Hope For Children With Brain Tumors

(CBS)  Addison Keegan is barely 2 -- and already a survivor. She had emergency surgery to remove a brain tumor four months ago. Now, her parents are trying a promising treatment in hopes her tumor doesn't grow back.

"Just watching her and playing with her every day knowing we're doing what we can," said Kyle Keegan, Addison's father.

Addison was healthy, developing normally, until violent flu symptoms lead to a devastating diagnosis in February: a brain tumor, called an Ependymoma, was lodged in her brain stem. Neurosurgeons removed as much as they could and luckily, it was benign.

To kill residual tumor cells, instead of traditional radiation, Addison is undergoing "proton beam therapy," reports CNN Medical Correspondent Dr. Sanjay Gupta, a CBS News contributor.

"This is going to be the standard of the future for pediatric brain tumors," said Dr. Robert Lustig, the director of radiation oncology at the University of Pennsylvania Hosptial.

Normal radiation goes through the tumor into healthy tissue and may cause collateral damage to vision, hearing, growth and learning. Proton beam therapy delivers higher doses of radiation which stop just beyond the tumor and theoretically cause less damage to healthy brain tissue.

"We were pretty confident in our decision this was going to minimize the side effects - and that was one of our main concerns," said Kelly Keegan, Addison's mother.

The room where Addison gets her treatment has an area called the gantry. It spins 360 degrees so protons can be delivered from multiple different angles. Those protons come from the cyclotron and come through the snout. The goal is to position those beams to within one millimeter of her tumor.

It could make a big difference in Addison's brain.

"I anticipate for this little girl and many others - the less we radiate of normal brain, the better off we're going to be," said Dr. Peter Phillips with the Children's Hospital of Philadelphia.

Proton therapy has been used on adults for years. This center is the first dedicated to children. It is expensive, averaging about $100,000 - three times more than traditional radiation. It may take a decade to gather conclusive evidence it works.

"It's better for medicine if we study it over the long run - particularly with such an expensive form of technology," said Dr. Edward Halperin, the dean of the School of Medicine at the University of Louisville.

At the end of 30 treatments, Addison is bright and focused, showing no side effects.

"She's running around, just like she was - this is as good as I imagined it would be," said Kelly Keegan.

Right now, Addison's brain scan looks good. There's no residual tumor. She'll have the scans every three months, and gradually every six months and then annually to make sure her tumor hasn't returned.

The treatment is expensive - and insurance companies pay for it on a case-by-case basis. Proton therapies are covered by Medicare and Medicaid. Proton centers usually work with families to work out insurance strategies.

[tiyock]

How wonderful that CBS embarked on a story of proton radiotherapy and its utility in children. So often the press on proton radiotherapy focuses on patient populations where the benefits of it are less obvious. Protons are likely to make the biggest difference in minimizing side effects of treatment in the pediatric population and we are actively generating the clinical outcomes data that support that assertion. (In fact, I am at ASCO now about to present the clinical outcome data on our first prospective trial in children with medulloblastoma.)



I appreciated the input from my colleagues and Susan Ralston as well as the other parents and interested parties who have weighed in and will try not to reiterated what has already been deftly said.



While the story may have been a bit misleading by not really acknowledging the pediatric proton programs that have been active for many years already, CHOP must be commended for funding one of the gantries at this UPENN facility and dedicating it to the treatment of pediatric patients. However, each of the other open facilities running at full capacity in the United States treat between 30-115 pediatric patients per year, and do so with caring and compassion. While none of the other facilities have dedicated a physical structure, ie a gantry to the treatment of pediatrics, the other facilities and my own have proven that we are, in fact, dedicated to treating children.



We are a small community of doctors that treat kids with protons and are in the process of forming a collaboration to develop the pediatric proton database registry (unidentified of course) so that we may learn more from the experience and justify its use in this truly important population. In fact, we met less than one month ago for this very purpose.



I am the Director of Pediatric Radiation Oncology at Massachusetts General Hospital (MGH), which has the largest and oldest pediatric proton experience (over 1000 children treated, with the first child treated by Dr. Herman Suit in 1974. Prior to the new MGH Proton Facility opening in 2001, MGH treated patients at the Harvard University Cyclotron. Between 1974 and 2001 366 pediatric patients were treated. Since opening the Francis H Burr Proton Therapy center we have treated over 650 pediatric patients. We are treating approximately 115 pediatric patients per year and are looking into options to try to increase our capacity.



In the meantime I look forward to our collaboration with other proton centers to generate the necessary data to support the proof that proton radiotherapy truly is a quantum leap forward for the kids. And, I applaud Susan Ralston efforts through her foundation to get accurate proton information out to other families facing tumor diagnoses in their children to aid in their education and access to this very limited but exceptionally promising therapy.

Torunn I Yock, MD MCH
Director, Pediatric Radiation Oncology
Massachusetts General Hospital
MassGeneral Hospital for Children
http://www.massgeneralforchildren.org

[kephillips]

Has this proton therapy been tried on Pontine brain stem tumors? Or is that even a possibility?

[Susan_Ralston]

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

[noel_falvey]

My 3 year old son Fletcher was diagnosed with an Anaplastic Ependymoma in August of last year and treated with Proton soon after.
Once we looked into Proton vs Conventional, there was no choice to make for us - it had to be Proton.
But, we only found out about Proton by chance and that's just not good enough. For every Addison or Fletcher, how many are not so lucky?
Well done to CBS for highlighting Proton, raising awareness is vitally important, take it from me.

We were also lucky in that we went to MPRI in Indiana.
We arrived in Bloomington (from Spain) a barely functioning traumatized family. Somehow, thanks to the staff and the local community, we left repaired, with hope and actually had some good times.
I cannot put into words how important it was (and still is)for us to have that support network, we felt safe there and didn't want to leave.
I'm glad to see that other centres are also being set up that way, the tumour treatment is important but so is helping the family heal.
Good luck Addison and family.

[ProtonTherapyCenter]

We are pleased to see a report that shares the story of proton therapy as an excellent option for children with brain tumors. As others have noted, it is not a new therapy in our fight against adult or childhood cancer, but instead one that continues to give hope -- and results -- to patients of all ages facing cancer. It's important for parents to know that there are more options for pediatric proton therapy that may be more conveniently located or even more specialized in certain tumors. This is the story we've worked so hard to tell over the past four years at MD Anderson.

Since MD Anderson's Proton Therapy Center opened in Houston in 2006, our team has treated more than 300 children, many of them with brain tumors and many of them babies or toddlers. Studies show that the precision of proton therapy can result in fewer late effects, such as secondary malignancies and hearing loss, both important concerns when treating children with any type of radiation. A large number of our patients -- both children and adults -- experience very few, if any, side effects during and after treatment.

Results that fuel our quest to bring this option to more patients through our work and in collaboration with other proton centers that treat children to obtain the data needed to demonstrate the true benefits of proton therapy.

Let's keep this important advancement in the national dialogue.

Andrew K. Lee, MD, MPH
Medical Director, MD Anderson Proton Therapy Center

Anita Mahajan, MD
Director, Clinical Pediatric Radiation Oncology
MD Anderson Cancer Center

[ProtonTherapyCenter]

We are pleased to see a report that shares the story of proton therapy as an excellent option for children with brain tumors. As others have noted, it is not a new therapy in our fight against adult or childhood cancer, but instead one that continues to give hope ? and results ? to patients of all ages who are facing cancer. It?s important for parents to know that there are more options for pediatric proton therapy that may be more conveniently located or even more specialized in certain tumors. This is the story we?ve worked so hard to tell over the past four years at MD Anderson.

Since MD Anderson?s Proton Therapy Center opened in Houston in 2006, our team has treated more than 300 children, many of them with brain tumors and many of them babies or toddlers. Studies show that the precision of proton therapy can result in fewer late effects, such as secondary malignancies and hearing loss, both important concerns when treating children with any type of radiation. A large number of our patients ? both children and adults ? experience very few, if any, side effects during and after treatment.

Results that fuel our quest to bring this option to more patients through our work and in collaboration with other proton centers that treat children to obtain the data needed to demonstrate the true benefits of proton therapy.

Let?s keep this important advancement in the national dialogue.

Andrew K. Lee, MD, MPH
Medical Director, MD Anderson Proton Therapy Center

Anita Mahajan, MD
Director, Clinical Pediatric Radiation Oncology
MD Anderson Cancer Center

[KyleKeegan]

Being the father of Addison Keegan I feel obligated to reply to some of these comments. I definitely agree with protondad that the story was misleading in that it stated that the Penn Med/CHOP facility is the 1st dedicated to pediatrics. Because of all the reasearch that Kelly and I did prior to us heading to CHOP, we knew that Mass General, The University of Florida, ProCure, MD Anderson, MPRI and Loma Linda were all dedicated to the treatment of their pediatric patients. With that being said, I do take expection to the statement that CHOP/Penn are SIGNIFICANTLY behind when it comes to Proton treatment. I know from the experience of uprooting my family for over 6 whole weeks and leaving my daughter's life in the hands of the trained professionals at CHOP, that their facility and staff are DEFINITELY NOT behind. We know that Addison received care and state of the art treatments equal to all of the other proton facilities. I do wish that CBS would have focused more on how these treatment facilities are few and that because of that there are alot of families that have to uproot themselves and relocate so that they can receive the best treatment possible. Again, thank you to everyone at CHOP that helped us get through this very difficult time. You will always be in our hearts.

[erikmollo]

I am also very pleased to see this story about pediatric proton therapy, and the clear benefits it offers to young patients like Addison Keegan. My architectural firm was fortunate enough to have the opportunity to design this and several other proton facilities, and work directly with the clinicians and staff that are helping to expand the range of treatment choices for children. As the number of facilities continue to grow, more children will have this option available, and more data will be collected to help confirm the promise of protons. Dr. Keole notes as well that pediatric patients are special, not just in their clinical needs, but in the support and overall care they receive from the hospitals and facilities that treat them and care for their families. Thank you for helping to spread the word.

Erik Mollo-Christensen
Tsoi/Kobus & Associates Architects

[tania8]

Iam so happy that they finally found at least a treatment! I just presented a project about children's cancer and my teacher told me about this exciting news! Thank God to bless there little girl. Iam just glad to know one day I will be helping children out just thinking about it makes me happy that now there's a treatment!

[protondad]

It's amazing just how inaccurate reporting can be. You would expect the Producers that feed Ms. Couric and Dr. Gupta information would at least check their facts (especially since these are so incredibly easy to check) before giving this information to their 6.45 million viewers. I agree with all the comments above (mostly). We are currently under treatment at M.D. Anderson Cancer Center's Proton Therapy Center. We chose proton therapy for it's proven and superior benefits over conventional radiation (IMRT). Less radiation to non cancerous tissue/structures and what many NEVER discuss (especially our insurance companies) the dreaded thought of of secondary tumor's/malignancies down the road at a later age. I am more concerned about the viewers thinking that Penn/CHOP's claim to be the "first [proton center] dedicated to children". They (just recently) treat patients of every age not only children. Certainly their experience (2 when we were refereed there) in treating with proton therapy is SIGNIFICANTLY behind Mass General, M.D. Anderson, Florida and Loma Linda. I know from experience that at M.D. Anderson they give us nurses, anesthesia, therapist, social workers, dietitians, etc..that are trained specifically to provide care for pediatric PROTON patients. During our treatment there were children being treated from Texas Children's Hospital, Children's Cancer Hospital at M.D. Anderson, Cook Children's hospital and MSK. If M.D. Anderson said they were "dedicated to children" I would have the same issues as I do with this story. TRUST ME, every single member of the team here are DEDICATED to caring about and for my child. From our Doctor, Nurse, Therapist, Housekeeper and last but sometimes most important the folks in back offices that have to deal with our insurance company. But thankfully this wonderful building, staff, technology provides hope to so many patients of all ages.

[skeole]

This is a great story and the primary message should be: If you must treat a pediatric patient with protons, see if proton therapy would be better than traditional X-Ray therapy (sometimes referred to as "IMRT").

I am the Medical Director of the ProCure Proton Therapy Center in Oklahoma City and we opened in July 2009. We treated our 1st pediatric patient a few months later. Prior to this, I was on faculty at the University of Florida Proton Therapy Institute and I treated the 1st pediatric patient there in 2006, within 2 months of opening that center. These 2 centers, as the other 5 operating proton centers in the country, place a high priority on treating children (as mentioned by Len Artz and others). All 7 centers work closely with excellent children's hospitals to ensure seamless delivery of cancer care to these precious patients.

There are 3 points I'd like to make on this forum:

1. Protons for pediatric patients is a great option. It needs to be carefully studied, but more in the context of a national registry, versus a "randomized trial" (in which 50% of kids would receive protons and the other 50% would receive X-Ray therapy - the decision made by a computer-generated "coin flip").

2. 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.

3. The costs given in the CBS article are grossly inaccurate. Using Medicare/Medicaid numbers (the standard by which to make a cost comparison), protons are 35% to 50% more expensive than IMRT X-Ray therapy. While this is not a trivial difference, it is a far cry from the 300% figure quoted in the article.

Still, I commend CBS News for spending the time to inform its viewers of this wonderful treatment modality for children with cancer. My hope is that no child will ever need radiation therapy of any kind, but if they do, proton therapy is available.

Sameer Keole, MD
Medical Director, ProCure Proton Therapy Center Oklahoma City