PROTON THERAPY ~ A come back?

I looked at doing Proton therapy in Jacksonville instead of photon radiation. Blue Cross Blue Shield made my decision for me when they refused to cover the Proton Therapy.

When I was diagnosed, I had never heard of proton therapy, and thought my only real decision to make was whether to have open or DaDivinci (sic) surgery. I had even started researching Johns Hopkins and the Mayo Clinic to see which one I would go to. THEN a friend of my wife told her about her husband having been treated at Indiana University at Bloomington with proton therapy. I took a look at it, and found out several other people I knew from my area had also been treated there. I started to then investigate ALL available options for treatment. I interviewed several who had had surgery, brachytherapy, imrt, and proton therapy.

I decided on proton therapy, and both my urologist and my family doctor were in agreement.

Unfortunately, my insurance company was not, and I am now in the appeal process. Based on past precedent, I am hopeful that my appeal to an independent third party reviewer will be successful. If I am not successful in my appeal, I will go for some form of imrt. For me, the choice of external beam radiation, be it proton or photon, was the most appealing method of treatment.

As in anything, you pay your money and take your chances.

I intend to look into proton beam therapy as well. Something about it just makes sense. As I understand it, the energy is released in the target area, with much less energy hitting tissue on the way in and almost none on the way out. MD anderson has a center and one is planned in NY in which Sloan Kettering will be participating. If the two top cancer hospitals in the country are doing this type of therapy, it must be good science.

You would be amazed at the power differences and nuiances within radiation rays and what they could accomplish. (pages 118-127 Dr. Strum's book A Primer on Prostate Cancer). The power goes in this order : neutron rays, proton, photon, (then lesser like electron after the photon). All four of these are useful in PCa patients scenarios, the electron rays can be used as light duty radiation for you possible breast enlargement issues from PCa drugs used, to prevent them enlarging (this is a safe ray for that protocol) and I had it done in one session, usually done in 4 sessions, low exposure levels, however is not guaranteed on all patients to prevent such.

There is one facility operating right now on PCa using neutron rays(was 3 in USA) (super powerful and work differently than proton or photo, if you read about the differences), you need a cyclotron to do this (those are scarce and expensive) also the doc using such needs to be an expert, making errors with this would be really significant. I got 10 session of Neutron rays and then 24 sessions of Photon rays and the max. overall exposure you can get...as my primary treatment (I was refused surgery righteously by Dr. Menon). The doc I did have had a written article about his findings over the years, that using Neutron & then Photon rays had a significant difference in patients outcomes, measureable. So, that is why I chose it and my prostate was loaded to the max with PCa...not sure seeds would be completely doable and not wanting to travel to Florida or Georgia from Michigan. Maybe proton will prove out along the way, on its power differences. Not much written on neutron radiations for us to look at, but there is some.

Just so you know there are many ways to work on the dragon and even within those we have nuiances of newer radiation targeting and methodologies...getting complex as heck.

Tony, interesting link and thanks for sharing.   However the science outlined in this blog is not particularly new and, indeed, is pretty much the same as what I was presented by Shands when I considered PBT in 2008.  This sounded (and sounds) "great" but the problem that I had with making this choice was that almost all of the curative and SE data that I could find was anecdotal.  You have been a big proponent of seeing long term data before making decisions...I could find 10-15 year data on brachytherapy, external radiation and surgery but was unable to find the same on PBT.  You referenced some head to head studies and I'm just not familiar with these.  Are they long term and, if so, could you please find the time to share them?

Thanks,

Tudpock (Jim)

http://www.protoninfo.com/TenYearData/TenYearStudy.pdf

10 Year study for PBT.

Disclaimer:  It is from a PBT center.

Sagittarian, thanks.  But, I think I recall seeing this one before and discounted it because:

1.  The mean and median follow up was only about 5 years.

2.  Only a small number out of 1200+ patients had ten year results.

3.  Over half of the patients were treated with both photon and proton.

So, unless I'm missing something, I still haven't seen long term data on PBT therapy results and SE's.  But, I really would like to believe this is a good choice...just need some data!

Tudpock (Jim)

Interesting how any discussion of proton therapy treatment brings out such strong opinion about the appropriateness or not of this type of treatment. Inasmuch as the supporters of PBT are often taken to task for being "cheerleaders," the same could be said for those who challenge PBT with nothing more than their opinion. Frankly, reading this forum for the past couple of months has done more to convince me that surgery is one of the least desirable options for treatment of PCa. I simply cannot believe that such respected cancer centers as M D Anderson would use PBT to treat PCa if it were not a viable and effective way of doing so. Likewise, I cannot believe that so many other major hospital facilities would be in the process of adding PBT to their arsenal of treatment options.

Everything that I have read indicates that PBT is indeed a very effective treatment for PCa. The only criticism that I have found is really the cost of the treatment, and whether for PCa it is justified in comparison to other radiation options. That is fair debate, I suppose. But to say it isn't an effective treatment is a statement that I would disagree with.

Skeeter, I didn't see anyone give an opinion on this thread that PBT was ineffective.  JohnT referenced a couple of published articles and I hope you didn't take my questions as statements that I thought PBT was ineffective.  In fact I would very much like to believe that it is a VERY effective treatment and that the SE's are minimal...after all, that's what most of us want.  All I'm saying is that when I was looking at PBT as an option I was unable to find substantive long term data about either it's effectiveness or side effects.  Tony stated that PBT compares well with IMRT and brachytherapy studies...I'm just asking for these to be shared by him (or anyone) since I was unable to find such data.  I hope it exists.

Tudpock (Jim)

I would like to point out that because we lack level 1 studies on the efficacy of proton beam therapy, this would still not be the choice i would have chosen. For me, the decision to go with surgery was the best choice as I felt most secure with it and I had access to a very good doctor who had history in our family (not prostate cancer related) and who would do the procedure at a reputable location. My surgical morbidities are far less than many others have experienced so I am happy with the choice and because of my choice I had the opportunity to look at adjuvant therapies.

My biggest concern with any form of radiation was long term side effects which today are still poorly documented for a man that was just 44 years old. But because I was 44 and had locally advanced disease I believed that most of the long term morbidity associated with radiation therapies were outweighed by my stage, Gleason sum, and age (life expectancy). I felt I needed to keep damming the torpedoes and attacking the cancer.

My friend who is a Harvard trained radiation oncologist released this post on his website and I thought it was appropriate to share. I do believe that PBT can be effective for many men of all stages. It is more likely to succeed than to fail by a large margin. I think that is important to say for most radiation options. With the median age at diagnosis at 67yo, we do have good radiation data for that patient.

Tony