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Alicia Neubauer of Rockford wore a plain black cotton dress and black underwear on her 40th birthday party.
The dress harmonized with the short black curls that framed her face that night, which was a contrast to the previous year, when her head was shaved in anticipation of her first cycle of chemotherapy.
For the past year, Neubauer's life has been marked by breast cancer treatment, surgery, medication and many treatments. And a lot of learning.
Neubauer denied the statistics that almost all breast cancer patients experience when their hair falls, swell their bodies with chemicals and have their breasts removed to stay alive.
One in eight women develop breast cancer.
Thirty percent of men and women who have or have had breast cancer die after the disease has spread to other parts of the body, a condition known as stage 4 metastatic breast cancer.
The median life expectancy after a diagnosis of metastatic breast cancer is three years.
Every year, between 2% and 5% of breast cancer funding goes to metastatic breast cancer research.
Neubauer thought it was what people needed to know about breast cancer.
"Depending on the year, between 2% and 5% of all breast cancer funding at the national level goes to metastatic breast cancer, the only breast cancer that people die from," said Sonya Negley, director executive of METAvivor, an organization dedicated to raising awareness. metastatic breast cancer and the lack of funding it receives despite a 100% mortality rate.
"The rest goes to the early stages (cancer), prevention, quality of life, programming and awareness campaigns, which is good," said Negley. "Nobody says that these things are not important. But people are dying of metastatic breast cancer. So we focus more specifically on phase 4. We want to extend life. We want to end the death of this disease. "
Passage from 40 to 40K
Last summer, Neubauer was diagnosed with stage 3 invasive ductal carcinoma triple-negative breast cancer.
Even after intensive treatments and surgeries to kill and eliminate all the cancer cells that were in her body, she knows that she is now one of the thousands of men and women who could to be part of that 30% – people whose lives could be shortened metastatic breast cancer – and nothing can change that. For the moment.
Inspired by what she learned as a patient and from her medical service providers at the Swedish-American Regional Cancer Center and at the University of Wisconsin Carbon Cancer Center, Neubauer organized a rally funding for research on metastatic breast cancer.
She sold tickets and invited all her friends and all those who wanted to support the cause.
His party was both a party and an education.
There was a lot of smiles and cuddles, delicious food, a DJ and a rock band. There was not a sea of pink shirts, balloons, boas or ribbons.
Breast cancer is a multi-billion dollar industry funded by public and private health organizations, as well as businesses and non-profit organizations. Much of this money is collected each month of October during National Breast Cancer Awareness Month.
While the Pink Ribbon Campaign has done a lot to raise awareness about breast cancer and the fight against it, focusing on finding early-stage rather than late-stage diagnoses research, which saves lives, has become a source of frustration for people with disease.
According to a study conducted in 2017 by the National Cancer Institute, more than 150,000 women in the United States were living with metastatic breast cancer, or MBC.
The study also estimated that the number of women with MBC was increasing, largely due to improved treatments.
However, the number of deaths due to MBC each year – 40,000 – has remained relatively stagnant over the last 20 years.
Neubauer's goal is to raise $ 40,000 for research conducted by MBC.
She cashed $ 43,000, which was donated to the UW Health / Carbon Cancer Breast Cancer Center.
"Our best hope"
On the night of his birthday, Neubauer called on other people to showcase his message More for Stage 4.
His oncological surgeon, Dr. Lee Wilke, director of the UW Health Breast Health Center, was there to say a few words and mingle with the guests.
Wilke assured the partygoers that the money raised that night would be used wisely.
"In addition to eliminating cancer, we are conducting a lot of research," Wilke said. "Many of us are researching new treatments and new ways to make sure cancer does not come back."
Then there was Mary Gooze.
Gooze, also from Wisconsin, has been living with MBC for four years.
In recent years, she has spent much of her time swimming in water bodies around the world to raise awareness of the plight of MBC patients and raise funds for research.
She told the story of a recently deceased friend: a wife, a mother and her grandmother. She lived two and a half years after her diagnosis.
"I'm in my fourth year," said Gooze. "I keep my fingers crossed."
"Research is our best hope," she said. "Your resources and donations give researchers the resources they need to give me more time."
Jane Jachowicz, a nurse navigator at the UW Health Breast Center, said she was unable to attend the Neubauer party.
"It's fantastic, and it's so necessary," said Jachowicz about the Neubauer campaign. "There are many studies on treatment and prevention, but to fully understand how to prevent cancer and understand the evolution of its evolution, we need to better understand what is happening on the other side of the disease. . "
Jachowicz helped Neubauer manage his illness this year. She has helped thousands of people in her career. Its goal is to help patients get what they want and what they need when they undergo cancer treatments.
"In the early stages of breast cancer, there is a lot of hope," Jachowicz said. "There is a lot of talk about treatment, many options and clinical trials. … But once someone becomes metastatic, there is a huge loss of hope. "
"Through research, we can say," There is hope. " … You have the opportunity to help yourself or others. Using this research, we may be able to have better pain management. Maybe you can have better energy. So it is so important, so poorly understood and so poorly funded. "
"Good for everyone"
"Tomorrow begins October, which is often difficult for breast cancer survivors," wrote Neubauer on his Facebook page.
It was September 30th and she wanted to thank the people who helped her fundraising.
"Many good things in life are writhing with bad intentions. … If you buy something pink, check where you actually go, "she wrote. "Too often, only a very small portion of the money raised to raise awareness about breast cancer is dedicated to research or survivors."
These feelings can often be aggravated when patients have received a terminal diagnosis.
"Every October, a flurry of pink information reaches people that the average donor or consumer does not even understand where the money is going," Negley said. "Every day, 113 people die from metastatic breast cancer. … A whole month has been covered with pink boas and pink ribbons – a dollar here and a dollar there that can save a life for those products that mean nothing. It can be quite devastating.
Groups such as METAvivor are striving to re-educate the public while giving terminally ill MBC patients a sense of community and a common goal.
The "METAvivors", as they call themselves, raised $ 1.6 million for MBC research in 2017 and are poised to fund $ 2 million this year. They organize events across the country to raise money. They are also addressed to lawmakers in Washington, DC.
"If we solve at step 4, it's good for everyone," Negley said.
Neubauer said he was shocked to learn the lack of funding for research conducted by the MBC.
For her – an architect turned skateboard shop owner – funding to support science to extend life or avoid death should be the priority.
"We should focus on how to turn this deadly disease into a chronic disease," she said. "I have been living with asthma since I was 8 years old. A hundred years ago, I would have died if I did not have access to the medicines I have today because of medical research. "
Corina Curry: 815-987-1371; [email protected]; @corinacurry
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