Most of the time I don’t get angry about breast cancer. I can think of more traumatic things that could happen to me - total paralysis, rape, murder. In support groups, I’ve been amazed at how often women talk about being fortunate to have breast cancer compared to other health problems. “My brother-in-law had a stroke and can’t talk,” said one woman. “This isn’t nearly so bad.” If we accept that bodies aren’t perfect, and things can go wrong, cancer is just one more calamity.
I do get angry, livid, and enraged about misdiagnosis of breast cancer. “You’re too young to have breast cancer.” “The mammogram looks OK, so it’s not cancer.” “Breast cancer doesn’t hurt; stop being so paranoid.” When doctors spread myths about breast cancer, when they dismiss the concerns of their patients, when they don’t refer patients if the case is beyond their expertise, I am furious.
Patti Bradfield, founder of the IBC Foundation (www.eraseibc.com), gets furious too. Patti’s daughter Tina died of inflammatory breast cancer (IBC). Patti, like many affected by IBC, had never heard of it until Tina’s diagnosis, and Patti has made it her mission ever since to see that doctors and patients know about this form of breast cancer that is so frequently misdiagnosed because it often doesn’t present with a lump.
If you have read an article in your local paper or seen a television segment about IBC, there’s a good chance that Patti was in the background contacting the reporter. Her foundation has a toll free number 1-866-944-4223 and specializes in advocating for IBC causes. Now Patti is tackling the federal government.
She is using her foundation and every contact she has to encourage people to write their congress members to support HR Resolution 1300. Rep. Carolyn McCarthy of New York and Jo Ann Emerson of Missouri introduced this resolution June 24, 2008. In a press release, Rep. McCarthy said, “Since IBC behaves much differently than most breast cancers, women often misinterpret IBC symptoms and frequently delay seeking medical assistance. Additionally, there is a lack of awareness in the medical community about IBC. Many times inflammatory breast cancer is misdiagnosed as an infection or other condition. Given the aggressiveness of inflammatory breast cancer, a delay in accurate diagnosis and treatment can be especially deadly.”
I delayed going to the doctor because I didn’t know that pain and swelling could be symptoms of breast cancer. My symptoms puzzled my primary care doctor. Fortunately for me, he referred me to a surgeon who did know about IBC, but it would have been even better if he had known enough about IBC to move more quickly to schedule the appointment with the surgeon.
Rep. McCarthy resolution echoes my concerns. She says, “Increasing awareness of IBC in both the public and the medical community is an essential step in fighting this disease. The more informed women are, the better prepared they will be to discuss IBC with their doctor. Likewise, the more informed physicians become, the more proactive they can be when screening their patients.”
The resolution gives some of the basic facts about IBC and encourages increased education about IBC. You can read the entire bill on the Library of Congress site. Here is the heart of it:
Whereas many physicians remain unaware of inflammatory breast cancer and diagnosis is frequently delayed due to a lack of knowledge in both the lay and medical communities: Now, therefore, be it
Resolved, That it is the sense of the House of Representatives that the Federal Government has a responsibility to–
(1) endeavor to raise awareness and improve education about inflammatory breast cancer;
(2) encourage the American Medical Association to take steps to immediately increase awareness of inflammatory breast cancer among physicians;
(3) encourage research that will improve treatments for inflammatory breast cancer; and
(4) continue to consider ways to improve access to information on inflammatory breast cancer for both doctors and patients.
You’ll notice that no money or methods are attached to making education and research happen, but it is a start for raising awareness. If this is a bill that you support, write your congress member. Patti Bradfield and all the other people whose lives have been affected by a delayed diagnosis will thank you.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.