Dave deBronkart visited his doctor’s office in 2006 with nagging shoulder pain. A subsequent X-ray showed that his shoulder would heal, but incidentally also revealed a shadow on his lung, turning what deBronkart expected to be a routine visit into diagnosis of a rare form of kidney cancer.
Further tests uncovered five tumors that had metastasized to both of his lungs, as well as to some of his bones and tongue.
DeBronkart went online looking for answers. He learned the outlook was bleak — he had about six months to live. He pictured his mother’s face at his funeral and told his daughter and her boyfriend not to get married prematurely just so he could attend the wedding before he died.
Then, patients on an online forum told deBronkart about a relatively unknown treatment for kidney cancer called high-dose interleukin. Most hospitals didn’t offer the therapy, which does nothing for most patients and carries serious side effects, but virtually cures a very small number of cancer victims.
Patients may not know about alternative treatments and clinical trials, or be able to afford them if their insurance doesn’t cover the procedures. But the more informed patients are, the better, according to deBronkart.
He spoke to his doctor at Boston’s Beth Israel Deaconess Medical Center about the interleukin therapy and six months later, deBronkart was healthy. Today, he remains cancer-free and speaks internationally as “ e-patient Dave,” advocating for “participatory medicine,” or better patient involvement in health care.
DeBronkart, of Nashua, N.H., visited Maine this week, speaking Wednesday at the annual meeting of Maine Quality Counts, a regional collaborative working to improve health care in Maine.
“Most doctors today and most patients grew up in a world where all useful information came from doctors,” he said Thursday. “The reality today is that it’s possible for ordinary people to get that information.”
DeBronkart’s doctor “prescribed” that he visit an Internet patient community called ACOR.org, and deBronkart, who formerly worked in high tech, went on to foster a support community online. He encourages patients to connect and learn from one another and avoid acting as passive participants in their own health.
“One of the easiest ways to get involved is ask your doctors for a copy of your records and look for mistakes,” he said.
Almost everyone’s record contains an omission or an error, big or small, deBronkart said. The best time to request records is before a health crisis, he said.
His other practical suggestions: Prepare for your doctor’s visit and write down topics you want to address; ask for an explanation if you don’t understand your doctor’s descriptions or instructions; be on the alert at the hospital during shift changes, when errors and oversights are more likely to occur; and ask your health care team to meet at your bedside during the handoff of your medical information.
“It really is up to you to speak up,” he said.
To watch a video of deBronkart spreaking at a TEDx conference in The Netherlands, visit ted.com/talks/dave_debronkart_meet_e_patient_dave.html.
Survivor is too tame….I am a VICTOR over cancer….Throat, lymph nodes, prostate, etc..
Unfortunately they hate it when you speak up and when you question their judgment. Things go sour real quick.
Time to make a quick exit and get another doctor who will listen to you!
Screw em, find another doctor.
My advise is look at xrays, get copies, make your doctor give you written copies of everything. You don’t need to be a trained pro to compare exrays and read records.
You also need to have any tumors removed sent to an independant lab and tested for speed in which the tumor grows. I will be happy to share the name and phone number of a great lab with you, just ask.
Chemo does NOT “see” slow growing cancers just fast ones and will do nothing to help rid you of it if yours is slow other than make you sicker than you need to be and cost you money that you might not need to spend.
DO NOT allow yourself to be frightened or rushed into any treatments until you have 2 or 3 opinions, done and a lot of research. Also be aware that most of the hospitals within 100 + miles of Bangor are under control of the same Bangor hospital and and you will not get a real 2nd opinion, right or wrong it will be the same as the Bangor Hospitals.
My advice. Always become involved in your medical care. Always. Doctors are human too and much of medicine and treatments are judgement calls. Read about your illness, learn about your diseases vectors and treatment courses. Understand the side effects of your drugs. Get advice from more than one source. Take a trip to Portland or Mass General. It will be worth the trip. As another poster wrote, Do not be rushed!!!
As a survivor, myself, I agree w/Mr. deBronkart. Even the best of physicians is, after all, a human being and as such, capable of making errors at any point along the cancer journey. I’ve said many times, “One has to be his/her own doctor today.” I would add one thing (from experience): do not ever allow a hospitalized loved one to be alone. I had the best doctors possible…and then the hospital staff dropped the ball and almost caused my death.