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Proton Therapy Veterans - Please weigh in...

jct9841
Posts: 19
Joined: May 2011

Hello all,

I am in the middle of my research on the various PC treatment options. I would like to go with a therapy that offers a reasonable chance of a cure and maintain maximum of quality of life.

If you have looked into or undergone Proton Therapy treatment please reply:

1. Is Proton Therapy a viable treatment option in your opinion?

2. Has the therapy met your expectations.

3. Would you choose this therapy again if you had a do-over?

4. What did it cost?

Thanks in advance,
John

PSA - 4.18
Gleason - 3+3
Stage T1C
Age - 60

jjklish
Posts: 2
Joined: Aug 2011

Hi John,

I recently finished proton treatment for my Prostate cancer. I'm 67 with a Gleason score of 6 and PSA of 3.1, and generally in good health.

In response to your specific questions:

Yes after doing my research I think its a viable option. I believe it was considered as good as the outcomes for other radiation therapies with less damage to the surronding organs.

As mentioned I have just finished my treatments and have no meaningful side affects (currently taking flowmax to help with urine flow, but other than that, no issues what so ever). I will be taking my first PSA test in about 2 months.

I would definitely choose this treatment again.

As far as cost is concerned, I am covered under Medicare with Blue Cross and Blue Shield as secondary. The cost to me was zero since the treatment was covered under both.

Hope this helps. Good luck to you and your research!

John K

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

John,
Welcome to our forum and wishing you the best. My Dad had Proton back in 1997 at Loma Linda. He was a Gleason 6 like you are. So he is a 14 year survivor! So yes it was a viable treatment option for him. They have best success with the lower grades. He was 65 when he started treatment. I have no idea on the cost and being 14 years ago of course would be totally different then now.

I'm a Gleason 7 and had Davinci two years ago. My first thought was proton since my dads success but my insurance company denied. Also when talking to the Proton experts they told me my case would be 'iffy' for best results using proton.

The main disadvantage of proton is if you do not live near a center you will need to temporarily relocate for the treatments. This of course adds to your cost.

Have you looked into Cyperknife? Numerous men on the forum with Gleason 6's are reporting excellent results with Cyperknife and you only need about 5 treatments rather then around 40 with the proton.

Lewvino (larry)
age 56

Swingshiftworker
Posts: 658
Joined: Mar 2010

It's CyberKnife, Larry. ;-)

As one of those men who have received the treatment, I'd add more but the original poster (JCT) only asked for info about PBT from prior PBT patients and I try not to avoid hijacking a thread whenever possible, However, if he expands his inquiry, I'd be happy to chime in about CyberKnife, as I often have before.

Ciao!

jct9841
Posts: 19
Joined: May 2011

I would appreciate your take on the treatment.

Swingshiftworker
Posts: 658
Joined: Mar 2010

Ok, JCT, since you asked, Cyberknife (CK) is a form of Stereotactic Body Radiation Therapy (SBRT), which IMHO is the most advanced and precise method of computer assisted external beam radiation therapy (EBRT), including but not limited to PBT, IMRT, IGRT and 3DCRT, currently available. It is used primarily w/men -- like you (and me) -- who have early stage PCa: Gleason 6, Stage T1c and PSA less than 10.

Unlike Proton Beam Therapy (PBT), CK only requires 4-5 treatments as opposed to 28 or 40 treatments (depending on the protocol) w/PBT. CK uses a program and robotic arm and moving treatment table that can allow for thousands of different angles and levels of radiation delivery, while PBT is directed at only one focal point that also requires the use of a body cast (to keep you immobile during treatment) and the insertion of a water filled balloon in your rectum in order to protect it during each treatment.

CK does not require a body cast or balloon because it can adjust for body and organ movement during treatment by moving the arm & table which also enhances the precision of radiation delivery and the minimization of collateral tissue damage and the resulting side effects. Given the limited number of treatments required, you also do not have to move to live for a month or more near the treatment site w/CK (as you do w/PBT) in the event you do not live near a treatment site.

PBT has been around longer and has a large group of very ardent supporters who have had good success w/the treatment but the results of CK patients over the past 5 years, during which is has been used most, have been equally as good w/o the inconvenience of PBT. Those of us who have received CK treatment and who have reported about it here, have had no significant side effects -- no incontinence and no ED. The jury is still out as far as the success of the treatments for those of us here but early reports are generally promising.

Insurance coverage is available for CK, but coverage is not universal; some cover it and some don't. BTW, I chose CK over PBT mainly because it was covered by my group and PBT was not. If both PBT & CK had been covered, I would have still chosen CK because it was offered at UCSF near where I live and also because of the other differences mentioned above.

If you do a word search for Cyberknife or CK, you'll find a lot of posts about it here in this forum and elsewhere on the Net. The manufacturer of CK -- Accuray -- also maintains a user forum for discussion specifically about CK.

Here's a link to the pdf file for the most recent and best cumulative report of prior studies about CK currently available: http://www.google.com/url?sa=t&source=web&cd=7&ved=0CEoQFjAG&url=http%3A%2F%2Fwww.cyberknifeofli.com%2Fimages%2Fstories%2Fcontent%2FPDF%2Fckprostatetcrtak.pdf&rct=j&q=cyberknife%20study%20katz&ei=a01mTp28DbLKiAK7wNWmCg&usg=AFQjCNHmqKXf7mcpQJdr8GCszkQ1bBcULw&sig2=yXh6bpRcRNAFd-PlYszG7Q&cad=rja.

The study was prepared by a Dr. Alan Katz, who is a CK physician. And, here's the link to Accuray's prostate patient forum: http://www.cyberknife.com/Forum.aspx?g=topics&f=2586

If you take the time to investigate, I think you'll find CK more appealing than PBT but insurance and other factors could come into play which will still lead you to choose PBT over CK, but, in either case, you should do fine.

BTW, I believe that there are a few (but not many) prior PBT patients online here and you may be better off going to "The Brotherhood of the Balloon" site (which is the name of the support group for PBT patients/survivors) for personal accounts about the treatment: http://www.protonbob.com/proton-treatment-homepage.asp. And, if you haven't read it already, I suggest you read Robert Marckini's book on his experience w/PBT. I got a copy free from Loma Linda and U of Florida when I inquired about the treatments there.

Good luck!

robert1
Posts: 82
Joined: Apr 2011

Dear jct9841:

Although I did not choose Proton, I did visit the UF facility in Jacksonville, underwent their preparatory process, and studied this option very hard. The only reason I chose another treatment was the less than great documented results for PBT for intermediate risk patients...me. For low risks guys, the PBT longer-tern cure rate is probbaly in the mid to high 90th percentile.

Assuming you had a multiple core biopsy and only a small percentage of those cores were positive, and those only to a lower percentage of disease, PBT is a great choice. As advised herein, you may want to compare long-term results for Cyber Knife, Brachytherapy and IMRT also. All of them have delivered results in the mid to high 90th percentile when treating lower risk patinets.

As unlucky as it is to test positive, you are fortunate to have virtually every option at your disposal.

Good luck!

robert1

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