Recently I wrote about House Resolution 1300, which talks about the need for education for patients and doctors about inflammatory breast cancer (IBC) to prevent misdiagnosis. The irony is that these days many women who go to the doctor are pretty sure they have cancer. They’ve used a computer search engine to list their breast cancer symptoms.
Elaine from San Diego says, “I had a bruise-looking spot on my breast for about two weeks and did a Google search for ‘breast bruise’ to see what it said. One of the items that came up was a description of IBC. I was at my gynecologist’s office the following morning 9AM, without appointment.” Her doctor sent her for tests, and she was soon in treatment for IBC.
When Tammy Jo researched her swelling, pain, and discoloration in 2004, her symptoms took her to www.ibcsupport.org. She comments, “I looked at the IBC pictures and realized my breast looked just like the pictures. I knew at this point I had cancer. I told my husband and, of course, he got onto me for trying to diagnose myself through the Internet. I was overwhelmed with how fast my breast/skin changed within one week I was blessed to have a family physician and surgeon who knew something was wrong and pushed to have tests, etc. done immediately.”
Peggy had a similar experience. Her reading on the Internet made her push for an immediate doctor’s appointment. Peggy says, “If I had not read all about IBC online, I would not have seen a doctor that quickly. I would have waited for it to get better on its own.”
The Internet has been especially helpful for women who live in small towns. Eija was diagnosed in May 2004. She reports, “Computers have been very useful for me. Our little library here in Lexington did not have many books on cancer. After reading IBC cancer information online, I realized that time was of essence; thus, I would not take “no” for an answer.”
Pat of Eastport, Maine says, “I live in the easternmost city in the US. We have a small health center, but the nearest hospital is nearly 30 miles away, as is the nearest pharmacy. Isolated as we are, I count the Internet as an indispensable tool in my fight with this disease.” Like many women with IBC, Pat used the computer to make sure she was getting the best and most up to date treatments as she worked with her doctors.
Although many women have doctors who will listen to them, I’ve heard too many stories about women whose doctors react negatively to the idea that a patient might know what is wrong. Four years ago Cynthia Frederick had that problem. “I found the IBC support site and learned enough to make me become the squeaky wheel.” Knowledge that Cynthia gained from her research gave her the confidence to change doctors to get the proper tests done.
It is important to have an open mind about a self-diagnosis made on the computer. Over the years many of the women who have written the mailing list at IBC Support (www.ibcsupport.org) or called the toll free number of the IBC Research Foundation, 1-877-786-7422 (www.ibcresearch.org) because they think they might have IBC, have eventually contacted us about their actual diagnosis. Rashes on the underside of the breast often turn out to be heat rash or a fungal condition. Women worried that they have IBC sometimes really do have mastitis or another type of breast infection like an abscess. Sometimes it turns out to be another type of breast cancer. A few have had completely different diseases like lupus.
My advice to women who use the breast symptoms tool on this website or any other and who find that IBC might be the cause of their symptoms would be: take a deep breath and try not to panic.
Benign conditions share symptoms with IBC. On the other hand, it is important to see a doctor right away and to be assertive if you feel like your doctor is not taking your symptoms seriously. Being the squeaky wheel could save your life.
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.