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