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Posted 7/31/2008 10:07 AM (GMT -7)
I saw an MSNBC report yesterday documenting correspondent George Lewis's prostate therapy using proton beam therapy at Loma Linda University.

I checked yesterday and there are only a handful of these proton beam therapy facilities in the country and somewhere I believe I saw the treatment costs $159,000! Can that be right?

I was wondering what this learned group has to say about the treatment (the good and bad) and what feedback anyone has about the cost.

Thanks

Jack

 

Male: 63

PSA: 12.5

Scheduled For Biopsy 7-29-08

Current situation/symptoms: Back pain, some flow problems, Dr. says prostate is "hard" not soft...no nodes on examination.

Posted 7/31/2008 12:07 PM (GMT -7)

Jack,

I had my Proton beam treatment almost 3 years ago and am doing well. Lots of info on www.protonbob.com. Many testimonials on the site. There is lots of info on this site from Dave and maybe a dozen of us. It is expensive. I had medicare and supplimental insurance and it was paid for. They may bill that much , but I'm sure they don't get that from Insurance Co's. Upside is fewer side effects. downside is most facilities have long waiting lists as Proton Beam Therapy is being discovered. Funny, it's been around for more than 17 years.

Ken

Diagnosed with a Gleason 4X3. Second opinion at Stanford came back as 3X4, 1 out of 7 samples, Left Side. DRE showed Normal. Before Biopsy Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. 1st PSA 4 Months 3.4, PSA at 8 Mo. 1.7. - 1 Yr. PSA 1.8 ( Different Lab ) 4 th PSA Slightly up at 2.19- Free PSA at .33 probably due to BPH. 1 year and 11 mo. Urologist discovered Scar Tissue in the uretha causing frequent urination with burning. Bladder not emptying completely.
Scheduled ( 12/17/07 ) to have the scar tissue sliced to open up the restriction. Good news is PSA is down to 1.14.

Urethrotomy performed. Flow much improved. No more burning.

PSA bump to 3.1. being checked at 3 months now.

Posted 7/31/2008 4:09 PM (GMT -7)
I think the 159K is probably in the ballpark as far as total cost. I have added up all my statements and it came to about 144K however they settled for "reasonable and customary charges" of much less than that. My total cost was ZERO, except for out-of-pocket expenses for living in So. Cal. for 2 and 1/2 months. I also know that Medicare reimburses about 22K for the cost of treatment and we were quoted about 37K if we had to pay ourselves. The conclusion would be that the cost is either overstated or highly subsidized.

As far as the treatment itself I have absolutely nothing bad to say at all. Any issues I had occurred during treatment, abated soon after completion and the numbers as seen in my signature, speak for themselves.

54 years old (55 currently)

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C.  After web research discovered Proton Beam Therapy and called Loma Linda. Completed consultation with Dr. Luu on 7/5/2007 and started treatment at Loma Linda on 7/26/07. Completed treatment 44 on 9/28/07. 0 treatments remain. Side Effects remain minimal. 1st PSA result on January 28th is 1.1. PSA result on July 17th, 2008 .73 . One year removed from start of treatment.

Posted 7/31/2008 4:15 PM (GMT -7)

Thanks for the information.

When you talk about a wait at Loma Linda or other centers how long a wait do you mean? A month a year...?

Thanks

Jack

Male: 63

PSA: 12.5

Scheduled For Biopsy 7-29-08

Current situation/symptoms: Back pain, some flow problems, Dr. says prostate is "hard" not soft...no nodes on examination.

Posted 7/31/2008 6:55 PM (GMT -7)
Jack

I just graduated from Jacksonville last week.

It is my understanding that most of the proton centers are getting backed up so if you decide give them a call.

Combo treatment of Hormone therapy, 25 IMRT and 17 Proton.

The cost is what the others mentioned.

My story is on my website

Richard
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana

Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 

Suspected lymph node involvement

Lupron & Casodek May 08 for 2 years

Completed 25 IMRT and 17 PBRT U of Florida Proton Therapy Institute 7/24/08

PSA .21, free PSA .08, Percent free PSA 38.1, testosterone 14.6

Turn Stumbling Blocks into Steping Stones and Keep Smiling

Our Journey is on WWW.GLEASON10.COM

Posted 7/31/2008 8:36 PM (GMT -7)
Last In heard Loma Linda was backed up for 6 months, But one of the Gantrys is down for modernization and it should help a lot when it's up again.

Jack Z said...

Thanks for the information.

When you talk about a wait at Loma Linda or other centers how long a wait do you mean? A month a year...?

Thanks

Jack


Diagnosed with a Gleason 4X3. Second opinion at Stanford came back as 3X4, 1 out of 7 samples, Left Side. DRE showed Normal. Before Biopsy Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. 1st PSA 4 Months 3.4, PSA at 8 Mo. 1.7. - 1 Yr. PSA 1.8 ( Different Lab ) 4 th PSA Slightly up at 2.19- Free PSA at .33 probably due to BPH. 1 year and 11 mo. Urologist discovered Scar Tissue in the uretha causing frequent urination with burning. Bladder not emptying completely.
Scheduled ( 12/17/07 ) to have the scar tissue sliced to open up the restriction. Good news is PSA is down to 1.14.

Urethrotomy performed. Flow much improved. No more burning.

PSA bump to 3.1. being checked at 3 months now.

Posted 8/1/2008 12:51 PM (GMT -7)

Wow six months

I know that Indiana, Florida and Mass General have Proton Centers. Is their wait the same? And can someone wait that long with cancer?

Jack

Male: 63

PSA: 12.5

Scheduled For Biopsy 7-29-08

Current situation/symptoms: Back pain, some flow problems, Dr. says prostate is "hard" not soft...no nodes on examination.

Posted 8/1/2008 1:04 PM (GMT -7)
I'm sure they are all different. You need to check with them individually. Depends on the facility and how many they can handle in a day.Loma Linda is very popular as they have the long term experience. They were doing around 150 a day when I was there.

Diagnosed with a Gleason 4X3. Second opinion at Stanford came back as 3X4, 1 out of 7 samples, Left Side. DRE showed Normal. Before Biopsy Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. 1st PSA 4 Months 3.4, PSA at 8 Mo. 1.7. - 1 Yr. PSA 1.8 ( Different Lab ) 4 th PSA Slightly up at 2.19- Free PSA at .33 probably due to BPH. 1 year and 11 mo. Urologist discovered Scar Tissue in the uretha causing frequent urination with burning. Bladder not emptying completely.
Scheduled ( 12/17/07 ) to have the scar tissue sliced to open up the restriction. Good news is PSA is down to 1.14.

Urethrotomy performed. Flow much improved. No more burning.

PSA bump to 3.1. being checked at 3 months now.

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