Holly’s Proton Therapy Solution
Like so many patients who have cancer, Holly faced radiation treatment after she had surgery to remove a tumor in her brain. After discussing treatment options with her local care team, Holly sought a second opinion, which led to an Internet search, where she found the Northwestern Medicine Chicago Proton Center – and a treatment tailored to her.
On the evening of August 10, 2015, Holly suffered an unexpected seizure at her home in Long Grove, Iowa, about three hours southwest of Chicago. An ambulance took her to a local hospital where she had an MRI and CT scan in the early hours of the following morning. Holly learned she possibly had a brain tumor and she and her husband then went to an academic medical center about an hour away. The team there confirmed she had an oligodendroglioma, which was a stage 2 brain tumor.
Holly had surgery one month to the day from her seizure. After the procedure, her care team explained that while they removed almost all the tumor, the edges had spread out in tentacles that were impossible to remove surgically. Holly went home to recover and three weeks later she met with an oncologist and radiologist to discuss next steps for treating what remained of her tumor. It was at this point that she learned her care team recommended radiation treatment that could affect healthy tissue as well as the tumor.
Holly and her husband also decided to look into proton therapy on the recommendation of a friend, who had read about the treatment. They discovered the Northwestern Medicine Chicago Proton Center, sent over copies of her medical records and in the first week of October, were driving to Warrenville, Illinois for their first consultation.
“I just went with my gut feeling,” Holly explained.
A Helpful Welcome
Holly met with Vinai Gondi, MD, radiation oncologist with Radiation Oncology Consultants and medical director of clinical research at the Chicago Proton Center, to learn whether proton therapy would be appropriate for her type of tumor. Then followed a meeting with Sean Grimm, MD, medical oncologist with Northwestern Medicine Regional Medical Group, at the Northwestern Medicine Cancer Center Warrenville – located adjacent to the Chicago Proton Center – who spoke with her about the specifics of a treatment plan.
“Dr. Gondi and Dr. Grimm were great. They explained everything, drew pictures, showed us different ideas about what they were thinking,” Holly said. “They would ask if I had any questions and they would ask the person that was with me, which was normally my husband, if he had any questions. It was really nice, because you know they’re on a tight schedule with so many patients to see.”
Proton therapy uses heavy, positively charged atomic particles (protons) instead of the standard X-rays used in conventional radiation therapy. Protons can be calibrated to release the bulk of their energy at certain depths inside the body and this level of precision helps specialists place more radiation exactly at the spot of the tumor. The goal is fewer side effects and less damage to the surrounding healthy tissue.
“We work together to determine the best option for our patients, and given how complex brain tumors can be, it’s very beneficial for them to be evaluated in a multidisciplinary fashion, where their case is discussed amongst multiple specialties,” Dr. Grimm told Holly’s local paper, The North Scott Press.
“We usually come together once a week as a tumor board and discuss our cases,” added Dr. Gondi, again in The North Scott Press. “We learn from each other, but also to come to consensus on what’s the best way to treat a patient like Holly.”
“I absolutely loved the physicians and I liked that they have a group of physicians that take your case,” said Holly. “They were very patient, and very nice. Even the nurses and assistants – they had smiles on their faces and were very genuine. You could tell it wasn’t just a job for them.” The team at the Chicago Proton Center recommended a combination of both radiation therapy and chemotherapy. The radiation component would include proton therapy, which would limit the amount of normal brain tissue outside the tumor that would receive even low doses of radiation.
Over the month of October 2015, starting with her consultation that first week, Holly visited the Proton Center for additional MRIs and CT scans, which would help the physicians gather the technical expertise required to treat the tentacles. During these visits, she was also fitted for a special mask that would keep her face immobile during each therapy session.
“You have to learn to be kind of calm,” Holly said of the fitting. The Chicago Proton Center staff lets patients listen to whatever they want during the sessions and Holly first chose “Back in Black” by AC/DC. “They play that song at University of Iowa football games when the players come out and I don’t know why, but it got me going, like, I’m going to fight this!”
On October 29, 2015, Holly began a course of 30 radiation sessions over six weeks, each lasting between 20 and 35 minutes. Holly believes she was lucky – she never felt sick or in real pain, and she even got used to sitting super still – eventually shifting to country music that was a bit more mellow to zone out to.While Holly’s final proton therapy treatment was on December 10 – four months to the day since her seizure – she would continue with the chemo through the summer and will return to the Chicago Proton Center every three months for scans to check the size and status of her tumor.
“It’s important in our brain tumor program to understand that this is not a one time deal. This is a journey we’re on and we will with work with Holly throughout,” Dr. Gondi said in the North Scott Press. “Whenever this tumor comes back down the road, we have a number of clinical trials, a tremendous amount of expertise and all treatment options are on the table in the future as well.”
Until then, Holly is in survivorship mode, which she has embraced whole-heartedly – including becoming a vocal advocate for proton therapy by sharing her story.
“I thought I was going to die, but Northwestern Medicine and proton therapy were my miracle,” Holly told The North Scott Press. “Now, my sole hope is to help others. This is my new passion.”