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 …
Sign in
Personal subscribers, sign in here:
Article access
Article access for 1 day
Purchase this article for £20 $30 €32*
The PDF version can be downloaded as your personal record
CiteULike
Connotea
Del.icio.us
Digg
Facebook
Reddit
Technorati
Twitter
Stumbleupon
Rapid responses
Latest Responses
The decline in the breast cancer incidence is 1.2% and it is not significant.
Published 10 February 2012
'twas ever thus
Published 10 February 2012
The value of historic human remains
Published 10 February 2012
In Praise of British Literature
Published 10 February 2012
Is real shared decision making possible?
Published 10 February 2012
Most responses
Does anyone understand the government’s plan for the NHS? (17 responses)
Published 17 Jan 2012
Bad medicine: medical nutrition (15 responses)
Published 18 Jan 2012
Shared decision making: really putting patients at the centre of healthcare (7 responses)
Published 27 Jan 2012
Why legislation is necessary for my health reforms (7 responses)
Published 1 Feb 2012
Search for evidence goes on (5 responses)
Published 17 Jan 2012