April 13, 2009 Houston, Texas
PCa Over Diagnosed? Media’s Response to Screening and PSA Testing PSA screening does not carry any risk. It is a simple blood test. The risk is in treating men who have prostate cancer but whose cancer has not and will not cause any risk of being fatal. Until we can differentiate between aggressive and non aggressive tumors I think we should continue with aggressive screening for prostate cancer. That’s what we think should be the position of the ProtonPals. See a more complete article on PSA SCREENING. Joe, Ban and Peter.
A first in North America for the MDACC Proton Therapy Center A new video was released on March 30 describing how the Center has been treating patients with pencil beam proton therapy in Gantry 3. In the video and text copy Dr. Cox and Dr. Lee provides a clear description of how the newest nozzle works. There are no Plexiglas trophies to take home and use for a Jell-O mold anymore (taken from ProtonBob). That’s because the new nozzle doesn’t use the brass and plastic “stencils” apertures to outline the treatment area but uses a very precise, rapid fire pencil beam. Please see the video or the text Full Text Backgrounder for more detail.
Tell your friends about the PROTONPALS ProtonPal partner Ban Capron has a list of friends that’s almost longer than the the Pals mailing list. Every week he sends them(and me) a new photograph of one of the great places he’s visited. This week it’s Germany, last week it was Peru. Ban recently wrote a letter Ban Let’s His Friends Know to his friends that starts this way.
“March 8, 2009
Most of you receiving this e-mail know that I had (past tense) prostate cancer. That’s not unusual as many, if not most men, will get diagnosed with prostate cancer especially now that ways to discover it are so good. “
Please read the letter Ban Let’s His Friends Know and if you’re supportive of it, send a copy or your own version to all of your friends also. Encourage them to sign up for the ProtonPals newsletter.
A HOT LINE FROM PROTONPALS - The man-to-man Contact List works On Friday, March 4, I got a call from a newly diagnosed man from Louisiana. He’d found the ProtonPals web-site and used the man-to-man Hot Line to follow up with some volunteers. After talking with four of the ProtonPals, Raymond made an appointment in 2 weeks with the Center. He asked me “Why men don’t hear more about proton therapy and the ProtonPals?” We doing our best to help the search engines (Google, Yahoo, Live Search) find us and you can help by writing a letter like Ban did to your friends and getting them to sign-up for the newsletter. http://protonpals.net/sign-up or write to info@protonpals.net
March Support Group Meeting – On Wednesday March 25, Al Brown, one of our African American ProtonPals, spoke at the monthly group meeting. About a dozen men and their wives who attended heard about his journey to the Center; and of the many turns his journey took. Al is from Chicago where he’s self employed as a photographer, web developer and publicity agent and currently living in Rhode Island.
Al gave the group a clear picture of how our doctors and urologists are not telling us the whole story. You probably get referred for a radical or robotic prostatectomy. One of his doctors did mention radiation but it was X Ray(IMRT) and not proton. Al turned down these approaches and consulted with proton therapy centers - Massachusetts General Hospital in Boston, MA.(MassGen), Midwest Proton Therapy Institute(MPRI) in Bloomington, IN., University of Florida Proton Therapy Institute (FPTI), in Jacksonville, FL and eventually settled on the Proton Therapy Center. Al told us of his reasons for deciding not to use the other centers and will cover those in his “My Journey” with the ProtonPals. Al also presented his reservations about hormone therapy(ADT). Some of the men in the room had ADT along with their radiation treatment and liked the increased survival odds that this combination treatment gives them and didn’t necessarily support Al’s outlook.
Bottom line from Al’s talk and the discussion that followed –
Become aware of prevalence of prostate cancer especially if you’re an African American where you are twice as likely to get it and die from it than both Caucasian or Asian men.
Screening should start early when you are 50 years and for the African American it should start when you’re 40 especially if you have a family history. (see flap about PSA screening below)
Become informed of the side effects of all the types of treatment otherwise you’ll experience all the side effects of radical surgery. Like Bob Marckini (ProtonBob), who was staggered as he saw his older brother wheeled out of a 4 hour surgery, one of our members in the meeting had a similar experience. His brother had radical surgery many months ago and experiencing the side effects. He commented that “once you’ve visited a close friend or brother who’s had the surgery you’ll definitely choose proton therapy.” Bob Marckini vowed he’d make “every effort to find an alternative treatment to avoid the trauma, blood loss and side effects” resulting in his treatment with proton therapy at Loma Linda.
“Walk out of any doctor’s office if you don’t get clear or appropriate answers to your questions. Stand up for yourself. I’m alive because I did.” from an article in New York Daily News.
Thanks to the men who’ve written and given us their story and anecdotes to the ProtonPals and key other sites, the information on proton treatment today is more widely available on having internet and specific web-sites as resources. Everyone in the meeting used the internet to research the disease, the treatments, the side effects and to cross check the information learned from their doctor or from hear say.
Ab Fay, our long time ProtonPal supporter, brought one of his newly diagnosed friends to the session and we had a go around where everyone told about how he found out about proton therapy radiation.
Many of our patients who have been treated are continually referring patients to the Center and I would encourage you to do also. You can pull a brochure from the web-site and give it to them or refer your friend to the ‘”Just Been Diagnosed ?”section or the “Contact List” on the web-site. “Just Been Diagnosed?” or One on One Hotline
Janet, one of the wives in the meeting said, we ought to publicize the woman’s story .
“ Sorry Gary & I didn’t get to visit with you after the meeting, also. I am so glad that we both attended. I see the need to get “the word out” to as many men and women as possible. This procedure is so much less invasive than the radical prostatectomy with lots less adverse side affects and more hope for a brighter future for all men and their wives.
I sincerely want to help with this. As soon as my hand heals, I will begin my quest to get more information to first: The Oprah Winfrey Show. I realize how futile that may sound, but I believe that with the help of some of the “Proton Pals”, it will be possible.“
If you’d like to join Janet please write to me.
Supplements ( Vitamin E and Selenium ) May be Effective After all A large clinical study , SELECT(Selenium and Vitamin E Cancer Prevention Trial), concluded in a September, 2008 report that normal doses of 400 IUs daily of Vitamin E and 200 mcg of selenium do not prevent prostate cancer.
BUT WAIT!, that’s not the whole story. Other views 1) the nutritionists (maybe a vested interest) calls the study flawed because of the compounds used and the dosage. 2) MORE IMPORTANTLY, NOTABLY, AND CLOSE TO HOME is the March 2009 publication by Dimitra Tsavachidou in our very own M. D. Anderson Cancer Biology Department reports that Vitamin E (400 IU) and selenium (200 micrograms) supplements taken for 3 to 6 weeks do affect gene expression and can act as a tumor suppressor. Eric Klein, an MD from the Glickman Urological and Kidney Institute in Ohio said the new study “lend credence to the previous evidence that selenium and vitamin E might be active as cancer preventatives”. In an attempt to rationalize the differences between epidemiological and in vitro studies and randomized trials like SELECT, Klein said that randomized controlled trials “do not always validate what we believe biology indicates and that our model systems are imperfect measures of clinical outcomes in the real world”. Facts about the study Reports of the study
See the Nutrition section on our web-site: http://protonpals.net/nutrition/nutrition-2
More News on the Equipment Turnaround at M.D. Anderson. An essential part of the proton generation train was replaced in an outstanding effort. A turn around was scheduled at end of February and was thought to take a week but with excellent planning it was finished in 4 1/2 days. With engineers and physicists working around the clock the center was down only three week days, Friday, Monday and Tuesday and was operational and treating patients again on Wed.
If are technically inclined here’s a bit more detail - the piece of equipment that was replaced is called the RFQ(radio frequency quadrature) in the LINAC (linear accelerator). The LINAC/RFQ takes the proton particles from the hydrogen source and accelerates them up to 1.5 million electron volts before injecting them in the large synchrotron. How Proton Radiation Works The big magnets in the synchrotron then whirl the proton particles(not photon waves like regular x-rays) around until they reach a very high energy level and velocity, 250 million electron volts. For your treatment, a few nanoseconds of that beam is spilled out from the ring to the the gantry nozzle.
Genetic Based Reasons for Prostate Cancer The investigators are currently developing a test, expected to be available in the next few months, using saliva or blood samples. “We plan to offer the test now because we believe that some men and their physicians will want to take advantage of these findings knowing that the test will be refined over time as additional risk variants are discovered,” Dr. Xu told Medscape Oncology
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