside your backside. I had nine (9) samples taken on the 9th of October and I counted each one of them!

I had heard that some men have fainted after the biopsy and I was relieved that I was able to walk from the room after about a five-minute recovery period. The next two weeks were an anxious time, waiting for the results, but I always felt positive that the results would be negative; after all I was 48 years old, relatively fit and feeling very healthy. I couldn’t possibly have cancer.

I attended my Urologist accompanied by my wife, Kerry, on the 18th of October 2002 (the day after our 27th Wedding Anniversary). The biopsy was positive! I guess my mind went blank; this couldn’t possibly happen to me. I still have the hand-written diagram that my Urologist sketched for us, trying to assist in explaining the diagnosis. I’m not sure it helped, I didn’t even know what purpose was served by my prostate and until my biopsy didn’t even know where it was! It was important that my wife was with me at this time and she has since accompanied me on each visit to my specialist, even the now routine PSA results.

Like all prostate cancer patients I had to decide: (a) Do nothing (not a realistic option), (b) Surgery (a very scary idea) or (c) Radiation (an even scarier idea for me).

At the same time that I was struggling with these decisions the CEO of the Cancer Council, Professor Alan Coates, made some comments in a newspaper article which I found extremely unhelpful and distressing.

I had recently lost my brother-in-law to liver cancer and all I could think of was I didn’t want to die like he did. I went home and slumped in my lounge chair feeling very sorry for myself. I guess the usual questions raced through my mind. Why me? What have I done to deserve this? Did anything in my lifestyle cause the cancer?

All this personal turmoil was happening at the same time as the real impact of the horrific Bali bombings was being revealed.

A personal turning point in my decision process was when I visited one of the survivors in Concord Burns Unit. This man was seriously burned and tragically had lost both his wife and daughter in the bombings. My concerns suddenly seemed so insignificant and I decided that I had to face this problem head on. I researched as much as I could about prostate cancer (only confusing me further) and finally chose the surgery option on the basis of the following facts: I was 48 years old, reasonably fit, the cancer was detected early, and there was a reasonable chance of a complete cure.

As a Federal politician I had to consider my work commitments and at first considered having the operation over the Christmas break. I eventually decided to have a good holiday with my family in January and was operated on the 17th of February 2003 at the Sydney Adventist Hospital. The operation was longer than expected but I was surprised that I felt quite reasonable when I came back from surgery. They had me out of bed the next day and I was discharged from Hospital in four days.

My only problem was getting comfortable with the catheter leg-bag. I found the whole process distressing and uncomfortable for the ten days that the catheter remained in place. The best day was when I went to have the catheter removed. I was prepared with a whole range of incontinence pads, but to my surprise only needed a small pad. The relief of having the catheter removed was wonderful!

Once the catheter was removed I could resume light exercise (walking), and each day I would walk a little further. My continence was good but not perfect. I would practice my bladder control exercises while walking. I would wear a long shirt over my shorts to cover any small accidents. My son Stephen was getting married on 13 April so I set my goal to be fit for his wedding. It is a good idea to have a focus goal (such as an event or a holiday) to aim for. I was also determined to participate in a pushbike ride from Sydney to Melbourne raising money for charity. Just 10 weeks after my radical prostatectomy I rode more than 300kms over four days, something I am very proud of.

Hopefully this sends a message to other prostate cancer patients that you can quickly return to a normal lifestyle.

Within three months of surgery my continence had returned to completely normal and sexual function (whilst not as strong as previously) had also returned. It is now eight months since my surgery and my PSA is now less than .01 and my life has returned completely to normal. I am fitter than before the operation and looking forward to continuing a long and active lifestyle, something which would not have been the case without a routine PSA test and early detection.


 

Some Reflections On Coping With Prostate Cancer

Russell Lansbury

Cancer is a word describing something which happens to others. At least that was how I thought about the subject. And then it happened to me. When I was informed that I had prostate cancer, I told myself that this wasn't a 'real' cancer. After all, many older men have 'prostate problems' which can be fixed with a minor operation. I knew a few men who had been through the operation (including one close friend) and they had survived OK. But I had never really inquired too deeply into their experience. I was happy just to know that they had recovered.

But when the urologist told me that I would need to have an operation, the news hit home. Up to this point, I had convinced myself that whatever I had would be benign and would go away of its own accord. After all, I had never had a major illness, I was very fit and was 54 years (and this was, after all, an old man's disease). But then I had to face the reality that prostate cancer is the second most common cause of cancer-related death in Australia, even though more than half the deaths from prostate cancer occur in men aged over 75 years.

I have now survived the operation and have 'bounced back' remarkably well. However, there remain hurdles to be overcome. There is still a possibility that cancer cells have entered my blood stream and this may require hormone therapy. My sexual life has radically changed as the result of the operation. But paradoxically this has been in many ways a positive life affirming experience. It has brought me closer to my wife, family members and friends as well as causing me to reassess my direction in life. And the overwhelming feeling is one of relief and gratitude that life will go on. I feel that I have been thrown off balance but am beginning to regain my equilibrium. But I now look at life as finite. When I walk along the beach I try to enjoy each moment and appreciate that I now have a 'second chance'.

I decided to write about my experience as a form of 'therapy' for myself but I also hope that this article may provide some useful information to others. While understanding the actual treatment is, of course, very important, so too are the many intangible effects which prostate cancer has on one's relationships and attitude to life.

The Discovery

It is difficult to be precise about the time when I first realised that I could be a candidate for prostate cancer. A couple of years ago my GP suggested that, having passed the age of 50, I should take a routine blood test to check on my cholesterol and a few other items. The tests revealed a slightly above average level of PSA (prostate specific antigen). This suggested that I might have a prostate problem but it did not indicate whether it was cancer, a benign enlargement or some other prostate disease. I had no apparent symptoms although I was waking up more frequently during the night to urinate. My GP suggested that I take some further tests to see if the PSA was rising. Over the next 12 months several tests showed variable results. My PSA level rose, then fell, then plateaued and rose again. Eventually my GP recommended that I see a urologist, who would decide whether to undertake a biopsy.

It was early June when my urologist outlined the possible causes of the rising PSA and suggested that I take one further blood test before I went overseas for a month. When I returned I was told a biopsy was advisable. It was at this point that I contacted my friend David, who had an operation for prostate cancer five years previously. He had become active in the Australasian Prostate Health Council and gave me a number of pamphlets which I reluctantly scanned, still not wanting to believe that I would need an operation.

The biopsy was my 'wake up call'. A laser gun up my back passage fired six needles into the prostate to obtain samples. I had not been prepared for this rather alarming experience, thinking that it was just a routine procedure. While it was not searing pain it was quite a shock to feel the needles go in and then feel a cramp-like sensation in my abdomen. Following this procedure, my urologist explained to me in a rather off-hand manner that around 10 per cent of patients experience bladder infection following the biopsy. If I should find my temperature rising and blood in my urine, I should go to the outpatients department of the local hospital and they would administer a course of antibiotics intravenously.

Two days later, the discomfort from the biopsy had subsided I began to feel ill and decided to check into the local hospital. I then had a five hour wait while the resident doctor tried to contact my urologist for instructions. No-one seemed to be able to tell me how long I was likely to be there. Eventually I was put on an anti-biotic drip and told that I might need to remain in hospital for a several days. Suddenly I realised that things could be serious. My urologist paid a fleeting visit the next day and said that I could go home after my temperature stabilised and that he would let me know the result of the biopsy in a week's time. Within 24 hours I was feeling fine and had begun to return to normal. (Editor’s note -most urologists would not perform a biopsy until the patient has undergone a protective course of antibiotics. Patients should question their urologist about this matter before undergoing a biopsy.)

A week later my urologist informed me the biopsy showed that a tumour had spread across half of the prostate and that I would need to undergo a 'radical prostatectomy' as soon as practicable. He gave me a one page information sheet and suggested that we set a date for the operation. I was stunned. I had not really prepared myself for such an eventuality. I could not think of any questions to ask and simply said that I would like to go away and think about it.

I was surprised by my family’s reaction to the news. When my daughter hugged me and burst into tears, the full impact of prostate cancer struck home. I suddenly realised that my life was about to change. All of my family were supportive and encouraging, but I felt quite numb and stupefied, entering a period of uncertainty over which I had little control

The Reckoning!

On the advice of a friend who had undergone the operation several years previously, I decided to get a second opinion from another urologist, as I began to feel resentful at the rather indifferent way I felt my case had been treated and the little information I had been given. Fortunately I was able to see the new urologist at short notice, as I was starting to panic. He spent more than an hour with my wife and me explaining the nature of the cancer and the options. His first question was about something which I had not wanted to face. "How important is your sex life to you both?" Having been married for 30 years and enjoyed an active and fulfilling sex life I was dreading that prostate cancer would spell the end of my sexual activity.

He explained that the cancer was fast growing and needed to be removed as soon as possible. Failure to act could eventually mean that the cancer would spread. However, due to the bladder infection, which had accompanied the biopsy, I would have to wait for two months. He gave me a number of research papers, which explained the nature and treatment of prostate cancer in considerable detail. I had no hesitation in asking him to take over my case.

On the bright side, he told me I had an 84% chance of full recovery from cancer and that he would seek to preserve at least one of the nerves surrounding the prostate, which governs the ability to achieve erection. Even though removal of the prostate would mean the loss of ejaculation, it would still be possible to experience orgasms and, in time, erections might return. During the operation he would also take a biopsy of the lymph glands, which are close to the prostate, to determine whether they had been affected by the cancer. If the lymph glands had been invaded by cancer he would not proceed with the operation.

My urologist requested I book into the private rather than the public hospital, to obtain a firm booking and so he would be able to work with his usual team. This was the moment of reckoning for my bank balance. My wife and I had withdrawn from private health insurance only recently on the grounds that if something really life threatening happened to us, we would receive better treatment under the public system. Now I realised how expensive 'elective' surgery was for the uninsured.

Facing Reality

Just before the operation I found a book entitled Surviving Prostate Cancer: One Man's Journey, which was co-authored by playwright, Alan Hopgood and medical writer, Dr Mark Ragg. The book deals with Alan Hopgood's personal experience of prostate cancer and also contains some useful factual material by Mark Ragg. It became something of a guidebook for me as it is written in the form of a diary, which I was able to consult on a daily basis. As it turned out, Alan Hopgood's experience was a lot more harrowing than mine and many of the problems which he encountered both in terms of the operation and his personal life did not happen to me. I also realised from his account just how many advances have been made in the treatment of prostate cancer in the few years which have elapsed since his experience.

The Operation

I arrived at the hospital around 5.00pm in order to settle in before the operation which was scheduled for the next morning. I was greeted by a nurse who complained that I was two hours late! Obviously, the specialist's office with whom I had agreed my time of arrival and the hospital admissions desk had not communicated with each other. But the nurse was reluctant to discuss who was at fault. I was late and had disrupted her schedule!

Later, my surgeon and his anaesthetist visited and I was offered a sedative which I declined, but later regretted as I lay awake thinking of what would happen during the next day.

Suddenly it was morning and there was a series of injections and preparations for the operation and suddenly I was out to it. When I eventually woke up and looked around, I found various tubes protruding from me: catheter, drip, epidural, and no sensation in the lower half of my body. Somebody said that I had done very well and that everything would be fine. For the rest of the day I fell in an out of sleep without much sense of time or place.

The third morning in hospital was probably the most difficult. I had a continuous headache and it was difficult to cough or laugh. The catheter was in place and I had no control over my bladder. It was difficult to sit up in bed without assistance. The nurse insisted that I had to drink more fluids and yet I felt that I was drowning in liquids, which then passed straight through to the catheter. But by early afternoon I was feeling a bit better and actually took a shower.

By day four I felt I was really on the fast track to recovery. All tubes except the catheter were removed and I was moving around the room with ease. I spent most of the morning sitting in a chair reading the newspaper with the sun shining through the window. I even managed to walk the length of the corridor outside my room. The nurse said that I would probably start solids later that day.

A Set Back

Then came the blow! My surgeon dropped in during the afternoon and told me that he had just received the results from the pathology test. The good news was that the surgery had left a 'negative margin' around the prostate area. This meant that no cancerous cells had been left in the region where the prostate had been. The bad news was that cancer cells had been found in the 'seminal vesicles' (which are two small storage deposits for sperm that sit at the back of the prostate) and there was a chance that some cells may have escaped into the bloodstream. Because of this he recommended that I undertake a year's hormone therapy as a preventative measure.

While hormone therapy may not cure prostate cancer, it slows the cancer's growth by reducing the production of testerone by the testicles (which fuels the cancer cells). The aim of hormone therapy is to limit the prostate cancer's access to testosterone and thereby 'starve' it into remission. The side effects of the treatment, however, can be similar to those experienced by women in menopause such as loss of sexual desire, hot flushes, breast tenderness, lethargy and weight gain. However, we could wait until the results of the first blood test, in a month's time, which would indicate the level of PSA which remained in the blood stream.

Later that day I spoke with a friend who had experienced the same treatment. He told me that he had abandoned hormone therapy after a couple of months because he could not take the side-effects: 'it felt like someone else had taken control over my body_ some kind of evil spirit-it was very weird and frightening'. He had sought a second opinion from another specialist who was sceptical about the value of hormone therapy as a preventive measure. So David decided to live with the consequences of having some cancer cells in his body rather than continue the trauma of the treatment.

On day five I had my first 'solid' meal and realised how delicious food tasted again. The next day my surgeon said hormone therapy may not be necessary if my PSA level remained at zero over the next few months. He said that my friend’s reaction to the treatment was very extreme and unusual. Most people did not experience such difficulties.

The Recovery

On day Six a good bowel movement precipitated my release! We celebrated with a vegetarian lunch at a caf? in Glebe. It felt great to be surrounded by 'healthy' people By the time I climbed into the car to set off for home, however, I could hardly stay awake. After an afternoon nap, I joined the rest of the family for a celebratory meal and was amazed at how hungry I was. Back in my own bed after a long week, I had a wonderful sleep.

But this was just the beginning of a new phase. I was in charge of my own catheter and leg bag, which needed to be emptied and cleaned regularly. Over the next two days I did some gentle walks with the dog, answered correspondence and talked on the phone, taking things at a more leisurely pace. By Wednesday the catheter was starting to really irritate me. Every time I needed to urinate, I had a spasm and it felt like the catheter was about to explode (due the volume which was trying to escape). I began to become anxious about what would happen when the catheter came out (on Thursday) and I tried to regain control over my bladder movements.

The catheter came out without any difficulties and there was no great drama. Miraculously I was not incontinent after all. The credit was entirely due to my surgeon’s expertise, although I liked to think that the pelvic floor exercises which I had done before the operation (to increase my bladder control) might have played a small role! On Friday afternoon I took a very tentative swim and that evening My wife and I went to a movie (and I held on for two hours!) I did try to test out my luck in the sexual area but I knew that miracles have their limits! Nevertheless, it was good to be making the transition back to a 'normal' life

The Future

It is now three months since the operation. Within one week of the catheter being removed, I had abandoned sanitary napkins and had no incontinence. Five weeks after the operation I received the results of my first blood test. To my great relief the PSA count was negligible and I was told that I did not need hormone therapy at this stage. As an additional reward, my urologist gave me some samples of Viagra and suggested that I try them. Alas! This was not a success. Then I began some continuing experiments with penile injections. On the second occasion it was successful but with some uncomfortable side-effects. I am assured that with persistence things should turn out OK. But I have found that gentle sexual stimulation can produce an orgasm and this unexpected result has been a delightful discovery. The blood tests will continue and my PSA levels will be monitored in the hope that they do not rise. So life is certainly better than I had expected when I first received the news of prostate cancer, but the journey is still at an early stage. There is still some way to go before I reach the mountain top, but the outlook is certainly improving!

March 2000



 

The Road To Prostate Cancer (or: How To Fall Over The Line - Just)

My condition developed after a lifetime of relative freedom from serious illness. I had almost never had to approach a doctor except socially (in my early academic career I trained with them). I played good standard tennis until I was 61 and could still enjoy pretty vigorous bush walking.

However, at 63 (1993) I had two real bouts of illness, produced firstly by a hiatus hernia and secondly by developing osteo-arthritis. I learnt to live with the former and received almost miraculous relief from laser acupuncture for the latter. With hindsight, I have to say that if prostate malfunction had crossed someone’s mind at this juncture, they might have been rewarded. Only the acupuncturist thought to ask about “waterworks” and I could honestly say I had no problems.

Towards the end of 1994 I was developing real trouble. Considerable pain down my left leg was confirmed, after referral to an orthopaedic surgeon, to be the result of a spinal disc lesion. This diagnosis, combined with my known arthritis, set me down a path of exercise which I instinctively felt was doing me no great good. My frequent complaints about leg pain finally led to me citing an earlier C.T. scan which had thrown up an ill-defined shadow which, it was suggested, might profit from an M.R.I.

This was organised and the results were alarming. Some kind of cancerous condition with bony metastices was involved and it was time to call in the oncology people at The Newcastle Mater Hospital. This was August 1995.

Now it was party time with a vengeance. Many of you will know the drill: a further C.T. , bone scans, X-rays galore and a biopsy. I suggest my oncologist must have tossed a coin whether to admit me or call a good undertaker. My bone picture was formidable; my P.S.A. reading was 3,000 and my Gleason score was 8.

I was slammed into GnRH agonist therapy, with flutamide and 5 days of radiation. The effect was dramatic; within a few weeks the P.S.A. readings started to plummet and many months of sheer agony became a memory.

I was told I could look forward cautiously to 12 to 18 months survival time. By this year I had achieved two seemingly impossible goals; age 70 and A.D. 2000. That’s over 4 and a half years to date, with a P.S.A. between 0.1 and 0.4 for most of that time.

I am still remarkably active, which I put down to a positive attitude fuelled by a strong desire and ability to understand my therapy, and a series of exercises of my own design. These, I reasoned, were directed towards age 70, the water-shed beyond which life was busy enough attending to geriatric mishaps to beside-tracked by unnecessary intruders like cancers! On the whole, my cardio-vascular system seems to agree.

You will appreciate that I have reservations about certain aspects of my therapy but I unconditionally tip my lid to The Mater and the guy who developed the GnRH agonist therapy, with whom I have corresponded.


Radiation Therapy - A Consumer's Perspective

Address to the Radiation Therapy Workshop - Westmead Hospital, Sydney, March 2000 by Allan Hedges, former committee member, Prostate Cancer Foundation’s, Support and Advocacy Committee. Allan underwent successful radiation treatment at the Sydney Adventist Hospital, Wahroonga, in 1994.

The doctor picked up the papers on his desk, looked at his patient and said, "Well the results of your tests are back and they are positive. I am sorry to tell you that you do have cancer." Thus begins a journey down a road that we never thought we would have to travel.

Good morning my name is Allan Hedges and like Julie Fairbank, Mike Nicholas and Darren Carr, have had an experience with radiation therapy. We are not here to speak of medical outcomes or talk about the success or failures of radiation, but to convey to you the many inequalities that radiation therapy as a treatment has to overcome.

ACCESS:

One of the obstacles to be overcome is in choosing a doctor who is prepared to recognise the benefits of radiation treatment and the fact that it is often a very successful alternative to surgery. It is a very under referred treatment, the ugly duckling in medicine, the last treatment down the line when other treatments have failed. My own experience with prostate cancer demonstrated some medical reluctance to offer this treatment.

A urologist said my best option was surgery and was prepared to operate as soon as we set a date. Upon asking for alternate treatments, he became a little offside and with some condescension said that radiation could possibly be OK. He attempted to convince me that my survival odds were much better with surgery .I actively sought a referral to a radiation oncologist, and decided that was my path for treatment. Upon informing the urologist of my decision, he all but patted me on the head and said, "Well, the best of luck". That was in 1994.

EDUCATION:

In 1994 there was not a great deal of public information about prostate cancer let alone outside information about radiation therapy. We firmly believe that the very low profile of radiation treatment needs to be lifted with greater awareness made, not only to the public, but to some parts of the medical profession. Patients should be encouraged to ask about this treatment, discuss the subject with their GP and if appropriate, consult with a radiation oncologist. So often, once the patient has seen a specialist, the opinions expressed by that specialist are taken as gospel and the future of the patient is controlled by that opinion. I have in my file a letter from a man who had radical surgery on his prostate and had the worst possible outcome as a result of that surgery. Upon questioning his urologist, he was informed that he was the first patient to ever suffer such a result. The thrust of his letter was that in hindsight he should have asked many questions and sought a second opinion before proceeding with treatment.

CHOICES:

We also know that there is competition between types of treatment within the medical profession where some treatments are jealously guarded. Often the view of a surgeon is taken as the only viable treatment. I know several men who have regretted making a quick decision instead of having sought a second opinion.

Is a specialist surgeon going to send his patient off to see another specialist in another area of treatment on the off chance that the patient wants a second opinion without asking. Surely, if appropriate, the patient should be extended this courtesy of choice. It is all part of having that patient take charge of their own lives. Seeking out and joining a cancer support group is a must for people in a dilemma about treatment options, allowing them to talk to others who have been down a particular path. The Prostate Cancer Foundation can direct people to their nearest group. This seeking of second or even third opinions applies to all areas of medicine where the patient has reserved feelings about any form of treatment.

CENTRES FOR TREATMENT:

It is great to live in an area where there are excellent medical facilities, yet for those who are separated by "the tyranny of distance" the choices for treatment become very complicated. Six weeks of radiation therapy is handled reasonably well if the patient can be at home and still attend work between treatments. If that patient lives hundred of kilometres from a treatment centre, then many questions have to be addressed. Low cost accommodation such as Jacaranda Lodge at the Sydney Adventist Hospital at Wahroonga is essential. This can also be a very lonely stay if a spouse or friend is unable to stay with the patient. Even in a city centre, ease of parking, access to public transport, certainty of treatment times, appointments for scans and other tests and the reputation of the centre are all questions the patient will ask about.

EXPLAINING ABOUT TREATMENT:

What of the thoughts and apprehensions of a patient about the treatment itself and future prospects? Although a patient has no doubt learnt as much as possible about their treatment, he or she has little idea about what is really involved. In particular as radiation therapy is a non invasive, non surgical procedure, little is known about what actually happens. Except for some treatment where special shielding is required, or skin burning may happen, the process is relatively simple as far as the patient is concerned. However that first trip into the treatment room can be very intimidating, where large piece of equipment and nuclear signs warn of radiation hazards. Perhaps a trip into the treatment room before the first treatment is made could make the whole procedure less traumatic.

CARING:

Tender Loving Care is a vital ingredient with any form of treatment and with radiation therapy especially, The frail and the elderly are always in need of TLC, and as external beam radiation is still a source of healing with many unknown factors, assurance to the patient is all part of the healing process. There are many stories about doctors who find themselves as patients where a completely different perspective is encountered.

Likewise is a common complaint in surgical cases that a lack of communication and a reluctance of a doctor to fully explain what is to happen lead to a tension within the patient that does not help matters. That first meeting where we hear that word cancer is difficult for both doctor and patient. So many patients walk out the door barely remembering what has been said and in a complete state of shock. TLC should be an integral part of all medical teaching.

LOCATIONS:

Within NSW there are 13 centres for radiation treatment, with 9 in public hospitals and 4 in the private sector. Put yourself in the position of a patient requiring radiation treatment who lives a great distance from any treatment centre. The anxiety you would feel and the decisions that would be required would test you to the limit. Your apprehension about success and possible after effects would weigh heavily on your mind. How would you feel? For those of you whose decisions determine where such treatment centres are to be, please remember that part of that medical dollar needs to have some compassion and sensitivity in it. If new centres of treatment can solve some of the problems where distance and access are difficult, they will attract the right sort of medical professionals and help growth in those areas.

CONCLUSIONS:

Where does all this leave us? Between 1982 and 1996 there have been a total of 45, yes 45, reports and enquiries published, some at State and some at Federal level. Little has resulted from these. The key purpose of this workshop is to develop parameters for a Radiotherapy Conference organised by the Cancer Council, so that we can look forward to improve radiotherapy services in NSW. Many of us have been fortunate to have had easy access to this form of treatment, but an enormous amount of education is required at all levels so that it can be an option for so many people.

I leave this last thought with you. We are all aware of the inequalities in life, whether they be in social levels, earning capacity , physical and mental ability and in health. However in medicine, many treatment options are difficult to access, especially if cost or distance are obstacles. With increasing accuracy and success, radiation therapy sits very comfortably amongst other recognised forms of treatment. It is important such recognition be promoted and that those who plan and finance the placement of major items of health hardware recognise the difficulties so many people have faced in their search for successful radiation therapy.

Ladies and gentleman, the ball is in your court and I thank you for your attention this morning.

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