Advice Please--Radiation with J-Pouch

Hi,

Based on your post, you would be considering salvage radiation therapy since your already had an RP.

my surgeon told told me prior to jpouch surgery and recently again, under no circumstances should I ever have radiation to that area as it could cause the pouch to stiffen and then fail to work.

I would check back with your colo rectal surgeon and get his thoughts as I can only tell you what I have been told.

i still have my prostate, but I run a high psa. No sign of PCA yet, but the thought is always lurking in my mind.

Question: how did they manage your surgery with your pouch. Was your surgeon experienced with jpouches and prior to yours?

News577:

Thanks for your response.  My J-Pouch surgeon, Dr. Safar, Johns Hopkins, also recommended no radiation and that is why I chose to have the prostate removed.  I have yet to speak with him about salvage radiation.

My prostate surgeon, Dr. Bivolacqua, also from Johns Hopkins, did the surgery; not robotic surgery.  He had to make an incision from my belly button all the way to just above my penis. He had done many prostate removals and a number of those removals included individuals with a J-Pouch.

I have had few problems after my prostate removal.  Some incontinence for about two months and now, over one year out I don't even think about urinary incontinence.  There has been some problem with erectile dysfunction, however even that is correctable with some pills and even injections.

Good luck to you and let me know if I can answer any other questions about prostate removal.  The bottom line is if you do need prostate removal, find yourself a surgeon who is experienced in removing prostates with a patient who has a J-Pouch.

Nick

I am a survivor of thyroid cancer and part of my treatment involved drinking radioactive liquid iodine (157 millicuries, a very high dosage). The adjustment that was made was to give me a liquid dosage rather than pills because of my bowel disease and concerns that the radioactive iodine wouldn't be properly absorbed. Although I was classified as stage 3 cancer because the cancer had begun to metastasize into adjacent lymph nodes, I survived and so did my J Pouch. I didn't have any side effects from the radiation (I was advised and did take anti nausea med Zofran preemptively, it must have worked). 2 months prior to this treatment they had surgically removed the thyroid and 2 lymph nodes into which the cancer metastasized.

The concern with my treatment was not my pouch but my salivary glands. Apparently the radiation concentrates heavily in the salivary glands and I was told to suck sour candies continuously for 2 days after imbibing the radioactive iodine. To keep the salivary glands flushing. I had a few bags of Jolly Ranchers and was sick of them after a couple days.

I was compelled to meet with a member of the federal Nuclear Regulatory Commission. He is apparently on staff at Yale/Smilow but is an NRC employee and his job was to make sure irradiated persons like me behave responsibly. He sat me down and told me what the rules were going to be once I was irradiated. Self isolation for one week. I could go outside but was told to run the other way if I saw a pregnant woman or dogs, and to otherwise stay clear of humans. I was not allowed to throw out any garbage for a week and had to flush my toilet 3 times after each bowel movement. The worst part of the whole treatment was the low iodine diet leading up to this treatment. WORST DIET EVER!

All of the above treatment was done with the knowledge and blessing of my J Pouch specialist who was in continual communication with my treating endocrinologist.