Lynne Anderson

William G. Woods, MD, director of the AFLAC Children’s Cancer Center in Atlanta, estimates that between 50 and 60 percent of cases diagnosed in infancy will spontaneously regress without any therapy. Its unpredictable behavior, however, makes this unusual type of cancer vexing and stressful for families whose infants, like Austin Matthews in "

“Until it starts regressing, it can grow rapidly,” explains Woods. “And we’re not able to distinguish by genetic testing those tumors that are bound to regress.”

A solid tumor of the sympathetic nervous system, neuroblastoma affects about 650 to 700 children in the U.S. each year. When neuroblastoma has spread to other organs, Woods says, “there are some destined to do very poorly.

”The survival rate for stage 4 illness is less than 50 percent, Woods says.

Thus, parents often live in anguish as they await news from each new scan, which typically occur every three to four months. Each fever, cough and tummy ache can be a wrenching emotional experience. 

Infants like Austin who are diagnosed with neuroblastoma must be watched very carefully, Woods says. That includes periodic CT or MRI scans.

Although the cause of neuroblastoma is unknown, most physicians believe it is an accidental cell growth that occurs during normal development of the sympathetic nervous system. The most common site for neuroblastoma to originate is on the adrenal glands, located above each kidney.

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While sometimes one of the most aggressive of childhood cancers, neuroblastoma frequently goes away on its own. 

Cancer Chameleon

Researchers at three hospitals are testing a new system that would let you see your doctor's notes, from your appointments, online.Jan Walker, a Harvard Medical School instructor, is one of the study's lead researchers. She told Reuters Health that the goal of the OpenNotes project is "to expand the dialogue between patients and physicians."In my case, I would want to see my notes to make sure I've not been libeled. Well, maybe I was just labeled. According to medical records I received from a clinic, I drank enough to be considered an alcoholic. If the nurse's notes had been accurate, I should have been seeking treatment for addiction rather than learning whether I had cancer. (I did not, so the little error in my notes seemed like a trifle, although a somewhat disturbing one at the time!)I had gone to see a surgeon because a mammogram revealed a suspicious mass. The nurse took my history. Later, the surgeon came in to discuss the results of a core needle biopsy done a few days earlier. She said things looked good, that she was nearly certain that I did not have cancer. She said she had not spoken yet to the pathologist, though. She said she would call me within two weeks to let me know the final outcome. She didn't call me in two weeks. And, she didn't return a phone call. I became concerned. I decided to go to another doctor. I didn't have quite the confidence in this physician that I wanted to have, given the fact that we were talking cancer or no cancer.Thus began the lengthy process of requiring my medical files – the images, the slides, the notes from my first visit. That process in itself would make me an advocate for easy patient access to records such as Walker is studying, but what happened later really cinched it for me. I got my records. I browsed through them. They started out with something like "pt is a pleasant white female...blah blah blah." No problem, I thought. Yawn. Boring. Just like my life, I thought. I'll just file these away.Then, the notes got interesting!When the nurse had asked me about my lifestyle habits, I answered honestly. No to smoking. Yes to regular exercise. And when it came to the drinking part, I shared with her that actually, I had been drinking more than normal as of late. I would hazard to guess I was drinking a cocktail every day, I confessed. "Any more than that?" she asked, probably aware that most patients under-estimate the bad habits and exaggerate the good stuff. Now she had me. "Well," I said, "in truth, I probably have been having as many as 10 drinks a week. ' But Holy Cow, when I saw the notes, I became terrified that my drinking was excessive – and that I must have been losing my memory to boot. The notes said: "Patient admits to drinking 10 shots of liquor a day." (Italics -- and surprise -- mine.)OK, I had admitted to the 10 drinks a week. And I hadn't even blamed my favorite Mexican restaurant and its wonderful margaritas. I womaned up and accepted responsibility. I wanted to give an accurate history. How ironic that the notes turned out to say, not just 10 drinks a day but 10 shots a day – as if I were swigging the Jose Cuervo over the dinner table. And at dessert. And for bedtime. Because how can a person drink 10 shots of liquor a day? Who would have the time? And if I had been doing that, why didn't the nurse or doctor recommend an addiction treatment facility for me? Clearly, it was simply an error, a "zero" added at the end of the nurse's sentence.But I was embarrassed by the note and wondered who else might have seen it. At that point, what could I do? I wasn't going to that same clinic any longer, and all I could do was to tell the new doctor that I wasn't an alcoholic. To which he or she would have probably thought, "yeah, right, you're all in denial."Had I had access to my notes online, I could have checked them right away and asked for a correction. As it was, several people, whose names I will never know, saw that, thought, "wow, that lady needs to be in treatment!" To read more about the study, go to 

http://www.reuters.com/article/idUSTRE66i5KS20100719

Lynne Anderson

Cancer Chameleon

A look into your medical records -- and more -- can be sobering

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