Well it has taken me a little while to recover sufficiently from my surgery to be able to report progress back to my readers, however here I am. Firstly I would like to thank all those friends and family members who phoned me with personal support and best wishes prior to the surgery. I really appreciated those calls and they helped me feel not so alone, I took those wishes with me into the surgical theatre on the morning of my procedure. So here then is the final chapter (I hope) of the resolution of my gross haematuria.
I mentioned in my last post that I underwent an MRI scan for an updated analysis of the bladder and what was left of my prostate gland. This MRI was undertaken on a machine that was new to the Townsville area and was not covered by medicare and the full cost had to be payed by me. This technology should be interesting for men facing a biopsy for prostate cancer as it was a 3 Tesla multi parametric MRI, The resolution and findings of which I was to find out was truly amazing. The MRI images were so clear even I could see the problems and the report indicated just how bad the condition of the bladder was. however the MRI report also identified and graded the remaining cancer tumours from T2 to T3a in various parts of the prostate including the bladder neck. It ruled out tumours in the lymph glands and ureters. All this MRI information was confirmed as correct in the pathology report after completion of the surgery. So perhaps we have a new tool able to screen men that is not as invasive as the current biopsy protocol’s.
The operation was major surgery taking nearly eleven hours to complete and included the removal of the bladder, prostate gland, lymph glands and biopsies of the ureters and appendix. It also included the formation of a stoma using part of the ileal conduit from the bowel. Recovery is slow but I am so thankful to have been given this second chance and an escape from the fear of the blood clots and blockages I was experiencing. The fact that all remaining identified cancer has been removed gives me confidence that I will enjoy many more years of health although I recognise that there is no guarantee’s against the cancer returning in the future. At least I feel like I now have a future as such. I was in such a bad way prior to this surgery and heading downward rapidly that I feel without this procedure I would have died from the complications of the haematuria in a short time.
My story is now told and hopefully will remain on this web site for any other poor soul who may be unlucky enough to be on the same road. My cancer experience and treatment with radiation is a rare experience for patients but none the less remains a possibility as I am testament to. I have been lucky enough to have found a urologist who had the skill sets and experience to successfully tackle the operation on a patient after radiation treatment to the pelvic area and to him I will be forever grateful. I am happy to discuss my little adventures to anybody who seeks any further information. Here’s looking at life!!!!!!
As the year is ending while I am still mending I would like to take this opportunity to wish everyone a stress free and happy Christmas and a healthy prosperous 2015. I will hopefully be back in touch with this site early in the new year.
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.
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
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.
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
I thought I had closed off the subject on haemorrhagic bladder cystitis and blood in the urine but recent events have led me to write this article. What I am about to describe is not a “Poor Me” event but an article I feel needs to be explored to inform those patients who may have to face the same situation as I am going through. This is a personal description of what it is like to have a massive bladder bleed with retention and bladder spasm’s.
As I have written in my past few posts I am undergoing hyperbaric oxygen treatment in an effort to heal my diagnosed bladder cystitis. However a few days ago I experienced a massive bleeding event resulting in a midnight dash to the Townsville Hospital Emergency Department.
I will start by trying to describe what it is like to experience a bladder spasm. If you have ever experienced a severe muscle cramp or witnessed a footballer suddenly collapsing in agony with a muscle cramp spasm you will have some idea of what this may be like. The difference however is the frequent amounts of spasm’s experienced by urine retention patients. Throughout my whole ordeal I was experiencing these attacks on a regular basis for two days and nights with the bowels joining in the chorus at times. Sleep was non-existent all through this period and on a pain level out of 10 it was a 15 every time. I felt like I was being disemboweled
My adventure began as a series of small bleeds during the evening suddenly increasing to urinary retention where I was unable to pass the clots. At the point at which I could not pass any urine or clots the bladder spasm’s began to wrack my lower pubic area and off to the emergency department I went. The emergency department were terrific and admitted me straight up and administered some pain killers and inserted a three-way foley catheter. (Having one of these catheter’s inserted and retrieved deserves an article in itself, however I will leave this for another time)
The next couple of days and nights have been seared into my memory as the worst distressing period of my life. They gave me some heavy pain-killer medication plus a drug (oxybutynin) to help minimise the spasm’s. These helped somewhat take the edge of the pain except during the height of a spasm which would last approx 30 seconds and then reliably return approx every 30 minutes. I found I could not lie down for long but was better able to handle the spasm’s when I was standing erect, so, standing I was for two days and nights. The catheter kept blocking with clots and the nurse had to constantly flush the catheter. sometimes I could clear it myself by jiggling, squeezing or adopting different stances to keep the flow going.
The bleeding finally stopped and I was released back out into the wild and back to my hyperbaric treatment. I am still left with the occasional mild spasm, a little incontinence and increased painful urination. The hyperbaric unit has been supportive and wish me to continue with treatment. They do not see this as a failure in my treatment as I am only half way through my sessions. They explained that the treatment is aimed at supplying oxygen to these blood vessels thus assisting in the healing. This healing effect will continue for a couple of months after completing my sessions. It could be possible I may relapse in the future but I can always have the treatment again at some point if needed.
Summarising these events I would like to say that those days and nights were the most painful, distressing, unhygienic, un-dignified and embarrassing moments in my life. In describing these events I have painted a bleak picture with little or no hints for those who may yet travel this path. Greg wanted this site to be warts and all and that is the reason I have submitted this article. It’s main aim is to at least warn those patients that this road may yet confront them in their cancer treatment travels and also to highlight that they are not alone, someone has been there before. Drink at least two litres of plain water daily and mind the foods you eat. They should be non acid forming and not spicy. Tea, coffee and alcohol should be modified or discontinued. The aim of the game is to reduce bladder irritants and flush the system with water.
I would like to publically thank the staff of the emergency department at Townsville General Hospital for holding my hand throughout this ordeal.
Lee aka Popeye