Cancer Isn't Pink

Cancer Registry by Regina Holliday

There's nothing pink about cancer.  

Cancer is uncontrolled cellular growth. Cancer cells are set off by processes not yet understood, especially in breast cancer. Cancer cells multiply, then invade, choke off, and ultimately can kill its host if not surgically removed, poisoned by chemicals or burned by radiation.  Sometimes a cure demands all that plus hormonal therapy.

Cancer appears in sentences with words like lymphatic, salvage therapy or necrotic. I've seen necrotic tissue once. Once was enough.  It wasn't pink.

When I think pink for cancer awareness what comes to mind is My Little Pony or the color of bedrooms where little girls dream sweet dreams. Pink is a color toward dawn, when the sky begins to change and the possibility of a new day opens before you.  

Since my diagnosis I’ve met women with almost every form of breast cancer. The combination of mammography, individual breast health awareness and more effective treatments have led to a 30% drop in the mortality rate from breast cancer.  For the majority of us -- around 75% -- our walk through cancer treatment is a one-time event. But this isn't the case for every woman.

Before I finished treatment in 2000 I had attended the funerals of two young women diagnosed with inflammatory breast cancer, a very rare and the most aggressive form of the disease there is.  

Theresa Walleye showed me how to laugh with cancer; Judy Hallinan taught me about faith and friendship. The day following my reconstruction (when I was so drugged I had no idea I was even in pain) Judy stood by my bed, clapping her hands with happiness. “Oh,” she said, “you have a new booby," as though this was the coolest thing since sliced bread.

A year after that her cancer recurred in the pleura of her lung. Toward the end of her life, when her breathing became more impaired, her face inevitably changed.

     There wasn't one damn pink thing about that, either.

In inflammatory breast cancer, there is almost never a lump. The cancer cells actually BLOCK the lymphatic vessels, leading to the characteristic red and swollen appearance of the breast. The skin is often warm and dimpled, and the nipple in many cases retracts and sometimes inverts.  There is a high incidence of IBC in northern Africa (especially Tunisia -- where it is as high as 23% of all breast cancer cases) and when it is diagnosed in African-American women in the U.S., they are typically younger than the median age of 53.

Here’s one dilemma:  Unusual and rare cancers do not attract research dollars.  IBC is complex and confounding.  It is not diagnosed by simple biopsy, but a combination of presenting symptoms.

Curious about this, I wrote to both the National Breast Cancer Coalition, which has set 2020 (arbitrarily?) as the year to end cancer in its latest fund-raising campaign, and Komen-Houston to ask about their funding for IBC. So far I have not received a response from either organization. Then I checked BreastCancerTrial.org where I didn't find anything, and then clinicaltrials.gov. Of the 20 trials resulting when I searched “inflammatory breast cancer” only one was a direct match -- and it's closed.

So there are times when I think pink but see red.

Tomorrow: what now, what next.

Regina Holliday is an advocate and artist who uses her talent to promote health reform and patient rights. You can find her on Twitter at @ReginaHolliday. Please visit her blog at http://reginaholliday.blogspot.com/.