Each year, more than 1.7 million people in the United States hear three dreaded words: You have cancer. As common as cancer is, no one expects cancer to happen to them.
We understand, as patients and as caregivers, how frightening a cancer diagnosis can be: how it can upend your life, leaving you feeling like you’re barely treading water. And we know that making tough decisions when your life depends on it is not easy.
From our research at Harvard Business School of how people navigate their cancer treatment (and what they wish they had known sooner), we have developed four steps that all people with cancer can take to give them the best chance at beating the disease.
Build the right team
The single most important thing you can do is to see an oncologist who specializes in your particular type of cancer and has experience treating a lot of other patients like you. That’s because when it comes to treating cancer, expertise can mean the difference between life and death. Patients with multiple myeloma, an incurable blood cancer, who were treated at hospitals that saw a large number of myeloma patients were less likely to die than patients who were treated elsewhere, research has found.
You’re most likely to find an expert like this at any of the 70 National Cancer Institute (NCI)-designated Comprehensive Cancer Centers throughout the United States, which are recognized for their excellent care and research contributions. If you are not able to go an NCI-designated Comprehensive Cancer Center, contact a disease foundation or other non-profit focused on your cancer to find a specialist near you.
Get the right tests
In addition to the usual tests used to diagnose cancer, ask your doctor about having your tumor genome comprehensively sequenced.
Tumor genome sequencing scans the DNA of your cancer cells for cancer-causing genetic mutations and other molecular abnormalities. Knowledge of these changes can be used to match some patients to the most effective treatment available, whether it’s an existing drug or one under study in a clinical trial.
While comprehensive genomic profiling is not yet routine, it is covered for all Medicare patients with advanced solid tumors. It is also increasingly offered at academic medical centers — another reason why going to the best center is so important — and is frequently part of clinical trial protocols. If you are not able to have your genome sequenced, ask your doctor if you can “bank” your tissue to have it sequenced at a later date.
Get the right treatment
Most cancers, at least when they’re first diagnosed, have a standard of care: a treatment regimen that is widely accepted as the best approach to fighting the disease. Not getting the standard of care can have deadly consequences. One study found that lung cancer patients who didn’t receive this treatment lived about six times shorter than patients who did. The standard of care for your cancer can be found by looking at National Comprehensive Cancer Network guidelines, which are based on the most up-to-date scientific evidence.
For many people, treatment through a clinical trial may be the best treatment option. This is especially true for patients with cancers so rare that a standard of care has not yet been established and patients with advanced cancer who have exhausted treatment options. Make sure to ask your doctor about clinical trials that may be right for you.
Share your data
Many patients opt to share their health data, including sequencing data and other health information, with the research community. Sometimes pooling together and analyzing even a small number of patients’ data can generate new discoveries that could impact your care and improve lives of future generations. Patient registries that allow patients to directly share their data are becoming increasingly common. Contact a research organization focused on your cancer or ask for your oncologist for more information.
Despite the importance of these steps, our research shows that many patients aren’t taking them. We’ve teamed up with representatives from five cancer organizations — LUNGevity, the Metastatic Breast Cancer Alliance, the Multiple Myeloma Research Foundation, the Pancreatic Cancer Action Network, and the Prostate Cancer Foundation — to launch the Right Track, a new cross-cancer initiative to inform patients of steps they can take from the moment of diagnosis. It is our hope that educating patients on how to best navigate their cancer journey will help patients live better, longer lives.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.