Part 2 – In the search for the best cancer therapy option, “knowledge is power”

With chemotherapy appearing to work well, last summer, Becca and Nick had mentally prepared for surgical removal of the remaining tumor on their little girl’s spine.

But the medical team at St. Luke’s Medical Center in the Philippines concluded surgery would be too risky for 3-year-old Georgia. The physicians presented Becca and Nick with several radiation treatment options from which to choose.

“All any parent wants is to make the right decision for their child,” Becca observed on her blog, The Helping Georgia Fund. “We don’t ever want to look back and have any regrets about our decisions, and so the only way we can do that is to find out as much as possible and keep asking questions. We know we can’t just take the first opinion that we are given. We have to ask for a second and third opinion. We have to get this right for little G.”

That August weekend, Becca wrote: “I spent all day yesterday on the computer doing research and Nick and I have just sent a long e-mail to our team of doctors with lots of questions and asking them for a case summary that we can send to international experts.

“…I have read a lot of good things and even listened on-line to a radio program about MD Anderson Cancer Center in Houston, Texas, USA. They offer Proton Therapy for pediatric patients with spinal Ewing’s sarcoma. I was able to read a survivor’s story about a little boy with Ewing’s sarcoma and everything in my gut tells me this is a great place for treatment.

“I have also read about the Rinecker Proton Therapy Center in Munich, Germany, which has been established since 2009. This center was the first to be set up in Europe that is ‘exclusively for the treatment of patients and is not a modified research facility.’ Both centers look amazing in what they have to offer.

“I have also been researching SRS ‘CyberKnife’ and where the best place to go for this is. It concerns us that St. Luke’s has never done this radiosurgery on a pediatric patient in the spinal area. If there are places out there that have done this and have lots of experience, surely that is where we should take Georgia?

“BUT then we have the risk of travelling with her whilst on chemo and if we can find somewhere here that has done SRS should we expose her to that risk?

“…I have read about the University of Pittsburg, Pennsylvania and they claim that ‘UPMC has one of the largest experiences in the world in treating spinal tumors with radiosurgery.’ They use ‘CyberKnife,’ which is an image-guided stereotactic radiosurgery (SRS.) I read that ‘the CyberKnife aims each beam independently, without a fixed isocenter.’ If the target moves, the process detects the change and corrects the beam pointing in near real-time.

“I like the sound of that, as even whilst sedated for P53 [gene therapy], G has been known to move. That would be lethal with radiation. So of course, this is one of the many questions that I have been asking our doctors: Is the technology for SRS the same wherever you have it done?

“I also read about the Mount Sinai Medical Center hospital in New York using the ‘Novalis Shaped Beam Surgery system’ on spinal cancer. They state that ‘Novalis is the most advanced Stereotactic Radiosurgery (SRS) technology available to treat cancer tumors in the spine.’ Again is this the same technology? Is this what every hospital uses for SRS?

“…Of course we also need to think about raising the funds. SRS is expensive but is not the same level of expense as Proton Therapy as this is done over a longer period of time.”