Biomarker Testing Helped Julia Find a Path Forward

For Julia, learning she had a ROS1 biomarker helped reveal treatment options that were once out of view. 

For months before her cancer diagnosis in 2016, Julia had not been feeling well. She was experiencing shoulder pain, breathlessness, and frequent infections — things she wrote off as being a busy young mother. “I had to stop an exercise class because it interfered with my girls’ dancing lessons. So, I just [attributed my] breathlessness to getting unfit.”

But then Julia’s symptoms progressed. After repeated infections, hospital stays, and lab tests, Julia learned she had stage 4 non-small cell lung cancer. 

Julia was shocked by the diagnosis, but she was determined to take on whatever came next. “When they told me that it was stage 4 and there was nothing else they could do [by standard treatment measures], I was just like, no, I'm not having that. I've got 3 kids. I can't be done at lung cancer."

Julia started chemotherapy treatment, and her care team sent a sample of her biopsy off for testing. This included a biomarker test, a simple lab test that looked closely at her cancer cells. Biomarkers can be proteins, genes, or mutations (gene changes). They tell doctors the subtype of cancer people have. So, it can guide a patient's care team in choosing the best treatment options for them.

Julia's test results revealed that her cancer cells had a mutation on the ROS1 gene. This means her tumor tested positive for the ROS1 biomarker and that she has ROS1+ lung cancer.

Initially, when her doctor told her the results, Julia felt overwhelmed. She remembers immediately turning to Google and typing in, “What is ROS1+ lung cancer?” 

As she learned more, though, the news offered Julia hope. It revealed a new path forward. She had been experiencing chemotherapy side effects that were becoming very hard to manage. Her biomarker test results meant that she was able to switch from chemotherapy to a more targeted treatment designed for ROS1+ tumors, without the harsh side effects of chemo.

Who Has ROS1+ Lung Cancer?

ROS1 is more often found in younger people, women, and people who have never smoked. Around 1% to 2% of people with lung cancer test positive for ROS1. They usually have a type of non-small cell lung cancer called adenocarcinoma.

Discover More About ROS1+ Lung Cancer

Today Julia is a dedicated lung cancer patient advocate. Biomarker testing is one topic she is passionate about sharing with others. 

Like many people living with lung cancer, Julia has experienced challenges throughout her journey. Here are 4 things she wants all lung cancer patients to know:

1. Stay active. Julia manages some of the long-term side effects of her lung cancer treatment through exercise. "The key is to try and stay as active as you possibly can," she says, adding that exercise can bring physical and mental stress relief during and after treatment. A walk with her family is one of Julia’s favorite ways to stay active. 
    
2. Take small steps — they can be powerful. During treatment, Julia made a point to get up and get dressed every morning. She wanted to reassure her young children that she was feeling okay. “I think you feel better if you're dressed rather than sitting around in pajamas all day,” she says, “and it's good for [your kids] to see as well.” Although some days were harder than others, Julia found that doing small everyday tasks helped her feel a little better. Her experience is a reminder not to overlook the familiar routines of daily life. Even a simple step, such as getting dressed, can help bring a sense of normalcy and control during a challenging time.
    
3. Keep living life and listen to your body. As Julia gets older, she sometimes finds it hard to pinpoint what is causing her aches and pains. "I don't know what aches are from the [cancer] treatment and what aches are [related to] menopause and my age." It's important to have a care team you trust and feel comfortable talking with openly. If something does not feel right or you notice a change in your body, do not hesitate to reach out to a member of your care team. They are there to listen, answer your questions, help you feel supported, and manage any side effects or concerns you may have. “At the end of the day," says Julia, "we all know our own bodies, and we know if something is not quite right.”
    
4. Talk (and learn) about biomarker testing. Like many patients and caregivers, Julia had never heard of lung cancer biomarkers before her diagnosis. She was determined to understand what the ROS1 gene change meant for her cancer experience. Over the years, Julia has learned a lot about ROS1+ lung cancer, biomarker testing, treatment options, and managing side effects. She is actively involved with lung cancer support communities, including ROS1ders UK, a charity located in her hometown of London that is dedicated to raising awareness and providing education about ROS1+ lung cancer.

Julia's story highlights why it's so important to talk about biomarker testing. Many people living with lung cancer have never heard of biomarkers and may not know what questions to ask their care team. The more we talk about biomarker testing, the more people with lung cancer can better understand their options and feel confident advocating for their care.

No two lung cancer experiences are exactly alike, but no one should have to navigate their experience alone. If you or someone you love is living with lung cancer, one of the best things you can do is stay informed. Learn more about biomarker testing, connect with others in the lung cancer community, and remember that there are resources available to help you every step of the way.