Radiation Cystitis & HBOT experience

[RDH51]

I devloped radiaton cystitis 5 years following IMRT & HDR, with blood in my urine and several blockages due to clotting. I was able to find a wound care clinic with Hyperbaric Oxygen treatment (HBOT) available nearby and was able to start HBOT approximately 6 weeks after onset of bleeding.

After 10 sessions my bleeding stopped. I went on to complete a full regimen of 60 treatment sessions and have had no bleeding in the 9 months since treatment.

My research indicated that HBOT treatments are most effective if begun relatively soon after onset of symptoms, so I'm very greatful I could find the treatment available so quickly.

It seems like this kind of treatment may be suited to radiation proctitis as well. I found it interesting that neither my oncologist and my urologist would not make a direct recommendation for HBOT, however, I was able to convince my urologist to include a statement that I could consider HBOT as treatment.

[Mike1971]

Thank you for letting us know.

[alysona828]

thank you for this, my dad is going through radiation proctitis now (just wrote a post). I was wondering where to find HBOT… would a cancer hospital have access or are there standalone clinics ? Thanks for your info.

[patandemma in reply to alysona828]

I had HBOT for radiation cystitis.My localcancer hospital,a NCCC no less did not have HBOT capability.

Google search found a community hospital only a little further away.

[Teddy28 in reply to alysona828]

look for a wound care facility, often part of a hospital or a satelite facility of a hospital.

[Omalley]

I had HBOT after bleeding two years ago, no problems since. I live in the desert in SW CA in a relatively small town. They have it here and in another town close by, seems pretty available in CA.

[depotdoug]

Great news RDH51! I’m dealing with urethral inflamation burning and procititis. I’m 19 yrs post IMRT and just this summer experiencing this. I’m seeing an Rad Onc consult KN 3rd for answers. I hope.

Where did you get HBOT treatments and how do you find a HBOT treatment hospital facility?

Doug

[dhccpa]

Are you on Medicare? If so, could you please explain how the doctor's statement helped you receive coverage if he didn't actually prescribe it himself? Sounds like useful knowledge!

[j-o-h-n]

to RDH51, Congratulations!!!

For those looking for a HBOT "treatment" locations:

How many hyperbaric chambers are there in the US?

As researchers learned about the benefits of HBOT, more and more facilities began offering treatments with hyperbaric chambers. Recent reports state as many as 1,800 to 2,000 hospitals offer hyperbaric treatments in the United States.

(Do a Google search).

Good Luck, Good Health and Good Humor.

j-o-h-n

[RobDoggit]

I had an almost identical scenario as you did RDH51. My urologist diagnosed "delayed onset radiation induced cystitis" 5 years after EBRT treatment. In my case, the urologist recommended HBOT and I completed 38 session, which were successful. The fact that the facility my urologist is associated with was also the one with the HBOT chamber may have been a factor.

One oddity for those dealing with radiation proctitis. Apparently there is something in Medicare's coverage codes that excludes HBOT as treatment they will cover for radiation proctitis. This makes no sense, however one of my HBOT chamber mates said he was rejected for that reason and ended up having to pay out of pocket for his treatment. I hope this doesn't prove to be true, but it's worth looking into. He had excellent results with healing his radiation proctitis, but it cost him.

[Mgtd]

Just curious how this chamber protocol works. While actively flying I had to go through recertification training in a chamber every 5 years.

Just wondering what this medical HBOT protocol entails!