When Your Body Didn't Read the Textbook: Diagnosing Breast Conditions with Unusual Symptoms
A reader wrote in concerned that she might have inflammatory breast cancer (IBC). Although she had three of the symptoms of IBC--redness, swelling, and warmth--her doctors were confident that she couldn't have IBC. She did not have the characteristic skin dimpling of IBC, and only part of her breast was affected. Yet five antibiotics had not diminished her symptoms. Finally they decided to biopsy.
The results were astonishing! Her doctors were right. She did not have IBC. She had an internal malignancy that had escaped detection from earlier imaging tests. Cancer deep in the breast does not typically show itself with infection-like symptoms on the surface of the breast, but it did in her case. Her body clearly had not read the textbook!
A friend of ours was diagnosed with a rare type of cancer in her knee that usually appears in the spinal cord. Her diagnosis was delayed because her body hadn't read the textbook.
This kind of situation occurs more often than we might imagine. Our bodies are complex, individual organisms. Each of us has her own genetic code, her own medical history, her own combination of environmental factors. How our bodies manifest disease varies widely.
My situation was similar to our reader's. Thirteen years ago, I had some of the symptoms of IBC, but not all. My doctor assured me that my swelling was not nearly as severe as it would be if I had IBC. Thank goodness he believed that if one course of antibiotics does not clear up an apparent breast infection, it is time to biopsy to rule out IBC.
He was ahead of his time. The current guidelines of the National Comprehensive Cancer Network say that doctors need to rule out IBC first when women who are not breast feeding have apparent breast infections.
The wide variation in how breast cancer reveals itself is why we at the HealthCentral Breast Cancer site always tell readers to see a doctor for any change in their breast that lasts longer than a month. Breasts are constantly changing over the course of the menstrual cycle as hormones surge and wane. But when a change remains constant despite hormonal highs and lows, it is time to see a doctor. Post-menopausal women should call a doctor sooner because their breast changes are less likely to be related to hormones.
What should you do if you have symptoms that don't seem to fit any known category?
First, remember you are not a doctor. Symptoms that can relate to breast cancer can also relate to other problems. Swollen lymph nodes under the arm might be related to lymphoma. Redness under the breast might be a fungal infection. Googling "itchy breast" may lead you to articles on IBC, but an itchy breast is more likely to be dry skin or an allergy than a rare type of breast cancer. It is important to have your doctor assess the entire situation.
Second, remember that your doctor does not know everything. If your body is not behaving in textbook fashion, your doctor may be as puzzled as you are. Doctors have been trained with the maxim, "When you hear hoof beats, think horses, not zebras." They know that most of the time, a patient has a common problem, not a rare one. It usually makes sense to start by investigating the most likely cause of a symptom. The exception is when one of the possible causes needs immediate attention to prevent death or permanent disability.
When faced with a puzzling situation, most doctors will ask for help. They will refer you to a specialist, maybe several specialists in different fields. Do not be exasperated with your doctor if he or she starts you with a medication or suggestions for life style changes while sending you on to a specialist. When you are convinced you have cancer, being told to stop caffeine is infuriating. But as long as your doctor is taking steps for a more thorough investigation, it makes sense. Stopping caffeine may cause you a withdrawal headache, but if it turns out that you are one of those women whose breast pain is caffeine-related, your doctor may have spared you a needless biopsy.
Third, remember that you may need to push for a diagnosis. While most doctors will not rest until they understand what is causing your symptoms, some will give up and tell you to learn to "live with it." This is where you need to be your own triage nurse.
Are your symptoms causing excruciating or mild breast pain? Is this a lump that has been the same since puberty or is it growing rapidly? Could the swollen nodes in your armpit be because you have been exposed to the flu? The answers to these kinds of questions should determine what to do next.
If you are a person who always immediately jumps to the worse conclusion, then you may need to calm yourself down and do what doctors call "watchful waiting." Remember those horses and zebras. You have seen the doctor; you have had appropriate imaging tests; the doctor says, "Don't worry." Give it a month or two to see what happens.
If you know your body well and are not typically an alarmist, be assertive. Ask for a referral to another doctor. Learn about the different types of imaging tests such as mammograms, ultrasounds, and MRI's, and request the appropriate ones. If your local breast specialist can't explain your symptoms to your satisfaction, ask for a referral to a doctor at a research hospital or comprehensive cancer center.
Do not try to diagnose yourself. Doctors don't usually appreciate a patient who comes in and says, "Doc, I have Disease A, and I want you to treat it with X, Y, and Z." Just describe your symptoms and the impact they are having on your life. "Doctor, my nipple has had this scaly rash for five weeks, and it is getting worse," or "I'm having trouble sleeping because the pain in my breast wakes me up two or three times every night."
Listen carefully to the doctor's explanation and ask him or her to repeat or rephrase anything you do not understand. If the explanation does not seem to fit all of your symptoms, ask questions such as, "So one possible cause for my problem is A. What are some other possible causes? What kinds of tests are needed to make sure the problem is A and not B? If the problem is A, how long should it take for this medication to clear it up? What symptoms should I watch for? When should I come back if I am not feeling better?" If the doctor dismisses your concerns and acts like you can't understand, look for another doctor until you find one who will work with you to find out what is wrong.
When symptoms do not fit typical patterns, you are the expert. No one else knows your body as well as you. When you know that something is wrong, do not rest until you find the answers you need. Be your own advocate.