I find this entire conversation interesting. When I went through salvage radiation this past October and November, and started reporting side effects and burning issues, many regulars here that had undergone radiation reacted like I was the odd exception and that most people don't have issues. Just from reading this thread, looks like burning in general is more common.
I think that radiation clinics in general downplay radiation side effects the same way that some surgeons down play post surgery complications and side effects, i.e. incontinence and ED.
When I first started reported "burning" feelings in the first week, the clinic basicially said it couldn't be, because the IMRT was so targeted. Then when my uro (who has nothing to do with radiation) asked them about "scattering", where a certain amount of radiation "scatters" away from the targeted area(s), they denied that as well.
To make a long story short, when I was well into the 39 treatments, and burning was almost a daily affair, they changed their mind and admitted first to the "scattering" effect, and when the treatments were done, mostly due to the grilling from my uro, they admitted to the collateral damage that I have been suffering.
My uro has further studied post-radiation effects since the SRT effected me in such a negative way, and he said he has since learned, that post radiation people can suffer not only months later, and in some cases, some side effects can actually worsen months later, but in some cases, it can take years for the body to heal completely.
I say all of this, in hopes that people understand that radiation treatment is not always "a walk in the park" as I have heard some describe it. If it was for them, they were blessed and fortunate.
In my own personal case, having been through major radiation before PC, I asked the right questions with the clinic, but until I started showing real life side effects, they were slow to catch on to what was happening to me. That part still bothers me. Don't read me wrong, my 2nd post SRT reading is an amazing .04, which I hope stays that way, but it came at a price, that is still going on with me, and will continue from the sounds of it for months to come.
David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence: 1 Month ED: Non issue at any point post surgery, no problem post SRT
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one: July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped 9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4, Caths #11 and #12 same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in