ctnow.com/health/breast-cancer/sns-health-breast-cancer-advocate,0,4966303.story

CTnow

How to be your own advocate

There are a myriad of ways to get involved in the fight

Marcia Frellick

HealthKey contributor

October 12, 2009

Advertisement

Being your own advocate starts with making sure you do monthly breast exams and get your mammogram on time. If you do get a diagnosis of breast cancer, you need to make sure you are actively involved in your care and are educated in the latest findings and options. Some will go the next step toward helping others and join the worldwide fight against the disease. Whatever your comfort level, there is no shortage of opportunity. Here are some things to consider:

Advocating for Your Own Care

Clinical trials: The National Cancer Institute has a Web page, cancer.gov/clinicaltrials, devoted to the trials where you can search a database of the ones seeking participants. Being a participant may give you access to new drugs and interventions before they are widely available. You can also call the Institute at 800-4CANCER for information on clinical trials. Be sure to discuss this option with your doctors.

Record your appointments: You likely will be bombarded with information in appointments with your doctor. The National Coalition of Cancer Survivorship suggests asking the doctor for permission to record sessions so you don't miss anything. Also, take good notes or ask a friend to come along and take notes for you while you focus on the questions.

Speak up: Make sure your questions are answered and your concerns are heard. Writing out questions for the doctor may help.

Advocating for the Cause

Run/walk: You can get involved as a runner, walker or volunteer in multistate events such as the Race for the Cure, sponsored by the Susan G. Komen for the Cure, or Avon Walk for Breast Cancer. You can find a race by location or month at komen.org or avonwalk.org. Proceeds go toward education and research.

Push for change: The National Breast Cancer Coalition and its sister organization, the National Breast Cancer Coalition Fund offer an intensive program to train advocates in the science and political savvy they need to effect change on Capitol Hill and elsewhere. For information, see stopbreastcancer.org or call 800-622-2838.

Tell your story: One of the most powerful forms of advocacy is telling your story and views to your legislators.

Counsel peers: If you're a survivor or one year out of treatment, you can help people who call a 24-hour helpline who want to talk to someone with similar experiences. On-Call Peer Counselors is staffed through YourShoes, part of Breast Cancer Network of Strength. Learn more about training and other opportunities at networkofstrength.org.