GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

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Latest Advances In Treatment Of Prostate Cancer And The Butterfly Effect

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The Blue Tiger

The Blue Tiger

The first blast of winter has reached my little tropical hideaway part of the world. There is a massive high pressure system south of the Great Australian Bight directing Antarctic winds right up the east coast of Australia. Night time temperatures have dropped below 10 degrees celsius with day time temps below 25 deg. It may not sound like a big deal to my southern neighbours but living in temperatures that average minimums of 25 deg to maximums of 35 degrees for nine months of the year it becomes a shock with the first winter blast in this part of the country.

At least the butterfly swarms are still passing by my verandah but I am guessing that this cold dry change will knock them back a bit for this year. Between March and May every year I can sit daily on my verandah and watch the procession of these beautiful creatures as they travel from the south in a northerly direction. I have even seen these swarms over the ocean 100 kilometers from land. Where they come from and where they are going I have no idea. They just happen here every year with the main type being the “blue tiger” but also many other species of all colours and sizes can be mixed with them.

Watching them the other day reminded me of an old metaphor called “The Butterfly Effect.” This was a theory exploring the concept of a small thing happening on one side of the planet (such as the flapping of a butterfly wing) can cause an immense reaction in one form or another on the other side of the world. It was part of a theory called the “Chaos Theory” and was generally attributed to calamities, however I believe in “Yin and Yan,” so the theory in my opinion should apply equally between good and bad.

One thing cancer has taught me, is to look at life more deeply and appreciate things in a more meaningful way, hence my fixation of my butterflies, their life cycle and the theory. Such a beautiful creature that evolves by unfolding itself from a lowly caterpillar after pupation. I like to believe the whole story offers hope that small actions can create massive changes for the good in this world. Mankind is still at the beginnings of meaningful good changes as witnessed by lifestyle differences. opportunities and other madness going on in the world; We are seriously out of balance. However the more developed countries involve themselves in the opportunity to continue to make advances in areas such as medical practices the more likely these advances will eventually filter throughout all the world. This then takes me to the subject I wish to offer readers in this article, regarding the advances made recently and where we are headed in the treatment of prostate cancer.

So how has treatment for prostate cancer advanced over the past number of years? Before I begin I should quote the following statistic for my readers. The prostate cancer 5-year survival rate has improved from 59% in 1986 to above 92% today, and likewise for most types of cancer the 5-year survival rate has increased. This increased survival rate is due to improved medical practices, the introduction of new drugs and/or the treatment methods and successful research outcomes.

In the case of prostate cancer, over 3300 men will die of this disease this year, even though it is still thought of as a slow-growing old mans disease. The truth is, that early low-grade prostate cancer is indeed slow to promulgate but there are high-grade aggressive varieties that are lethal, and indeed more younger men are now being diagnosed with this disease in their thirties and forties.

While PSA monitoring and DRE procedure have been the main indicators for biopsy; Research is searching for other prostate cancer markers to use, and several exciting pathological trials are underway. Medical imaging has also expanded, with much advances in imaging from MRI, CT and PET scans, along with ultrasound technologies. Much of this future researching and improvements should bring huge benefits in assisting doctors to discern at diagnosis, between the non lethal and lethal types of prostate cancers. This then, should have a great impact in decisions regarding primary treatment for the patient. Improved imaging should enhance the ability to locate and direct biopsies and also to better detect metastasis to bone and other tissues.

In the past few years there has been the introduction of new drugs such as Abiraterone Acetate (Zytiga) and Enzulutamide (Xtandi) which are advances in hormonal drugs offering greater survival rates, with less side effects. Sipuleucel T (Provenge) is an Immunotherapy drug and treatment, which stimulates the individual patients own immune system to attack cancer cells. Radium 233 (Xofigo) which is a radioactive type drug, used in the treatment of bone metastasis with prostate cancer.

Much research continues to search for and identify the different individual characteristics of prostate tumours. This may lead to drugs being available for specific types of tumours, and could lead to individual tailored drugs being used on a patient circumventing the need for current primary treatments of surgery and radiation. This could  have profound effects in preventing major life changing side effects.

AMEN

AMEN

There is much excitement and discoveries still to come in the medical world over the next decade, and I hope I am still alive to see much of it. Meanwhile I will keep admiring my butterflies for the hope they offer for a better world to come. Is it Possible?????? Perhaps.

 

Lee aka Popeye

 

 

Cancer And The Domino Health Effects Of Treatment

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Cancer Ribbons

Cancer Ribbons

I have been mentally calculating an audit lately of the personal health effects as a result from my prostate cancer and its treatments. It has become apparent to me, that the results of this audit may make for an interesting article for some readers. What follows is not intended as a “Poor Me” sympathetic seeking diatribe, but rather as a personal example of the domino effect that a cancer diagnosis can have on the health of a patient. I am sure that many long-term cancer patients would also see themselves, and their journey in the same way. My intention in this article is to highlight this issue so that fellow cancer patients, recognise that they are not alone, and to advise new cancer patients of the pitfalls that may await them on their path.

Before I begin, I should point out that prior to the time of my cancer diagnosis, I thought I was a pretty fit soul. I visited and walked Kokoda in 2008 and 2009. I was an avid sailor, diver and fossicker up to my diagnosis, and my previous health apart from skin cancers had been marvellous. In July 2011 I was about to turn a fit and active 64 years of age in September, and I felt bullet proof…….Until late August.

My cancer adventure began in late August 2011 when I experienced urinary problems that lead to my visit to the GP, and then for a PSA test and ultrasound. The results showed a PSA of 4.5 and an enlarged prostate that led to a diagnosis of BPH. (benign prostatic hypoplasia) I was given a prescription for pills to alleviate the urinary pain, and a future date in six months to repeat the tests. I didn’t quite make the six month period as the symptoms became much worse in January and February of 2012. In early March I had my first visit to the urologist, whose examination led to a biopsy; With the results confirming advanced aggressive prostate cancer that threw me into a spin mentally.

I needed to make a choice of treatments available, and through some early research and medical advice decided on, Radiation and Androgen Deprivation Therapy as my primary treatments. I immediately received my first injection of the drug Eligard, that I was to receive every four months for the next two years, plus an oral anti androgen drug taken daily. On the other hand in order to begin my radiation treatments, I first had to attend to my urinary symptoms which involved a surgical procedure carried out in May called a TURP (rebore.) The TURP procedure alleviated the urinary restrictions, but also introduced a series of urinary tract infections that persisted until September 2012. Finally in October I was able to begin the radiation treatment.

So there I was at the end of 2012, having had to cease work with the following health audit results of:

  • Various urinary symptoms, including some incontinence, and infection causing increased frequency, pain, chills and fever.
  • Erectile dysfunction and loss of any sexual libido.
  • Hot and cold flushes, constant mental and physical fatigue.
  • Sleep disturbances and increasing joint stiffness and joint pain.

The following year 2013 found me dealing with the above side effects, and attending to all the medical visits to doctors for blood tests and scans. The year finished with the following health audit:

  • All of the previous years health issues.
  • A new diagnosis of Diabetes type II, which may or may not be attributed to the Androgen Deprivation Therapy but included diet modification and blood monitoring daily.
  • A diagnosis of osteopenia, which is a precursor to osteoporosis or thinning of bone density. This may or may not be attributed to the Androgen Deprivation Therapy.
  • Intermittent urinary bleeding had started late in the year.
  • An instance of mental depression led to mental breakdown with considerations of suicide. This led to several sessions with a counsellor.

Early in 2014 the urinary bleeding events began to worsen, and become more frequent. I had a cystoscopy examination that concluded I had radiation damage to the bladder. In May I began hyperbaric oxygen treatment to treat the radiation cystitis in Townsville General Hospital for two months. Unfortunately this treatment failed, when I was admitted as an emergency with urinary retention, twice during the hyperbaric treatment. The frequency of hospitalisations due to urinary blockages and bleeding increased throughout the year, including several medical procedures to attempt to solve the issue. Finally in November, surgery removed the remains of my prostate gland, lymph nodes and the bladder. Pathology confirmed active cancer cells and tumour were evident in the samples. These had been previously undetected by PSA monitoring. Pathology also confirmed the bladder tissue was quite neucrotic and fragmented. The health audit for 2014 brings us up to date with:

  • Most of the previous two years issues still current.
  • The ill-health and the effects from pain, and mental anguish from instances of urinary bleeding and blockages that required hospitalisations.
  • Uncontrolled urinary incontinence from time to time.
  • The immediate effects of the surgical procedures, and rehabilitation needed.
  • The care and maintenance of the stoma, that was surgically created to replace the bladder function.
Sometimes its the truth

Sometimes its the truth

Looking back over what I have presented here, seems to be pretty much just a summary of events that I have written about in other published articles. That may be the case, but I think it still represents a good example of cancer and the domino effect that cancer causes in a person’s life. When I think about the domino effect, I wonder just how accurate are the mortality rates given for cancer by the statisticians. Could it be that the cause of death in some instances, attributed to conditions other than cancer, be actually a bi-product of the cancer domino effect????? As an example, prior to my surgery in November 2014, I was critically ill with blood loss and urine retention. My doctor at the time, agrees that without surgical intervention I would have died from blood loss by Christmas 2014. If that had been the case, would my death have been registered in statistics as being from my prostate cancer, or from blood loss and urinary retention?????

 

Lee aka Popeye

 

Jack and Jill Cancer Tragedy

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Support From Friends and Family

Support From Friends and Family

The world of cancer can really kick you in the teeth at times, the trick is to be able to bounce back and move forward but sometimes it is more difficult to rise and come up smiling when it belts you below the belt. The following story is of events that have overtaken a married couple who are close friends of my wife and I. It took me some time to choose to publish these events as it is such an overwhelming personal ordeal they are dealing with. I wrestled with my thoughts on the moral justification in making their ordeal public and now I have done so in the hope others may be inspired by their story. In the following events I have used the names of Jack and Jill to protect their privacy and as I write I am still wondering at times if all this is not just a bad dream.

Jack and Jill are now in their late sixties. A few years ago Jill was diagnosed with bowel cancer and was at the time successfully treated with surgery, radiation and chemotherapy. A short time after Jill’s cancer treatment Jacks brother was also diagnosed with bowel cancer and he was also treated successfully with surgery, radiation and chemotherapy. With all the health and medical issues that had suddenly descended on them Jack and Jill decided to retire, buy a caravan and join the grey nomads touring Australia.

About the time they bought the van Jack fell off a trestle and broke his leg, down toward the ankle so the grand Australian tour departure was put on hold until his leg healed. Eventually they got underway but just a couple of thousand kilometers into their trip Jack and Jill found themselves stuck in Townsville as Jack had developed an infection in the bone where he had originally broken the leg. Townsville is where my wife and I met this pair and we became firm friends. Jacks infection was such that the leg was invaded by a medical steel structure from knee to ankle with rods descending into the leg at various places to deliver the antibiotics needed to the bone. Jack also was treated in the hyperbaric chamber for two months to try to assist the healing. Jack endured nearly twelve months of treatments to try to beat the bone infection without success.

Late last year the medical specialists and Jack started discussing amputation of the leg as the final solution and while these discussions were going on Jack had a colonoscopy which led to biopsies and he was then also diagnosed with bowel cancer. Now Jack and the surgeons had two problems to deal with and a decision was made to have both the amputation of the leg plus the bowel resection done at the same time (a 12 hour operation.) Both of these procedures were completed early in March and Jack is doing OK. He faces a lengthy rehabilitation period for his leg and prosthesis followed by perhaps radiation and extensive chemotherapy for the cancer.

The cruncher to all this came to a head recently when Jill revealed that she had been re-diagnosed with the return of her bowel cancer which had now spread extensively to her liver. The doctors informed her it was incurable and terminal, she could only expect her time left to be between 12 and 14 months. Now Jill had been informed of this some time ago but decided to keep it to herself until Jack had gone through his ordeal. That last sentence says more about the love and respect that one human can hold for a loved one than any explanation I could give. They have offered Jill some strong chemotherapy, not as a cure but to help prolong life long enough for both of them to return to their home once Jack is stabilised. I shake my head with despair for my friends and wonder how these sort of events can overtake good peoples lives.

With Love from Friends

With Love from Friends

I offer the following verse I composed for them and anyone else out there who might find some comfort in these words. It was inspired by the words of Gordon Lightfoots haunting ballad called “The Wreck of the Edmund Fitzgerald” The lead line has haunted me for years “Does anyone know where the love of God goes when the waves turn the minutes to hours ?” Somehow the haunting returned and I built on it in my own words as the timing seemed just right for my friends.

Does Anyone Know Where The Love of God Goes?

Does anyone know where the love of God goes when a cancer turns your time left to hours?

In the dark and despair only faith can repair, what the verdict of cancer has soured.

But his love is still there in the fond memories we share, with the love-ones we see that surround us.

Those moments are there when the laughter rang out and the hugs and the kisses were about us.

The hard times and fears, the regrets and the tears, have been dealt with and left far behind us.

So does anyone know where the love of God goes? Well I think the answers not hidden.

Seek deep in your soul among your memories there and give thanks to what he has given.

Lee aka Popeye

Discussion On Can Cancer Be Cured

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Is Cancer A Business

Is Cancer A Business

I am about to enter into the conspiracy view of a subject that has some rational common sense. This is not to say that I am a believer in this conspiracy theory on cancer cure but it is an issue I thought worth presenting here for my readers.

During periods of my life when in a philosophical frame of mind ( most times from the deck of a boat late at night while in a good anchorage) one of the questions I would pose to the universe from time to time was “What could exterminate the human race????? Apart from asteroid strike, comet collision or the sun disintegrating I thought about epidemic disease. The world has and continues to deal with many contagious outbreaks of disease in many forms Eg. Bubonic plague, Smallpox, Malaria and recently Ebola. I am now left wondering if the epidemic disease that deserves more attention as being the worlds largest threat is actually cancer in any of its forms.

 Thinking about what I have just written above, raises  Some other big questions that need to be answered, such as: “Is the incidence of cancer increasing in the world,” “What is causing any cancer increases” and “Can cancer be cured”??? Well, according to the World Health Organisation, the incidence of cancer is expected to increase by 70% within the next two decades. That means there will be an increase from 14 million new cases in 2012 to 25 million new cases per year by 2032. The scope of that statistic is amazing if you consider it is the equivalent of Australia’s current population, every man, woman and child being diagnosed with cancer every year. Over the same period of time cancer mortality rates world-wide are expected to increase from 8 million in 2012 to 13 million deaths per year.

The causes of the increase in cancer diagnosis is subject to speculative arguments but does correlate to the massive changes in living standards for the majority of rich countries over the past 100 years. The increase in the consumption of red meat, industrialisation and rise in air pollution, the discovery and manufacturing of chemicals used in everyday cleaning and many more influences that found their way into our modern-day way of life. The increase in life expectancy is also a reason given for the increase in cancer rates. The statistics tell us that by the age of 85, 1 in two men and 1 in three women will have experienced a cancer diagnosis during their lifetime.

While medical establishments and governments continue to advise the public that a search for the cure for cancer continues, the cure remains as elusive as ever. What the medical and pharmaceutical establishments have been very succesful at; Is in the overall management of cancer treatment including improved screening methods. Advances in the initial primary treatments of surgery, radiation and chemotherapy have been amazing as has the success of new cancer drugs developed. As a result of these advances the 5 and 10 year survival rate for cancer patients has increased dramatically.

This then brings us to the key issue of this article and the question “Can cancer be cured” ?????  Well now, this statement raises a whole lot of other assumptions because if you look at cancer treatment worldwide from a business point of view, you will soon realise it is worth an under-estimated trillion dollars annually and is also a growth industry. The conspiracy theorists could be forgiven for asking the question in this way “ Why would a trillion-dollar a year growth industry want to find a cure and close itself down”???????

If the true answer is in favour of the conspiracy theorists there are two main sides that need to be given more thought: The world is based on capitalism. Even if you happen to be Russian, Chinese or whatever, the money-go-round is essential for our wellbeing. Consider this. Huge profits are made by large corporations and distributed to share holders who in turn will use those funds in other areas. Thousands of individual people including medical researchers throughout the world, also earn a living from this industry. On the other side of the coin, moral issues need satisfying when you consider that every family on earth will be touched by cancer in one form or another. Time will be the judge on this matter in the long-term. As Popeye might of said “It is what it is, and that’s all that it is.”

Is this Humanity??

Is this Humanity??

My personal view is that with advances in screening recently and those expected in the future, most early cancers can be cured successfully. I have a belief that new types of cancers will appear as time goes by as a consequence of lifestyle changes affecting our lives in the future. Generally I feel that sadly, cancer will be with us for many years to come.

Lee aka Popeye

Living with a Stoma after an Ostomy

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There is always another way

There is always another way

Here I sit three months after my radical surgery that has given me a new lease on life and I feel healthier than I have been for the past three years. The surgery has also left me a legacy of dealing with a stoma and the new physical disciplines and mental attitudes associated with my new plumbing arrangements. Very basically there are two types either a colostomy (bowel) or urostomy (urine) both of which utilise a bag or pouch placed over a stoma to collect waste and changed out frequently.

 

Ostomy surgeries are usually performed for a variety of medical reasons such as endometriosis, crohns disease or cancer. The surgical formation of a stoma can save a patient’s life and provide a near normal quality of life than would otherwise be the case. At the time of my surgery there was a chance that I might have had both types of stoma’s installed as it was unclear if the surgery might damage the bowel as well. However luck was with me and the surgeon when all went well and I received the urostomy stoma only.

A whole new experience opens up for patients receiving a stoma. First and foremost is the arrival into your life of the stoma nurse who is a trained specialist nurse. The stoma nurse is responsible for educating the patients on stoma care and hygiene. The nurse is also responsible for training the patient in the use of equipment necessary to apply to stoma’s. The stoma nurse is also the first point of contact to whom the patient will report to on a regular basis. The patient will find themselves members of the Australian Ostomy Association which allows them access to a free monthly allocations of bags, pouches or other equipment, but postage costs do apply. The association also publishes a magazine on a regular basis with much valuable information for patients.

I have settled into a routine easily enough and am truly grateful for the good health I now feel. I still haven’t got back my strength fully and some days are better than others but overall I feel almost normal. I will never be able to say I believe my cancer is gone for good, but my PSA is now undetectable and I know that at least all the cancer that was known to be still active has been removed. Still, there are some issues with having the urostomy that I need to explain for readers.

Since my urine is now flowing via a conduit through my abdomen (just to the right of the navel) into a collection bag it can be subject to leaks. Leaks occur without warning when seals or base plates degrade, fold up or let go. I have trialled different types with and without seals and have finally settled on what I consider the most reliable. This apparatus normally will give me two days and nights (with daily bag changes) without failure. The bags normally need draining approx every couple of hours or when about a third full and is a simple procedure of turning on the tap over a toilet bowel. For night-time I hook my bag up to a larger night bag and this is emptied and cleaned each morning.

From time to time I have experienced leaks with the worst case being a leak during the night from either the stoma fitting or a night bag leak. I have tried to pre-empt these disasters by using a waterproof blanket under my bed-sheet and a tray under the night bag. Still accidents will happen and I have to deal with them and the clean ups as they occur. Leakages that happen while out and about are dealt with by a bag that I carry with a change of clothes plus equipment to change on the stoma. Even though a leak event is fairly uncommon it is still a mental issue for me and affects where and when I go anywhere and what I take with me. I now tend not to travel if accommodation is a factor and when I do travel, I prefer to be in my own car with all the equipment I need. Heading into the city on business is controlled by my knowledge of the location of public toilets and preferably the handicapped ones.

As I have often said before cancer is as much about the effects of cancer treatments for patients apart from the effects of the cancer itself. Cancer is a catalyst for all sorts of a domino fiasco’s introducing all sorts of impacts on a patients life. My pathway to where I am today is testament to what I have just said, however I would like to say that I am extremely grateful to be still here. Medical opinion was in agreement that my used-by date was approx last christmas if the surgery had not taken place. Learning to cope physically and mentally with my latest hurdle is a small price to pay for the extension of my used-by date especially when I feel as well as I do at the moment.

Graphic of a Urostomy Stoma

Graphic of a Urostomy Stoma

“I can do this …………and I can do it with a smile.”

Lee aka Popeye

 

My God Box Adventure

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My God Box

My God Box

Welcome back for the year 2015. I hope everyone enjoyed the festivities and I sincerely hope that the new year will bring health, prosperity and peace to the world. In this article I have decided to write about a subject dealing with spirituality. I have been inspired to do this by an event that happened accidentally toward the end of my treatment for the gross hematuria I was experiencing. When I was at my spiritual lowest point during my illness, full of despair and accepting that I could be reaching the end of my life, a friend came to me and suggested the following idea.

My friend suggested I create a “God Box.” The idea being that I acquire a small box of some type where I could write down on little slips of paper all my fears, anxieties, problems or prayers and deposit them into the box for God to look after. Once these fears were deposited I could then just let go of them knowing they were in the hands of a higher authority.

Now I have never been a pious religious person who was a regular churchgoer, but I always retained a sense of confirmation that there existed a God that was responsible for all creation. The “God Box” suggestion just captured my imagination and fell in line with my overall belief in a creator. I believe that everything in life happens for a reason, both good and bad. I also believe my life has been directed at certain times by someone other than me when events have caused me to travel in different directions than I thought possible. So the search for a suitable box began and my wife took exactly 2 hours to locate the perfect box in a local op shop for $2.00. ( A picture is included at the head of this article.)

I began depositing my little slips of paper containing my fears just weeks prior to the investigations that revealed the full extent of my serious condition and the surgical suggestion that could (and has done) saved my life. It was during this period that a volunteer chaplain visited me in hospital and seeing the “God Box” at the head of my bed asked me about it. After I told my story she was amazed and delighted and then commented by asking if I included any “Thank You” notes among the little pieces of paper I was depositing. It was then that I realised with embarrassment that my little notes were all one way with no such words of gratitude given by me, I fixed this issue straight away.

Readers can choose what they say or think about my story here but I can say for myself that my “God Box” came about as a suggestion from a friend during a dark period of my illness. This little box changed my life at the time and continues to do so. It gave me great comfort and hope while easing the fears, the stress and despondency I was feeling. From the time I accepted the concept of my little box and proceeded to deposit my little notes, my health outlook took a turn for the better. I believe that little box entered my life at just the right time and brought about changes that resulted in my successful surgery. It also reinvigorated my spiritual awareness.

Some Good Advice

Some Good Advice

I originally thought this was quite a unique idea that my friend suggested to me but I have since discovered the concept has been well-known and used for hundreds of years by many religious faiths. I have included a few links to web sites for readers who may be interested in further reading. I decided to write this article in the hope that the “God Box” idea might be of interest and give comfort to other chronically ill patients or their carers doing it tough out there. “Thank you God”

Further Reading

http://theuntoldstory.guru/2014/08/25-ways-to-use-prayer-boxes/

http://www.theglobeandmail.com/life/relationships/the-god-box-transferring-your-troubles-to-a-higher-authority/article4210039/

http://www.realsimple.com/work-life/family/relationships/inside-god-box

 

 

Regards

Lee aka Popeye

Blood In The Urine, Radiation Cystitus And My Prostate Cancer Management.

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And so can opinions

And so can opinions

I feel compelled to write this article to summarise all the major medical events that have led me to where I stand today. I write exposing my experiences with this disease and the medical to-ing and fro-ing from the medical side of my disease management. I feel that some of these medical decisions and procedures I have personally experienced have left me puzzled. Perhaps my story may be of assistance or support to those who may be experiencing the same issues or for those who may yet come down the same paths. Before I begin I would like to state the following:

“I am not a doctor and the views I present here are purely personal and are private opinions only”.

I have deliberately refrained from specifically mentioning doctors names in this or any of my past articles to maintain anonymity for those medical professionals I have encountered. Medical personnel, be they doctors, specialists, nurses or assistants are human just like everyone else. There are many stages of competence within the profession. Sometimes mistakes are made and sometimes an inspired insight may provide a miraculous cure. In almost all of these professionals there is a desire to be as good as they can be. However natural abilities will vary enormously just as in any other profession. The trick for patients to learn is being able to recognise the variations in those treating the illness.

I remember, way back in 1993 I had an operation on my back and while recuperating I received one of those spooky insights that happen from time to time. It was in the form of a remark from a disgruntled fellow patient in the bed opposite me and was spoken to me as I was about to leave the hospital. He called me over and said the following: ” Just remember lad, when you get back home that they don’t call a doctor’s office a medical practice for no reason”. He motioned me closer to him then said “the emphasis is on the word practice“. In a way I guess you could say his remark supports the cliché of getting a second opinion on medical matters.

I live in the regional area of Mackay Queensland Australia, Ah! such a beautiful area. It seems like such a long time ago in March 2012 when I was diagnosed with prostate cancer. My PSA at the time of diagnosis was only 6.5 having risen from 4.4 a couple of months previously. The pathology identified a Gleason 9 (4+5) in all 18 core samples with tumour volume of between 80% and 100% , the grading was a T3a. That diagnosis led to two alternatives. The first urologist advised surgery and a second opinion from a different urologist advised it was inoperable and this was supported by opinions from two further specialists in Brisbane. These specialists all recommended Androgen Deprivation Therapy plus HD brachytherapy followed by external beam radiation. I then accepted this advice as the way I should choose.

Covering all bases

Covering all bases

The urologist then referred me to the two specialists in Brisbane to begin the brachytherapy in May. When I finally consulted with these specialists they were annoyed as they had not been advised that I was symptomatic with urinary problems (the reason my cancer was discovered in the first place was because I had urinary symptoms.) They sent me straight back to Mackay to get this sorted out prior to having further treatment. I underwent a TURP procedure in May where the urologist removed a third of my prostate tissue during the rebore to alleviate my symptoms. After my discharge from hospital I contracted an infection that took months to resolve.

Finally in September my urologist referred me back to the specialists in Brisbane to undergo the HD brachytherapy. It was at this meeting in Brisbane that I discovered that because I had undergone the TURP procedure with so much tissue removed I was no longer a candidate for HD brachytherapy. I was then offered a full course of external beam IMRT radiation with the continuation of the ADT medication.

I eventually received a full course of IMRT at the Sunshine Coast in Queensland, 38 days of radiation for a total of 78 Gy. My PSA dropped to a nadir of 0.02 over the ensuing months and I also continued my ADT medication. In March 2014 I had been diagnosed for two years and as my PSA had remained stable I was given the OK to stop the ADT medication. My latest PSA result in June 2014 remains at 0.02.

Back in March 2013 My urologist and I had a disagreement when he offered to perform an orchidectomy procedure (surgical castration) prior to me leaving the private health system. As a result I discontinued our medical relationship. In August 2013 I began having visible minor bleeding in the urine from time to time. This steadily became more frequent and was identified in pathology when I presented to my GP with this issue.

I eventually had a cystoscopy as a public patient that was performed by the original urologist I consulted way back on diagnosis day. He also undertook consultation work at the Mackay public hospital. After the procedure he diagnosed radiation cystitis to the bladder wall and referred me to the radiation oncologist based in Townsville. The radiation oncologist then referred me to the hyperbaric medical unit in Townsville general hospital where I underwent treatment (This has been outlined in detail in a previous post.)

During my hyperbaric treatment I experienced severe bleeding and urinary retention on two separate occasions requiring admission to the hospital emergency department in the middle of the night. The emergency department personnel were great, admitting me immediately and were able to catheterise me on both occasions, however my time there was painful and distressing. (A full coverage of this can be read on my two previous posts.) The only treatment I received, was the bladder irrigation via the catheter and at no time was it suggested to me, that they might try a further investigation to confirm the cause of the bleeding, nor carry out any cauterisation. I managed to see the medical registrar on four occasions for a total time of approx 4 minutes but never saw a urologist. Both times I was discharged when the urine finally cleared of blood.

interestingly I recently received copies of blood tests that were done when I was receiving treatment at the hospital and all my blood counts were below normal. I now wonder if these low blood counts were serious enough at the time to have warranted further treatment.

It was during my hospitalisation that I was approached by a fellow patient with similar issues. He recommended I see his personal urologist in Townsville who he valued highly for an opinion. I was able to organised a referral and saw the urologist as a private patient and was immediately impressed. This has also been covered in a previous post but it is worth repeating here. He performed a cystoscopy and found the following (This is from his report):

There was a small submeatal stenosis which was passable ( a stricture–narrowing of the opening of the urethra ( this can be caused by catheter use) The prostatic fossa (the prostate capsule or prostate bed) was quite open and there were quite a lot of radiation affected vessels which were very friable. These were diathermied (cauterised) Both uretic orifices were normal and there were no calculi (stones) There was no radiation cystitis in the bladder or any papillary lesions. Sooooo there you go, a different diagnosis from a second opinion. Seems like the bleeding was from the remains of the prostate gland and not the bladder.

It has taken me quite a few weeks to get over this procedure and I am still battling with urinary issues including pain and incontinence. It is steadily improving and I am hopeful that I will return to normal at some stage. The important thing is that the bleeding has settled down. I did have some slight bleeding from time to time and I did pass a few clots but the incidence of this is fading fast as the weeks go by. I am scheduled to have a tele conference with the urologist in two weeks where I will get a chance to ask him further questions on my prognosis with the bleeding.

Here then is my summary of discord:

While I know that I had no alternative but to have the TURP procedure and I am grateful to the urologist that it resolved my urinary problems. However, I am left wondering how he was unaware it would rule me out for the brachytherapy treatment before he shunted me to Brisbane. Later, his offer to perform the orchidectomy was put to me in a way that offended me and as far as I could see had no basis of offering me any cure.

The first diagnosis of radiation cystitis in the bladder wall is at odds with my second cystoscopy diagnoses. I still wonder, why???

I have searched for information regarding the issue of bleeding from the prostate gland after radiation with little results. If this is indeed a possible side effect as it appears to be with me, would it have been advisable to have had the prostate surgically removed in the first place??

During my hospitalisation, should the hospital have carried out further investigative measures, particularly when I turned up two weeks after the first visit for the second admission???

I have now been treated both as a private and a public patient and it offends me that private patients are given general anaesthetic for procedures such as a biopsy or a cystoscopy, but not if you are a public patient. Both these procedures are distressing to endure without general anaesthetic. In the public system you will receive an anaesthetic gel which is next to useless.

Regrets I've had a few.....but then again too few to mention.

Regrets I’ve had a few…..but then again too few to mention.

 

The medical management road for patients with chronic illness is a mine field of pitfalls with choices offered by medical opinions. Patients should endeavour to research and learn as much as they can about their condition. Please be aware however, that knowledge is a two edge sword and being able to rationally dissect the good from the bad and remain as objective as you can is the best advice I can offer. I keep copies of all my medical records and I try to keep a diary. Lastly never be afraid to seek a second, third or fourth opinion. After two and a half years of my illness I am still seeking information and knowledge regarding my prognosis.

Cheers

Lee aka Popeye

 

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