Lung Cancer – Not Just a Smoker’s Disease
It started as a dry, persistent cough and a straining pain in her neck. Those were the only two symptoms Network Health member, Erin Sarauer, experienced. As the mother of three boys, Erin takes care of herself and stays active. She knows the importance of staying healthy for her children and her husband, who is legally blind and has his own daily struggles. Erin figured she had no history of illness, so it couldn’t be anything serious and decided to wait for the cough to go away on its own.
A month later, Erin was still coughing, so she decided to go see a doctor. She was diagnosed with pneumonia, then fungal pneumonia, but she still felt like something else was wrong. Finally, Erin made an appointment with the pulmonology office at Ascension NE Wisconsin St. Elizabeth Hospital. Dr. Bryan Avery examined her and did a bronchoscopy and lung biopsy. The day after this procedure, Erin received a call to come in and review the results of her biopsy. At her appointment, Dr. Avery said, “I have tough news for you kiddo, you have cancer.” Upon hearing this news, she passed out.
When Erin came to, she was shocked. “How is this possible, I’ve never even smoked a cigarette?”
Dr. Avery also didn’t understand why a young, healthy, non-smoker would be afflicted with lung cancer. They were surprised to learn that 10 to 15 percent of new lung cancer cases every year are among people that have never smoked. Now that Erin had her diagnosis, the next step was to determine the stage of her cancer with a PET scan.
Erin began seeing Dr. Kamal Abbi as her oncologist. Erin says, “I feel so lucky that I was paired with Dr. Abbi at St. Elizabeth. He’s the most compassionate, kindest oncologist.”
Erin anxiously awaited the results of her PET scan. Dr. Abbi returned to her room and said the words that Erin will never forget, “Unfortunately, your cancer has metastasized. It has spread to your lymph nodes, spine, ribs and sacrum.” Erin was given only six to twelve months to live. She says, “As a patient you have two choices, either you’re going to fight this and educate yourself, or you’re going to let the decisions be made for you.” Erin was not going to give up.
While Erin was in the hospital recovering from her procedures, she was visited by Yvonne Morrow, a nurse care manager with Network Health. Erin was impressed that she didn’t need to request a care manager, Yvonne showed up and told Erin she was there to provide support and help manage her symptoms.
Yvonne remembers her trip to the hospital to meet Erin. She says, “I knew Erin was going to fight this cancer with everything she had. I wanted her to know that my job was to support her on that journey. As care managers, we are a trusted resource for a person who is going through the worst time of his or her life.”
Throughout their relationship, Yvonne provided advice and medical direction. She also helped Erin focus on the mind/body connection and manage the stress that comes with her diagnosis.
When Erin was discharged from the hospital, her husband asked about having a genomic test done on the tumor. Not understanding what that meant, Erin scheduled her first IV chemotherapy session.
Later that week, Erin learned that Dr. Avery had been proactive and sent her tissue sample from the bronchoscopy for genomic testing. She was Epidermal Growth Factor Receptor (EGFR) positive. Now Erin had options. She could continue with her scheduled IV chemotherapy or take an oral chemotherapy, called a targeted therapy. Targeted therapy targets the tumor cells instead of killing all the cells like IV chemotherapy. Erin chose the targeted therapy option and was prescribed Tarceva (erlotinib).
After being on Tarceva for three months, Erin had her first follow-up scan. All the cancer cells had shrunk. Erin didn’t let herself get too excited about the results. She knows there is no cure for lung cancer, which she attributes to the stigma of lung cancer. Erin says, “The general public believes, even subconsciously, that people who smoke get lung cancer and people who get lung cancer deserve it. There’s a lot less research, funding and awareness about it.”
A year and a half into her treatment, Erin became dizzy, had blurred vision and couldn’t walk. She went in for an MRI. The results showed that Erin had developed 24 brain metastases (mets). Dr. Abbi switched her to Tagrisso, a targeted therapy option similar to Tarceva, but with less harsh side effects. When she went back for her rescan 17 day later, Erin learned that 22 of the 24 mets had been eliminated.
To remove the two remaining brain mets, Dr. Abbi recommended whole brain radiation. The day before her radiation began, Erin attended a dinner sponsored by The Chris Draft Family Foundation. Former NFL player Chris Draft started this foundation as a tribute to his late wife Lakeasha “Keasha” Rutledge Draft, whom he lost to cancer in December 2011. Like Erin, Keasha was a young, healthy, non-smoker diagnosed with stage four lung cancer that had spread to her brain. Unlike Erin, Keasha’s cancer was not genomic and she didn’t have a targeted therapy option available.
At the dinner, Erin met Dr. Philip Bonomi, an oncologist at Rush Clinic in Chicago. She scheduled an appointment with Dr. Bonomi and his radiologist, Dr. Gaurav Marwaha. After reviewing Erin’s records and assessing her health, they recommended Stereotactic Body Radiation Therapy (SBRT), which allows the doctors to target brain tumors with precise radiation.
Erin received SBRT for her two remaining brain mets from Dr. Christopher Schulz and Dr. Robert Mueller, a radiation oncologist and brain surgeon team at Froedtert Hospital. This was done as a minimally-invasive outpatient procedure.
When Erin followed up with Dr. Abbi’s team, they told her they were changing the protocol for lung cancer patients who get brain mets. Erin felt a huge sense of strength and accomplishment. Because of her experience, future non-smoking EGFR positive patients would be offered the option of targeted therapy rather whole brain radiation. That was the moment she became an advocate.
Throughout Erin’s advocacy journey, she has met many influential people through Team Draft, an initiative of The Chris Draft Family Foundation. Before Chris’ wife passed away, she asked Chris to use her experience to work toward finding a cure for lung cancer. Chris says “It’s only recently that doctors would even think of lung cancer as being something that could be hereditary. The public decided a long time ago that if we could get people to quit smoking, we could stop lung cancer.” Chris is keeping his promise to Keasha by working with individuals and organizations to promote lung cancer awareness and end the association of lung cancer with smoking.
Team Draft identified Erin as a stand-out survivor and designated her as one of Draft’s PicksTM. These exemplary individuals are identified nationwide and act as advocates and provide support to lung cancer patients in their area.
Today, Erin’s cancer is in remission. She is passionate about raising awareness of lung cancer by sharing her story. She has spoken at churches, the St. Elizabeth Hospital Foundation Health Outing and she cohosted the Shine the Light on Lung Cancer event in November 2018. Erin has traveled to Washington D.C. to meet other survivors and break down the barriers for lung cancer research. “It’s my goal, and my next step, to form a support group for cancer patients in this area. Not a lot exist for this particular diagnosis in the Fox Valley Area, so I’m really hoping to get something started through St. Elizabeth to have some greater support networks and activities.”
For more information about lung cancer or to support this cause, visit the LUNGevity website.