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Proton Therapy

Starkloph
Posts: 2
Joined: Aug 2009

I have recently been diagnosed - PSA 5 Gleason 6 (3-3) in two out of 12 cores. I am 67 and was nearly 90% sure I wanted robotic surgery until I learned about proton therapy. I am now interested in learning all I can about that process. I have visited the websites, read the book by Bob Marckini and want to talk with men who have undergone the procedure. Are there any out there? Or - are there men who considered proton therapy and went another route? I would be interested in learning from them as well. Thanks.

channelsurferdude
Posts: 12
Joined: Jul 2009

I have similar numbers as you. I was set for DaVinci but upon further research, I have chosen Proton Therapy at Loma Linda. I will start treatment mid September. Please contact if you care to discuss anything.

TucNav
Posts: 8
Joined: Aug 2009

My Doc suggested looking into Image Guided Radiation Therapy as the advances have been dramatic. It might be available in your local area rather than having to go to Loma Linda. My Doc said that some of the studies are showing IGRT is on par with proton. Best of luck with whatever treatment you go with.

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lewvino
Posts: 1010
Joined: May 2009

My father was treated with Protons at Loma Linda in 1997 and is doing fine. When I found out about my cancer my initial thought was to go with Proton since my Dad had such good results.
However I found out later that my insurance denied its treatment and I would have had to pay out of pocket. Also after researching more indepth I learned some things about Proton which were not mentioned in Bob Marckini's book. After calls to Loma Linda and confirming some facts I then quickly settled on the DaVinci removal. Today is one week post surgery. If you want to chat offline my email is lewvino@yahoo.com

redeldorado
Posts: 2
Joined: Aug 2009

I went thru proton at Loma Linda in early '03. Be prepared to set aside time for 40 days of treatment (with weekends off). I Hope you live near the treatment center because you'll be going there every day of the week for 8 weeks! Also: be prepared to have an 8 inch ballon inserted in your rectum and filled with water to a painful level. In 2 years my PSA started climbing. Biopsy confirmed cancer, but guess what, no second chance at another round of Protons!! Really bad things happen during the second round of zapping! Now you're relageted to cryosurgey or one or two other alternates. Doctors are reluctant to do DaVinci because now your prostate has been reduced to a small gelatenous mass! I have just been thru my 3rd cryosurgery. Early 06. early 07, and early 09. Each time the cancer came back, Only this last cryo resulted in loss of most of my bladder control. If I knew about DaVincy in 02 I would have gone that route! Looking back I definitely would have gone DAVinci. If the cancer is still confined to the gland GET RID OF THE DAMNED THING!
Best of luck to you,
Bill

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lewvino
Posts: 1010
Joined: May 2009

Its interesting to read your comments Redeldorado on your Proton journey. A friend of mine also went to Loma Linda about 2 years ago for his treatment. He now is on his second fight with Bladder Cancer. I've read some studies that are showing if you proton you are more likely to get Bladder Cancer later. Interesting things that the Proton advocates don't mention.

mykinak
Posts: 3
Joined: Aug 2009

I had a friend recommend Proton therapy in Loma Linda as well. He had a friend that went there and had good success. But my uncle is a doctor and he had surgery for PC. I'm not sure whether or not it was open or daVinci but his take was go the way of surgery since once you have radiation it limits your options if it returns. You have some tough decisions to make and I hope this helps. Just make sure you explore all the options and choose the one that will best serve you. Take the time to talk to a few different doctors. God bless and good luck in making your treatment choice.

~m

channelsurferdude
Posts: 12
Joined: Jul 2009

The hardest part is deciding what is best for you. Research and read as much as you can and then filter the info.

Some investigators have claimed that proton therapy for prostate cancer offers less chance of developing secondary cancers, but the clinical data is sparse. Investigators (Nieder et al) have suggested that the estimated risk of men developing secondary cancers (such as bladder cancer and rectal cancer) following external beam radiotherapy, brachytherapy, and external beam radiotherapy/brachytherapy is low (less than 2%).

Slater et al reported on an early study of 1,255 men treated between 1991 and 1997 that overall biochemical disease-free survival rate with proton therapy was 73%, and was 90% in men who had a pre-treatment PSA ≤4.0. This rate was 87% in patients with post-treatment PSA nadirs ≤0.50. Rates dropped with rises in initial and nadir PSA values. Long-term survival outcomes were comparable with those reported for other curative treatments. The authors concluded that proton radiation therapy demonstrated disease-free survival rates comparable with other forms of local therapy.

Unfortunately, all modalities have side effects and risks involved. The best treatment is the one that is best for you. Keep researching and talking to people. Best of luck.

Bill91101
Posts: 60
Joined: Apr 2009

Hi Starkloph,

My dad had proton beam 13 years ago. No surgery or chemo or hormones (not available, I don't think).

He's 89 and he is GREAT!

I got diagnosed PC in April (PSA = 89/ Gleason = 3 + 4). I got IMRT radiation and Degarelix monthly injections. Some medical people prefer IMRT to Proton. Apparently less liklihood of damage. But I'm not really sure. My dad came pretty much 100% okay. (Went to Loma Linda in Redlands)

IMRT is cheaper than proton beam, and A lot simpler. No changing clothes, just pull your pants down to expose your lower abdomen. I went 42 times.

My PSA is now 0.6. My urologist wants to keep me on Degarelix for a couple more years. Says if PSA behaves itself, things will be pretty good.

Going to IMRT (see Vantage Oncology website) is easier than going to the dentist for a check up. People were at Vantage were super nice and I actually miss going because of the all the jokes we shared.

Good luck to you. My opinion is to try the radiation first. But ask around.

My pain is gone (except for minor uretha irritation).

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