I finished treatment at MD Anderson's Proton center in May, 2009. My PSA has been steadily declining.
However, in May of 2010 I started to experience rectal bleeding. At first I thought it was just some mildly damaged cells sloughing off, a side effect that is relatively common and short lived. However I continued to bleed more in terms of volume and frequency. I consulted a proctologist who told me I had radiation proctitis. It is confined to just the first few centimeters of the rectum.
He prescribed a cortifoam enema, a steroid, to apply twice a day. Even though it's an enema the amount is small. It's inconvenient and unpleasant but far from awful. It's very expensive. Even with my very good insurance, it comes out to $50/bottle. A bottle lasts about ten days.
I also had to stop taking aspirin, ibuprofen or anything else that would act as an anti-coagulant. It's important to avoid constipation but psyillium, e.g. Metamucil, is not indicated as its roughness can irritate the rectum.
I noticed in July of last year that I became unusually short of breath while riding my bike. I had a blood test with an iron panel to see if I was anemic. I wasn't. However, when I repeated the test in November I was anemic with a hemoglobin at 10 instead of 13 or more. I started taking ferrous sulfate 325 mg bid. Iron causes constipation and gas. It's no fun but it reversed my anemia and I felt much more energetic.
Despite months of cortifoam tx I am still bleeding, sometimes heavily. I am about ready to ask the Dr. to apply formalin to the affected area. This will require general anesthesia and an overnight in the hospital but he says the side effects are infrequent and the rate of success is high.
Dr. Choi, my oncologist at MD Anderson's proton therapy center, told me that this type of bleeding happens in a small percentage of patients and usually stops by itself within a year. My proctologist, Dr. Stephen Silver of Havertown, PA, tells me radiation proctitis is a chronic condition, i.e. once a mucous membrane has been damaged by radiation, it won't heal.
How many of you have experienced a similar problem and, if you did and it stopped, what stopped it?