Thoughts on proton beam therapy?

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Squirm
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   Posted 11/23/2010 12:18 AM (GMT -6)   
I've been reading up on proton beam therapy. I know it has been around for a almost 20 years, but has recently seen a number of facility offering proton beam. I also read a report from Astro stating that enhancements and progression in photon radiation in terms of side effects has decreased the advantage of proton beam, given the cost involved.
 
Scrolling through the Yananow website, and *roughly* looking at the number of members who have side effect issues with photon radiation compared with the proton group, it appears that proton still has less side effects (although I know this is a very crude and anecdotal comparison). Nevertheless, I do give creditability to the website and the members who report them.
 
My father had some real nasty side effects from photon radiation (external beam 3d). However that was in 1997, but it still seems unusual there has been that much advancement in that short of time. 

Fairwind
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Date Joined Jul 2010
Total Posts : 3887
   Posted 11/23/2010 1:19 AM (GMT -6)   
The latest photon equipment, the Varian Trilogy Rapid Arc has not been used long enough to make any valid comparisons. But the few studies that touted the proton beam machine have been shown to be fudged in favor of that method..

The Varian machine mentioned above uses a low-energy CAT scan before every "shot" to insure the beam is exactly on target. It's head can rotate completely around the patient providing many more beam paths thus minimizing damage to healthy tissue..yada yada yada...So advancements are being made rapidly in the field of radiation treatment..

Proton treatment might be worth looking into if there is a center near where you live. For many people, the 2 month treatment cycle away from home is just too expensive and not all insurance companies will cover it...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT, Dec

John T
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Date Joined Nov 2008
Total Posts : 4268
   Posted 11/23/2010 12:31 PM (GMT -6)   
Squirm,
There have been several studies on proton therapy for PC and none of them have shown any advantage over IMRT. Proton was successful in the 1990s where it was concidered superior to the older ERBT machines. The limitation is the dose that proton can deliver and the beam cannot be shaped to conform to the irregular shape of the prostate. IMRT can deliver 81 gy vs 65gy and can infinately shape it's beam to avoid normal tissue.
Proton's applicability is in very small tumors, such as brain and lung leisions and not for large area application such a a prostate.Radiation has changed significantly since 1997 in both accurracy and the dose than can safely be delivered.
Because of dose limiatations proton would still work well for low risk G6 tumors, but I would not recommend it for the higher grade tumors.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

jamiss
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/23/2010 12:47 PM (GMT -6)   
I am a 62 year woman from Chicago,IL. I had proton therapy for 2.5 months in Boston, MA in 2008. I had naso-pharyngeal cancer with a tumor right behind my eyes, resting on my 6th optic nerve. I had to go to Boston because there wasn't a proton center here in Illinois. If I had had tomotherapy here in Chicago (my only option) I ran the risk of going blind. Proton therepy saved my sight & rendered me cancer free, along with chemotherapy & conventional radiation. I didn't have any side effects from proton therapy, other than the top of my head being very warm, as if I had been out in the sun. I did have tremendous 2nd degree burns from the conventional radiation that I had on my lymph glands in my neck. I learned of proton therapy from a friend of a friend who went to Loma Linda, CA for prostate cancer. He is a 10 years or better survivor, who is now 75 years old. I recommend proton therapy to everyone who is a candidate for it.

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 709
   Posted 11/24/2010 8:21 AM (GMT -6)   
A patient at MDA Houston posted this "odyssey" re: his treatment.  It is too late for me, but I only wish I had done more research.
 
http://protonpals.net/wp-content/uploads/2010/03/a-patients-odyssey.pdf

Post Edited (mr bill) : 11/24/2010 7:28:58 AM (GMT-7)


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/24/2010 9:45 AM (GMT -6)   

Purg,

In the context of advising someone else who has been recently diagnosed, please post links to or give citations for the research you mention.

Thanks in advance.

Zen9


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 11/24/2010 1:40 PM (GMT -6)   
Zen,
The ICER 2008 study is probably the largest comparing the various types of radiation for PC and proton came in last in all catagories, effectiveness, cost and side affects. Also search "The New Prostate Cancer Info link" as there are a few studies posted on proton Treatments. Many researchers trying to determine the effectiveness of Proton have been discouraged due to the lack of reliable data from Loma Linda.
The Prostate Cancer Study Group also include proton in thier study of PC treatment effectiveness and it was again on the lower scale of effectiveness.
Their is a huge advocacy among patients for proton treatment, but the studies just don't support any advantage.
JohnT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/24/2010 3:54 PM (GMT -6)   

To clarify:

I am not currently advocating for proton beam therapy.  But here in Houston, M. D. Anderson has the technology, and in order to pay for it MDA pushes it hard (including radio ads).

I just want to make sure I have whatever good data there is out there when I talk to others who ask my advice.

My current understanding is that despite a number of "true believers," there is precious little hard data supporting the promises of proton therapy.

But again, I would very much like to know what Purg is basing his statements on.

Thanks again.

Zen9


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/24/2010 4:44 PM (GMT -6)   

Purg,

I am familiar with the ICER 2008 study John T so kindly referenced.  I am not familiar with the "icer 2000 report" you state that you relied on (along with the other identified recent article for which you are searching).  Please advise.

Thanks again very much.  This is a big issue here in Houston.

Zen9 


Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 11/24/2010 5:13 PM (GMT -6)   
Zen, David & Squirm:  If you want some heavy duty reading, check this link to Dr. Dattoli's Cancer Center.  He provides his own views as well as provides a lengthy article from The June 2008 issue of Oncology Journal (volume 33, number 7, pages 748-753.  Try this link: http://www.dattoli.com/prostate-cancer-treatment-options/treatments-available-elsewhere/i/69.    You have to remember Dattoli is very biased toward his specialty (BT & RT) but makes very compelling arguments and has data to back him up.  If I lived close enough I would probably use him.  He is very negative on Proton, daVinci and Cyberknife for treating PCa.
 
Carlos
 
I just discovered the first link did not work.  I think it will now.

Diagnosed 2/2008 at age 71, PSA 9.1, G8 (5+3), stage T1c.
Robotic surgery 5/2008, LFPF at 6 wks.,nerves spared, stg. pT2c, N0, MX, R0, G8 (5+3)
PSA .12 at 2.5 years, rechk 2 wks later 0.2. All prior tests <0.1.

Post Edited (Carlos) : 11/24/2010 3:20:41 PM (GMT-7)


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/24/2010 5:20 PM (GMT -6)   

Thanks very much, guys.

And the "icer 2000 report," Purg?

Zen9


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/24/2010 6:44 PM (GMT -6)   
sorry, squirm

decided to erase my original post to you, since we have a member that is bent on trying to hassle me over what was a simple typo on my part when referencing a report. not going to play that game. also erased my other answers to that member, as he had no tolerance to a simple mistake. sad the games that some people have to play, i have too many important things to worry about then that. looks like you are getting some good answers otherwise. good luck

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/24/2010 6:59 PM (GMT -6)   
Purg,

I thought there was a second ICER report. A simple "That was a typo" would have sufficed.

Have a good Thanksgiving.

Zen9

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/24/2010 7:02 PM (GMT -6)   
I did post immediately that it was a typo, and your next response was to continue to question what I wrote. And I provided two other links that I had read on the subject. Just not into mind games, I only come here to learn, and to help. No other reason on my end.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7080
   Posted 11/24/2010 9:24 PM (GMT -6)   
I had Proton at MD Anderson mentioned by my uro/surgeon as an option, but some factors eliminated it:
1) Not an option for my insurance company, they said I had adequate treatment alternatives locally, and they would not pay any more than standard local costs for RT (the difference was not astronomical, but I would have had to pay travel and lodging, outside of the delta treatment (up front), so all in all, not doable without selling organs first).
2) I would likely have lost my job, or at least been forced into temporary disability, and therefore lost insurance coverage.
3) MD Anderson said I was too advanced for their program.
 
So not an option -

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/24/2010 10:06 PM (GMT -6)   
Many thanks, 142.

That information will be helpful to my two new friends.

Have a great Thanksgiving, and best of luck to you.

Zen9

Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 12/10/2010 12:27 PM (GMT -6)   
Hello,
I'm sorry I haven't responded in some time...been very busy. (I probably shouldn't even start a thread, if I'm won't be around to reply or respond).
 
Anyways, John regarding the ICER review of it, I gathered that the conclusion was proton beam wasn't worth the added costs. I don't know if by costs, they mean to the patient, the organization or both. What I also don't understand is there is a statement that says the long term effectiveness of proton beam is still unknown. I find that difficult to take in, as proton beam has been available for a fairly long time. In addition, the early attempts at photon radiation were more like a shot gun approach, or a "spray and pray", if you will. I agree that photon radiation has much advanced in the past decade, with IMRT, RapidARC, IGRT etc. But that doesn't mean proton is sitting still either. Mayo Clinic is installing "Pencil Beam" proton therapy, I believe that is similar to image modulating photon.
 
When reviewing the Yana site, it just seems to me that the proton group has the least side effects. And if the outcome is similar to photon radiation, then perhaps proton isn't getting enough credit. My dad had some fairly rough side effects to deal with from 3dCRT. He did not survive prostate cancer, but than again, got treated late, and had an aggressive tumor, a double whammy.
 
MSK prostate calculator  unfortunately doesn't calculate the % of being progression free for proton, but (again just a observation here) it seems that the spread between photon and surgery is narrowing on the short and long term duration.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/10/2010 6:56 PM (GMT -6)   
Squirm.
If you do a search on The New Prostate Cancer Infolink for proton treatments you will find a couple of reports from researchers that have looked at the Loma Linda data (the longest running data on prostate cancer and proton treatments) and have found serious problems as to how the data was collected. Their basic conclusion was that because of the poor record keeping at Loma Linda it will take another 15 years to get good data on the effectiveness of proton treatment on prostate cancer. So the data is there and it is old, but it is not very reliable. There are a lot of advocates of Proton Treatment, but none of the data that we have indicates it is more effective or has less side affects than IMRT.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 12/11/2010 11:08 AM (GMT -6)   
I looked at proton therapy very closely before choosing surgery. M. D. Anderson has a center near me, and they market it aggressively.

Trying to summarize three months of research into two sound bites:

1. There are a lot of "true believers" out there, and the medical people behind proton therapy are not shy about putting you in touch with them.

2. There is little to no hard medical evidence to support the claims made for proton therapy. Loma Linda et al either can't or won't release data that would give one solid ground to stand on.

To me, proton therapy came down to a leap of faith, and at (then) age 56 I simply couldn't bring myself to take that leap.

Happy holidays.

Zen9

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 12/12/2010 11:18 AM (GMT -6)   
Neighbor went to Loma Linda in 2002. He has been free since then. I looked into it but the 8 weeks away from home or traveling 8 weeks to and from did not fit into our life.
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 10/12/2010 DR Paul Kahn all nerves spared
Home 10/19/20
Cath out 10/22/2010
Prostate 56 gm. Gleason grade 3+4 = 7
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