Updated: October 11, 2021 05:03 PM
Created: October 04, 2021 07:22 PM
ROCHESTER, N.Y. (WHEC) — It’s October and that means it’s Breast Cancer Awareness Month. It’s the month we celebrate survivors, encourage early detection, and cities are swimming in a sea of pink. But that iconic pink ribbon does not tell the whole story. There's a part of the breast cancer journey that no one understands, few people talk about, and it gets less than 5 percent of breast cancer research funding.
I'm talking about metastatic breast cancer, also known as advanced or stage 4 breast cancer.
That's when cancer has spread from the breast to other parts of the body. So metastatic patients have embraced a ribbon of three colors: green, teal and pink. The green represents the triumph of spring over winter; the teal stands for healing, and the pink tells us where the cancer originated.
There is no cure for metastatic breast cancer. The average life expectancy is three years. But that does not mean this is a journey without hope. The story of Palmyra resident, Pam Polashenski is proof of that. She appears to be the picture of health. The athletic 52-year-old doctor is an avid volleyball player, hiker, boater and in her spare time, she loves waterfall rappelling in Costa Rica.
But in October of 2018, she learned the breast cancer she had tamed a year before was back — spreading with a maniacal virulence throughout her back and bones. She found out just an hour before a volleyball game.
"And on the team was my husband and one of my daughters,” Polashenski said. “And all of my daughters were local at the time, so I asked the other two to come join us for a drink where we play volleyball. And we kind of went into an unused room and I told them."
That day marked the beginning of a years-long effort to find drugs to keep the cancer at bay. By the summer of 2021, chemo to keep her cancer at bay stopped working.
"And I was both kind of preparing myself for the end of my life but also kind of advocating hard to get my hands on this medication that my oncologist said could be a game changer," Polashenski said.
The medication is a drug effective in lung cancer patients with a rare gene mutation, a mutation that Polashenski shares. That drug had never before been tested on other types of cancers. Initially, her insurer refused to pay for the drug which costs $18,000 a month, and the drug manufacturer refused to provide it for free.
"And this was happening in a week when I was really doing poorly. I was started on 24-hour, around-the-clock oxygen. I couldn't walk unassisted. My daughters were helping me dress myself. It looked bad,” Polashenski said.
And then, in an eleventh-hour decision, her insurer finally agreed to pay for the drug that would prove to be nothing short of miraculous.
"So I just remember on Monday - I started it on Thursday - a fog lifting from my head," Polashenski said. "We checked my oxygen levels and I was no longer needing the oxygen so I was able to come off that, and I was walking."
Weeks after receiving the drug, she was taking four-mile hikes and sliding down water slides with her nephew at Seabreeze.
It's important to note that Polashenski has a rare gene mutation, and this new medication is specific to her mutation, but her story does serve as proof that answers lie in a lab with a researcher who has the funds to find them.
Lipson Cancer Center oncologist Farhan S. Imran said that we’ve made enormous strides in treating advanced breast cancer. He points to new therapies like immunotherapy. He says those therapies are allowing many to live well for longer. He points to clinical trials available to many that are finding effective therapies.
But statistics tell us breast cancer will eventually spread to other areas of the body in 30% of those diagnosed with the disease. Women living with advanced breast cancer often eventually qualify for social security disability insurance and that makes them eligible for Medicare. But often in their last months of life, these patients are denied access to treatment that Medicare would have and should have afforded them because the application process can take years! Congressman Joe Morelle (D, NY-25) is one in a bipartisan group of lawmakers who wants to change that. And for Morelle, the mission is personal.
"I lost a daughter to breast cancer when it metastasized so I know first-hand the pain,” Morelle said.
Morelle's daughter, Lauren, shared with readers who followed her 18-month battle with stage 4 breast cancer.
The Metastatic Breast Cancer Access to Care Act would cut the red tape, allowing those with metastatic disease to get immediate access to Social Security, disability insurance and Medicare.
A local opera star knows the extraordinary challenges of living with metastatic breast cancer, and now her journey is a book, years after her untimely death. Amy Schnitzler was 26 and was preparing to attend graduate school for opera performance when she was diagnosed with stage 4 breast cancer. It was then the Rochester native put pen to paper, chronicling her journey in a prose as beautifully lyric as her soprano arias that filled performance halls.
Her death in 2019 did not silence her voice. Her mother published her writing in a book titled, "My Terminal Life, Cancer Habitation and Other Life Adventures".
There’s hope for those facing advanced breast cancer right here in the Rochester area. The Breast Cancer Coalition of Rochester’s efforts toward finding effective treatment are the oldest in the state of New York. On Wednesday, Oct. 15 from 1 p.m. to 5 p.m. the organization will hold an 18th annual Advanced Breast Cancer: Tools for the Journey seminar.
Click here for more information.
Wednesday is national Metastatic Breast Cancer awareness day. It's a day we recognize the thousands living with advanced breast cancer and the research funding needed to find a cure. The Breast Cancer Coalition of Rochester is holding a half-day seminar on Wednesday that will cover everything from medical management to how to find clinical trials. Click here to register.
Then Wednesday night, Rochester landmarks will be among more than 225 around the country that will be lit up in the colors of metastatic breast cancer, teal, pink, and green. Less than five percent of breast cancer research funding goes toward fighting metastatic disease. To donate, click here.
To donate to BCCR, click here.
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