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Proton beam treatment vs imrt

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Posted 8/4/2013 4:52 PM (GMT 0)
Can someone explain the actual treatment process for proton beam? Is the prep time per visit considerably longer than IMRT? Anyone have experience with the process in Jx, Fl.?
Posted 8/4/2013 5:46 PM (GMT 0)
I can't comment on IMRT, but for PBT, you arrive, about 30 minutes before your treatment drink a large cup of water, then just prior to treatment a water filled balloon is rectally inserted, you are positioned in the gantry and listen to the music (which you can bring, if desired). actual treatment only takes a couple minutes (as I recall). Return for repeat the next day (5 days a week).

...Jerry (treated with PBT @ UFPTI, spring 2010)
Posted 8/4/2013 5:49 PM (GMT 0)
Yana, has a lot of men posting their experience with this treatment. You should visit that site.
Posted 8/4/2013 6:31 PM (GMT 0)
Jerry, a balloon that doesn't sound like fun, is it water filled before or after. If that takes place 40 times doesn't the rear end get sore?

Squirm
Yes I had recently found that site, very informative. When I searched that site I came up with a lot more guys that had proton over Imrt.
Posted 8/4/2013 6:56 PM (GMT 0)

jym62 said...
Jerry, a balloon that doesn't sound like fun, is it water filled before or after. If that takes place 40 times doesn't the rear end get sore?

Don't know, I always kept my eyes closed [grin].  Actually, it's a long, thin device where the water "blows up" the balloon after insertion.  It was lubricated.  I'm sure you'll find this hard to believe, but after the first treatment or two this became very routine wasn't nearly as uncomfortable as it sounds.  I did not experience any soreness.

...Jerry

Posted 8/4/2013 10:13 PM (GMT 0)
Jerry
Thanks for the info.
Posted 8/4/2013 10:34 PM (GMT 0)
Jerry
We're you treated at Jacksonville ? If so did you have to travel and find lodging. It looks like it is downtown Jax. Seems like that would be a headache with traffic and all. Also I would have to go it alone, not sure I can handle living alone for two months in a strange environment .
Posted 8/5/2013 12:49 AM (GMT 0)
I stayed at an Extended Stay America on Butler & I95. It was pretty inexpensive ($620/mo as I recall). The area was nice, the motel was just okay. about a 20 minute drive to UFPTI up I95. Others complained about the traffic, but I thought it was a breeze as I'm used to I95 up north. If I had to do it again, I'd probably stay at "3rd & Main" - very nice rooms & about 5 minutes from the Proton Center. It's for Proton Patients only.

One thing I can assure you of... loneliness will not be a problem. I still have friends that I talk with weekly. You will build a brotherhood with others while waiting for treatment. There are various destination lunches & dinners where everyone gets together (and talk about how they pee [grin]). There is a regular piano concert with wine & cheese in the lobby. A golf group. A complimentary membership at the "University Club". A discount membership at the YMCA, etc., etc. Of course, some of those details may have changed in the 3 years since I was there, but I think you get the drift.

Best of luck and health!
...Jerry
Posted 8/5/2013 1:31 AM (GMT 0)
Jerry, thanks so much for the feedback. It does sound doable the way you describe it. I did notice 3rd + main from the website, it looked very nice. Wonder how hard it is to get a room there. Was there a lot of urinary retention in the group you were associated with?
Posted 8/5/2013 4:03 PM (GMT 0)
I received treatment at UFPTI and stayed at 3rd and Main. They are fairly well booked at 3rd and Main so if you decide to seek treatment there be sure to sign up as soon as possible. Maybe look for a roommate. That's a considerable savings. I had some urinary retention and it was immediately corrected with Flowmax and hasn't been a problem since. If you have not contacted them you should. They will send a packet that will be very helpful. If you have questions that I can help with please contact me. I was pleased with every aspect of treatment I received there.
Posted 8/5/2013 7:04 PM (GMT 0)
Yeah, many (most?) proton patients had urinary issues starting maybe 1/3 of the way into treatment (as I recall). These problems ameliorated 1-2 months post treatment. Flomax helped most. I had Flomax + AZO (phenazopyridine). Not a big deal. Just don't hesitate to ask for a Flomax prescription.

...Jerry
Posted 8/6/2013 12:18 AM (GMT 0)
UFPTI was great, people were great, other patients great. BOB (Brotherhood of the Balloon) meetings twice a month, and they have a group lunch every Wednesday where they feed you and usually have a doctor give a presentation. They have off-site lunches on Tuesdays and off-site dinners on Thursday. This helps create a very social atmosphere. I had no urinary issues, the balloon was really a non-issue and the techs are very gentle. The great advantage of Proton vs IMRT is the control they have in delivering the highest doses of radiation. There is less pass through radiation and in theory, less secondary radiation issues. Contact them if you are interested and they will overnight you a package.
Good Luck,

Kris
Posted 8/6/2013 2:02 AM (GMT 0)
You guys that were treated at FL proton, do you have any input in selecting a treatment time or do they just assignment it?
Posted 8/6/2013 2:55 AM (GMT 0)
I would like to see a study that shows proton actually works better than IMRT for treating prostate cancer...
Posted 8/6/2013 3:20 PM (GMT 0)
Jym62,

I considered having PBRT at UFPTI until I found out my BCBS of Alabama considered it still experimental and would not cover the cost. I also would have had a hard time being away from business for the 6 to 8 weeks as well.

You do not have your PC statistics posted but you may also want to look into CyberKnife for RT. We now have a CK facility here in Birmingham AL that wasn't here 2 years ago for me. My URO says it shows very promising as a RT for PC and the total treatment can be done in about 2 weeks. It is much more focal than IMRGT and less good tissue is damaged in the process from what he told me. Funny how  now with a local CK facility BCBS no longer considers it experimental and will cover the cost.

Terry

Posted 8/6/2013 4:14 PM (GMT 0)
"Funny how now with a local CK facility BCBS no longer considers it experimental and will cover the cost."

Since far fewer treatments are used, the total cost is likely to be cheaper than IMRT and certainly less expensive than proton..Insurance companies gravitate towards less expensive medical procedures..They are not going to tolerate a dramatic price increase unless there is a dramatic improvement in patient outcomes...
Posted 8/6/2013 7:40 PM (GMT 0)
You would think that BCBS would be the same from state to state, but it is not. BCBS of Florida does cover it, my co-pay was $35 per treatment. There was a patient from Alabama, he had medicare and it paid for treatment. It is expensive, so expect some insurance companies to try to deny it. If you contact UFPTI they can walk you through the insurance issues, they will make sure you are covered before you start treatment. They can also treat you with part IMRT and part Proton, depending on your cancer.

Regards,
Kris
Posted 8/6/2013 9:01 PM (GMT 0)
Fairwind you are so right about price and cost dictating treatment. My RALP hospital cost billed to BCBS was over $58,000 and the agreed insurance payout to the hospital was a little over $8500, so why would they want to payout much more to a PBRT center in Florida. BCBS is different in ever state but if there is a PBRT center in a state it will be covered by BCBS of that state. I did contact UFPTI and when I told them I had BCBS of Alabama they told me they had butted heads with them so many times and got nowhere so I gave up. Medicare will cover it in any state but I was not covered by Medicare. I heard CyberKnife costs are about 1/3 the cost of conventional IMRT or PBRT and treats in 1/3 the time too.  Looking back today with what I know I might have considered CK if I was a viable candidate for it.

Terry

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