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The Triple Negative Breast Cancer Struggle

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When I received an e-mail from photographer David Jay telling me about his latest photo work I was elated.

I remember David from when I interviewed him last year about The Scar Project, his critically-acclaimed series of stunning photographs all intended to raise awareness about breast cancer affecting young women.

This latest collection of photographs document the journey of four women from Birmingham, Alabama -- both their struggles with breast cancer and the related plights that often accompany such a diagnosis: daunting healthcare concerns with limited or no insurance coverage, ballooning medical costs, and treatments that challenge a woman's physical and emotional well-being.

An added key factor is that the women pictured in these photos have received a diagnosis of "triple negative," a strain of breast cancer which African American women are two times more likely to get.

I wasn't familiar with the plight of breast cancer among African American women. Doing a quick search of the facts frightened me. According to the Centre of Disease Control (CDC), in 2010 breast cancer was the leading cause of cancer death for African American women between the ages of 45 and 64.

Breast cancer mortality is 60 per cent higher for African American women ages 45-64 than for white women, even though African American women are less likely than white women to be diagnosed with the disease.

Breast cancer often appears in African American women at a younger age and at more advanced stages. The higher incidence of triple negative breast cancer among the population is also problematic, since it is a lesser understood form of the disease which is believed to grow more aggressively than other forms of breast cancer and can be more complicated to treat.

Fortunately all of these women benefited from early cancer detection, thereby putting them on the necessary path towards appropriate treatment. Throughout their journeys, however, each encountered unique challenges of her own. For some the greatest hurdle was health care costs, insurance coverage complications, strain on family relationships, and mounting debt, while others who were covered by their own insurance when diagnosed or able to take advantage of Obamacare while undergoing treatment faced other battles along the way.

Enter Cynthia Ryan: a spirited journalist and breast cancer survivor living in Alabama who David introduced me to. She was also doing her part to collectively raise the awareness of these women's stories by conducting a series of extensive interviews with each subject. I instantly jumped on board to work with Cynthia and David to ensure that their voices would be told in this platform.

During this heated presidential campaign, when numbers, graphs and double talk muddle the air, it's more important than ever to peel back the thick layers of jargon, political spin and heightened promises, and reveal heartfelt stories directly from those affected.

So here we present to you the experiences of four African American women, all of whom are suffering from triple negative breast cancer. These are real photographs. These are real struggles.

Regardless of their political standings, it's painfully clear that these four women of Birmingham have a much bigger fight on their hands.

Please hear the stories from Brittney, Raquel, Whitni and Melanie, who bravely tell their stories to Cynthia, with photographs by David Jay. These photos capturing glimpses of breast cancer survivors' lives in Birmingham are part of Jay's The Scar Project: www.thescarproject.org

BRITTNEY BASS

Background Info

Age: 25
Age at Diagnosis: 24
Relationship Status: Married to Brandon Gray on April 18, 2012
Place of Residence: Birmingham, AL
Originally from Ensley, AL (parents still live there)
Career: Braids hair as a hair dresser
Diagnosis: Stage I Triple Negative Breast Cancer

During her diagnosis and treatment, Brittney was enrolled at Birmingham Southern College and then at the University of Alabama Birmingham (UAB), majoring in psychology and minoring in math. Obamacare enabled Brittney to receive the best possible care. She was struggling to stay in college to maintain her student health insurance since she was prepared to be kicked off her dad's health insurance plan at the age of 24. Fortunately, Obamacare extended coverage on her dad's policy until she turns 26.

Her Story

"I remember that whole day. I was doing hair for this lady's two daughters ages 5 and 7. It was their first time getting braids and it was taking a long time. I'm getting them to sing and making sure they have snacks so they won't cry," Brittney says, thinking back to the day she learned the results of a needle biopsy of a breast lump conducted just 48 hours earlier. "In the middle of all this, my phone rings and it's the doctor," she continues. "When you get a phone call from the doctor and it's after 5:00, you know it's something serious."

The doctor didn't mince words: Brittney's biopsy had come back positive for breast cancer, a rare and aggressive form called triple negative.

Somehow, Brittney held it together, just as she had during other trying times in her life: in 2005 in New Orleans as a student at Loyola University when Hurricane Katrina hit, and in April 2011 when her apartment in Fultondale, Alabama was condemned after tornados hit the state.

This time around, the challenge was to get the treatment she needed. Brittney found herself working to pay bills and worrying about what would happen if she couldn't stay in school and lost her student health insurance. At 24, she was past the age to be covered on her parents' health insurance policy. Fortunately, Brittney's dad, retired from the military, was able to add Brittney back on his health insurance plan thanks to The Patient Protection and Affordable Care Act, allowing children to remain on their parents' policies until age 26.

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RAQUEL SMITH

Background Info

Age: 29
Age at Diagnosis: 27
Parental Status: Mother of two children: Daughter, Rose, age 3; son, Robert, born Jan. 30, 2012
Place of Residence: Birmingham, AL
Career: Prior to diagnosis, Raquel worked at Enterprise Car Rental; currently unemployed and still undergoing physical therapy for a frozen shoulder
Diagnosis: Stage IIB Triple Negative Breast Cancer

Raquel was covered by health insurance off and on during her treatment for breast cancer. The biggest issue for her was complications from a pregnancy following her extensive cancer treatments and being forced to take a more difficult medical route since insurance wouldn't cover the more expensive, less painful alternative.

Her Story

From the moment she discovered she had breast cancer, Raquel Smith focused on doing anything she had to do to live a long life.

"I told the doctor, 'I have a little girl, and I need to be here for her,'" Raquel says.

While caring for her then one-year-old daughter, Rose, Raquel consented to the most aggressive treatment available for triple negative breast cancer: a double mastectomy, maximum chemotherapy, maximum radiation.

An unexpected pregnancy interrupted Raquel's treatment, and she struggled with blood clots and low platelets throughout. "By then," she says, "I'd lost my insurance -- I'd been kicked off and wasn't able to get it back because of a pre-existing condition. I ended up having to give myself six shots a day of a lower-cost drug instead of another option with fewer shots administered by the doctor because Medicaid wouldn't pay for it."

"I wasn't working by then, either, and my work insurance had dropped me," Raquel adds.

Her children, Rose, now 3, and Rob, 8 and 1/2 months, keep Raquel moving forward. They reveal "a generation of my life," she says.

WHITNI COLLINS

Background Info

Age: 26
Age of Diagnosis: 24
Relationship Status: Single
Place of Residence: Birmingham, AL
Career: Works as a Respiratory Therapist at Trinity Medical Center. She received her Bachelor of Science degree from UAB in 2010 and was enrolled in a nursing certificate program at Jefferson State University when diagnosed, but she's had to halt her studies there since her cancer diagnosis.
Diagnosis: Stage II Triple Negative Breast Cancer

Whitni hasn't been able to maintain a full-time schedule at work, due to the combination of illness/medical appointments as well as budget cuts at the hospital. Her having to deal with breast cancer without health insurance combined with her inability to work has resulted in her getting far behind on rent, etc. Cynthia has connected her to a representative from a local women's shelter as well as a lawyer who offered to help her stay in her apartment. Whitni has moved in with a friend for the time being.

Her Story

Whitni Collins has experienced turbulence on many fronts.

Whereas many young women diagnosed with breast cancer prioritize aggressive medical treatment in as timely a manner as possible, Whitni struggled with contradictory advice offered by her oncologist, a specialist in triple negative disease, and her mother, whose Seventh Day Adventist beliefs oppose current medical guidelines. The disagreements resulted in delays between diagnosis and chemotherapy, a decision not to complete all scheduled treatments, and less aggressive surgery than recommended for Whitni's diagnosis. "It's been hard," Whitni admits. "The back and forth really strained my relationship with my mom, and it's still not like it was."

Intensifying the conflicts is Whitni's belief that both her medical team and her mom have her best interests at heart. "My mom spent so much time with me that she ended up losing her job," Whitni says.

And Whitni's own financial stability was also challenged throughout the experience. Medical appointments and side effects from treatments alongside budget cuts at the medical center where she works as a Respiratory Therapist meant a cut in hours. Eventually, she fell behind on health insurance payments and was dropped from her policy. "When I tried to get my policy reinstated," Whitni says, "they had jacked up the price of my premium and told me they wouldn't cover anything related to breast cancer since it was a pre-existing condition."

Recently, Whitni was forced out of her apartment after falling behind on several months' rent.

MELANIE HOSKINS

Background Info

Age: 30
Age of Diagnosis: 29
Relationship Status: Married to Darrius Hoskins for four years
Place of Residence: Birmingham, AL
Career: Works in MRI/Radiology at UAB
Diagnosis: Stage II Triple Negative Breast Cancer

Melanie's work insurance covered her many of her treatment costs for breast cancer. In anticipation of potentially losing her fertility as a result of chemotherapy, Melanie sought help from a fertility specialist, but costs were extreme even with financial assistance from the organization "Fertile Hope."

Her Story

Melanie Hoskins had the health care insurance coverage she needed to undergo treatment for the triple negative breast cancer she was diagnosed with at age 30. Even with insurance, though, she had to cover some steep co-pays throughout, especially for the Neupogen injections she needed to help increase her white blood count during chemo.

She was also unprepared to handle the cost of fertility treatments that she underwent in anticipation of chemotherapy and the possibility of infertility that is a common side effect. "The infertility specialist told us [Melanie and her husband, Darrius] that we could get assistance from an organization called Fertile Hope," Melanie says, "but we would still have to come up with $5,000-6,000. Plus, we had to act fast since I needed to start treating the cancer. We're thinking, 'How are we gonna do this?'"

Though family members and friends offered to pitch in to help pay for medical expenses, Melanie and Darrius took a more creative route to raising the money. "We designed bracelets and started selling them," Melanie explains. "Then, we designed some t-shirts for our Race for the Cure team, and other people started wanting to buy them."

"We were lucky that we found a way to afford everything," Melanie says. "We're ready to move forward and start a family in the next year or so."

(Thank you Cynthia and David for sharing this story. Thank you Brittney, Raquel, Whitni and Melanie for sharing your struggles.)

Cynthia Ryan blogs at http://cancerhitsthestreets.wordpress.com/.