Radiation cystitis

James007fok

Hello everyone

i am James, this is the first time i post on this forum after I join CSN. I have prostate cancer and undergo radiation treatment summer 2016. I am doing very well until March 2018. I found blood in my urine. It happened for a few days and I was hoping it gone away. But it become more serious in 3/17/18. I got so much blood and blood clot block my urine tract and I was unable to pass out urine. I went to ER and they insert catheter in me to drain out blood and urine. I was in the hospital for two days and continued bleeding for 48 hours . My hemogobin level is down to 10.6 which is consider anemic. my treatment team indicated to me it’s normal after radiation treatment And this may come back anytime. I will be doing cystcopy on 4/10. I hope someone who go through something like this let me know whether this massive bleeding is normal and how often I may have this.

MK1965

Radiation cystitis

James,

what you are experiencing  is most likely radiation cystitis and good thing it is transient. Certainly, it’s not good one.

With surgery, probably you wouldnot have this one, but you wouldn’t be spared from many others Life changing SE. 

Radiation is known to have milder  SE and they are coming slowly down the road. 

With surgery, you get them all and upfront.

I would rather have them years later and down the road. When we get older, some SE like ED does not affect us same way in the 70-es like it affect us in the 50-es.

I had surgery and I am definitely against surgery. When you cut out something, you make drastic change to body system.

Body is not like politics, change is very seldom good.

MK

 

 

James007fok

MK1965 said:

Radiation cystitis

James,

what you are experiencing  is most likely radiation cystitis and good thing it is transient. Certainly, it’s not good one.

With surgery, probably you wouldnot have this one, but you wouldn’t be spared from many others Life changing SE. 

Radiation is known to have milder  SE and they are coming slowly down the road. 

With surgery, you get them all and upfront.

I would rather have them years later and down the road. When we get older, some SE like ED does not affect us same way in the 70-es like it affect us in the 50-es.

I had surgery and I am definitely against surgery. When you cut out something, you make drastic change to body system.

Body is not like politics, change is very seldom good.

MK

 

 

Prostate cancer

Thank MK for answer. I consider surgery but my cancer  is near surface of my prostate. I would still go through radiation after surgery. I hope someone who has radiation cystitis bleeding problem share with me how to they handle that. How massive is the bleeding and how did they stop it.

VascodaGama

Firstly one needs to identify the real cause of the bleeding

James,

I also got radiation cystitis and have experienced bleeding when urinating, sometimes to the extent of getting blood clotting blocking the urine flow. Fortunately I managed to unclog by forcing the urine flow pressing hard with the abdominal muscles. After such an experience I may see more times blood in the urine but it usually clears up the next day and stays OK.

The occurrence is worrisome if the blood originates from scars in the bladder or further up from the kidneys (kidney stones) which would not be related to the radiation cystitis. It could be a case of urethritis too. In any case the cystoscopy will identify the area of the bleeding and verify the extent of the scars.

Radiation treatment for PCa got this problem which many term as late side effects. I just had a colonoscopy (Mar31) that identified scar tissue in the colon. My RT was done in 2006 (11 years ago) so that the local tissues managed to recuperate to some extent. In your case of two years post RT the tissues have not yet gain time to recuperate fully. Typically it takes at least 5 years to get better.

Firstly one needs to identify the cause of the bleeding, but the preferred treatment of internal wounds (caused by radiation) is our won natural healing process. We need to give time and use anti-inflammatory medicine, if needed. Blood thinners (such as aspirin) should be avoided. Another approach is the newer sclerotherapy if the problem exists at appropriated places. When this doesn't do the job then doctors recommend the Hyperbaric Oxygen Therapy (HBOT). This is a treatment designed to create newer blood vessels that will supply oxygen to the wound. The intent is cure but we PCa survivors would be risking a resurgent of the bandit if this bugger still exist and is indolent. Localized recurrences are linked to newer blood vessels that managed to assist the cancerous cells in recuperating from indolence.

Please read these links;

https://emedicine.medscape.com/article/2055124-treatment

This one regards the problem of angiogenesis in cancer growths;

https://www.cancer.gov/about-cancer/treatment/types/immunotherapy/angiogenesis-inhibitors-fact-sheet

I would recommend you to follow the cystoscopy with a colonoscopy to check for scar tissues and any colitis.

Best wishes for improvements.

VGama

James007fok

Radiation cystitis o

Dear VGama. 

I really appreciate you share so much valuable information with me. I learned self cathization last week to avoid not able to urine. I will try your method of forcing out urine too if I have problem again. Did your episode of bleeding decease and come to an end since you have radiation so many years ago.what is the frequency and duration of your bleeding episode. Actualy I have one in 2017 around August. That disappeared in few days. The episode in 3/2018 was almost two weeks before it got serious on 3/17 that I end up in ER and being hospitazied for two day. I was in pain and continued bleeding for 48 hours. Finally the bladder irrigation and flushing did stop my bleeding. Did you ever have such serious episode. i hope I don’t near to be hospitalized again. By the way did you take any supplements or diet modification . I heard crawberry capsule is good. I hope the cystcopy on 4/10 will review what happened

 

Josephg

Blood in Urine Post-Radiation

I have posted this before, but will post it again for James, for his review.

I have experienced three occurrences of blood in urine, since my radiation treatments (38 treatments, 68 Grays) 4 ½ years ago.  The first occurrence was about 2 ½ years ago, with the second and third occurrences following about 6 months each, after the first one.  These occurrences started without warning, and my urine was bright red, actually looked just like blood, but thinner, with some small clots included.   This can be alarming and disturbing, particularly when it occurs in a public/office bathroom with wall-mounted urinals.

I contacted my Urologist the first time that this occurred, and he had me come into the office immediately and performed a cystoscopy.  This procedure, while mentally disturbing in that a tube with a camera mounted on it is inserted into the penis and then pushed up through the urethra and into the bladder, was actually painless.  During the procedure, the Urologist encouraged me to watch the images with him on the TV monitor as he navigated around the bladder, inspecting the walls and locating the source of the bleeding.

My condition was diagnosed as hematuria, and my Urologist advised that this is not an uncommon occurrence for people who have received radiation therapy near the bladder.  While not normally a dangerous condition, a progression to gross hematuria can be a life threatening condition, due to the rapid loss of blood.  My Urologist advised that in most cases the condition will resolve itself, as the bladder wall lesion will heal itself.  He also advised, however, that radiation treatments around the bladder can in rare instances trigger cancerous growths in the bladder later on, so it is good to contact medical professionals when these situations occur.

The third time that this occurred, my Urologist recommended a bladder wall biopsy, and the procedure was performed at the hospital under general anesthesia.  The results of the biopsy and pathology were negative, and I had no post-procedure discomfort.  Since then, I have not has another occurrence.

With you being scheduled for a cystoscopy on 4/10, it would appear that you are in good hands, and following the next step in the information gathering process regarding your condition.

I wish you the best of outcomes.

James007fok

Radiation cystiti

thanks Josephp for your advice. My bleeding is quite different . Today I start finding little blood clot in my urine several time. I am drinking a lot of water hope to flush all the clot out. I hope this work. Do anyone out there have minor bleeding for more that two week . I find pink  color urine and minor blood clot  for two weeks before the big one come on 3/17/18ending up in the hospital. If I keep on drinking a lot of water, could I stop the big one. Did anyone out there need to go to ER due to blood clot blocking urine track? I guess I have to prepare myself after the last episode . I still hope someone can share their major hemutaria experience and how they stop it？

brevp

My experience with radiation cystitis and hemutaria has been a lengthy business. Burned area in the wall of the bladder found during scoping 10 weeks after completion of 45Gy in 25 factions to the entire pelvis, including pelvis lymph nodes, and 25.2Gy in 14 factions boost. This treatment several months after prostate removal with Gleason scores of 8-9 across all samples.

Once identified, a three-year period of blood and clotting was experienced with burning and light to moderate incontinence requiring adult pads. Without warning, urine flow became restricted due to large expulsion of clot material blocking urethra. Emergency room and two-day bladder flush cleaned stuff up followed by a procedure to remove radiation-induced scar tissue from the urethra. This procedure left me completely incontinent due to the elimination of good tissue with the scar tissue.

Five years later, I still get blood and some minor clotting occasionally, but nothing like it was. PSA less than 0.01. Adjusting to this new me has been difficult but what else can you do? This post may find you well past the need for it, but it could help someone else looking for real-world examples.