Thursday, OCTOBER 16, 2014
VO L . 28 , N O. 2 9, 5 0 PAG ES , 4 S EC T I O N S
W W W.V O I C E -T R I B U N E . C O M
Dr. Beth Riley, Caroline Johnson, Lara MacGregor, Dr. Yoannis Imbert-Fernandez and Dr. Jason Chesney.
Twisting the Perspective on Cancer
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By LAURA ROSS Contributing Writer
o one dies of breast cancer. A startling thought, right? The truth is, no one dies of breast cancer in the breast – until it metastasizes to other parts of the
body. Caroline Johnson, founder of Twisted Pink, is a busy mom with three young children, including a son with multiple special needs. She was one month shy of her 40th birthday when she was diagnosed with stage III breast cancer in June 2013. A year of chemotherapy, radiation, surgeries and continued hormone therapy for estrogen positive breast cancer, was accompanied by participating in many community awareness and education events. When she learned that most popular breast cancer funding movements were donating only 25% to research and 75% to awareness programs, she decided to form Twisted Pink in June 2014 to fund research for metastatic breast cancer. Her resolve heightened when she learned that only about 2% of funds raised nationally actually goes directly to metastatic cancer research. Twisted Pink is committed to exclusively funding stage IV breast cancer research. Its mission is to raise awareness of the hidden statistics regarding metastatic cancer and gain funding to support metastatic research. According to the National Institute of Health, metastatic breast cancer is the leading cause of death in women 35-55 years old with 155,000 women living with metastatic breast cancer, with an average survival rate of 18-24 months. 40,000 of those women will die; a number that has not changed in over 20 years. Metastasis occurs when cancerous cells travel to another part of the body, typically the bones, liver, lungs and brain. No one dies from breast cancer that remains in the breast, but 20-30% of people originally diagnosed with early stage breast cancer will develop metastatic breast cancer, regardless of original stage, age, treatment plan or overall health. And, it is deadly. Currently there are no effective treatments, and a diagnosis of stage IV breast cancer is considered incurable.
“In Twisted Pink, I wanted to twist the model of that has metastasized to her bones. “When first diagawareness and the message to make it more accurate,” nosed in 2007, I found little comfort in ‘we love tatas’ Johnson said. “It’s not just beat cancer; be a survivor. or ‘save second base’ campaigns,” she said. “I didn’t We are all brave and strong. That’s all true and good, see the relevance of stringing bras in public places. I but you have to realize you might have it come back. never ran a race in a pink tutu. It all just seemed to That doesn’t mean you didn’t fight hard enough. It make light of a situation that scares me to my core.” “Breast cancer is not all pink and sparkly,” Macmeans we haven’t come far enough in research and we Gregor added. “There is a reality behind this disease want to change that.” When Johnson was in treatment, a friend made – people are dying of metastatic breast cancer. With an important connection for her with an intro- Twisted Pink, we want to twist the pinkness, not to take away from the celeduction to Lara Macbration, but to show the Gregor, founder of whole picture and bring Hope Scarves. Johnson awareness back to finding and MacGregor have a cure.” since become friends Johnson sees Twisted and support each other Pink as an active, grass in the efforts of their roots, local organization respective nonprofit that has a story to tell and organizations. awareness to raise. “PeoMacGregor was 30 ple celebrate ‘surviving’ years old and sevenbreast cancer, but they months pregnant when need to remember it’s not she was diagnosed with survived by everyone,” breast cancer in 2007. Johnson said. “RegardA friend mailed Macless of whether they were Gregor a box of scarves early or advanced stage with a note saying, at their diagnosis, 20-30% “You can do this!” It of those survivors could led to the creation of have the cancer metastaHope Scarves, a Lousize to other areas of the isville-based nonprofbody. And that, to me, it serving women expeis not something to celeriencing cancer. Hope metastatic breast cancer is the brate.” Scarves captures the leading cause of death in women “Once you are a metastories of women who static cancer patient, you have faced cancer, along 35-55 years old...155,000 women are in treatments until the with the headscarves are living with this with an average treatments stop working, they wore during treatyou run out of options, ment. The scarves are survival rate of 18-24 months... and you die,” MacGregor then dry-cleaned and 40,000 of those women will die... said. “There should be the scarves, survivor stories and scarf tying instructions are then passed more options for women with breast cancer and that along to another woman facing cancer, spreading a comes from research.” Johnson and MacGregor are embarking on a partmessage of hope. After six years of good health, MacGregor has nership with local cancer researchers at the James See Page A-2 suffered a reoccurrence of stage IV breast cancer
of funds raised nationally actually goes directly to metastatic cancer research
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