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Proton therapy..if you've had it please share

djs123
Posts: 102
Joined: Jan 2012

Husband has a Gleason score of 9...,seriously considering proton therapy in Jacksonville. Please share your experience

tennisjon
Posts: 1
Joined: Jan 2012

djs123 I had External beam radiation 6 years ago. I am 73 years old and doing fine. I started a support group meeting in my town and have heard from several people about proton treatment. Don't know anything about it other than I hae heard good things about it at Loma Linda Medical Center. Look up Loma Linda or call them at 866-546-7088. A gleason of 9 is very high, get on this right away. Good luck, Jon joncorn38@yahoo.com anytime

Swingshiftworker
Posts: 620
Joined: Mar 2010

I think others have reported elsewhere on this forum that Gleason 9 is too high for PBT treatment. I believe the standard guidelines for PBT (and for CyberKnife another form of radiation treatment) is Stage T1 or T2 (confined to the prostate), PSA less than 10 and Gleason 6 (maybe 7).

There are also quite a few other threads where people discuss what methods of treatment would be best for a patient w/a Gleason 9, which usually involves some form of radiation and hormone therapy. A quick look at the current list of threads and/or a simple word search using "Gleason 9" should find the threads for you.

Good luck!

Feb2010
Posts: 51
Joined: Mar 2010

Sorry for the double posts.

Feb2010
Posts: 51
Joined: Mar 2010

I've had it. I was Dx'd when I was 46. Doing great, PSA on a down-glide slope 1.5 years later. You could email me rxt555@yahoo.com if you want.

Feb2010
Posts: 51
Joined: Mar 2010

I've had it. You could email me rxt555@yahoo.com if you want. I was 46 when i was diagnosed. Doing great 1.5 years later. I was treated in Loma Linda.

SoCalBldr59's picture
SoCalBldr59
Posts: 1
Joined: Feb 2012

I was diagnosed in March of last year. PSA 9.6, Gleason 7. Decided on Protons @ LLUMC. 45 treatments starting at the end of June thru Sept 1st. Time invested is a major difference between this treatment and the others. Two months of treatment and another two months recovering from the radiation. If you have the time, some don't. They're running businesses. I did. All systems are working just fine at plus 5 months.

Before treatment, I spoke with a friend of a friend who was treated 2 years ago. He had no complaints. He was experiencing the occasional rectal bleeding as the scab was occasionally torn.

During treatment, I had the opportunity to speak with alot of patients their at LLUMC for treatment. Alot of horror stories were told of outcomes from other treatments. Some who had the prostate removed were there now because not all the cancer removed.

My decision was based on the following reasoning. Removal of the prostate does just that. It doesn't treat the area around the prostate. Proton treatment treats not only the prostate but also the area immediately surrounding the prostate. They give you a 70% chance at no cancer recurrence. This is the same figure the robotic urologist gave me.

They've been doing this treatment for 20 years. 16K plus patients. I figured they knew what they were doing. And, I am interested in "guality of life" as many others I met there were.

Hope this helped,

Greg

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