Becoming an Expert on Your Breast Cancer Treatmetn

Phyllis Johnson Health Guide
  • I'm hoping it's bubonic plague," I told my oncologist.


    She looked startled and poked on my swollen lymph nodes. Then she smiled and said, "That would be neat. I've never treated plague before, and it responds well to antibiotics. Have you traveled in the Southwest recently?"


    It's a strange world when you and your oncologist think having bubonic plague is preferable to have a cancer recurrence. We were mostly teasing, trying to deal with the fear of a recurrence. I don't remember what tests she decided to run, or even what the final diagnosis was. It wasn't plague, and it wasn't cancer. That's what mattered, and that's all I remember nine years later.

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    Since being diagnosed with cancer, I've found myself in another strange world -- cancer expert. I'm an English major! I barely made it through high school chemistry. In college I took the minimal biology courses that would fulfill my science requirement and moved on to immersing myself in Chaucer and Twain. It's true that I've followed health news closely through my adult life, but expert? Me? You've got to be kidding.


    I hadn't even finished treatment before people were describing their breast symptoms to me and asking my opinion. I joined a mailing list for people with Inflammatory Breast Cancer (IBC) and soon found myself responding to people's letters about mouth sores and vomiting. Someone asked me to help monitor the list, and I moved up a notch in people's perception of my knowledge. A little over a year ago, I started writing for, and found that they were putting the word Expert on my posts.


    It's all very flattering, and I like to think my responses have been helpful to people. However, I, as the writer, and you, as the reader, need to be cautious. When people write in asking about their symptoms, they rarely give their entire medical history.


    Often they leave out the most basic information such as how long they've had the problem or how extensive it is. I've only seen one case of IBC-- my own. I know from reading hundreds of letters from people with IBC that presenting symptoms vary.


    I know that many people don't have a primary care provider, don't have insurance, or don't have enough money for their co-pay if they are insured; however, I almost always suggest that people contact a doctor even if their symptoms don't sound too serious to me.


    Over the last ten years, I've read about all sorts of breast problems, and I've lived through the diagnostic process for all kinds of health issues. I probably know more than the average person, but there are probably ten causes that I don't even know about for every symptom that you might mention in a letter to a health website.


    It might sound like heat rash, but suppose it's cellulitis -- a skin and soft tissue infection that needs prompt treatment? It might sound like an insect bite, but suppose it's a MRSA infection that can kill within hours? Even a doctor can't diagnose over the Internet, and I'm not a doctor. It probably wouldn't hurt to watch most rashes for a week or two and try an anti-fungal or diaper rash cream to see if it clears up on its own. But suppose I suggest that to you, and you have something dangerous? Something that needs immediate treatment?


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    Understand the limitations of online advice. It can help you understand some of the possible causes for your symptoms, but it can never diagnose them. Only a doctor can do that. You can get the best advice if you include information about how long the problem has persisted, if it comes and goes or is getting worse, and some background on your age and medical history.


    And, oh yes, if you've been traveling in an area with a bubonic plague outbreak, include that in your email.



Published On: November 15, 2008