Editorial: Hope in Hampton - dailypress.com

Editorial: Hope in Hampton - dailypress.com

Thank you Hampton University for the opportunity to tell our story and advocate for pediatric proton therapy. Wow, it seems we made a difference! Thanks to Carol too for writing this editorial.

National Association for Proton Therapy Spotlights Pediatrics

National Association for Proton Therapy Spotlights Pediatrics

Seoul, Korea - A Viable Option for Pediatric Proton Patients

Seoul, Korea - A Viable Option for Pediatric Proton Patients

There is a HUGE Unmet Need for Pediatric Proton Treatment

I was more than shocked to learn only 384 pediatric patients received proton treatment in 2009. WOW! Not a happy wow, but a sad wow. The number should be more like 3,000!!! Okay, Pediatric Proton Foundation you have your work cut out for you!

Consider the following comments from our board member Dr. Sameer Keole, Radiation Oncologist with ProCure's Oklahoma Proton Center.

"Our estimates are that ~3,000 children a year in the US would benefit from proton therapy. Best estimates are that, in 2009, 380 children received proton therapy in the United States. (Many of these patients are from abroad) With the addition of both our center and PENN now adding pediatric capacity, hopefully this number will climb to 500 in 2010. Still, more than 80% of children who would benefit from protons will not be able to receive this therapy."

There are many reasons that the number of pediatric patients numbers are limited. My main focus today is the number of centers. We need more. Each center has only so much capacity to treat children, and in previous blog I had estimated the number of kids treated based Boston's percentage of total pediatric patients treated at 1,000. I was wrong because I assumed everyone treated a similar percentage of peds. Boston actually treats the most percentage of peds and perhaps I should have used an average. Now I know the actual numbers by center, and some centers obviously have no focus on treating pediatrics. I know the kids don't turn the profit a prostate cancer patient does, but where is the morality of healthcare these days? Why aren't our children a priority for all centers? Why do all centers have a child squarely pictured on their brochures and their web if they have no focus on pediatrics? There is much to answer here for future blogs and I digress.

It was GREAT news then that plans for two new centers were announced over the past month. One in Knoxville, TN and the other in San Diego, CA.

1. A planned Knoxville cancer treatment center is set to become the first place in the state to offer proton therapy. The state's Health Services and Development Agency approved an application last week from Knoxville-based ProVision Trust to build a $118.8 million center and fill it with proton therapy cancer treatment equipment. ProVision has lined up support from the University of Tennessee Medical Center.

2. Scripps Health announced Tuesday that it will manage a $185 million proton center to be built in northern San Diego by Advanced Particle Therapy, a private health care company based in Minden, Nev. Construction is expected to start in July on a 7-acre site in San Diego's Carroll Canyon business district near Mira Mesa. The 102,000-square-foot facility is to include five treatment rooms, three with special gantries that allow a proton beam to be delivered to a patient at almost any angle. Officials said the project is expected to be finished in 2013.

My hope is that the new centers and the current centers will focus on the positive impact they can have on the pediatric cancer cases. We want all the centers to make it their priority to treat pediatrics, and report their numbers, not just show the kid's pictures on their web and brochures. Our kids our counting on us. Our kids need the voice of the Pediatric Proton Foundation to make their case to those that can change these statistics. Please visit and support us at http://www.pediatricprotonfoundation.org/.

Dr. Torunn Yock Presents Promising Use of Protons for Pediatric Medulloblastoma

Radiation therapy is integral in treatment of pediatric brain tumors. However, conventional photon radiation is associated with long-term neurocognitive effects, including decrements in IQ and difficulties with attention, processing speed, and other executive skills. Proton radiation provides better targeting of tumors than conventional photon radiation, sparing surrounding healthy tissue. It is expected that radiation-related neurocognitive impairments would be lower after proton radiation relative to reports of photon radiation.

The study presented at ASCO examined long-term neurocognitive outcomes of 56 patients with brain tumors treated with proton radiation at MGH. “Late effects of radiotherapy can be disabling and affect health, as well as hearing, neurocognitive functioning and psychosocial functioning,” said Torunn I. Yock, MD, director of pediatric radiation oncology at MassGeneral Hospital for Children. “Proton radiation radiates less normal tissue, which should result in fewer late side effects of treatment.”

Conclusions: At 2-year follow-up after proton radiation, neurocognitive performances were stable, with no significant change seen in most areas assessed. Overall, results compare favorably to reports from photon radiation treatment.

In addition, about 30% of patients had hormone deficits, but that compares with 50% to 70% of patients treated with photons.

Finally, although there was a statistically significant hearing loss found at 1 year at frequencies of 3,000 Hz and higher, these rates are still improved compared with the use of intensity–modulated radiation therapy and photon therapy reported in the literature, according to Yock.

For more information:

Yock TI. #CRA9507. Presented at: the 2010 ASCO Annual Meeting; June 4-8; Chicago.

Yippee - Pediatric Proton Featured on CBS News!

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

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)

New Year - New Proton Centers

It was announced this week that Oklahoma City Proton has begun to treat pediatric cancer patients! This is great and offers families in the midwest an attractive alternative. This center has some unique features with pediatric couches that are used. In speaking with a pediatric radiation oncologist this week there, I was informed the paraspinal pediatric patients have now been successfully treated in the prone position where the body is treated lying face down. It is opposed to the supine position which is face up. The good news is that the prone position provides better airways for the anethesia doctors during sedation with younger children.

Numbers are staring to get updated from the various proton centers around the world.
See:

http://ptcog.web.psi.ch/ptcentres.html

As of right now in the U.S. we have the following reported:

Loma Linda founded 1990 treated 13,500 as of 12/08
Florida PTI founded 2006 treated 1,847 as of 12/09
MRPI founded 2004 treated 632 as of 12/08
MGH Boston founded 2001 treated 3,515 as of 10/08
MDA Houston founded 2006 treated 1,700 as of 12/09

I keep hoping these centers will report pediatric cases treated. Right now it seems to be everyone's best kept secret.

There will be lots happening in the proton world this year, we have Hampton coming up by August 2010. Philadelphia is getting itself off the ground. ProCure has several irons in the fire with new proton centers. It looks like Chicago will be there next center opening at the first of next year. Stay tuned!