“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.