Radiation Damage and Cancer Recurrence Updating Popeyes Story

[Popeye]

It has been a bumpy cancer ride for me over the past few months. I will attempt to outline my personal journey and update my story for those members interested. My recent troubles have all been related to radiation bladder cystitis and blood in the urine and I previously set this out as a forum subject to help any other poor soul who may travel down this path. When I began to have my symptoms I went looking for information on this subject with little success and this made me more determined to add some personal experience on this subject on this web site.

 

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. I began to receive treatment in the hyperbaric chamber that failed me and then proceeded to a new urologist who has performed 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. The bleeding and clotting I have experienced has been non stop and ongoing for the past two months. I was recently flown by the Royal Flying Doctor from Mackay to Townsville for another procedure to attempt to stop the clotting. I am writing this update from Townsville after my release from hospital while I recuperate before heading back home.

 

In June this year I was hospitalised twice in Townsville general hospital then in July I was in the Mater private hospital in Townsville. In August I was hospitalised in the Emerald general Hospital followed in September when I was back in the Mater private hospital Townsville, this was followed by three admissions to the Mackay general hospital and then the flight back to the Mater private hospital in Townsville for the latest procedure.

 

At a meeting with the Townsville oncologist yesterday, I learned that tissue samples the urologist sent to the pathology during my latest TURP has revealed active cancer cells still in the remains of the prostate bed. This now means that the previous radiation treatment has failed. 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. The good news is, that 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 fear for me after experiencing multiple episodes of this where the only relief is big time pain killers and the insertion of a catheter. I have also experienced catheter blockages and slippages of the catheter that blocks off the bladder outlet bringing on the same symptoms.

 

This is not presented as a "poor me" article but rather to alert others of the possibility of this type of side effect and injury from a primary treatment. I personally hope that no man has to follow me down this path.

 

Lee aka Popeye

[Charles (Chuck) Maack]

Hello Lee aka Popeye (Hope both you and Olive Oil are now doing okay :-))

 

Sorry to read of your experiences following earlier radiation that obviously caused accumulating issues.

 

From all I have researched and studied, at least it appears your treating physicians were providing the best protocol for what you were experiencing.  The HBOT is often recommended to stop such bleeding issues, but a bit surprised that it apparently work that well for you.

 

Your subsequent treatment pretty much follows what I provide patients reporting similar circumstances:'

 

http://tinyurl.com/42mrhu9

 

http://tinyurl.com/3e2y34k

 

http://tinyurl.com/3whq3yt  

 

I would expect that after the previous urinary blockage that the current incontinence, though another aggravating issue, is at least some relieve that the urine is "flowing."  As the result of my long term treatment my bladder and urinary sphincter muscles no longer have the strength to retain urine, particularly when up and about (not as bad while laying down during the night where there is no pressure of urine build-up pressing down on the sphincter area.  At least I feel that build-up as occurring and can get to the bathroom to relieve the "pressure" without "leaking."  In any event, I wear feminine pads (my choice, Tena Overnights brand) 24/7 tucked into either boxer shorts or "Wearever" padded boxer shorts, having to, of course, change the pads as the incontinence "reigns" during the day.  I do have a penis clamp I can use if going somewhere and want to avoid having to change a pad for at least a few hours.  This "clamp" is explained here:

 

Prostate Cancer survivor Michael Holland who has spent personal research and study of erectile dysfunction as well as incontinence has this to offer to help men experiencing incontinence issues:  “What DOES work and what I endorse strongly is the MIC Male Incontinence Clamp (aka PP Stop)”

 

 

 

 

This is a compact, light, molded plexiglass clamp that goes on and comes off easily and is easily adjusted.

 

I never have had discomfort or lack of circulation, even wearing for several hours or more.

 

Since it clamps the top and bottom, but not the sides of the penis, circulation is fine.

 

You can find these at http://ppstop.com/ “

 

The website provides a very comprehensive explanation of is use and instructions for application and care.

 

I hope this addition to your email addressing the issues you experienced will provide other men who experience these issues a better understanding of this issue that occurs far to often to men as a side effect of radiation treatment and considerations to discuss with their treating physician(s).

 

Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Mentor

(A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed)

Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network “Edward C. Kaps Hope Award”

Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award” 

Email: maack1@cox.net

My website "Observations"

http://www.theprostateadvocate.com/observations.html

[Popeye]

Charles: Thank you for your interest and some great much needed information regarding this issue and in particular the information on the MIC apparatus. Your information is a great addition to my intention of highlighting this issue for others who may yet be afflicted.