Blood in Stool 3 months after Proton treatment

@robertov I think there are some subtle issues here. First, a well done gel spacer is protective. I believe that with IMRT it makes the treatment safer. I think with Proton it makes it much safer , meaning, if the spacer has a lower quality placement there may be more risk with proton. I agree with most that the proton beam is more accurate, there is in my mind a challenge though. If it is positioned via CT , you have a highly accurate beam with a targeting system that is no better than IMRT say 4-5 mm. In your case you likely had control like Cyberknife fiducial implant feedback that would shut Proton streams off if it sensed an out of position prostate. That is not the case with 28 or 44 session proton to my knowledge. There is a 2 axis alignment prior to each treatment then no active feedback for position. My personal issues are not so bad , they have improved over time but it has caused me to explore this. I think proton has the potential to be extraordinarily accurate and is in fact gaining ground in many areas. It seems prostate treatment has a different set of variables than some other cancers. In the end it may be the premier treatment but I think it has a few iterations to go.

@jc76 My understanding jc. Also from reading your comments here. However, no one spent hours with me on anything. Which disappointed me as I expected time with my care team. Unless I specifically asked a question, no one said anything. Once Proton was decided, it was a conveyor belt of treatment activities and no followup. On the 28th I have my first post-treatment appt with their PA. We’ll see what she has to say.

@robertov
Sorry I don't know what to say as nothing I do can make up your disappointment.

I am a patient at Mayo Jacksonville. My care teams there are excellent also. I just had MOHS surgery and had 3 people in room at Mayo Jacksonville (one surgeon and two nurse technicians) constantly asking me questions and ensuring I knew the information I needed. Then called me at home. But not unusually to get called at home by medical doctors at Mayo Jacksonville.

I know we all don't have access to outstanding medical facilities like these an medical professionals and I constantly tell myself how luck I am when reading others posts.

Now UFHPTI. I had read post that some posters said never saw their R/Os after they started treatments. I saw my R/Os on my day of simulation, the day of first treatment, and then I saw my R/O or a substitute if not in every single week during my treatments.

I am not sure I can speak of all patients that went to UFHPTI but this is what happened to me. I do know my original R/O went on vacation and saw a different R/O while he was gone.

@jc76 I can’t sat tgat I had the same experience at MAYO phoneix.

I was taking ibuprofen at night and had rectal bleeding after photon radiation, 3 months past and longer. When I stopped taking the ibuprofen, the blood on the toilet paper went away. If your using ibuprofen, you might want to change to a different pain relief.

@robertov
Sorry to hear that!

It seems no matter how excellent the medical institution is you will still have some care givers that don't live up to the reputation of the medical institution. Mayo's motto is, "Patient First."

May I suggest you contacting the Mayo Patient Advocacy Program of the Mayo you went to. I know at Mayo Jacksonville they have an office on site but you can also use Mayo web site to contact them about your experience. They will investigate on your behalf.

I was taking ibuprofen at night and had rectal bleeding after photon radiation, 3 months past and longer. When I stopped taking the ibuprofen, the blood on the toilet paper went away. If your using ibuprofen, you might want to change to a different pain relief.