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

Archive for the ‘radiation’ Category

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.



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


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

The Latest Update Regarding My Radiation Damage and Cystitis

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Luck of the Irish

Luck of the Irish

Well I guess I am living proof that everyone’s cancer journey will be different. In my past few articles I have described my condition and ongoing treatment with radiation induced haemorrhagic cystitis of the bladder. This article will just about bring my odyssey to (I Hope) a successful outcome (or at least an acceptable one.)

Since I wrote my previous article I have had another incidence of heavy bleeding with clots and tissue pieces that have again caused a major blockage and once again in the dead of night. This required another ambulance trip into the Mackay hospital and the dreaded catheter again. The hospital once more organised an emergency flight by the RFDS ( Royal Flying Doctor Service) to Townsville Mater hospital where I spent 10 days trying to clear up the mess. During this time I lost so much blood I was given a transfusion to steady the blood count.

Interestingly the treatment that finally helped stopped the bleeding, was an older treatment with the bladder being irrigated with an Alum solution. This was a crossed finger and hope for the best selection in an attempt to stop the haemorrhaging. The treatment had not been used for some time so new protocols had to be written by a different Townsville hospital that was able to supply the staff with the knowledge and the equipment. I was transferred for the treatment that lasted for most of the day. However within twenty-four hours the bleeding, clots and other crud actually cleared up to everyone’s amazement.

The following information may be of interest for readers. I believe that the alum (or aluminium potassium sulphate /or/ aluminium ammonium sulphate) was the same stuff that men used to carry around with their shaving equipment in the old days. It was in the form of a white pencil thing that if my memory serves me was called a styptic pencil. It was used when the shaver nicked himself using a razor, the pencil would be wetted and applied to the cut and stopped the bleeding.

Some good advice

Some good advice

Well, “blow me down“, the treatment worked and continues to do so for the moment. This has been a huge relief but it also bought me the time that has allowed me to have a brand new type of MRI scan done here in Townsville. I had to pay the full cost of the MRI as medicare have not listed it as yet. The results have been extraordinary as my specialist was able to show me in great detail the workings in my pelvic area.

The bladder is badly damaged, so much so there is barely any room to contain the urine. The walls of the bladder are udder like with huge areas of a varying of thicknesses that are my future, as and when they begin to break away causing the bleeding and blockages. The bladder has to be removed and I will be fitted with a stoma. The specialist then showed me in vivid detail the active cancer cells still attached to the remains of the prostate bed and he is certain that he will be able to remove these totally. Time will tell the micro metastasis story on these for my future.

The main concern of the surgeon is the problem of the possible fusing of tissue between the prostate bed and the rectum/anus area. It appears from the MRI that there is a division in the tissue but there are parts that are hidden from view so he will have a rectal colon expert standing by if needed.

I will certainly be left with a stoma for the urine for the rest of my life. In the worse case scenario If there are problem issues with the fusing of tissues then possibly a further permanent or temporary colon stoma depending on the amount of damage encountered and the fixability of this particular issue.

I am due to have the procedure done next Saturday 8th November and it seems strange to me that here I am having standard prostate cancer treatment but it has all been back to front from the normal way of the workings of doctors. It is interesting that I am able to have this surgery after radiation but I can say I am looking forward to a resolution to my bladder problem. My doctor says approx. 5% of patients experience the type of bladder issues I have endured after radiation treatment while 95% sail through. I can understand his point but I would like to tell him and my readers that being a member of the 5% brigade has been frightening. I can hardly wait to have this resolved.

Some more good advice

Some more good advice

Although a little apprehensive as to the results of my surgery on Saturday I realise I have no choices left to deal with this haemorrhagic cystitis thing and the procedure is the only hope I have of resolving this issue. There is a part of me however, deep down inside that is already wondering what my next little adventure may be with this cancer journey.


aka Popeye

Further Reading


Radiation Treatment Damage and Blood in the Urine……….Another Update

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Where to go ???and What to do

Where to go ???and What to do

It seems nearly a lifetime ago that I put pen to paper and in some ways it has been a lifetime. In my previous posts I have set about describing a new cancer path that has appeared for me that is still evolving as I write. Radiation damage to my bladder and pelvic area has progressed at a remarkable rate and seems to have begun a life of its own. When I first went looking for information on this subject I discovered mainly technical references to this issue with very little personal information from a patients point of view available. Because of this I decided to concentrate my efforts to describe in a personal way the effects of this condition for other patients who may be heading in the same direction. I cannot offer statistics on the prevalence of severe radiation damage suffered by patients but my first hand experience allows me the opinion that the condition is a serious debilitating and life threatening experience for those afflicted. There appears to be no easy fix for the problem and no prognosis available as the issue evolves and grows in severity and patients move from procedure to procedure.

From where I now stand I view this condition as one that should be more seriously openly, considered, discussed and understood when choosing a primary treatment involving radiation treatment to the pelvic area. Complications for this condition, if it occurs will be hindered by the constraints of limited surgical procedures available and the unavailability of further radiation treatment post the initial treatment. Chronic radiation damage to the urinary tract or bladder can be a life threatening event no less than the cancer can be. The symptoms of bleeding, clot blockage and urinary retention leads to organ spasms and toxic shock with the whole body in seizure. This is only relieved by heavy pain killing injections and the insertion of a catheter. Even the catheter itself can clot off or slip and block the bladder neck causing the same symptoms ( I have experienced this multiple times over the past two months, including once when I expelled the catheter by the force of the spasms.) The following is a time line of my treatment and hospitalisations over the past few months.

The progress of blood in the urine to full-blown urine retention due to blood clots started slowly some twelve months ago and then rapidly accelerating to how it has been for me over the past few months. My treatment began in the hyperbaric chamber undergoing a 50 daily treatment plan. This eventually failed me when in June this year I was admitted twice to the Townsville hospital emergency department and hospitalised for a week on each visit. I then attended a recommended urologist who performed multiple procedures during August and September using a cystoscope applying a green light laser vaporisation and cauterisation of the friable blood vessels that had been damaged by the radiation treatment I received nearly two years ago. The largest procedure I had recently was another TURP where the remains of the prostate gland was completely vaporised and the remaining blood vessels cauterised.

In between these procedures I have been hospitalised in August in the Emerald general hospital and in September three admissions to the Mackay general hospital was followed recently by an emergency air flight to Townsville by the Royal Flying Doctor Service. This last episode delivered me back to the urologist who performed some more diathermy to my bladder wall to stop the bleeding and clotting. In fact I am writing this article as I recuperate from this latest adventure in Townsville before travelling home to Mackay.

At a meeting with the Townsville oncologist last Friday, I learned that tissue samples the urologist sent to the pathology laboratory from my latest TURP has revealed active cancer cells still in the remains of the prostate bed. What this means is that the previous radiation treatment has failed and the cancer is still in situ. I ceased using ADT (Eligard) last March as my PSA had remained stable at 0.02 over the past two years. My oncologist has now suggested that I consider keeping a close watch on my PSA for any increase and doubling time with the view to restarting the ADT when this occurs.

Where the blazes do these end up

Where the blazes do these end up

As I write this I feel like I have been run over by a bus, dealing with the after effects of the procedures including some serious incontinence issues which I have not described within this article but they deserve an article some time in the future. The good news is, that for now the bleeding and passing of clots has finally stopped for the first time in months. I am not as concerned about the return of the cancer as I am about the possibility of further bleeds and urinary retention in the future. To undergo the uncontrolled body spasms, pain and despair associated with full-blown urinary retention is a major….. major……., major fear for me and I dread the next episode if there is more to come …………………….. and unfortunately there is no-one who can guarantee there will not be future episodes.

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.


Lee aka Popeye


Blood in the Urine, Radiation Cystitis and Wait…….There is More Side Effects.

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Its all about dealing with side effects

Its all about dealing with side effects


It seems some things are never simple for me these days…… Things have changed somewhat since publishing my previous story on my diagnosed radiation bladder cystitis and the hyperbaric treatment I was having to correct the problem. There has been a new diagnosis offered for the bleeding I was experiencing. To explain this issue I will describe the events that have taken place since my last article “Blood in the Urine and Radiation Cystitis Part 2.”

In my previous article I described graphically my hospitalisation with urine retention due to clotting. I deliberately did this so that people might have some understanding of what this condition may be like. Three weeks after I was released from that first hospital visit I again presented to the emergency department with the same symptoms and the dreaded catheter was inserted once more. This time my stay would be for a week before the bleeding subsided, so I got to experience the dance of the bladder spasm’s again.

It was during this second hospital visit that I had a conversation with a colleague I had met in the hyperbaric medical unit that would change the game plan a little. Our conversation began with a critical chat on, “How come the hospital didn’t perform another cystoscopy and cauterise the blood vessels responsible at the time.” Then my colleague recommended a certain urologist in Townsville and suggested I should get a referral for an appointment as a private patient. My second hospitalisation coincided with the end of my hyperbaric treatment and sadly it was presumed that the treatment had not been succesful for me.

A few days later I was able to consult with the recommended urologist in Townsville. He was very thorough and was able to access most of my medical records over the past two years. After an examination including a DRE he advised me to consider having a cystoscopy to evaluate the condition along with any cauterisation required. He also explained that it was his opinion that my bleeding problem could be from my prostate gland and not the bladder itself. He explained that the remains of the prostate gland after radiation treatment contains a gelatinous amount of dead cells and damaged blood vessels. This gelatinous material continues to enlarge and will slough off from time to time causing hematuria and clots in the urine. He would be able to make a definitive diagnosis during the cystoscopy.

And so it was……. After the procedure the urologist confirmed that while my bladder does indeed show evidence of radiation damage it was not the main cause of my troubles. The remains of the prostate gland was at the centre of the bleeding I had been experiencing. He cauterised the surface of the gland in the hope that this would be sufficient to correct the problem. Time will be the decider on the success of this procedure, if the bleeding recurs, the next plan is to go back in and scrape the gelatinous mass and remove it entirely back to the capsule, just like scraping out an orange.

It is now two weeks down the track since the latest procedure and cauterisations and I still feel pretty knocked about. I am experiencing urinary problems including more visits to the loo complete with urinary pain and mild bladder spasms from time to time. Some incontinence with urgency, pain and inflammation within the pubic area and to round it all out the UTI is back. The good news is that I have not experienced any bleeding so far and my new urologist claims that I should improve within the next week.

So there you have it……A bit of a long saga but I am happy to have presented it here in the hope that some other poor soul may benefit from my experience. It is said that every persons journey with cancer is different and I have to agree. This radiation damage voyage has led me through some horrible events and was looking like the condition might remain unresolved. All of a sudden a new path appeared out of the blue with a medical opinion that it just might be the remains of the prostate gland that is the problem. None of the previous doctors I had seen about the bleeding had mentioned other possibilities apart from problems with the bladder. Indeed the bladder may be an issue further down the track as it shows damage but for now perhaps the cauterisation of the prostate will let things settle for a while.

You decide the treatment and suck it and see

You decide the treatment and suck it and see

My cancer is still in remission but the side effects of my treatments continue to send me down some awful dry gullies since my diagnosis. A side effect of the hyperbaric treatment  that I have been afflicted with is a visual degradation, where it seems like my eyes have been smeared with Vaseline and everything is out of focus, even glasses do not help. the doctors assure me that it is a rare occurrence and I should get over it in eight to twelve weeks. Returning to the more serious bleeding events, it is worth stating here, that the side effects of radiation bladder cystitis and radiation proctitis of the bowel occurs in a very low percentage of patients receiving radiation treatment in the pelvic region. However if you happen to be in the very low percentage I hope my story might be of benefit. In closing this article it has made me think about the decisions made when I was first diagnosed with prostate cancer. If the new diagnosis of bleeding from the prostate gland proves correct, then the question would be. Would I have benefited had I elected to have had surgery and removed the gland prior to radiation??? This will be a question I will put to the urologist on my next visit, but I have a feeling there will be no definitive answer.

Lee aka Popeye


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