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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

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


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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