Yippee! A major television station finally featured a show on pediatric proton versus proton for prostate cancer. If you missed it, watch it online here:
URL: http://www.cbsnews.com/stories/2010/05/26/eveningnews/main6522037.shtml
This in itself is a major deal for pediatrics because hopefully with over 6 million viewers some parent out there that needed to know about proton for their child, found out about proton and is now asking the oncologist if proton is appropriate.
However, I was disappointed in several points that I make in my comments here:
Dr. Gupta,
I was looking forward to this story so much since I am a dedicated advocate for pediatric proton. My own son, Jacob, was diagnosed with spinal Ewing's sarcoma at the age of 2 in 2007. He was treated at MD Anderson's Proton Center in Houston, Texas. They have treated over 300 children in their pediatric program so far. Also, Boston has treated the most pediatric patients of any center and their research with protons is helping develop more advanced protocols for many rare pediatric cancers.
What a shame that your story left parents with the impression the only choice they may have for treatment is Philadelphia, when in fact all seven proton centers treat pediatrics. When parents are considering treatment for their child, often location makes a big difference in terms of travel and residency costs and also family/friend support. Please consider doing another story that would fully explore pediatric proton. So many cancer stricken kids lives are depending on accurate information.
The other thing that upset me as a mother is the impression that was left with the viewers that this treatment is "new." It is not a new treatment. It is simply becoming more available because of new centers opening such as Philadelphia. Hampton is due to open in August and also will have a pediatric program. Please consider adding my non-profit's website to your story links so that parents that are interested can obtain all the information they may need to get to proton treatment for their child. www.pediatricprotonfoundation.org.
Thank you for your consideration. And a sincere Thank you for highlighting proton treatment for pediatrics.
Hugs and prayers to the Keegan family.
Susan Ralston
Executive Director
Pediatric Proton Foundation
PPF
Showing posts with label Roberts Proton Therapy Center. Show all posts
Showing posts with label Roberts Proton Therapy Center. Show all posts
Friday, May 28, 2010
Monday, March 29, 2010
DON’T DELAY CALLING A PROTON CENTER: PEDIATRIC PROTON SPOTS ARE LIMITED!
If you are considering proton therapy for your child, it is important that you seek admission to one of the proton centers as soon as you determine radiation is part of the protocol or treatment plan for your child’s particular cancer. Each center only has so many patient slots available for pediatric patients so the sooner you start the process, the better chance your needs will line up with an available opening in a nearby center.
Many parents are WAITING for their primary oncologist to make the referral. Please don’t wait for this measure. Doctors are busy and are juggling many cases. YOU must become your child’s advocate and make the call yourself. In a recent study over 85% of pediatric proton cancer patients were self-referred. Any parent can make a self referral to each of the proton centers. Our website here includes a variety of information to help you navigate the process. You will be required to obtain your child’s medical records for review by one of the proton centers for admission. Plan to obtain a complete copy of all medical records as soon as possible and continue to keep them updated throughout and after treatment. Please feel free to contact us at information@pediatricprotonfoundation.org if we can assist you in gaining acceptance to a center.
PATIENT ACCESS:
James Slater M.D Proton Treatment, Loma Linda, California 1-800-PROTONS
Francis H. Burr Proton Center, Boston, Massachusetts 1-617-726-0923
University of Florida Proton Treatment Institute, Jacksonville, Florida 1-877-686-6009
Midwest Proton Radiation Center, Bloomington, Indiana 1-866-ITS-MPRI
(1-866-487-6774)
M.D. Anderson Cancer Center's Proton Center, Houston, Texas 1-866-632-4PTC
(782)
ProCure Proton Therapy Center, Oklahoma City, Oklahoma 1-888-847-2640
Roberts Proton Therapy Center at the University of Pennsylvania Health System
Philadelphia, Pennsylvania 1-800-789-PENN
(7366)
Many parents are WAITING for their primary oncologist to make the referral. Please don’t wait for this measure. Doctors are busy and are juggling many cases. YOU must become your child’s advocate and make the call yourself. In a recent study over 85% of pediatric proton cancer patients were self-referred. Any parent can make a self referral to each of the proton centers. Our website here includes a variety of information to help you navigate the process. You will be required to obtain your child’s medical records for review by one of the proton centers for admission. Plan to obtain a complete copy of all medical records as soon as possible and continue to keep them updated throughout and after treatment. Please feel free to contact us at information@pediatricprotonfoundation.org if we can assist you in gaining acceptance to a center.
PATIENT ACCESS:
James Slater M.D Proton Treatment, Loma Linda, California 1-800-PROTONS
Francis H. Burr Proton Center, Boston, Massachusetts 1-617-726-0923
University of Florida Proton Treatment Institute, Jacksonville, Florida 1-877-686-6009
Midwest Proton Radiation Center, Bloomington, Indiana 1-866-ITS-MPRI
(1-866-487-6774)
M.D. Anderson Cancer Center's Proton Center, Houston, Texas 1-866-632-4PTC
(782)
ProCure Proton Therapy Center, Oklahoma City, Oklahoma 1-888-847-2640
Roberts Proton Therapy Center at the University of Pennsylvania Health System
Philadelphia, Pennsylvania 1-800-789-PENN
(7366)
Saturday, June 6, 2009
New Centers in 2009
Soon we will have 7 proton centers operating in the U.S.! The more the merrier if you ask me.
Procure's Oklahoma City Proton Center will open July 8, 2009 and is already accepting inquiries and beginning to schedule patients for consultations. This center can be reached by calling 888-847-2640. Some pediatric patients may be able to be treated there depending on if they need anesthesia. You can check out this new center by going to http://www.procure.com/. They have a nice newly designed website with tons of information available.
The other new center will be opening in November 2009 in Philadelphia - the Roberts Proton Therapy Center. This center can be reached by calling 1-800-789-PENN(7366). You can visit this center on the web at http://www.pennhealth.com/. They are planning to have a gantry room dedicated to pediatrics so this makes me very happy.
I was reading some of the very latest information available on protons versus photons, and it is indisputable regarding the superiority of protons in use for children. Children are still developing and having radiation hit healthy tissue can cause devastating effects. Especially when a child has a brain tumor. The brain is very sensitive to radiation. Doses as low as 18 gy can cause developmental delays, hearing problems, loss of iq (this happens every year after radiation for many years to come) and many other terrible problems. I heard a very reknowned radiation oncologist for St. Judes discuss this subject and it made me get goose bumps hearing the devasting effects of radiation to the brain. He touted the scientific evidence as showing protons vastly superior over photons or IMRT especially with brain tumors. I asked him why doesn't St. Judes have proton then? He said I would have to ask the powers that be. I plan too. Many parents flock to St. Judes because they are the only pediatric hospital dedicated to solely to pediatric cancer. Of course, I understand children can be referred to the other centers, but still.
I may be like a caped crusader here. Just an empowered Mom that feels her son's life was saved with protons. I am making it my job to make these facts known. I hope someday to get the attention of the media. My goal is to make sure in my lifetime that all of our cancer kids that need radiation treatment can get to the protons. Having more centers will ensure more slots are available for the children that truly have the most to gain from proton treatment. Join me in this effort - will you? Check out our website: www.pediatricprotonfoundation.org.
Procure's Oklahoma City Proton Center will open July 8, 2009 and is already accepting inquiries and beginning to schedule patients for consultations. This center can be reached by calling 888-847-2640. Some pediatric patients may be able to be treated there depending on if they need anesthesia. You can check out this new center by going to http://www.procure.com/. They have a nice newly designed website with tons of information available.
The other new center will be opening in November 2009 in Philadelphia - the Roberts Proton Therapy Center. This center can be reached by calling 1-800-789-PENN(7366). You can visit this center on the web at http://www.pennhealth.com/. They are planning to have a gantry room dedicated to pediatrics so this makes me very happy.
I was reading some of the very latest information available on protons versus photons, and it is indisputable regarding the superiority of protons in use for children. Children are still developing and having radiation hit healthy tissue can cause devastating effects. Especially when a child has a brain tumor. The brain is very sensitive to radiation. Doses as low as 18 gy can cause developmental delays, hearing problems, loss of iq (this happens every year after radiation for many years to come) and many other terrible problems. I heard a very reknowned radiation oncologist for St. Judes discuss this subject and it made me get goose bumps hearing the devasting effects of radiation to the brain. He touted the scientific evidence as showing protons vastly superior over photons or IMRT especially with brain tumors. I asked him why doesn't St. Judes have proton then? He said I would have to ask the powers that be. I plan too. Many parents flock to St. Judes because they are the only pediatric hospital dedicated to solely to pediatric cancer. Of course, I understand children can be referred to the other centers, but still.
I may be like a caped crusader here. Just an empowered Mom that feels her son's life was saved with protons. I am making it my job to make these facts known. I hope someday to get the attention of the media. My goal is to make sure in my lifetime that all of our cancer kids that need radiation treatment can get to the protons. Having more centers will ensure more slots are available for the children that truly have the most to gain from proton treatment. Join me in this effort - will you? Check out our website: www.pediatricprotonfoundation.org.
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