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October is Breast Cancer Awareness Month, 40.920 women in the US this year. Most Americans know about Breast Cancer Awareness Month by the hard-to-miss pink paraphernalia that means solidarity – including breast cancer pink ribbon, rah-rah slogans like "Think Pink," and other catchphrases that suggest breast cancer is something you can " survive "and" beat. "
Yet that kind of language implies that when a patient is diagnosed, her (or his) happiness hinges on the success of treatment. It is a very old way to present cancer survivorship; any cancer diagnosis is scary, as well as light human mortality. And while this annual growth has been achieved, and the causes of cancer are many of the same. Susan G. Komen, Metastatic Breast Cancer – The Incurable, late-stage Bones, Liver, Lung or Brain – Do not Feel Hope During October. And many feel alienated and even revolted by the language of hope that the campaign pushes on the public.
Breast cancer remains the most commonly diagnosed cancer among American women – one of the largest cancers in the world. leave them cancer-free.
"The whole pink-ribbon, breast cancer awareness campaign is focused on getting your mammograms and doing self exams, it says you're getting better, you're better, and you're going to celebrate run in pink tutus, Rhonda Brewer of Michigan told Salon. "For those of us with metastatic breast cancer, we will never have that ring-the-bell-moment and say our breast cancer is cured. We are like the kids sitting in the back of the classroom getting an F, and it is difficult to walk in and see everything pink. "
The 49-year-old single is one of the 6 to 10 percent of breast cancer cases that are initially diagnosed metastatic. Her stage 4 diagnosis in May 2017 came as a surprise, just had a clear mammogram. It turned out she had dense breasts; her tumor, which spread to her lymph nodes, could not be detected by a mammogram due to this.
"The awareness [campaigns] have been about mammograms, but there has been a lot about dense breast tissue, "she said. "The first couple months I was in disbelief and shock and had intense amount of fear of dying and leaving my children, because I am a single parent."
According to a 2010 study from the European Cancer Organization (ECCO), only 5 percent of total cancer research is being investigated. More recent statistics corroborate this. It is unclear how many people die from metastatic breast cancer, as it is required to report to metastatic diagnosis.
Lara MacGregor of Kentucky knows what it is like to live on both sides of the breast cancer diagnosis spectrum – which is one reason why she is trying to change the conversation.
"I really want to focus on what it means to be a survivor and what it means to live with cancer. It's a very good American perspective, okay, you're a survivor if you've been cancer-free. "It's taking you to the future rather than being in the now."
In 2007 at the age of 30, and 7 months pregnant with her second son, MacGregor found out she had stage 2 breast cancer. She had always lived a healthy life, she said, and had no family history of the disease. The diagnosis came as a surprise. After treatment, she was "cancer-free" for nearly seven years. In 2014, MacGregor's life took another turn when she was diagnosed with breast cancer once again. This time it was stage 4 metastatic breast cancer.
"I think you're diagnosed, you're surviving," she told Salon. "It's not something that happens after your treatment. I do not become a survivor when I ring the bell and finish chemo. Today, I am surviving so I am a survivor, and if I can never actually finish my career, then that is going to be a survivor. "
When she was first diagnosed in 2007, she refers to nurses spoke positively about her prognosis. They showed her "roadmap," but the second time around, they did not.
"It was staggering to me, the difference being diagnosed in the early stages of metastatic breast cancer," she explained. "There was no nurse navigator, no timeline on what to do next, it was insulated and it opened up to the door to a whole other world: the elephant in the pink room."
Prior to her second diagnosis, MacGregor became a social entrepreneur. She started a nonprofit called Hope Scarves, which collects and sends scarves to other cancer cases. MacGregor got the idea when she was diagnosed with a comment saying, "You can do this." The woman who smells MacGregor the scarves had worn the same scarves during her own treatment. She was so moved by the gesture that she went on to treat them to others in treatment. What started with MacGregor sending out two to three Hope to see you in your busy life: volunteers and staff send out 50 scarves on weekdays around the world now.
MacGregor gifted her first scarves to Roberta Szpara, who has also faced an early stage and late-stage diagnosis. Szpara told Salon she found out in 2016, after being cancer-free for seven years, that it had come back and spread to her lungs and liver.
"I guess in the early stages of diagnoses, there is always a sight, two to three years of hormone therapy," she said. "You are worrying your cancer can come back but you move on. Now having a terminal illness, it is very different and it is isolating. There is so much money and emphasis on awareness, but we need more research to extend my life. "
After MacGregor's first diagnosis, she encourages cancer patients to focus on surviving and beating the disease. But after the second diagnosis of metastatic breast cancer, Hope Scarves removed the language from its website that implied hope was only for those who "beat cancer."
"Hope is not only in cancer or cancer; hope is not exclusive to those people, "MacGregor said.
MacGregor said, "The goal is to reduce the incidence of metastatic breast cancer." In 2015, Hope Scarves established a metastatic breast cancer research fund. Today, a portion of each dollar donated to Hope Scarves goes to translational research.
"The thing that drives me crazy is not the extent of how many things are pink; I just really want that, "she said. "Everybody can define that difference – that's everyone's right – but for me, what does it mean to be metastatic breast cancer? extend people's lives who are living with the most advanced stage of breast cancer. "
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