Getting back to the little things took a team who could do big things.
When Pete arrived at Northwestern Medicine Chicago Proton Center, he had been through 35 brain surgeries over the course of his 41 years. Most recently, for a rare brain tumor, known as a chordoma, that had been growing for as long as a decade.
Since he was two weeks old, Pete has lived with hydrocephalus, a condition that involves the build-up of pressure around the brain and spinal cord. Most days, he lives what he describes as a pretty normal life with the help of a shunt system to divert the fluid that otherwise creates pressure. But the fluid in the shunt can fill, causing Pete headaches. When his tumor first began to create pain, this is what he assumed it was.
So, in May 2014, Pete went to the hospital for what he thought would be a routine hydrocephalus shunt replacement. Instead, an MRI revealed a tumor. Though noncancerous, the size and location meant it would need to be removed.
Due to the nature and the location of brain tumors like Pete’s, proton therapy plays a vital role in the treatment of chordomas, and moreover, in preventing their recurrence.
“This was a mass in an area that is really tough to get to surgically and it is right in a very critical area at the front of the brainstem,” William F. Hartsell, MD, medical director of Northwestern Medicine Proton Center, explained. “When you do surgery on this area, it’s not possible to take out all the tumor.”
Nor is it possible to take out additional tissue surrounding the area to ensure the cells are all gone – the nearby nerves and major blood vessels are just too critical. But chordomas are unusual. In addition to being rare and requiring specialized treatment, they require significant follow-up. “Without additional treatment after surgery, chordomas will come back and cause problems,” Dr. Hartsell said.
Typically additional treatment after tumor surgery means high doses of radiation to the area. But again: location matters. Critical structures like the brainstem, spinal cord, optic chiasm and temporal lobes make chordomas very tough to treat with an appropriately high dose.
Which is where proton beam therapy comes in.
“The big advantage of proton beams is that the protons stop at a well-defined distance,” Dr. Hartsell said. “We can cover the area that we need to treat and give less treatment to other areas close by, meaning the brain tissue, especially the brainstem and spinal cord in the area.”
“Pete saw Dr. Gondi here,” Dr. Hartsell continued, referring to Vinai Gondi, MD, the primary radiation oncologist on Pete’s care team. “He came up with a treatment plan to give a very high dose to the area where the tumor was originally and to where there was some concern about residual tumor.”
After suffering a stroke following surgery that would inhibit the use of his right side, Pete required rehabilitation in Chicago, where access to a proton center in the state in which he lives was fortuitous to say the least. There are 17 proton centers in the country, and, of that limited number, even fewer treat chordomas. The rare type of tumor requires a multidisciplinary team featuring neurosurgeons, a neuro-radiologist, a neuro-oncologist, and a neuro-radiation oncologist, all of whom need to have expertise in managing such complex base-of-skull tumors.
“We develop a special expertise at being able to treat these tumors,” Dr. Hartsell said. “What we have here are multiple different ways of doing the treatment, and we can treat people either using what’s called a uniform scan beam, which allows us to give a sharper edge to the treatment, but also pencil beam scanning, which allows us to shape the beam better. And we use a combination of those two to get the most dose to the tumor and the least dose to the normal tissue.”
Pete’s experiences with brain surgery have had another profound if unexpected affect on Pete’s life. His hydrocephalus prevented him from playing contact sports as a youth and led him to try golf. He first started playing when he was nine, as a hobby more than anything. But golf very quickly became more than an afterschool activity. It was, and is, a passion.
“I just love it,” Pete explained. “Being out on the course, with the camaraderie of friends and family."
Once Pete learned that the tumor was not cancerous, and once it was removed, his focus was on building strength on his right side and as a result, getting back to normal.
“My biggest concern was being able to get back to what I used to do on a daily basis,” Pete said. That meant golf. “It has not been easy, but I keep trying and trying and trying. I love it so much, and I really wanted to get back at it so I kept pushing myself.”