Frustrated by few options offered by cancer care specialists, families initiate online research, discover Proton Therapy.
When Giles White was diagnosed with prostate cancer in the fall of 2011, he turned to his oncologist for treatment options. One option was offered: surgery. Frustrated by the doctor’s limited recommendations, Giles and his wife, Barbara, began a journey of cancer treatment research and discovery.
“I couldn’t believe we only had one option,” said Barbara. “I did the research and when I uncovered all the complications that could come from surgery, I began looking at other treatments.”
One alternative, Barbara discovered, was proton therapy. “I was intrigued by what I was reading,” said Barbara. “The minimal side effects and targeted treatment motivated us to learn more.” Barbara did most of their research online, primarily on third-party websites of organizations like the American Cancer Society. The couple also sought counsel from a close friend who had undergone proton therapy for prostate cancer.
Ultimately, the couple decided proton therapy was the best option for Giles and pursued treatment in Philadelphia at the Roberts Proton Therapy Center, part of the University of Pennsylvania Health System. “The possible side effects of surgery were just not something we felt comfortable with,” said Barbara. “Discovering and choosing proton therapy was dependent on our refusal to accept surgery as our only option.”
Bob Marckini has found that the White’s experience is not unique. Marckini, who underwent proton therapy for prostate cancer, runs an online patient forum titled the “Brotherhood of the Balloon.” He is also the author of the best selling book, You Can Beat Prostate Cancer – And You Don’t Need Surgery To Do It. Often prostate cancer patients are given two or three treatment options, and rarely is proton therapy mentioned, he said.
“In the 12 years I’ve been leading this group — and we have more than 6,000 members in 33 countries — I can honestly say that I have never heard of a single case of an urologist recommending proton therapy to the patient,” said Marckini. “And in very rare cases, a primary care physician will suggest to a patient that he take a look at proton therapy.”
While some cancer patients embark on their own research, family members often play a crucial role in researching treatments. Marckini’s online forum frequently receives inquiries from fathers, daughters and mothers looking for more information about patient experiences with protons.
For the Whites, it was Barbara who led the charge to find an alternative option for Giles. “My wife was my guardian angel,” said Giles. “She spent hours in front of the computer researching. She’s the person who helped me find out about the options, which ultimately led me to undergo proton therapy.”
Once treatment is complete, many proton therapy patients serve as advocates and resources for others seeking information on the treatment. Like Marckini, Giles White continues to support the prostate cancer community by leading a support group in Wilmington, Delaware. “I feel cancer made me a better person,” said Giles. “I feel I can help others.” His most important piece of wisdom for fellow cancer patients is that each journey is different. “I tell people to do their homework,” Giles said. “Choosing a cancer treatment is an individual choice; you need to decide what’s best for you.”