Today in America 116 people will die of breast cancer. But go right ahead and put on that pink tutu, celebrating breast cancer as if it’s a completely curable disease. 

Sadly, it isn’t. Not the metastatic variety.

While most breast cancer patients are pronounced cancer-free after treatment - thank God - roughly 30 percent will get hit by the truck of metastatic breast cancer down the road, sometimes long after they did the pink happy dance.

This means their breast cancer has spread to other locations: lungs, liver, brain or bones. There is no cure for those whose cancer metastasizes. Just endless, brutal treatment.

These women - and men - have a death sentence. And for many of them the pink celebration is painful. They wish that a greater percentage of the millions that are raised during Breast Cancer Awareness month through the marketing of pink paraphernalia was spent on finding a cure for them.

Instead, it goes to popular charities that blow most of the loot on events, education, advertising and public awareness during a month-long pink party every October.

“It’s been 30 years!” exclaimed my friend and neighbor, Lori Burwell this week. “C’mon, we’re all aware of breast cancer. We need a cure.”

Before Lori was diagnosed with metastatic breast cancer four years ago, I naively believed that breast cancer was almost completely curable. You find a lump, you get it removed, have treatment and live a long life. Oh, and you run in the breast cancer 5Ks every October.

But there are roughly 160,000 Americans like Lori, who live from treatment to treatment trying to keep a determined disease at bay. They are not lacing up pink tennis shoes and doing a victory lap.

In a provocative piece this week headlined, “Why the Women Most Likely to Die of Breast Cancer Have Gotten the Least Attention,” Time magazine highlighted the grim reality of metastatic breast cancer.

Despite the billions of dollars collected and spent on breast-cancer research over the past half-century, relatively little has been devoted to studying metastatic-breast-cancer patients or their particular forms of the disease. Doctors do not know why some breast cancers eventually form deadly metastases or how to quash the disease once it has spread. Patients with metastatic disease are typically treated with one drug after another, their doctors switching the medications whenever the disease stops responding to treatment. Eventually, nearly all patients with breast-cancer metastases run out of options and die, although in recent years, many have been living longer.

Lori Burwell, a petite tennis player, grandmother and former math teacher at Ocean Lakes Math and Science Academy, is remarkably open about her disease. She found a lump in her left breast early in 2010. She had a mastectomy, four kinds of chemo and one year later was, “patted on my head by my oncologist and told to go live my life.”

In April of 2015 she experienced chest pains. Medical tests showed metastatic tumors in her lungs. Three months later she began chemo “that will never end until I die.”

In November of 2017 Lori found a clinical trial at Memorial Sloan Kettering in New York and has been in treatment there ever since. 

“No doubt I’d be dead without this trial,” she said. “But there is little left for me once the cancer gets smarter than this drug, which it surely will as all metastatic cancers do.”

If you talk to Lori or anyone else with this ferocious disease, don’t toss pink platitudes at them, like, “You’re a fighter, you’ll beat this.” There’s no beating metastatic breast cancer. It always emerges victorious. Plus, using the language of war suggests that the 116 people who died today didn’t fight hard enough.

”We are not fighting a battle,” Lori says. “We ARE the battleground.”

Everywhere you turn for the next 27 days you’ll see pink. Football players in pink shoes, people running races in pink shorts, politicians sporting pink ribbons. Well-intentioned, all. But not doing a whole lot of good.

Lori wrote a letter to the editor of The Pilot this week asking folks who really care about breast cancer to, “Scrap the pink. Fund research. Find a cure.”

Listen to Lori.