Side effects and PSA after photon radiation.
I would like to hear from people that have had photon radiation similar to me, total 7000 Cgy dosed at 28 sessions of 250 Cgy. My radiation was applied on a Truebeam. What side effects directly after radiation did you have, and did any side effects emerge months/years after the radiation? My side effects are mainly pains in the areas below the stomach to the groin, around my entire body, that were radiated while focusing on the prostate.
What was your PSA after radiation, and how long did it take to go down? My PSA was at 8.4 before radiation and went down to 5.3 three months after completing radiation. My urologist was not happy with the results but from what I read, it can take up to two years to reach the nadir. I would be reluctant to go onto ADT so soon after radiation. Thanks for your input.
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@dgd1953 hey, thanks for your input.
I am 3+4 with high decipher. thinking of IMRT at UNIV. Chicago. (similiar to VMAT) in 22sessions with 68 gy. photon.
question. why did you choose VMAT? where did you get it done? did you think about Proton therapy also?
thanks. good luck with next PSA test.
@dgd1953
also, did you say you had rectal burns? or did the OAR prevent them?
@matthewdore I went to a local hospital which is an affiliate of one of the big Boston hospitals. It was a 20 minute drive, so relatively convenient.
It was the RO who thought VMAT (a form of IMRT) would be best and that I did not need ADT (contrary to what my urologist and Decipher recommended). Looking at proton, I learned that the outcomes and QOL issues were very similar between photon and proton, so I decided to stay local. I’ve interacted with three different ROs at this hospital all of whom have been trained and taught at Ivy league schools (UPenn, Harvard, & Brown), so I felt that I was in good hands.
It’s now approaching three years since my treatment and things are going well. I did have two brief “blood in the water” sessions in the last two years, but they both cleared up quickly without any sort of intervention. I did have a colonoscopy last year that showed evidence of radiation proctitis, but no bleeding was observed. The ED I had before treatment got worse after undergoing radiation, but the combination of Trimix and a VED allows me to still be sexually active.
My latest PSA number came in at 0.18 which is the lowest it has been since this adventure started. I believe that I received excellent treatment and am pleased with the outcome.
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3 Reactions@matthewdore
VMAT Uses a 3-D treatment that circles around your body to treat the prostate without Going into other areas. IMRT doesn’t do that.
This requires much more complex programming to do the treatment.
@dgd1953
thanks for the details................what is a VED?
matt
@jeffmarc
thanks Jeff. Hey, Jeff, what do you think of a high decipher score????? does it mean NEED to be more aggressive? some Dr.s give it less weight that others. I am trying to have best QOL possible. still active.
@matthewdore
The treatment is frequently the same for initial treatment, but the need for ADT is usually higher for somebody with a high decipher score to try to knock it down early and prevent reoccurrence.
Is there some reason you’re not considering SBRT radiation instead of IMRT?
With your 3+4 they usually don’t do ADT but it seems like it would make sense to do six months with a high decipher score. I have heard of some doctors doing that.
The question is, Did your biopsy show any aggressive issues? It’s hard to believe they would come up with a high decipher score without some aggressive things in the biopsy Since you are a 3+4. Were there a lot of cores and a high PSA?.
Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive which could result in a higher decipher score.
I don’t know who you are seeing at UC But this guy is fantastic and I know a lot of people going to him that just love him.
At U of Chicago Russell Szmulewitz, MD - UChicago Medicine
@matthewdore medical abbreviation for a "penis pump"
Also the IMRT/IGRT machines will also circle around you to provide multiple entry/exit points and reduce exposure to organs at risk. The radiation beam is not constant at all points, another way to reduce exposure.
@matthewdore VED = Vacuum Erected Device
@dgd1953,jim18,@jeffmarc,
thanks guys. Jeff, no aggressive stuff......etc. only two cores. low psa. etc. thought the decipher was maybe the result of prostitis. did not do SBRt just to keep the dosage as low as possible for QOL down road. most of the % for SE were pretty similiar for SBRT vs. IMRT/VMAT in the PROTECT trial and the PACE-B trial.
Hang in guys. stay strong Jeff. I am going to start the rad. at UChic. in a month or so.