"I have been having several strange symptoms (insert list here). What can it be?" Every week this web site gets variations on this question.
Here at the HealthCentral Breast Cancer site, Health Guides, such as PJ Hamel and myself, are not medical professionals. We are well-read breast cancer survivors who share what we are learning about breast cancer in shareposts and who answer questions that come into the site. When we get a question like the one above, sometimes we have an idea right away of what the symptoms might mean. Sometimes we don’t. Either way, we are always conscious that the questioner might have either a breast problem we are unfamiliar with or a systemic health problem that shows up in the breast area first.
I have worked for about ten years in a similar capacity as a volunteer at an inflammatory breast cancer on-line support group. Often I never find out what happens to the people who write in, but sometimes they share their final diagnosis with me. I remember one woman who turned out to have scleroderma that showed up first in her breast skin. I had never heard of this disease that hardens skin and other tissues; in fact, I had to look it up when she wrote to me with the name of her diagnosis.
Lupus is a disease I had heard of because I have known two people with it, but I didn’t know the rash that can be one early sign of lupus can appear on the upper chest. That is what happened to another person who wrote into the support list thinking that she might have breast cancer.
Being well-read on breast cancer issues didn’t help me respond to these women. Thank goodness I recognized the limits of my knowledge and encouraged them to go back to the doctor and be persistent in getting a diagnosis. Neither of them fit the "textbook" first symptoms of their disease, so my own medical diagnosis experience did give me some background in ways to deal with the medical community for any kind of health issue.
I was reminded of both of these women when I read about Susan Castillo, a young woman diagnosed with Idiopathic Granulomatous Mastitis (IGM). It took doctors a year to diagnose Castillo’s disease. In an interview with Joanna Raines at Texas A & M, Castillo said, "I was basically living in the hospital or the operating room when I was diagnosed. I had eight operations and in-office procedures to remove tumors and abscesses from both breasts, but the tumors and lesions just kept coming."
It is not surprising that it took doctors so long to diagnose Castillo’s IGM. Patients with Idiopathic Granulomatous Mastitis, a disease that was only named in 1972, have tumors and abscesses in their breasts. Doctors usually begin by suspecting mastitis or inflammatory breast cancer because IGM is so similar in its presentation. The ultimate diagnosis is based on exclusion. After biopsies show that the tumors are not cancer and other tests show that the problem is not an infection or a host of other diseases, what is left is IGM.
The disease is rare enough that it is not well understood. One theory is that it is an auto-immune disease. There is some indication that it may be more common after a pregnancy, which is what happened to Castillo. The treatment may include corticosteroids, immunosuppressive drugs and surgery. Somehow Susan Castillo has managed to balance her responsibilities as a college student, wife and mother while dealing with this health issue.
When you write to any health website with the question, "What can it be?" it is important to realize that no one diagnose a health problem over the internet. Doctors use visual examination, blood tests, biopsies, and other tools to come up with a diagnosis. Even the most detailed list of symptoms cannot substitute for these. We can give you background information about some of the most common breast problems. In some cases we may be able to suggest home remedies to try until you can see a doctor. Often we can help you sort out whether the problem is an immediate emergency or one that can wait a little longer. We are a fantastic source for tips for managing breast cancer treatment if that is your ultimate diagnosis.
So be realistic about how a health website can help you. Do keep writing us with your questions about puzzling breast problems and let us know what the doctor says. We learn so much from you.
Joanna Raines. "Defying All Odds. The Battalion Online. July 25, 2012.
Richard Tuli, Brian J O’Hara, Janet Hines, Anne L Rosenberg. "Idiopathic granulomatous mastitis masquerading as carcinoma of the breast: a case report and review of the literature." Int Semin Surg Oncol. 2007; 4: 21. Published online 2007 July 27. doi: 10.1186/1477-7800-4-21
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.