Do you regret SRT + Update

I think it's important to remember MIkis comment about Bobs colitis. This does put him at higher risk

Miki, I haven't commented much on this thread because we've been talking privately, but Bobs colitis aside, I'd emphasize what Octorobo pointed out. That most men are successfully treated then disappear. So the risks may not be nearly as huh as they seem from reading here.

Bob's going to meet with the radiation oncologist on Wed. and just get some information. I am also going to contact MD ANDERSON again and see if he can get in there or at least do a phone consult with a doctor there since his cancer is not behaving as a Gleason 6 and has came back Prolaris aggressive (which at first doctor said it wasn't aggressive according to the Prolaris, the sheet I have it's on the boderline of intermediate/aggressive). I don't know if you can pay for a phone consult w/ someone at MD ANDERSON but I'm going to try and if not we may make a trip just to get a second opinion. They are 6 hours one way from us. I had talked to them briefly once before but couldn't get much information out of the person that I talked to about housing, payment plans etc. Maybe I need to talk to a social worker that they have on staff. Anyone have experience with MD ANDERSON?~Miki

Chas:

I was one who had a long term Suprapubic catheter. Only plus: less painful to wear full time then a foley, as no pulling on the penis, or fear of pulling. I had mine in for 51 weeks straight. I still used a leg bag as needed in public, and the large bag at night.

My "tube" got changed every 4 weeks for sanitary reasons. All of them were traumatic affairs. A lot of saline crystals would form on the tube, more than normal, so when the dr. pulled out the old tube, the would rip at the hole like one could imagine. There were times that it took 2 people to hold me down on the table, and I would be in tears, literally. The doctor only had 2 minutes, plus or minus, to make the swap, as the hole would try to close up, making the insertion of the new tube all but impossible. So even though he knew he was killing me with pain, he had to move fast.

Since the old tube had already tore up and enflamed the hole, insertion of the fresh tube was equally painful. Felt like someone pushing a screwdriver into my side (or how one would imagine that). I dreaded the every 4 weeks swaps. During that time of my life, I had the tubes changed out 13 times.

Due to all my previous stricture issues/ops prior to SRT, and knowing that SRT would cause even more issues, it was decided to take me off the Foley's, and go with the Suprapubic. However, it was only intended for the length of the SRT (39 sessions) plus perhaps one month post. In my case, I was never ever able to urinate naturally after SRT, so I had to choose to stay on the catheter. Nearly a year later, I opted for the ileal conduit surgery, where I ended up with a stoma (Urostomy) and pee into a bag. That was a non-reversible decision, and I am with this for life. Good thing about a stoma, there are no nerve endings, so there is never any pain associated with swapping out the device/patch every week. Due to surgical issues (always with me), I ended up with a rare convex stoma instead of the more common concave, so it takes special devices to hold a seal, so that I don't leak. Took lots of trial and error for months, before we got the right devices and the techniques down.

I was never a candidate for self-cathing, as there was too much damage done to my bladder neck, doctor didn't want to risk me hurting myself attempting to cath on my own. Plus to be honest, at that point, was to traumatized by the whole thing, don't think I could have handled it.

There are worse things than a Suprapubic cath, like having full retention, ending up in the ER with a swollen bladder feeling like a grenade is going off, and having someone force a foley catheter in you that doesn't have good experience doing it.