5 ( 6) ways to be your own advocate
Being diagnosed with breast cancer can be devastating for patients and their loved ones. But doctors with University Health Shreveport and the Feist-Weiller Cancer Center say that patients can be their own advocates, rather than victims to the disease.
“Most breast cancer diagnoses are simple and treatments are standard,” said Dr. Prakash Peddi, an assistant professor at LSU Health Shreveport and an oncologist at the Feist-Weiller Cancer Center.
Peddi said patients can empower themselves following a diagnosis by doing these four things:
1. Find a trustworthy doctor
Peddi said the hospital where a patient first receives a diagnosis will refer that patient to a surgeon. He said that most hospitals will help most patients follow a pre-set path following a diagnosis. Some individuals are more comfortable seeking out their own doctor, but Peddi cautions patients against believing everything they read on the Internet or sites like Vitals.com or healthgrades.com.
“Some veteran doctors never get published in reviews or might have less Internet buzz because they have a more traditional practice,” Peddi said.
The doctor advises those patients seeking their own doctors to ask around the community to discover which doctors are well-respected breast cancer specialists or to think about their family or friends who have been impacted by breast cancer for other recommendations.
2. Seek out a second opinion
Patients sometimes will seek a second opinion when diagnosed at a very young age, who have a complex family history involving cancer, or who have tried multiple standard treatment options without success. Breastcancer.org, a non-profit organization offering dozens of online resources, suggests that patients search the websites of major cancer centers and call information centers such as SHARE Cancer Support (1-866-891-2392), the National Cancer Institute (1-800-4-CANCER) or the American Cancer Society (1-800-ACS-2345).
The National Cancer Center Institute, a branch of the National Institutes of Health, has established 68 centers throughout the country dedicated to the research and treatment of cancers. Patients who want to avoid an in-person doctor visit can also seek a second opinion from medical centers that offer online evaluations, such as the Cleveland Clinic, John Hopkins, or Partners Health Care.
Patients can also refer to theNational Comprehensive Cancer Network (NCCN) Treatment Guidelines and theNational Cancer Institute’s (NCI) PDQ® Cancer Treatment Summaries available online at breastcancer.org.
3. Read and stay current on the latest treatment options and technologies
Many patients can feel overwhelmed by the abundance of information about breast cancer on the Internet and question which websites they can trust. The following websites highly recommended by doctors provide accurate and up-to-date information for patients with breast cancer:
•National Comprehensive Cancer Network: www.nccn.org/patients/
•American Society of Clinical Oncology, Conquer Cancer Foundation: http://www.cancer.net
•American Cancer society: http://www.cancer.org
•Cancer Counseling and support: http://www.cancercare.org
•National Coalition for Cancer Survivorship: http://www.cancervadvocacy.org
•Clinical Trials help: http://www.cancertrialshelp.org
•Cancer Survivors Network: http://www.friend4life.org
•Cancer Hope Networks: http://www.cancerhopenetwork.org
•National Comprehensive Cancer Network: http://www.nccn.org/patients/
•Susan G Komen foundation: http://www.komen.org
•MD Anderson Cancer Center Patient information: http://www.mdanderson.org/patient-and-cancer-information/index.html
4. Work with a team that will specifically tailor treatment to patients
Peddi said research without consulting a doctor often results in patients having misconceptions about how they should be treated.
“People have to know that the Internet might not hold answers to their questions. They need to work with real physicians and real doctors,” said Peddi. “There is a lot of personalized management in the increasingly complicated world of oncology. It is hard for a patient to grab by herself an accurate understanding of her situation.”
University Health Shreveport and the Feist-Weiller Cancer Center recommend working with a multi-disciplinary team of professionals that could include surgeons, medical oncologists, radiation oncologists, and pathologists for a complete understanding of a patient’s condition. Some hospitals also offer access to social workers who can help patients learn to cope with their changing health.
5. Have hope.
Event Manager Rachel Stern says her favorite part of her work with the American Cancer Society is seeing the empowerment that occurs in patients with breast cancer when they connect with resources and other women.
“This disease is terrible, it really beats you down,” said Stern. “Hope is so important because it gives them something positive to hold onto and support as they battle this disease.”
Emily Knecht, a volunteer with the American Cancer Society, has seen patients become empowered by meeting and connecting with other survivors.
“Connection and knowing they’re not alone fills them with strength so they can continue their own individual journeys while finishing the fight within a collective,” Knecht said.