Everyone copes with a lung cancer diagnosis in their own way. When Frank Sierawski’s doctor told him he had stage 4 non-small cell lung cancer in 2014, his first thought was, “Let’s go. What are the next steps?”
His wife, Katijo, had a much different reaction. “I was like, ‘Oh my gosh, I’m going to lose my husband,” she says.
The diagnosis came out of left field for the Omaha, Nebraska-based father of three young boys. Most people who are diagnosed with lung cancer are age 65 or older. Sierawski was only 34. He’s also an avowed nonsmoker.
Finding a sense of community at the LUNGevity Foundation’s HOPE Summit helped the couple regain their equilibrium. This annual survivorship conference brings together survivors and people with lung cancer to share information, resources, and advice to help them live longer and better.
The Sierawskis attended their first HOPE Summit in 2015, and they’ve been coming back every year since.
“Our first conference had 11 people in it. Then it was 25. And then it was 50,” Sierawski says. “Then it was 500 the last year.”
Even as the group grew, it remained close-knit. “We have met so many fantastic people through LUNGevity,” adds Katijo. “Now we have a whole community and family.”
As the country’s leading lung cancer organization, LUNGevity offers research, education, and support, all of which are critical for people with a disease that claims more than 130,000 lives each year.
Janet Wohlmacher learned about LUNGevity after her diagnosis in early 2020. A groin injury that happened when she tripped while walking around her Hillsborough, New Jersey, farm led to the discovery of a 6-centimeter cancerous lesion in her leg. Doctors traced the original tumor to her lung.
“My husband was asking the doctor a million questions, and the doctor asked, ‘Where are you getting your information from?’” Wohlmacher recalls.
When her husband replied, “LUNGevity,” the doctor said, “That’s a good one.”
“It helps to read about what other people are going through. Sometimes you find out about stuff you hadn’t heard before, like a new drug or drug combination,” she says.
If Wohlmacher ever needed good advice, it was then. Not only was she dealing with cancer that had spread to her leg and brain, but she had to undergo surgery and other treatments right in the middle of the COVID-19 pandemic.
It was a traumatic time. She had to leave the hospital the day after her brain surgery because the ICU was so overfilled with COVID-19 patients. Her doctors put her on a steroid drug, which caused a reaction so severe that large chunks of her skin peeled off her body. When her doctors pulled her off the steroid, her tumors started to grow again.
After getting chemotherapy and a few different drugs targeting her cancer’s EGFR mutation, her cancer seems to have stopped. The last two scans showed no evidence of growth.
From her doctors’ perspective, no change is a good thing — a “home run.”
Wohlmacher isn’t quite as satisfied with her progress. “I want it to shrink,” she says.
For the estimated 2.8 million Americans who care for someone with cancer, like Katijo Sierawski, LUNGevity offers another summit. Called COPE, it provides the tools caregivers need to better manage their loved one’s care.
“I always feel like the caregivers are in such a helpless position because they’ve just got to sit and watch,” Sierawski says. “Caregivers certainly carry the burden. And once the cancer is over, the caregiver still has to carry that burden.”
Katijo says it’s been helpful to meet other people who see cancer from a caregiver’s point of view, since they have different worries than people with cancer. “It is nice being connected with individuals who are more like you,” she says.
Sierawski was lucky, in a sense, because his cancer tested positive for the anaplastic lymphoma kinase (ALK) gene mutation. That meant his doctors could treat his cancer with a recently approved targeted drug, crizotinib (Xalkori). He started on the medication and had surgery to remove the main tumor, along with part of his lung.
A few months later, in early 2016, Sierawski learned that the cancer had spread to his brain. Treating it required another procedure, gamma knife radiosurgery. He eventually switched to the targeted drug alectinib (Alecensa), which cleared up the cancer in his brain. He still takes Alecensa daily.
Today there are no signs of his cancer. “They don’t want to call me cancer-free,” he says. “They want to call me ‘no evidence of disease.’ I don’t really care what they call me.”
Grateful that his cancer has retreated, Sierawski pays it forward by sharing what he’s learned during his journey. The HOPE Summit gives him and other lung cancer survivors, “a voice to tell our stories,” he says.
Katijo says their goal at these events is to “erase the stigma that goes along with lung cancer and be a support system for people who are recently diagnosed.”
Wohlmacher continues to investigate her options, trying new drugs and combinations of treatments in an attempt to reign in her cancer. Her diagnosis has reinforced in her the importance of persistence.
“I’ve always read stories of people saying you have to be your own advocate. Never has there been a truer statement than that,” she says.
Wohlmacher is realistic, but steadfast about her future. “This is the hand I’ve been dealt. I can sit back and let it take over, or I can figure out what I can do next. What choice do I have?”