Archive for the ‘hospital’ Category
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