Cancer is one of the scariest words in medicine. Decades ago the diagnosis seemed like a death sentence. Many doctors didn’t even tell the patient because they didn’t want to deliver such bad news.
Today, cancer is still not good news, but there are effective treatments for many types of cancer. Exciting new advances are under development.
In the old days patients were dependent on the knowledge and skill of the cancer doctor who treated them. Today, the Internet has opened the door to the latest breakthroughs and centers for excellence.
Tom’s experience offers a good example. He was diagnosed with a life-threatening blood cancer called multiple myeloma in 1991. The expected survival at that time was about three years. Tom got excellent care at a respected cancer center. Initially he did well after a bone marrow transplant. As time went on, though, he wasn’t content simply to follow doctors’ orders.
Instead of accepting the standard regimen of the day, Tom went online and searched for promising new multiple myeloma treatments. He learned about a clinical trial with thalidomide. Although this compound was vilified as the agent responsible for horrific birth defects, cancer doctors were beginning to experiment with thalidomide’s ability to control myeloma.
Tom ended up at the Myeloma Institute for Research and Therapy at the University of Arkansas. While there, he got the most advanced treatment available for his cancer.
Tom died last year, more than fifteen years after his original diagnosis. During that time he wrote several books and a research paper called “e-patients: how they can help us heal health care.”
Tom served as a role model for what he called e-patients (individuals who are equipped, enabled, empowered and engaged in their health care decisions). He envisioned health care as an equal partnership between e-patients and the health professionals who support them.
The Internet has made this approach possible. It has revolutionized access to information about new treatments. Patients gain support and knowledge from online communities. One of the best is ACOR (Association of Cancer Online Resources at www.acor.org). This Web site provides email lists in which cancer patients offer each other support and information, including valuable updates about clinical trials.
Many Web sites post information on clinical trials for cancer. They include: www.cancer.gov/clinicaltrials, with links to ongoing clinical trials and National Cancer Institute fact sheets; www.clinicaltrials.gov/, which offers information on government and privately funded clinical trials; www.cancertrialshelp.org/, covering trials through ten of the nation’s federally funded cancer Cooperative Groups, as well as cancer centers, academic medical centers, and patient advocacy groups; and www.cancer411.org/clinicaltrials/index.asp, offering a directory of clinical trials by cancer type. Basic information on clinical trials is available at FDA’s Clinical Trials page (www.fda.gov/oashi/clinicaltrials).
Becoming an e-patient increases the likelihood that a person will be able to find the resources and support that she needs. The Internet is changing the nature of health care for cancer and other serious conditions.