I always tell the truth, the full truth and nothing but the truth and only the facts. Honest, really you can believe me as I would never tell anything but the truth, just ask me...I am always truthful even to the point where it hurts. Did I say I always tell the truth? Well you can take that to the back, honest, believe me.
REALLY

Truthful Roger

Larry: In all honesty I do agree with you that it might not be wise to accept that data on faith. The question I really like is the one about how hard does it get. "Just hard enough for **********"? That's the one that's going to get lied to if any.

TA, I couldn’t access the links for some reason, European Eurology never loads on my iPad, although it used to. And the last one, red journal is the same platform. I’ll try them tomorrow on my laptop, thanks for the links.

Also, RA, so what would one consider grade1vs 2 vs 3?
If I have a 1% chance of se’s that could seriously degrade my QOL, I could live with that. If I have a 20% chance of say, stress incontinence and that’s Grade 1, I could live with that too.

I know, it doesn’t matter, I don’t have much choice. I wish I didn’t have a need to know this stuff stats don’t matter to an individual. But I do.

When considering truthfulness or lack thereof when doing the scheduled reports I think we must consider the difference between the majority of us here at HW and the general population as a whole.

I generally find that when I talk to men who have been treated for PCa but are not associated with any group or forum.Men who basically just followed what the first Dr. told them to do. That there is little interest in filling out forms and reporting accurately what their SE's are.

Those of us here at HW are generally more engaged and proactive.

IMHO...............................
Roger

My adjuvant RT ended in mid 2010. At that point I was at 1 pad a day, and not many real issues (ok, ED is forever, has gotten worse instead of better, but there is TriMix).

I had bleeding every few months, and had to get dilated every 6 months of so. Probably 4 cystoscopes in that time as well. I guess it was December 2015 when I blocked up over night, and spent two consecutive nights in the ER with blocked catheters. I then did a 60 session round of hyperbaric oxygen. That cleared up the bleeding, and actually improved some of the ugly bowel issues the ART caused.

Even though I have little and infrequent bleeding today (still happens every few months for 2-3 weeks duration), the LT effects of the RT are really just now becoming problems. I'm up to 4-5 pads a day and depends pants at night, with frequent major accidents, both urinary and bowel. That is all consistent with what my RO told me to expect if I were somehow to still be alive at this point. That was not expected. Keeps me close to the house.

I used to pack enough pads for a trip. Now I just stop at the store when I get there and buy a pack.

Tall Allen said...
I think of the grades as 1- mild, 2-annoying, 3-severe, 4-life-threatening. Side effects are most often acute, seldom late-term. They are either genitourinary (GU) or gastrointestinal (GI).

Excellent way to compartmentalize them.

Those surveys are many times all we have to guide us. The biggest issue IMO isn't lying but what some guys consider severe, others consider mild. Hopefully it evens out over large populations, but not so much in an active, but small sample size, forum.

The genital, urinary, rectal and gastro SE's are separate issues over long time horizons. To one degree or another we all deal with them, hopefully without obsessing, which only exacerbates problems.

....and life goes on.

I’m just going to take my RO’s statement at face value, and assume I’ll get out of this with a decent QOL, until proven otherwise. Thanks for the comments

My two cents is that it really pays to have your RT done by someone who really knows prostate cancer and the surrounding anatomy. The only problems I had were related to SRT at a community hospital by a RO with little prostate experience. Bad rectal bleeding for 2--3 years which has finally stopped. RT I've had since then (for lymph node and femur mets) by knowledgeable ROs have been without any problems.

Bottom line: It's the Indian and not so much the arrow that's important.

Bob

I think you have to distinguish primary RT vs SRT. I haven't seen any statistics on LT side effects for SRT but certainly primary RT, whether BT or EBRT are far worse than 1% or 5% if you look at the ProtecT trial or the recent North Carolina Central Cancer Registry.

In the North Carolina study, for men who reported normal baseline bowel problems, 17.4% reported poor function 24 months after EBRT compared to 5.6% after surgery. 17.4% is still quite low, maybe 1 in 6.

likely you'll start growing webbed feet or tentacles 12 to 18 months post treatment.

Call your doctor if you start seeing through walls or start shooting spider webs from your hands - they can treat those symptoms.

InTheShop said...
likely you'll start growing webbed feet or tentacles 12 to 18 months post treatment.

Should we tell him now that between 6 and 12 months his penis will shrivel up and fall off.

Pratoman said...
My understanding is, and its been said many times here before, that SRT has worse side effects, because the prostate is not there to shield the other organs.

If SRT side effects are worse than primary RT, then I would wonder why are these guys quoting you 1-5% when studies show that LT side effects from primary RT are worse than those percentages.