A formerly clueless patient responds
- Carol Jean Godby (jean-g@ix.netcom.com), senior research scientist
- OCLC-Online Computer Library Center, Columbus, OH 43201,USA
- Austin Automation Center (311), Department of Veterans' Affairs, Austin, TX 78772, USA
- Liverpool Health Authority, Liverpool L3 6AL
- Veterans Administration Outcomes Group, Veterans Administration Medical Center, White River Junction, VT 05009, USA
- Dartmouth Medical School, Lebanon, NH 03756, USA
EDITOR—I am a patient who received a diagnosis of low grade ductal carcinoma in situ in 1997, on my 43rd birthday, after obtaining a routine screening mammogram showing a cluster of indeterminate microcalcifications. Although I consider myself informed about women's health, I was ambushed by this news. Like the patients in the study by Schwartz et al,1 I had never heard of ductal carcinoma in situ until it became a terrifying issue that put my life on hold.
Surveying the literature written for patients makes it easy to understand why someone like me could have missed this. I ransacked it, starting with the copy of Our Bodies, Our Selves2 that I grabbed from my bookshelf on the day I came home to an ominous message on my answering machine from the radiology clinic. In the 30 pages about breast cancer, the only comment about suspicious mammograms was buried in a sidebar that had apparently been added in a recent revision and had no referring text. I learnt that most books and pamphlets written for patients assume that a woman's entry into the breast cancer culture starts with the discovery of a lump.
Many have long revision histories that predate the widespread use of mammography. Discussions of screen-detected disease are often meagre and carelessly patched in. On the day I received my diagnosis my surgeon dutifully educated me with a pamphlet entitled Breast Lumps.3 It covered the normal breast, benign and malignant lumps, the simple procedure of self examination of breasts, and what happens after the discovery of a lump. Of course, little of this applied to me. I had what was finally described in a small inset on page 11 as an area of abnormality on a mammogram. The rest of the pamphlet contained a list of …
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