Healthy Choices

‘Pinktober’ leaves advanced breast-cancer patients with little funding, enthusiasm

A shopper passes a display of pink-labeled soups in Princeton, N.J.
A shopper passes a display of pink-labeled soups in Princeton, N.J. AP file, 2007

November heralds the arrival of warm, autumnal hues in Sacramento’s tree canopy, a bombardment of acorns, crisper temperatures and – thankfully, for a certain group of advanced breast-cancer patients – the end of what’s increasingly referred to as “Pinktober.”

In the decades since it’s been designated breast-cancer awareness month, October has been awash in relentless marketing of all things pink, with cheery mammogram reminders and seemingly endless feel-good celebrations of increased disease awareness.

Before the pink ribbons, the pink athletic suits, the pink stuffed animals, the pink whatevers; before the annual Susan G. Komen Run for the Cure; before the words “battle,” “courageous fight” and “breast-cancer survivor” started to make some patients with advanced breast cancer feel like underachievers, October was just another fall month.

Now it’s gotten so that some women with metastatic breast cancer – that is, those whose tumors have spread to their bones, lungs, brains or livers – wish they could pass the days of October without having to witness the hoopla.

“In the Pink Movement, we talk a lot about survivors. Oftentimes, metastatic breast cancer patients don’t think of themselves as survivors. They feel isolated and left out,” said Kelly MacMillan, executive director of the Susan G. Komen Sacramento Valley chapter.

While breast-cancer awareness month has raised millions for research, to many, all that pink is a reminder that the awareness movement is traditionally a push for women to get yearly mammograms and to support women fighting early stage breast cancer – Stage I or Stage II – or those who’ve survived first rounds of treatment with clean bills of health.

Most everyone with the more advanced, metastatic breast cancer, called Stage IV, knows this initial good news can be upended in a matter of years as tumors return, more invasive than ever.

Kristin Sanborn Todd is 33 and a nurse practitioner at UC Davis Medical Center. In June 2013, Todd was pregnant with her first child when she felt a lump in her breast. At first, she thought little of it, attributing the change to hormonal surges in her body. By week 34 of her pregnancy, however, an ultrasound detected breast cancer.

The following week, Todd had breast surgery. In the 36th week of her pregnancy, her baby’s birth was induced. More tests showed the cancer had spread to her liver and bones. All too quickly, Todd had became a metastatic breast cancer patient.

“I fear with ‘Pinktober’ the public will become desensitized to the seriousness of late-stage disease and the incredible lack of funding of research for it. A very small percentage of breast cancer donations actually go to late-stage disease research,” Todd noted in a Facebook post in October.

Just 7 percent of the $15 billion spent in research from 2000 to 2013 addressed metastatic breast cancer, according to an October report of the Metastatic Breast Cancer Alliance, an umbrella group of 16 nonprofits launched one year ago. The bulk of research by major governmental and nonprofit funders went toward finding answers about early stage breast cancer.

Support groups of all sizes and stripes, including the Susan G. Komen Foundation and the Avon Foundation for Women, found the situation so alarming that they joined up with the Metastatic Breast Cancer Alliance to forge some changes. In just one year, the alliance has grown to 25 member groups.

“There is a paucity of research in MBC control, outcomes and survivorship,” the alliance’s report stated. “Research on mechanisms of disease in cell lines and animal models is usually focused on tissue taken from early stage, primary breast cancer, and not metastatic tumors. Clinical trial endpoints such as tumor shrinkage may not have relevance to tumor spread or metastatis.”

MacMillan said the Susan G. Komen Foundation has poured $91 million into MBC research since 2006, intent on discovering why MBC occurs and how to stop it.

According to the California Cancer Registry’s 2014 report, a single year will bring 24,985 new cases of breast cancer to women and men in the state. An estimated 4,245 patients will die of breast cancer in one year. And 314,300 people will continue with treatment of existing breast cancer.

Todd said in an interview that the buoyant, upbeat, rosy events of October “leave those of us at Stage IV feeling like we failed.”

In her case, genetics may have played a role. “I don’t know what I could have done differently that would have prevented cancer,” Todd said. “I exercise, eat right and was an athlete. But I had an aunt who had breast cancer.

“I also worry that the pink campaign puts out false hope to those who believe they’ve beaten early stage cancer. The truth is, it can return at any time. “

Locally, Cass Brown Capel, a clinical psychologist who urges patients to gain precise medical knowledge of their disease, coordinates a support group called Save-Ourselves.org. She also heads up a special support group called “The other shoe …” for those whose cancers have metastasized.

Capel recalls that, many years ago, before the pink ribbon became ubiquitous, purple was favored by many because it conjures up courage. Pink was thought to lead to “frilly little girl”-type messaging.

But the simmering backlash against the “pinking of October,” as some put it, hasn’t stopped the wide-scale marketing of the color as a means of public relations-driven support of breast cancer awareness.

Perhaps the oddest case is a campaign in October by Baker Hughes, one of the world’s largest oilfield service companies. Using the slogan “doing our Bit for the Cure,” the fracking company pledged $100,000 to the Susan G. Komen Foundation. The company added it will distribute 1,000 pink drill bits to oilfields around the globe.

The stunt had national activists seeing red. Jeanne Rizzo, president of the Breast Cancer Fund, released this statement: “I’ve had enough of the All American sport of marketing pink to cover up poison,” Rizzo said, noting that fracking exposes workers to cancer-causing benzene. “I honestly thought I had seen and heard it all. October’s deeply hypocritical marketing around breast-cancer awareness has not yet hit bottom.”

What’s next? The state of California is offering motorists a chance to “pink ribbon your vehicle” by purchasing a “specialty breast-cancer awareness pink license plate.” No word yet on whether a portion of the purchase price is to be dedicated to research.

A close friend of MacMillan, Anne Jacobs, has been living 10 years with metastatic breast cancer. “I saw I was different from the women in the ads. My cancer wasn’t going to be cured; I would never be cancer-free. October, or Pinktober as it is now called by some, is a month of confliction for me … an emotionally challenging month of gratitude, frustration, fear and loneliness.”

Call The Bee’s Cynthia H. Craft, (916) 321-1270.

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