Radiation Cystitis

[Blueslover]

Now experiencing this 5 years post salvage radiation with varying amounts of haemorrhage, at times profuse. Definitely aggravated by placement of a Foley catheter a few months ago after ballooning of a urethral stenosis.

Interested in anyone's experience with this as the severity is likely to increase over time.

Hugh

[tango65]

Some info about radiation cystitis, classification, possible treatments etc:

ncbi.nlm.nih.gov/books/NBK4...

[Blueslover in reply to tango65]

Thanks

Have read all available to read. Looking more for personal experiences

Regards, Hugh

[lrgalla]

Here is a copy of the post I left in the members section under lrgalla which details most of my past with dealing with this mongrel PCA. In 2014 I had salvage surgery to remove the bladder, appendix and remains of the prostate gland and fitted with a urostomy. I hope a read of my travels with radiation cystitis gives you a personal perspective from me. Best of luck to you on this pathway.

My Name is Lee Gallagher and I live in the state of Queensland Australia. I am 68 years old and was diagnosed with advanced prostate cancer in January 2012 after becoming symptomatic with painful and increasing urination events. My Gleason score was 5+4 =9 in all eighteen segments, my PSA at the time was 4.5. I underwent a TURP to ease my symptoms and began 4 monthly Eligard injections, I then completed external beam radiation in December 2012 and my PSA dropped to 0.008 in 2013.

In late 2013 I began to experience urinary bleeding that slowly progressed to blockages with clot formation and was diagnosed with radiation bladder cystitis. I underwent hyperbaric oxygen treatment for two months in Townsville general hospital during 2014. The treatment failed and the blockages became more frequent and severe resulting in frequent emergency medical flights back to Townsville hospital. I underwent another TURP and a series of green light laser treatments to try and seal the blood vessels within the prostate bed and bladder without success. In October of 2014 I had an MRI done on a brand new type of MRI imaging machine that became available in Townsville. It was the now well known 3 tesla multi parametric MRI which pinpointed not only the exact damage and necrotic condition of the bladder and surroundings but identified and graded active cancer tumours still present in the bladder neck and remains of the prostate gland.

The imaging was so good it allowed my very experienced and skillful urologist to see that my original radiation treatment had not fused tissue and would allow a segregation of the prostate gland from the rectum making salvage surgery possible. As a result I underwent a radical prostatectomy and cystectomy (bladder removal) along with lymph nodes and my appendix. The surgery took over 11 hours to perform and required the creation of a stoma (urostomy) using part of my small bowel for urination purposes.

The surgery has given me a new lease on life and allowed me much more freedom and good health. I ceased androgen treatment in 2014 and apart from managing my stoma ( I call it my "wee sporran") I have had few issues apart from fatigue and mental slowness. My PSA remained at 0.008 right through from 2014 to July 2015 when it has started to rise to my latest test in February 2016 to 0.043. We are monitoring the rise every three months which is a bit concerning at the moment as my cancer has never produced high levels of PSA in its history. I am happy to provide any further information if anyone has any questions I may be able to assist with.

Kind Regards

Lee Gallagher.

PS 2019 PSA levels rising despite firmagon injections from 0.008 to 1.6 in 2018 down to .20 now back to 0.58 June 2019 next PSA January 2020.

[j-o-h-n in reply to lrgalla]

Greeting mate..... (here we say just Greetings).... Thank you for your most informative post. I salute you for all you've been through... They say you "mates" from OZ have grit and after reading what you went through you definitely prove that. Stay with us and post from time to time we need your expertise and your story in helping other brothers. Best Wishes to you Down Under.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/25/2019 8:34 PM EST

[Blueslover in reply to j-o-h-n]

Thanks John

[spouse21]

Slighlty off topic but possibily relevent: My husband had radiation proctitis, not cystitis, after his radiation treatments in 2015. He still has a small amount of bleeding at times, but much, much less bleeding after he stopped taking daily baby aspirin. (He's never had a heart attack so doesn't need the aspirin.)

[Blueslover in reply to spouse21]

Thanks for your reply. As I just had a coronary stent put in , I have to take both aspirin and Plavix for the next several months. Had in mind that these anti-coagulants could be aggravating the situation

Hugh

[j-o-h-n]

Yep you're right about the anti-coagulants... Keep posting here and keep us up to date.

google.com/search?q=i+got+t...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/25/2019 8:38 PM EST