As I left my dermatoligist’s office this past October, I grabbed a magazine to read on the train. Unfortunately for me, the magazine was Health Monitor, a free publication distributed in waiting rooms.
There was a special Breast Cancer Awareness month profile of Olivia Newton-John.
I have read issues of “Highlights for Children” that were more informative.
Nothing against Olivia Newton-John–it’s just that the writer provided no context for her remarks–as if Newton-John’s experience could somehow be broadly applied to everyone’s.
Here is my email to the Health Monitor editor:
As one of 155,000 U.S. women living with metastatic (aka Stage IV) breast cancer, I would like to share a little secret with you:
We do not need another puff piece on women celebrities who have “survived” early stage cancer and are now prattling on about positive attitudes and natural healing while shamelessly plugging their own business ventures and entertainment projects.
A far more compelling angle for Health Monitor’s Oct./Nov. cover story would have been: “Olivia Newton-John: Hopelessly Devoted to Plastic Surgery.”
But I digress.
Bonnie Siegler’s article touts the benefits of early detection. There is absolutely no mention of inflammatory breast cancer which doesn’t present with a lump. Some women, IBC and non-IBC alike, may have breast thickness and some may have no outward symptoms at all.
Newton-John told Siegler: “If I had not found my lump by my own hands, it would have been sizably larger and it might have metastasized by the time it was discovered.”
I am 44 and I presented with mets, as six to 10 percent of U.S. women do. I resent Newton-John’s implication that somehow I did something wrong because I didn’t find my own cancer. But far, far more offensive to me is Newton-John’s sunny optimism: “I believe your outlook–the way you–think–affects your health and future. It affects your survival.”
I am a woman with an incurable disease. I am not the Little Engine That Could. A positive attitude will not unsnarl my defective DNA.
“It is difficult enough to be injured or gravely ill. To add to this the burden of guilt over a supposed failure to have the right attitude toward one’s illness is unconscionable. Linking health to personal virtue and vice not only is bad science, it’s bad medicine.”
–Richard P. Sloan, professor of behavioral medicine at Columbia University Medical Center, and author of “Blind Faith
Early stage breast cancer does not kill women. Metastatic breast cancer does.
Siegler seems to perpetrate the early stage “Treat it & Beat it” breast cancer myth. Although follow-up care is mentioned, one key word, “recurrence,” is nowhere to be found.
In October, the Breast Cancer Awareness spotlight is almost exclusively on women who “beat” cancer–not the “metser” who is losing her hair for the third time, or the one struggling with chronic constipation or the one who knows she won’t see her daughter graduate from grade school.
The next time you write about breast cancer, I hope you will go far beyond a superficial profile of a celebrity with early stage breast cancer who advocates some vaguely defined “holistic” approach. There are many excellent metastatic breast cancer resources–the Metastatic Breast Cancer Network (www.mbcnetwork.org) would be happy to provide input.
Here is what I wish Siegler and Health Monitor readers knew about metastatic breast cancer and breast cancer in general:
>Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver and lungs.
>Treatment is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)
>About 6% to 10% of women are Stage IV from their initial diagnosis.
>Early detection is not a cure. Metastatic breast cancer can occur ANY time after a woman’s original diagnosis, EVEN if she was initially Stage I, II or III.
>Only women with Stage 0 (DCIS) (noninvasive breast cancer) aren’t considered to be at risk for metastatic breast cancer.
>Between 20% to 30% of women initially diagnosed with regional stage disease WILL develop metastatic breast cancer.
>Young women DO get metastatic breast cancer.
> There are many different kinds of metastatic breast cancer.
>Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.
>Any breast lump, thickness or skin abnormality should be checked out. With inflammatory breast cancer, there’s no lump-the breast can be red and/or itchy and the skin may have an orange-peel like appearance.
>Women shouldn’t use the recent mammogram controversy to postpone their first mammogram or delay a regularly scheduled exam, especially if they have a family history.
>Mammograms can’t detect all cancers. Trust your instinct. If something feels “off” insist on further diagnostic testing.
>Metastatic breast cancer isn’t an automatic death sentence–although most women will ultimately die of their disease, some can live long and productive lives.
>There are no hard and fast prognostic statistics for metastatic breast cancer. Every woman’s situation is unique.
>There are many excellent online metastatic breast cancer resources. Examples include www.mbcnetwork.org, www.inspire.com , www.breastcancer.org and www.metavivor.org. (Not forgetting http://www.ihatebreastcancer.wordpress.com.!)
NOTE: To her credit, the Health Monitor’s editor did promptly respond with an invitation to write my own article. I haven’t done so, but I will follow up with her to see if the offer is still open!