When someone is diagnosed with a deadly disease like pancreatic cancer (70 percent die within one year) or pulmonary fibrosis (a five-year life expectancy), they and their families may feel overwhelmed and not know where to turn.
The Rolfe Pancreatic Cancer Foundation has provided a list of steps to help patients and their loved ones manage the challenging journey ahead.
1. Contact an organization that specializes in the disease. Nonprofits like the Midwest-based Rolfe Pancreatic Cancer Foundation, www.rolfefoundation.org, and Pulmonary Fibrosis Foundation, www.pulmonaryfibrosis.org, work to connect patients with physicians and other specialists, introduce support groups, and arm patients and their loved ones with information they likely aren’t aware of.
2. Learn the facts. Organizations like the Rolfe Foundation compile detailed information on the disease, treatment options, questions to ask a doctor, ways to best maintain your health and more.
3. Establish a support system. The personal concerns and challenges patients endure are considerable, but can be eased with help from friends, families and support groups. The Rolfe Foundation offers support group recommendations — along with personal advice from patient advocates who have or are battling the disease — for invaluable insight about treatment, health, nutrition, finances and recovery.
4. Build your medical care team. Organizations like the Rolfe Foundation and PFF can recommended medical centers, physicians, dieticians and other crucial contacts. Additionally, these organizations’ close relationships with medical contacts may offer opportunities to make appointments and receive consultation and treatment more efficiently than if the patient reached out on their own.
5. Explore second opinions. Seeking a second opinion for a diagnosis is a practice many reputable doctors encourage, and foundations like those above offer guidance, resources and personal connections to help patients explore additional consultation and potential treatment.
6. Consider clinical trials. Clinical trials are important research studies that may offer patients new, sometimes radical, treatment options they may want to consider. By working with a specialist organization like the Rolfe Foundation, patients may receive guidance to find a trial, recommendations and more direct connections to contacts at the trial(s).