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Why some terminal patients feel alienated by breast cancer awareness month

October is breast cancer awareness month, a term aimed at increasing public awareness of a disease that is predicted to…

October is breast cancer awareness month, a term aimed at increasing public awareness of a disease that is predicted to kill 40,920 women in the United States this year. Most Americans know the breast cancer awareness month of the hard to miss pink accessories that mean solidarity – including the breast cancer pink band, rah rah slogans like “Think Pink” and other catch phrases suggesting breast cancer are something you can “survive” and “beat”.

But that kind of language means that when a patient is diagnosed, her (or his) happiness depends on the success of success. It is a western way of presenting cancer survival. Some cancer diagnosis is scary because it gives rise to light human mortality. And while this annual crusade has good intentions and gives money to research and organizations like Susan G. Komen, many of those living with metastatic breast cancer &#821

1; the unbearable late stage spreading beyond the chest to other organs such as bone, liver, lung or brain – do not feel hope in October. And many feel alienated and even upset by the language that hopes the campaign is pushing the public.

Breast cancer is the most common diagnosis of cancer among American women – less than one percent of the diagnoses occur in men – and while survival rates are increasing according to statistics, those with metastatic breast cancer are not able to have a plan that will leave them cancer-free.

“Whole pink ribbon, breast cancer awareness campaign is focused on getting your mammogram and doing self-test, saying if you are diagnosed you will receive chemotherapy, radiation, surgery and then you are better and we will celebrate and run in pink tutus, told Rhonda Brewer of Michigan for Salon. “For those of us with metastatic breast cancer, we will never have the time and say that our breast cancer is cured. We are like the children sit back in the classroom and get a F, and it’s hard to go into the shops and see everything pink. “

The 49-year-old single mother is one of 6 to 10 percent of breast cancer cases each year initially diagnosed metastatic. Her stage 4 diagnosis in May 2017 came as a surprise, as just a few months earlier she had a clear mammogram. turned out that she had tight breasts; her tumor that spread to her lymph nodes could not be detected by a mammogram because of this.

“Awareness [campaigns] Has Been About Mammograms, But There Has Been Too Much About Dense breast tissue “said.” The first few months I was in unbelief and shock and had an intense fear of dying and leaving my children, because I am single parent. “

According to a study by the European Cancer Organization (ECCO) 2010 5 percent of The total cancer research funding is used to investigate metastases. Newer statistics confirm this. It is unclear how many people die of metastatic breast cancer because no one needs report a metastatic diagnosis.

Lara MacGregor in Kentucky knows how to live at both ends of the breast cancer diagnosis spectrum – which is why she is trying to change the conversation about what it means to survive breast cancer.

“I really want to try to focus on what it means to be survivor and what it means to live with cancer. It’s like a very American perspective to be like, okay, you’re a survivor if you’ve been cancer-free for X months or years, “she told Salon. “It takes you to the future rather than being in the present.”

In 2007 at the age of 30 and 7 months pregnant with her second son, MacGregor discovered that 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 almost seven years. In 2014, MacGregor’s life took a new turn when she was again diagnosed with breast cancer. This time it was stage 4 metastatic breast cancer.

“I believe from the day you are diagnosed, you survive,” she told Salon. “It’s not what happens after your treatment. I will not be survivor when I call the clock and finish kemo. Today I’m survivor so I’m a survivor and if I can never ring the clock because I’ll never finish kemo, then it stole the opportunity for me to be survivor. “

When she was first diagnosed in 2007, she recalled that nurses spoke positively about her prediction. They showed her a “roadmap”, but the second time they did not.

“It was dizzying to me, the difference between early diagnosis and then getting metastatic breast cancer,” she explained. “There was no nurse navigator, no timeline of what to do now, it was isolation and it opened the door to a completely different world: the elephant in the pink room.”

Before her second diagnosis, MacGregor became a social entrepreneur. She started an ideally called Hope Scarves, collecting and sending scarves prepared with stories from people who have cancer against others in cancer treatment. MacGregor got the thought when she got scarves from a friend of a friend after her first diagnosis with a note saying, “You can do this.” The woman who sent MacGregor to the scarves had the same scarves during her own treatment. She was so touched by the gesture that she continued to present them to others in treatment. What started with MacGregor sends out two to three Hope Scarves a week in its living room, became a busy endeavor: volunteers and staff sent out 50 scarves a week all over the world now.

MacGregor gave his first scarves to Roberta Szpara, who has also met an early stage and late diagnosis. Szpara told Salon that she discovered 2016, after being cancer-free for seven years, that it had come back and spread to her lungs and lives.

“I suppose the diagnosis is early, there’s always an end in sight, two to three years of hormone treatment,” she said. “You worry that your cancer can come back but you move on. Now, a terminal illness is very different and it is insulating. There is so much money and emphasis on awareness, but we need more research to extend my life . “

Following MacGregor’s first diagnosis, she encouraged cancer patients to focus on surviving and killing the disease. But after her second diagnosis of metastatic breast cancer, Hope Scarves removed the language from her website, which implicit hope was only reserved for those who “beat cancer”.

“Hope is not just killing cancer or surviving cancer and celebrating how many years you’re cancerous. Hope is not lonely for them,” MacGregor said.

MacGregor said her goal is not to “tear down in the pink scene” , without raising awareness of the search to find a cure or a way to prolong the lives of those with metastatic breast cancer. In 2015, Hope Scarves established a metastatic breast cancer research fund. Today, part of every dollar donated to Hope Scarves is divided into translational research. 19659002] “What drives me crazy is not the extent of how many things are pink; I really wish that all pinkness led to something more meaningful, “she said.” Everyone can define it differently – it’s everyone’s right – but for me it comes in the form of research and then leads money to help people with metastatic breast cancer. .. for research that helps us find more treatment measures and extend people’s lives living with the most advanced stage of breast cancer. “

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