Frustrated breast cancer-stricken mom: Pink is no cure

SPRINGFIELD, Mo. — Katie Mayberry is dying of breast cancer. And she hates pink.

She hates all the pink bracelets and T-shirts, the pink-handled pistols and pink-labeled energy drinks.

To her, all that pink stuff has little meaning — mostly companies exploiting folks’ good intentions with too little profit ever trickling down to researchers working for a cure.

Mayberry is 35. She has a supportive husband and three young children, ages 10, 8, and 6. She has stage 4 metastatic breast cancer, an aggressive disease that has spread to her bones and liver.

She weeps when she thinks about not being there to see her 8-year-old get out of elementary school.

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“They have those little sixth-grade graduation things and I probably won’t get to see him do that unless something switches and people start opening their eyes and realizing that this pink crap is not a cure,” she said, wiping away tears.

“It’s not a cure. It’s just pink crap. That’s all it is.”

Mayberry and other women with stage 4 metastatic cancer took to social media this fall to spread the message that they believe more needs to be done specifically to help those with metastatic cancer — the type of breast cancer that kills.

One social media campaign, using the hashtag #iamsusan, takes direct aim at the “pinkest” charity, Susan G. Komen for the Cure, Mayberry explained.

“(Nancy G. Brinker) started the organization for her sister, Susan. Susan died of metastatic disease,” Mayberry said. “(Komen for the Cure) was set up to help women and have money donated to them to find a cure for breast cancer. Not pay for corporate people.”

According to CharityNavigator.org, founder Nancy G. Brinker was paid $480,784 in 2014 and CEO Judith Salerno earned $209,120. The organization was criticized a few years ago when Brinker, then CEO, was making $684,000 a year.

The organization’s website says Susan G. Komen for a Cure has donated $889 million to researchers over the past 30 years. Of that, $147 million has gone to research for metastatic breast cancer, according to Joni Avery, Komen spokesperson.

“We share the frustration of many women and men battling this disease,” Avery said in an email. “We need more and better options for treating metastatic breast cancer, which is why this has been an area of focus for Komen for many years.”

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Running from a beast

Mayberry discovered a lump and was diagnosed with stage 1 cancer back in 2011. She was 32 and felt confident because she caught it early.

She went through the typical “cut, poison and burn” treatment plan: double mastectomy, chemotherapy and radiation.

Then, in the fall of 2013, she began showing symptoms. She was diagnosed in February 2014 with stage 4 metastatic cancer.

According to the National Cancer Institute, the median survival rate for stage 4 metastatic breast cancer isn’t more than two years.

She doesn’t want to be that statistic. She wants to survive. She is four months away from beating that statistic and prays new target therapies can help.

“It feels like you’ve got this beast just running after you all the time,” she said. “You have to find this strength inside of you that you never even knew was possible. You have to go on because you have kids. You have people that depend on you. I have these little people that depend on me.”

Pink stinks, she says

Mayberry doesn’t blame or hold ill will toward people who buy pink merchandise. In her opinion, they are being misled about where their money is going.

For example, Dick’s Sporting Goods’ annual “Breast Cancer Awareness Shop” website says in the fine print that not all sales result in a charitable donation.

“There’s nothing wrong with the color pink. Wear pink if that is what you feel is supporting your loved one,” she said. “It’s the misleading information that gets all the (stage 4) community frustrated.”

“If they want to help, there is a really wonderful organization in Springfield called Breast Cancer Foundation of the Ozarks. They don’t donate to any kind of research, but they do help women in the Ozarks with their bills,” Mayberry added. “They are a great place to donate to. I highly support that.”

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Breast Cancer Foundation of the Ozarks offers extra financial support to women with stage 4, said Jason Gomez, assistant executive director for the foundation.

Metavivor and the Metastatic Breast Cancer Network are two non-profit, volunteer-operated organizations that give all the money donated directly to research being done to help find a cure for metastatic cancer.

CJ Corneliussen-James, co-founder of Metavivor, said her organization is both an advocacy and support group and a fundraiser for metastatic research. She said when she started Metavivor in 2009, there were no support groups for women with stage 4 in her area.

“When I had my primary breast cancer, there was tons of support for me. There was a world of support. But when I metastasized, I could find nothing,” she said. “I felt isolated and alone. I coined the phrase, ‘I fell off the pink pedestal.’”

According to Corneliussen-James, who lives in Maryland, Metavivor has donated $1.8 million in research grants so far.

“Most people aren’t aware that with the billions of dollars going into cancer research, only about 2% to 3% goes into research to find solutions for the already metastasized patients.”

A doctor understands, explains

Dr. John Buckner, of Cox Hospital, has been a breast cancer surgeon for nearly 25 years. He said he understands Mayberry’s anger and would probably feel the same way if he were in her shoes. He believes there is good reason why more money is being spent on prevention and early detection rather than helping those with stage 4 disease.

“There is a tremendous amount of dollars spent on new chemotherapies that are looking at metastatic cancer. It’s incredibly expensive, the development of these drugs,” Buckner said. “The reality is stage 4 metastatic cancer is generally considered non-curable and so that makes it an awful thing.”

Buckner said it makes sense to spend more money on prevention and early detection research because he believes that is the real “cure.”

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“I certainly wouldn’t get in the face of someone with metastatic cancer and tell her she shouldn’t be angry. I can completely understand why she should be,” Buckner added. “Let’s keep working hard up front so we never have to treat stage 4 cancer. Let’s just prevent stage 4 altogether.”

Mayberry is not convinced early detection would have made a difference for her.

“It didn’t matter when I was going to catch it. It was going to come back,” she said. “Early detection just finds your breast cancer earlier. That is all. It doesn’t tell you whether or not it’s going to spread.”

She worries most about leaving her kids.

“We go outside and look at the stars sometimes and I say, ‘Just pick your favorite star and whenever I’m gone, you just look up at that star and you just know that is me.’”

Other ‘giving’ tips

• Jason Gomez, assistant executive director for Breast Cancer Foundation of the Ozarks, said BCFO does not vouch for national organizations. He suggests people find a cause they care about and volunteer. If they want to give money and are curious where the money goes, ask.

• Check CharityNavigator.org’s ratings for national organizations that are working to prevent and cure breast cancer.

• Before buying a pink product, read the fine print to determine how much, if any, of your money will go to research for a cure.

• If you are interested in learning more about or donate to metastatic breast cancer research, visit metavivor.org or mcbn.org.

What is metastatic breast cancer?

• No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

• When breast cancer metastasizes, it is considered stage IV.

• Breast cancer typically spreads to the bones, liver, lungs or brain.

• 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

Follow Jackie Rehwald on Twitter: @JackieRehwaldNL