An estimated 40,450 women will die of breast cancer this year – as well as 440 men – 6.8 percent of all cancer deaths, according to the National Cancer Institute. So in an era when there’s so much focus on improvements in the early detection and treatment of breast cancer, and on the growing number of patients who survive, Laura Twomey feels she must draw attention to the toll breast cancer still claims. "It’s hard to get advocacy when everybody dies," she said.
Laura Twomey of Richfield Springs is among the 3.1 million Americans living after a breast cancer diagnosis.
But she doesn’t know how long that will last.
Twomey has metastatic — or Stage IV — breast cancer, for which there is no cure, only a life of constant treatments to try to stabilize the cancer for a while and give the patient a decent quality of life.
Twomey, who has lost her hair three times from chemotherapy, was first diagnosed 10 years ago at age 37 when she had three young sons.
“When you looked up the (survival) statistic online, it wasn’t very promising. It was originally a couple of years. That’s hard to get your mind around,” she said.
Although she has survived for 10 years, she’s aware that most metastatic breast cancer patients aren’t so lucky. Twomey belongs to a Facebook group for metastatic breast cancer patients and their caregivers around the world.
“It’s very sad, though, because most of the people there were diagnosed in 2014 and 2015,” she said. “Everybody else is dead.”
An estimated 40,450 women will die of breast cancer this year — as well as 440 men — 6.8 percent of all cancer deaths, according to the National Cancer Institute.
So in an era when there’s so much focus on improvements in the early detection and treatment of breast cancer, and on the growing number of patients who survive, Twomey feels she must draw attention to the toll breast cancer still claims.
“It’s hard to get advocacy when everybody dies,” she said.
Twomey wants to see more understanding of metastatic breast cancer; more research into it and not just early stage; and a support group just for those with metastatic disease and its unique concerns.
Twomey’s survival is a testament to the new drugs and treatments that have come out over the past decade, said Dr. Timothy Korytko, chief of radiation oncology at Bassett Healthcare Network.
“We know a lot that we didn’t know. But there’s still many unanswered questions about how to manage metastatic breast cancer,” he said.
Some of the current debates include whether metastatic patient should have surgery or just chemotherapy, and whether patients with cancer that has just spread to a few small spots should be treated differently than patients with more widespread cancer, Korytko said. Investigators are looking into whether the first group should receive radiation in those spots, he said.
Although most of the patients he treats have early stage cancer, Korytko said he’s seeing more patients with metastasized cancer, a sign that more of these patients are living longer. Now radiation gets used to improve quality of life by spot treating pain and other problems, he said.
Unlike Twomey, most patients with metastatic cancer were diagnosed before the cancer had spread. Often they’re treated initially and the cancer later recurs, sometimes five, 10 or 15 years after the initial diagnosis, Korytko said.
And once the cancer metastasizes, patients spend the rest of their life in uncertainty. “When I take care of patients like that, it’s living from treatment to treatment, knowing you’re going to get treatment again,” Korytko said. “And the biggest worry is what’s going to happen if it doesn’t work.”
Twomey said doctors use how she is feeling, tumor markers in her blood and scans of her body to see how well the treatments are working. She referred to the period between tests as “scanxiety.”
How does Twomey live with 10 years of treatments and wondering when she’s going to die?
“I don’t have a choice. My children were 6, 9 and 11 when I was diagnosed. How do you not just put your head down and keep fighting?” she asked.
Twomey kept working until two years ago.
“I volunteer with the Scouts. My three boys are all Eagle Scouts. I volunteer at the library if I feel up to it. I participate in church if I feel up to it. I make dinner every night,” she said. “I try to stay as normal as possible because that’s what I want for me and my family.”
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