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Breast cancer fundraising should fund treatment too

Bobbie Shay Lee waited in the hospital hours before surgery and reflected on the daunting gantlet she had navigated to put herself in a position to have life-sustaining breast surgery.

Two years ago, Lee discovered something had gone terribly wrong with the surgical implants she received in 1998 after being diagnosed with breast cancer at the age of 25 and undergoing a bilateral mastectomy.

Her pectoral muscle had disintegrated and the implants had torn away from her chest muscle because of a serious infection. Doctors said they would have to be removed immediately.

But at the time she was an independent contractor for the nonprofit Home Aid Tampa Bay and didn't have health insurance. She was denied in March 2010 because of a gap in coverage.

"Had I been covered by insurance, I would have been a candidate for a total breast reconstruction and repair," said Lee, a St. Petersburg native. "But because I was a self-pay patient, my only option was total removal of the reconstruction."

After coming up with $7,000, she sat in only a robe, confident she had cleared at least one obstacle. But a suit-wearing surgery center manager walked in and shattered that confidence with an unexpected message: the doctor wasn't coming to perform the surgery because of an outstanding balance.

She was short $800.

The office had been notified that the final payment would come from her mother's money market account that afternoon.

But none of that mattered to the doctor. He wasn't coming unless he was paid. In full.

"The nurse was so apologetic and concerned," Lee said. "She could NOT give me medication to calm me down without my doctor present to make the request."

That twist stood as another difficult chapter in her battle against cancer. In 1998, she shined as a vibrant Tampa Bay Buccaneers cheerleader. After learning of her diagnosis, Lee left the squad, earned a master's degree in social work from Florida State and became a lobbyist. She publicly advocated for breast cancer awareness. She stressed it can strike young women and touted the importance of self-examination, a lesson she learned from her mother, a mammographer.

Yet on the day she sat in that hospital room, which grew colder by the moment, she didn't have a community clad in pink ribbons to call upon.

Finding the last few dollars wasn't impossible. Finding the trust she had in the surgeon proved more difficult.

"I had to sit there and find some reasoning why this is happening," said Lee, tearing up recently as she recalled the moment. "In my faith, when things go wrong it's either the work of God or the hand of the devil.

"I didn't know what to make of this."

Her mother paid the remaining balance using her personal debit card.

The doctor arrived after the payment cleared.

• • •

Lee's story illustrates the need to broaden the focus of the annual breast cancer campaign from awareness and research to supportive services — including mammograms, treatment services and reconstructive surgery, especially for the medically uninsured and underinsured.

"Patients don't have the energy to fight for funding," said Lee, who had 26 hours of surgeries between November 2010 and November 2011. "They need to reap the reward of being at the close of their journey. It shouldn't be the beginning of another struggle."

It's a difficult stance. She recognizes the women who participate in fundraising walks and runs may take exception to her wanting to expand the effort far beyond finding a cure. She applauds the women, whom she has walked with in past years.

"I see how empowered they feel," Lee said. "But I question how many of them understand where the money they have raised is going and who it actually impacts."

Fans will gather at Raymond James Stadium Sunday to cheer on the pink-trimmed Buccaneers, and Lee looks forward to someday lending greater meaning to the game.

"Because I was an NFL cheerleader when I was diagnosed I was recently approached to be part of a PSA that supports the local breast cancer game," Lee said. "I really look forward to having those discussions and hope we can make a local impact in Tampa Bay that sets us apart from the other teams in the NFL."

In the interim, she will root for a day when breast cancer survivors can be made whole without having to navigate medical gantlets or empty out their savings accounts.

I'm rooting for that day, too.

That's all I'm saying.

Breast cancer fundraising should fund treatment too 10/11/12 [Last modified: Thursday, October 11, 2012 4:30am]
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