In January 2019, Jane Winer was being treated for non-small cell lung cancer near her home in Dallas when she started experiencing seemingly unrelated symptoms. She felt weak and fatigued, had trouble moving her hands and fingers, and often found herself trembling.

Her oncologist at the University of Texas (UT) Southwestern Medical Center, Dr. David Gerber, took a blood test, and immediately after he got the results, he admitted Winer to the hospital. The diagnosis: hypercalcemia, or excess calcium in the blood, which can cause excessive fatigue, gastrointestinal symptoms, and, most notably, neurologic symptoms.

Hypercalcemia is one of numerous disorders known as paraneoplastic syndromes. These diseases can occur in patients with any kind of cancer, but they’re particularly prevalent in lung cancer, affecting an estimated 10% of patients being treated for the disease. Paraneoplastic syndromes can be brought on by one of two cancer-related phenomena: Either the tumors secrete proteins or other substances that trigger the syndromes or the immune system reacts to the cancer in a way that affects normal tissues and organs, like the brain and nerves.

“Even though these many different conditions that all fall under the category of paraneoplastic syndromes, they are really all different diseases,” says Gerber, professor of internal medicine and population and data sciences in the Harold C. Simmons Comprehensive Cancer Center at UT Southwestern.

In Winer’s case, hypercalcemia signaled that her initial lung cancer treatment, Tagrisso (osimertinib), was no longer working. She had been taking the drug, which targets tumors with EGFR mutations, for eight months. During her hospital stay, she was given fluids to flush the calcium out of her blood. To further lower her calcium levels, she also received medications including calcitonin and zoledronic acid, a bisphosphonate therapy that is also used to treat osteoporosis. Then she was switched to a chemotherapy regimen of Alimta (pemetrexed) and carboplatin. She’s now off the carboplatin and receives Alimta every three weeks.

Winer’s most recent imaging tests showed stable disease; the hypercalcemia is under control, too. “I feel better than I have since I was diagnosed,” says Winer, 71, the retired dean of the College of Arts and Sciences at Texas Tech University. “At one point I was sleeping 15 to 18 hours a day. Now I don’t feel fatigued at all.” Because her current chemo- therapy regimen is adequately controlling the cancer, she does not require additional treatment to prevent hypercalcemia.

Three of the four paraneoplastic syndromes most commonly in lung cancer are usually caused by tumor secretions, including hypercalcemia. About 80% of these cases occur when lung tumors produce parathyroid hormone-related protein, which impairs the kidneys’ ability to process calcium and phosphate. Hypercalcemia can also result from the cancer spreading to bone and prompting the release of calcium, though this is more common in other types of cancer.

Hypercalcemia can cause a range of symptoms, such as confusion, nausea, constipation, fatigue, weakness, dehydration, muscle pain and — in extreme cases &mdash; kidney failure. First-line treatment involves administering saline intravenously to flush out the excess calcium and treat dehydration, which can stress the kidneys.

For tough-to-treat cases of hypercalcemia, infusions of bisphosphonates such as Zometa (zoledronate) can be effective. By interfering with osteoclasts, the cells that degrade bone, these drugs lower calcium levels and are often given regularly afterward to prevent further episodes. Another option is Xgeva (denosumab), which also inhibits osteoclasts but can be more convenient because it is administered every four weeks as an injection under the skin rather than an IV infusion.

Syndrome of inappropriate antidiuretic hormone secretion (SIADH) is another paraneoplastic disorder that’s linked to tumor-produced substances. An estimated 16% of patients with small cell lung cancer (SCLC) develop SIADH, which causes the body to retain water, resulting in an imbalance of water and sodium in the body and leading to low sodium levels in the blood. If unaddressed, initial symptoms of headache, weakness and confusion can progress to more serious complications, including seizures, respiratory distress and coma.

SIADH is often treated by temporarily restricting fluid intake and increasing dietary protein and salt. Demeclocycline, a medication that promotes elimination of water from the body through the kidneys, can also be used to raise sodium levels.

“Treating the cancer can improve or even get rid of the symptoms,” Gerber says, because hypercalcemia and SIADH are typically caused by the tumors. When a paraneoplastic syndrome emerges in a patient with lung cancer, it can be a sign that therapy has stopped working and needs to change, he adds.

Sometimes patients notice the signs of a paraneoplastic syndrome before they even know they have lung cancer. When patients report these symptoms to a primary care physician

or specialist such as a neurologist or an endocrinologist, those physicians might suggest an evaluation for lung cancer, particularly if the patient is a current or former smoker.

For example, Cushing’s syndrome occurs when tumors secrete substances that cause the adrenal glands to release the steroid hormone cortisol. Commonly known as the stress hormone, cortisol affects many important processes in the body, including metabolism, memory and blood pressure. Excess levels produce symptoms such as muscle weakness, swelling, hypertension and weight gain. Cushing’s occurs in up to 5% of patients with SCLC and is associated with other neuroendocrine lung tumors such as carcinoids.

When treating the primary tumor fails to relieve Cushing’s symptoms, patients can be given drugs such as ketoconazole that suppress cortisol production, as well as blood pressure treatments and diuretics.

Among the paraneoplastic syndromes that are caused by an immune reaction rather than tumor secretions, Lambert-Eaton myasthenic syndrome (LEMS) is most commonly seen in lung cancer. An estimated 3% of patients with SCLC also have LEMS, which causes muscle weakness and fatigue.

“The immune system is trying to attack the cancer, but at the same time, it attacks the nerve endings that go to the muscles,” says Dr. Mohammad Alsharabati, a neurologist in Des Moines, Iowa. The main symptom is muscle weakness, which can affect virtually any voluntary muscle, including in the eye, head and neck. “Some people have dizziness while standing up, dry mouth, double vision, (or) trouble swallowing, and often they lose their reflexes on neurological exam,” he says.

Treating LEMS in patients with cancer can be challenging. The muscle-strengthening drug guanidine is an option, but it can cause serious side effects like balance problems and stomach pain that can be especially problematic for patients already grappling with side effects of cancer treatments. Immunosuppressant medications can be effective, but they weaken the immune system and therefore are not a good choice for patients with cancer, Alsharabati says.

In November 2018, the Food and Drug Administration approved the first drug to treat LEMS, Firdapse (amifampridine), which improves signal transmission to the muscles by opening up blocked calcium channels. Alsharabati, who served as a clinical trial investigator for the drug, believes that for patients with lung cancer, Firdapse is safer than older treatments because the side effects seen in clinical trials, including limited tingling around the mouth and in the hands and feet, were mild.

Patients with lung cancer should first complete chemotherapy, if needed, and then undergo a more aggressive treatment for LEMS, Alsharabati says.

When patients with lung cancer develop paraneoplastic syndromes, their oncologists sometimes consult other specialists for advice on how best to proceed with treatment, says Dr. Michael Shafique, a thoracic oncologist at Moffitt Cancer Center in Tampa, Florida.

“Oftentimes, for SIADH, we’ll have a nephrologist help with the consultation,” Shafique says. “They can run additional urine tests, which can be helpful in managing the diagnosis and treatment.” For LEMS, neurologists have the most experience with medicines like (Firdapse), which can help patients who don’t respond to therapies aimed at eradicating the cancer, he adds. These specialists can also help diagnose many other uncommon neurological paraneoplastic syndromes that can present with unusual constellations of symptoms.

Several other paraneoplastic syndromes are rare but sometimes occur in patients with lung cancer. Some patients develop hypoglycemia, or low blood sugar, which causes symptoms such as confusion, sweating and anxiety. A number of neurologic syndromes, including peripheral neuropathy, a condition most commonly seen in SCLC, can cause pain or a loss of sensation in the hands.

Gerber urges any patient fighting lung cancer to speak up about symptoms that seem out of the ordinary. “There are no stupid questions or concerns. The emergence of any new symptom that wasn’t a problem in the past could be a paraneoplastic syndrome,” he says.

As Gerber instructed, Winer came to each of her appointments with a list of all her current symptoms. “It was quite a list: weakness and fatigue and trembling in my hands that made it hard to do email or write very well,” she recalls of the day she learned she had hypercalcemia.

When she saw the large bags of fluids to be hooked up and infused at high speed into her body to flush out the calcium, she was afraid the therapy would be painful. It wasn’t. “I’ve been very fortunate through this whole thing that I have not experienced pain,” Winer says. “I feel well. I appreciate that.”

Articles

Features

Cancer can trigger symptoms that seem as mysterious as their name: paraneoplastic syndromes.

Strange Signs: Cancer-Related Paraneoplastic Syndromes 

In 2005, Jim Pantelas was 52 and looking forward to becoming a first-time dad when, two months before his daughter’s birth, he learned that he had lung cancer, the same disease that took his father’s life. “My dad was 67 when he died in 1980, just seven days after being diagnosed,” recalls Pantelas, who lives in Howell, Michigan. “I wondered if I would live long enough to see my baby born. And if so, would I be around to watch my child grow up?”

Happily, the answer to both questions turned out to be yes. Two weeks after receiving his diagnosis in September, Pantelas had a lobectomy to treat what was believed to be stage 1b disease. However, the surgery revealed a more dire diagnosis: stage 3b with stage 4 lymph node involvement. Pantelas then received radiation every day for 12 weeks and chemotherapy. His oncologist, Dr. Philip Stella, who provides care at Saint Joseph Mercy Health System in Michigan, worked the infusion schedule around the birth of Pantelas’ daughter that November. Pantelas and his wife named their baby Stella in honor of his doctor.

Pantelas has been in remission since completing treatment in April 2006, and Stella now has two younger sisters. “This life is not what I expected when I got my diagnosis,” Pantelas says. “I am grateful for every day with my family.”

Still, the going hasn’t been easy. Pantelas had to leave his job in information technology when lingering treatment side effects such as sinus infections, bronchitis, pneumonia and a weakened immune system left him ill and fatigued.

No longer able to work, the self-professed workaholic threw himself into volunteerism. Pantelas sits on several institutional review boards for lung cancer research and clinical trials. In September, he traveled to Kenya as a representative of A Fresh Chapter, a nonprofit organization founded by a breast cancer survivor that facilitates volunteer and leadership experiences to empower people affected by cancer. “My goal is to learn how the medical community views and treats cancer in Kenya and to see how we can help pediatric cancer patients get the best care,” Pantelas says.

Between the volunteer work and caring for his family as a stay-at-home dad, Pantelas has developed a new perspective. “I got my lung cancer diagnosis a month after Peter Jennings (a national television news correspondent) died from the disease,” he says. “I would sit in waiting rooms staring at his pictures on TV and magazines and wonder if his fate was going to be mine.”

In 2020, Pantelas will turn 67 — the age his dad was when he died. “I never would have thought that I would still be here 15 years after getting a lung cancer diagnosis,” he says.

Although lung cancer remains the leading cause of cancer deaths worldwide, advancements in treatments are helping people like Pantelas live longer and healthier than ever before. “Thanks to the advent of genomic tumor testing, we’ve seen dramatic changes in precision medicine and targeted treatments for non-small cell lung cancer (NSCLC), which is the most common form of lung cancer,” says registered nurse Rebecca Lehto, who holds a doctorate in nursing with a neuro-behavior concentration and is a cancer nursing researcher and an associate professor at Michigan State University in East Lansing.

Historically, treatment for advanced lung cancer included chemotherapy and radiation or, more often, a combination of these therapies. Chemotherapy, in particular, was viewed as a one-type-fits-all regimen, with everyone following the same protocol and receiving the same care. Today, people who receive a diagnosis of advanced NSCLC usually first undergo genomic or molecular testing to check for changes or mutations in tumors called oncogenes. Several somatic gene mutations, such as ALK, EGFR and KRAS, are commonly associated with the development of NSCLC and can likely be treated with a targeted therapy drug.

Armed with this information, doctors can tailor a treatment plan that is proven to be most effective against a patient’s specific mutation. “When I started in this field nearly 20 years ago, people with advanced lung cancer were living six to 12 months after diagnosis. Survival rates today are significantly improved,” says Dr. Alice Shaw, who holds a doctorate in genetics and is director of thoracic oncology at Massachusetts General Hospital in Boston.

She urges patients to ask her about survival rates instead of searching the internet. “Lung cancer is a very complex disease with different types and causes. Most of the statistics online today are outdated and don’t apply to a person’s unique circumstances,” she says. “With the incredible progress taking place these days, it’s almost impossible for anyone to accurately estimate prognosis. I certainly wouldn’t put stock in statistical data found online.”

Newlywed Emily Bennett Taylor took great pains to avoid online information when she received a stage 4 lung cancer diagnosis in 2012. “I was 28 and still in great shape from my years as a college athlete,” says the Long Beach, California, resident. Taylor decided to stay positive and have the upper hand against cancer. In her view, dire statistics based on other people’s circumstances would serve no purpose in her very personal fight.

While Taylor and her husband, Miles, awaited results of genomic tumor testing, the couple began discussing their future. “I had always wanted children, and I didn’t want cancer to take my family away from me,” Taylor says. Before beginning cancer treatments, she took the first step of in vitro fertilization: having her eggs harvested, fertilized and stored. Taylor hung images of the frozen embryos in the couple’s home as a reminder that happy times would follow the dark days.

Unfortunately, genomic profiling of Taylor’s tumors didn’t show any known genetic mutations for lung cancer. Without these markers, Taylor wasn’t a candidate for the latest targeted therapies that are helping to extend the lives of people with advanced lung cancer. Chemotherapy was her only option, but even after six months of treatment followed by maintenance therapy, the odds of the cancer returning remained too high for comfort. “My doctor felt my best chances at having the life I wanted — parenting with my husband as we watched our kids grow up &mdash; was to try something radical like surgically removing the entire lung,” Taylor says.

She and her family turned to the GO2 Foundation for Lung Cancer, a nonprofit patient advocacy organization for survivors and their loved ones. The foundation helped Taylor locate a surgeon willing to do an operation that isn’t typically done on people with metastatic lung cancer. On February 8, 2013, Dr. Raja Flores, a thoracic surgeon at Mount Sinai in New York City, surgically removed Taylor’s diseased right lung, the linings of her chest cavity and lung, lymph nodes, a section of her diaphragm and the membrane surrounding her heart. The intensive surgery was followed by 28 rounds of high-dose chest radiation.

After Taylor had done all she could to fight the disease, the couple waited through two years of clean scans before pursuing their dream of parenthood. “Scanxiety is definitely very real and difficult to manage,” Taylor says. “We learned early on to schedule the scans first thing in the morning on a Monday.” That way, results often are available by the afternoon. Taylor says meditation — visualizing herself healthy and happy spending time with her family &mdash; helps her cope with scanxiety and the lingering fear of a cancer recurrence.

Through the help of a surrogate, the couple welcomed twin daughters, Hope and Maggie, into the world in April 2016. “Hope” was a word often used during her treatment, and Taylor was also treated at City of Hope Medical Center. Maggie was named after Taylor’s great grandmother. Mothering twin babies has been challenging for Taylor, who fatigues easily and requires a lot of rest. “When you’re used to being active and independent, it’s hard to admit that you need help doing even routine things like grocery shopping,” Taylor says. “But once I accepted my new normal and let people in to help, life became more manageable and enjoyable.”

When Taylor isn’t busy changing diapers and thwarting tantrums, she speaks at GO2 Foundation events and replies to emails from young people facing a similar diagnosis. People find her through her blog, Emily Kicks Cancer. “We originally created that site as a way to keep everyone informed about how I was doing with treatments,” Taylor says. “Now it’s a way to offer hope to others. When I was diagnosed, there weren’t a lot of positive stories about people surviving this type of cancer. I want to change that and inspire others to seek out the best medical care so they can fulfill their life dreams.”

In 2012, Susan Warmerdam was 47 when she learned she had stage 4 lung cancer. She was relieved when tumor testing showed EGFR and KRAS mutations: That meant her doctors could try new treatments that hadn’t been available to her father, who died of complications of the disease in 1999, 10 months after receiving a diagnosis.

Warmerdam began taking Tarceva (erlotinib), an oral targeted therapy drug. At the time, Tarceva was considered experimental as a first-line treatment for lung cancer; it was approved in 2013 by the Food and Drug Administration for patients with advanced NSCLC who had an EGFR mutation. Warmerdam was still in treatment. She also participated in a clinical trial for another drug that researchers hoped would slow or prevent resistance to Tarceva. “At first, I was reluctant to join a clinical trial — I didn’t want to feel like an experiment,” says Warmerdam, who lives in Chicago. “But then I realized that if other people hadn’t participated in the trial for Tarceva, the treatment wouldn’t have been available to me. Plus, you never know when the next new drug will be the miracle cure.”

For Warmerdam, Tarceva turned out to be her miracle drug. “My doctors said I had a ‘stellar and unforeseen response’ to the drug,” she recalls. The tumors shrank so much that she was able to have surgery in 2013 to remove the lymph nodes and adrenal glands where the cancer had spread. When testing showed no evidence of cancer in the removed tissue, she had a third surgery, a lobectomy, to remove part of her right lung in January 2014. Once again, that tissue showed no evidence of disease. Warmerdam has been off treatments and cancer free ever since.

“When I was diagnosed, doctors told me the cancer was inoperable and incurable. I was given a less than 2% chance of living another five years,” Warmerdam says. “Here I am seven years later, loving life. Had I taken some people’s advice to quit work and check things off my bucket list, I would be broke today — healthy, but broke.”

Warmerdam credits a large network of family, friends and colleagues for supporting and guiding her through the most difficult time in her life: “I immediately reached out to people who could help. I asked a nutritionist friend to revamp my diet. I asked a friend who’s a plumber to install water filters throughout my home.”

Throughout her treatments, Warmerdam continued to work at a financial investment firm to keep normalcy in her life. She formed a hope-and-healing cancer group at her church. Over the years, with the help of her network, she has raised more than $370,000 for the American Lung Association’s lung cancer research efforts.

“When people come to me for advice, I tell them I am proof that a lung cancer diagnosis is not a death sentence. Stay positive and hopeful because the next drug you need may be right around the corner,” Warmerdam says. “But you have to educate yourself so that you can be your own best advocate.”

People Report

Three survivors describe what life looks like seven and 15 years out from diagnosis.

Longtime Lung Cancer Thrivers

Patients with RET-fusion-positive non-small cell lung cancer (NSCLC) had a high response to LOXO-292 (selpercatinib), according to findings from the largest clinical trial of patients with RET-altered cancers.

The oral investigational medication was examined in 105 patients who had a median of three prior treatment regimens. LOXO-292 showed a 68% objective response rate, meaning their tumors shrunk by at least 30%.

“In this large cohort, selpercatinib’s response rate, durability, robust CNS (central nervous system) activity and safety show promise,” Dr. Alexander Drilon, the lead investigator and a medical oncologist at Memorial Sloan Kettering Cancer Center in New York City, said in a press release. “Furthermore, this continues to confirm that RET fusions are clinically targetable alterations, placing them in the company of activating EGFR/ALK/ROS1 alterations.”

RET fusions, rare genetic alterations of NSCLC, occur in roughly 2% of NSCLC cases. Up to 50% of these cancers can spread to the brain.

LOXO-292 was well-tolerated by patients. A safety analysis that included all 531 patients enrolled in the trial showed that nine patients stopped treatment because of a therapy-related side effect. The most common side effects included dry mouth, diarrhea, hypertension, increased liver enzymes, fatigue, constipation and headache.

Pipeline

Investigational Drug Shows Promise in Patients with RET-Altered Cancers

A new app called Belong aims to create an at-your-fingertips community for people affected by cancer, including patients, caregivers and providers.

 provides educational materials, peer-to-peer support, an appointment tracker and an area to store medical documents. Users can also ask questions, which are generally answered during business hours by experts in the field. Forums cover topics such as emotional support, nutrition, pain and symptoms and radiation.

The social network has more than 200,000 users, who are put into “rooms” with people who have had similar experiences, said Daniel Saez, the treatment and trials navigator at GO2 Foundation for Lung Cancer, which has partnered with the makers of Belong.

“You’re getting a perspective from someone fighting the same disease as you are. To me, that is one of the best things. I get to share and receive from other fighters,” said Ron Simmons, an appreciative member of this new community.

Simmons initially received a stage 1 colon cancer diagnosis in 2013. He had surgery to remove the cancer and assumed his journey would end there. But in 2017, after routine blood work raised a red flag, CT and MRI scans revealed something in his left lung. However, further biopsies concluded it wasn’t cancerous, so Simmons’ doctors thought it might be a partially collapsed lung that should be watched for the next six months.

Around Christmas, Simmons felt unwell, got a chest X-ray and learned he had stage 3 non-small cell lung cancer that had spread beyond the lung. Treatment began quickly: partial removal of his lower left lobe; chemotherapy and radiation; and immunotherapy, completed in August 2019. He currently has no evidence of disease and will go for scans every three months. The 58-year-old married father of two is even back to regular exercise, including cardio to boost his fitness.

However, adjusting to life outside of the cancer center has proved challenging without the daily support of the medical team, other staff members and fellow patients, Simmons said. He plans to stay connected through visits and social media but wanted something more, and he found it through Belong. “A neighborhood is a group of people all together,” he said, “and it takes a community of people — a neighborhood &mdash; to be able to survive (cancer) and be successful.”

Many users value the sense of anonymity, Saez noted. “A lot of people like to talk about their condition but don’t want their friends, family or anyone in their proximity to know what is happening. The anonymity makes people feel that they can be more open and allows them to connect on a level that they might not otherwise be able to.” Belong is also a good resource for patients who may live in rural areas and lack easy access to support groups, he said.

An aptly named app brings community to patients and caregivers around the world.

Where You "Belong"

Precision medicine has helped personalize treatment for certain patients with cancer. Advances in the understanding of individual genetics allow health care professionals to tailor therapy to a particular type of tumor. Although precision medicine may spare patients from treatments that don’t work, not all patients understand the importance of tumor genomic test results, according to preliminary study findings presented during the World Conference on Lung Cancer in Barcelona, Spain.

Researchers with the Lung Cancer Master Cancer Protocol (Lung-MAP) study uncovered this gap in knowledge after surveying 123 patients over the phone from February 2018 to April 2019. They asked 38 questions adapted from prior cancer genomic results studies to test patient knowledge of genomic testing. Patients were mostly men (61%) and white (95.1%), and the mean age was 67.8 years.

“We are trying to match drugs to genetic changes in the body,” Joshua A. Roth, a Lung-MAP investigator and an assistant member of the Hutchinson Institute for Cancer Outcomes Research at the Fred Hutchinson Cancer Research Center, said in an interview with CURE®.

“We know that with certain changes, certain drugs are more effective. They can, for example, help you live longer. The idea is to try to find these pairs, but the challenge in doing that is that often, the percentage of patients with these genetic changes are small, and so using a traditional approach would take many, many clinical trials to find all the right matches between drugs and genetic changes. That’s what led to this biomarker clinical trial that Lung-MAP is a part of.”

The researchers found that nearly 90% of respondents knew that their test results would be used to select their cancer treatment. Another 82.9% said they received enough information about their tests to understand the benefits of enrolling in the trial, and 73.2% reported that they had enough information to understand the study risks.

However, gaps existed in the understanding of genomics’ role in risk of other diseases or cancer risk in family members. Participants had received testing that detects DNA mutations in cancer cells known as somatic mutations — meaning these are in tumor cells, but not normal cells and therefore not passed down to subsequent generations. Although some precision medicine clinical trials include germline testing, which detects inherited DNA mutations, this study did not.

The survey asked about both somatic and germline testing. Researchers reported that just 9% of patients knew that the somatic testing could not predict if a family member was at increased risk of getting cancer, and 12% knew their results couldn’t predict their own increased risk of other diseases.

“The distinction between germline and somatic mutations would come from a one-on-one discussion with a study physician or study staff,” Roth, who holds a doctorate in pharmaceutical outcomes research and policy, said. “We don’t know on an individual basis what they heard or didn’t hear, but we do know now that there are knowledge gaps. So there is a need to come up with more systematic ways to explain this stuff to make sure all patients have a baseline sense of what is happening and what isn’t happening.”

Patients who don’t understand the difference between the tests or any other information on the clinical trial consent form should speak with a trial investigator or find support through a genetic counselor, Roth said.

Next steps include an analysis follow- up with all 207 patients — 84 were enrolled after April 2019 &mdash; with the hope of developing interventions, such as screening for misunderstanding or inserting more information into the clinical trial consent form.

“This speaks to understanding the benefits and risks of trials and the ability to give informed consent to participate,” Roth said. “We don’t want to have misunderstandings about these issues where a patient might think they are getting more information than they really are. We want them to come in with appropriate expectations.”

Lung-MAP is the first major National Cancer Institute trial to test multiple treatments at the same time. Enrolled patients get a genomic profile to determine the genomic alterations, or mutations, that may drive the growth of their cancer and are treated based on the results. Earlier this year, the trial expanded enrollment to include patients with all types of non-small cell lung cancer rather than just those with advanced-stage squamous cell lung cancer.

Results uncover a need to ensure understanding and give adequate information about genomics in risk of other disease, familial cancer.

Lung-MAP Trial Reveals Genetic Testing Knowledge Gaps Among Patients

At 29 years old, Silas had his life cut short. What he thought was a pinched nerve had turned out to be stage 4 lung cancer, and he underwent two surgeries, chemotherapy and radiation. After an eight-month fight, Silas died of the disease.

For his mother, Lorraine, seeing her son in pain was her most difficult experience as a parent. In an interview with 

, she shared the challenges of caregiving for her adult son, described where she turned for support and offered advice for other parents.

®: What was the time after Silas’ passing like for you? 

I never heard my son ever ask “Why me?” He was so grateful to everyone around him. He kept his humor. I believe his strength helped all of us. He was such a great teacher. While he was sick, I learned to live in the moment with him. I cried and worried and had a lot of anxiety and sadness, but I was also very focused on what he needed, and a lot of energy goes into that, as well as a lot of love, for a parent. If he wanted to go out, we went out. If he wanted takeout food, we ordered it and hoped that he’d still feel like eating.

During the time he was ill, I couldn’t look at the possibility. I was looking at what we could do to get him better and keep him here as long as possible. He was in a lot of pain, and it was moving quickly. When he passed on, I honestly didn’t know how I would survive the first year. I was so heartbroken. I had to go back to work right away. Essentially, I would go to work, I’d come home and shower, then fall into bed until the next morning. But then I realized that he didn’t live to 30, and I wanted a tribute to him. So I started working on getting a local artisan to create a bench in his memory for the school he was going to.

Did you turn to people or group therapy for support? 

After the first year — and I learned that broken hearts still beat &mdash; I went to my first support group for parents who have lost adult children. That was about six weeks long. From there another woman from that group and I created a peer-to-peer support group. I ran that for about six years.

Then I also worked on creating the nonprofit for young adults with cancer in my son’s memory, Sy’s Fund. My son always thought really big. It’s a national fund, and we fund young adults who are 18 to 39 who have a cancer diagnosis or are dealing with ongoing medical issues. We help fund hobbies, passions and integrative therapies.

What outlets provided a quick break or self-care? 

Honestly, as a mom, I felt the biggest self-care was caring for my son. But you have to recognize that you get so rundown. I learned to eat when he did, and when he napped, I would try to sleep a little bit. I had friends and some family members who were supportive, and if I needed to leave the room to make a phone call and cry,  I found that helpful. Caring for my son and making sure that he felt surrounded by love was one of the highest forms of self-care.

What was the biggest challenge of being a caregiver? 

For me, it was that Silas is my child and I couldn’t take that cancer from him. I had to watch him suffer and know that it was beyond my control as a parent to fix. As parents, once our children are here, there’s that message that we need to protect them and give them everything in our power, and that was taken away from me.

Why did you want to become involved with the With Love, Me campaign?

Having a child receive a cancer diagnosis is, I would imagine, one of the hardest things. I felt that the campaign was an opportunity to perhaps help others who are caregiving for someone with cancer, certainly in hopes that those young adults will survive and get better. Regardless of the outcome, it’s a really hard thing to go through. I really appreciate how the campaign is bringing people together, so they don’t feel so alone. After Silas passed, one of his nurses told me that our family handled things in an incredibly wonderful way — keeping Silas in the forefront. I felt it was such a high compliment, and I felt if I could help others through getting our story out, then it’s a great opportunity.

What advice do you have for a parent who has lost a child? 

I would say not to let other people tell you how you’re supposed to grieve. Grieving the loss of a child is very intense and complicated. Find a peer-to-peer support group. If you’re feeling like harming yourself, make sure you get professional help. Surround yourself with supportive people who understand and accept that your life is forever changed. You’re not the person who you were before your child received the diagnosis of cancer. That person is not coming back. But the person who you have become also has a lot to offer.

Is there a message that you have for someone who is living with lung cancer?

For people who are undergoing a diagnosis, don’t be afraid to get a second or third opinion, if necessary, and surround yourself with people you can count on and who can advocate for you. Lung cancer is highly stigmatized, so if there are people coming into your life with negative messages that you don’t have the energy to deal with, remove yourself from that situation. And remember that there are really good researchers out there who are doing the work necessary to increase survival for people with lung cancer. There is hope.

Voices

How one mother learned that “broken hearts still beat.”

Living After Loss

With nearly 230,000 new lung cancer diagnoses projected in the United States this year, and with the disease causing more annual deaths than breast, colon and prostate cancers combined, it is critical that we address the disconnects that get in the way of the most effective patient care and treatment for lung cancer.

Although we continue to make strides in cancer research and treatment, there are new and persisting disparities that need to be addressed. These include gaps in the sharing of accessible, actionable information; inequitable outcomes based on race and ethnicity; lung cancer stigma; and the lack of research funding — all keep researchers, health care professionals and advocates from our ultimate goal of ensuring patients have the best possible outcomes.

Among the most significant breakthroughs in lung cancer in the past 15 years is biomarker testing, which led to targeted therapies for non-small cell lung cancers, including those with tumor mutations in the EGFR, ALK, ROS1, BRAF and NTRK genes. One of the many disparities in care is that comprehensive biomarker testing, although routine clinical practice in most academic centers and included in clinical guidelines, is not happening in many rural and community settings. If patients don’t receive appropriate testing, they and their oncologist will not know if they have a biomarker that might indicate a different treatment path. Even worse, some studies show that just 45% of patients who have these markers are receiving the appropriate targeted therapy. Among the many reasons that this disconnect exists: Testing results are too often inaccessible to treatment teams and to patients.

Ensuring that all oncologists and patients have immediate and understandable access to biomarker testing results and corresponding targeted therapies will help address this treatment gap. In the past, some thought this information was too complex for patients to understand. However, with much more information available online, credible lung cancer research is available at the click of a mouse, advocacy groups are educating patients and caregivers, and lung cancer social media groups delve into and share detailed information on tumor markers and corresponding treatments. Patients and their families are more educated than ever before about their disease and involved in their own treatment. They have the right to be empowered to understand their disease and treatment options.

Racial disparities, particularly among African American patients, have long existed in cancer treatment, and lung cancer is no exception. For example, according to the National Cancer Institute (NCI), black men are nearly 20% more likely to receive a lung cancer diagnosis than white men, but they are less likely to get treatment and also succumb to their disease sooner than their white counterparts.

Fortunately, studies are being done to address and reduce this disparity, including a recent clinical trial by the NCI. By reducing cracks in the electronic records system and assigning nurse navigators to resolve barriers to care while collecting data on clinical outcomes, the NCI was able to eliminate treatment disparities for black patients and improve treatment for all patients in the study. We need to continue looking for disparities in the treatment of minority and ethnic patients and learn from these types of studies how to best scale the discovered solutions.

Patients with lung cancer already find themselves at a disadvantage compared with other patients with cancer because they perceive a strong stigma around their disease. When this is coupled with disparities in the quality of care received because of their geographic location or racial demographics, there can be devastating consequences.

GO2 Foundation for Lung Cancer is helping to address these gaps in care with programs such as LungMatch, which allows any patient to request biomarker testing and then pairs them with a treatment and trial navigator to help educate them about treatment choices. In addition, the GO2 Foundation Continuum of Care Centers of Excellence tracks the amount of biomarker testing performed in community cancer centers to ensure that patients are receiving quality care, because many academic centers already have high testing rates.

Collectively, we must strive to provide high-quality, guideline-driven care for every patient, regardless of demo- graphics or geographic location. Our patient community needs and deserves the elimination of testing and treatment disparities so that we can finally make improvements in long-term survival of lung cancer.

is the senior director of science and research at the GO2 Foundation for Lung Cancer, the world’s leading organization dedicated to saving, extending and improving the lives of patients with lung cancer. King has extensive experience in oncology, precision medicine, health information technology and patient advocacy.

Disparities in lung cancer care must be closed to improve patient outcomes.

Everyone Deserves Quality Care in Lung Cancer

When I mention to strangers that I have stage 4 incurable lung cancer, I can see the pity in their eyes. I mostly mention it to let them know that anyone with lungs can get lung cancer, because I know the first question they will ask is “Did you smoke?” to which I reply “no.”

I know this question makes a lot of people angry. I used to get angry when asked — that is, until I came to realize that it’s not the asker’s fault. I would have asked the same thing before I actually got lung cancer. Society often teaches us that the only way you can get lung cancer is from smoking. This isn’t true. There are so many contributing factors that people are unaware of, such as radon, air pollution, genetics and just good old-fashioned bad luck.

But in any case, no one deserves lung cancer. Most of us have bad habits, but I’ve seen some of the healthiest people I know acquire lung cancer and pass away from it. This month marks seven years that I’ve been living with it. I received my diagnosis less than a month after my 33rd birthday, during lung cancer awareness month. I wasn’t even aware it had its own month.

In the beginning, I had no hope and no faith. I felt helpless. I no longer had control over my body. I was told I had 12 to 18 months to live. Being the single mom of a 7-year-old little girl didn’t help with my depression. I quickly got on antidepressants. There is no shame in that; I had to be strong for my girl.

It’s now been seven years since that fateful day when I learned my life would never be the same. I’ve come a long way in personal growth and have learned that sometimes the best of God’s blessings can come from the worst of circumstances.

First, my appreciation for life was renewed. I had a second chance, and I could choose to be a better person. Before cancer, I was a workaholic. I never stopped to smell the roses, walk the beach at sunset, watch my daughter and her friends just be kids, and teach her so much by being able to be home with her. All the smells, the sounds, the beauty of this life I now appreciated.

Since the diagnosis, my child has become very empathetic of others, an advocate for lung cancer, and gave her life to Christ at the age of 8. We didn’t push her; the faith just bloomed. I love her more than anything in this world, and I couldn’t be more proud of the 14-year-old freshman she is now.

I’ve also made some incredible friends from all over the world through the lung cancer community. We are united in a hunger and new appreciation for a life that most take for granted. Yes, I’ve lost many of those friends. And yes, it hurts when I do, but that’s how I know I truly loved them and will see them again one day. No one can be replaced when they are a part of your heart.

Let me just say that getting lung cancer at such a young age was a humbling experience. I was so self-centered and uncaring before. I was cutthroat at my job. I’m happy to say I’m not that way anymore. I once was blind, but now I see.

I see that we have this one life, one chance to make a difference in others and maybe make this world a better place. Evil didn’t win. Cancer hasn’t won and will never win because I already have. I wouldn’t take it back for a second. This is my life and this is my purpose — helping others.

Speaking Out

How a cancer diagnosis leaves one woman feeling humbled.

Living with Lung Cancer: The Silver Linings

When Susan Warmerdam received a stage 4 lung cancer diag- nosis, she was told that she had less than a 2% chance of surviving another five years. Seven years later, she is living well and sharing her story with CURE® readers.

In the face of cancer, she chose to understand the biology of her disease and how it influenced her treatment options, eventually leading her to a clinical trial.

Warmerdam is not alone when it comes to outliving the disease she thought would claim her life, like it did her father’s. New thera- pies approved following innovative research are increasing survival rates for patients with advanced lung cancer.

In one of our feature stories, we hear from longtime lung cancer “thrivers.” You’ll read more about Warmerdam and two other survivors; one is 15 years past diagnosis; the other, seven. Although these individ- uals endured lots of treatment, side effects and struggles along the way, firsthand accounts from them and others continue to inspire and offer hope to other patients and survivors, as well as researchers and health care providers who daily strive to eradicate cancer.

Also inside, CURE® takes a deeper look at the latest therapies for treating patients whose non-small cell lung cancer (NSCLC) has spread to the brain, also known as brain metastases. The cover story examines the role of surgery and radiation, as well as how tumor mutation may affect individual treatment plans. Experts weigh in on how they approach patients with this type of disease.

And for years, the treatment of small cell lung cancer remained stagnant, mainly because of a lack of clinical trials in this disease state. But in recent years, researchers have begun looking into newer techniques that are proving successful in early clinical trials. These trials investigated PARP inhibitors, which are often used in gynecologic cancers, and a combination of immunotherapy with chemotherapy. Earlier this year, the results of one study led to the Food and Drug Administration approval of Tecentriq (atezolizumab) in the first-line setting. The results have many excited about the future, but for now, the standard of care remains the same.

This issue also covers a recent drug approval for metastatic NSCLC, the disparities that exist in the care of people with the disease and — as described by a patient &mdash; the silver linings of having cancer.

From the Chairman

New therapies approved following innovative research are increasing survival rates for patients with advanced lung cancer. 

It's a Great Day to Thrive

Cancer is a complex disease. Even more convoluted: its effects on the body. For instance, we health care professionals often take time to carefully educate our patients about symptoms and side effects of cancer and its treatment.

However, the rarer effects are not necessarily discussed upfront. Most likely, it’s a precaution to not overwhelm patients as they are first learning about their disease, but it’s also because a group of rare syndromes triggered by the cancer may never occur in some patients.

Paraneoplastic syndromes are uncommon disorders that can arise with any cancer type but are more common with lung cancer. They can develop when substances released by some cancer cells or an immune reaction disrupt the normal function of surrounding cells and tissue. Paraneoplastic syndromes affect the nervous system, which can cause problems with muscle movement, sensory perception, memory and sleep. Other organ systems, such as hormones, skin, blood and joints, can also be affected.

In this issue of CURE®, a feature story examines how paraneoplastic syndromes play a role in patients with non-small cell and small cell lung cancer. Experts in the field discuss the four main types associated with lung cancer and how they are diagnosed and treated. We also hear from a patient who shares how, after learning of her lung cancer, she began to experience seemingly unrelated symptoms, such as trouble moving her hands and fingers. The diagnosis: hypercalcemia, or excess calcium in the blood. This type of paraneoplastic syndrome occurs in 20%-30% of cases.

Like this patient, others may notice unexpected symptoms; sometimes a routine blood test might produce a concerning result. That’s why it’s crucial to share any new signs or issues with your health care team and get regular follow-up for any type of active cancer.

Diagnosing these diseases has proved challenging over the years because tests, such as physical exams, blood tests and imaging, don’t always reveal the source of the problem. Your doctor will have to first rule out other causes. And then there is the challenge of understanding how these syndromes work biologically, something researchers are still trying to determine.

There is no absolute cure for paraneoplastic syndromes other than successfully addressing the underlying cancer, but medical teams can treat them in a few ways. Options include decreasing the autoimmune response with steroids, high-dose intravenous immunoglobulin or irradiation. For neurological syndromes, anti-seizure medications have been used. Hormonal derangements that lead to high calcium levels can be treated with calcium-lowering hormones or certain bone-protecting drugs used for osteoporosis. Speech and physical therapy can help patients who may be more disabled by a paraneoplastic syndrome regain functions.

Nevertheless, managing these syndromes seems to fall more under the art of oncology, and we hope the science will continue to catch up.

Editor's Page

Paraneoplastic syndromes are uncommon disorders that can arise with any cancer type but are more common with lung cancer.

Paraneoplastic Syndromes: A Puzzling Piece of Cancer

When Jodi Parker learned that she had stage 4 non-small cell lung cancer (NSCLC), she knew what she was in for. After all, she had worked as an oncology nurse from 1982 to 1992, administering chemotherapy, the medicine her own doctor now recommended.

After being told she had a year to live, she decided to let nature take its course and go straight to hospice, avoiding treatment. Parker’s doctor in Idaho Falls, Idaho, reminded her that she had a loving family, including a husband and adult children, and much to look forward to. Despite having an aggressive disease, often with a poor prognosis, some patients respond well to treatment, at least for a while. “The conversation changed my life,” she says.

That was in 2013. Since then, Parker has celebrated her son’s marriage and now plays with three beloved grandchildren. “I had not realized that in the past 30 years, they made tremendous strides in treating lung cancer,” she says.

It hasn’t been an easy road. Parker needed multiple procedures to drain fluid around her heart and lungs. Chemotherapy stopped working well for her in 2014, and additional genetic testing revealed an ALK-positive mutation, making her eligible for Xalkori (crizotinib), a targeted therapy pill. “Having that year of chemo may have improved my response rate to targeted therapy drugs,” Parker says.

In 2015, she experienced vision changes, word choice confusion and balance issues. An MRI scan showed two brain tumors — a golf ball-size one on the left and a smaller one on the right. Parker had brain surgery followed by radiation and then changed to Zykadia (ceritinib), a second-generation targeted therapy. She’s currently stable.

Although lung cancer with brain metastases was once a death sentence, Parker found out firsthand how dramatically newer treatments and genetic testing have changed potential outcomes.

There’s a strong correlation between brain involvement and NSCLC. At diagnosis of advance-stage disease, approximately 10% of patients also have brain metastases. In all NSCLC cases, 16%-20% have brain metastases; for those with ALK and EGFR genetic mutations, incidence rises to 50%-60% during the disease course. About 33% of those with the ROS1 mutation will develop brain metastases.

AJ Patel, who lives in Irvine, California, was one of those patients. For two years, he tried to manage his frequent throat clearing with allergy medications and also had bloodwork done. A 47-year-old nonsmoker who ran 20 miles a week, Patel persuaded his doctor to order a chest X-ray in 2013. Doctors found a lung nodule but weren’t concerned, recommending a repeat X-ray in 3 to 6 months. But after coughing up blood twice soon after, he got a CT scan, which revealed a 7-centimeter nodule in his lower left lobe. A biopsy confirmed stage 4 lung cancer.

Doctors insisted that Patel get not only genomic testing but also an MRI brain scan. “I have lung cancer. My brain is perfectly fine,” he recalls telling the oncologist. But the scan showed a 3- and 4-centimeter tumor on the left hemisphere, where the motor function is located, plus smaller tumors.

There’s a high risk of a person with NSCLC having brain metastases even with no symptoms, says Dr. Alice Tsang Shaw, who holds a doctorate in genetics and is director of thoracic oncology at Massachusetts General Hospital Cancer Center in Boston. Given the clinical implications of brain metastases, a brain MRI is routine when staging patients with newly diagnosed lung cancer, though not all oncologists do this, Shaw says. During diagnosis, patients with NSCLC should also undergo tumor genomic testing, which can affect therapy choices.

Treatment also depends on factors such as whether the cancer is squamous or nonsquamous cell, which require different approaches, says Dr. Howard (Jack) West, a thoracic oncologist at City of Hope in Los Angeles.

Physicians also consider the patient’s fitness level and performance status, which indicate the ability to perform activities of daily living.

Before giving a systemic treatment like chemotherapy, West considers whether a patient requires immediate treatment for an urgent local issue, such as pain from bone metastases or severe shortness of breath from pleural effusion. He assesses how likely systemic therapy will work against any intracranial disease, which largely depends on if a tumor harbors a driver mutation that can often be treated effectively with a matched targeted therapy, including in the brain for many of the newer treatments. He also considers the amount of tumor PD-L1 expression, which correlates to how likely the cancer cells will respond to immunotherapy, potentially in the brain, as well as in the rest of the body.

Choosing the treatment can be complicated, Shaw says, given all the factors, including whether brain tumors should be surgically removed, radiated or treated with chemotherapy, chemoimmunotherapy or targeted therapy. She might call for a neurosurgical consultation if the lesion is larger and has a mass effect, compressing other areas of the brain, and she’s concerned the brain will herniate, which is often fatal.

Location matters, too. If a single large lesion causing symptoms is in the upper part of the brain, where there’s more room to operate, that makes the decision easier, says Dr. Mohammad Jahanzeb, a medical oncologist and chief medical oncology scientific and strategic adviser at 21st Century Oncology. A lesion closer to the brainstem, where the skull narrows, creates more potential for nerve damage.

Patel faced the decision of operating plus radiation versus radiation only. Knowing that the operation was more likely to remove his lesion than radiation alone, he opted for surgery, though the recovery was difficult and lengthy. It was followed by radiation.

Once treatment is underway, patients who do not have brain metastases on initial diagnosis will not necessarily get periodic brain scans. “You don’t routinely do surveillance MRI to follow places that didn’t have metastases before,” West says.

Jahanzeb does order scans for patients with a high propensity for brain metastases, such as those with EGFR- or ALK-positive mutations. During treatment, he scans patients every six months to catch metastases early.

Although Laura Greco of Wilton, New York, did not initially receive a diagnosis of brain metastases, she did have an ALK-positive mutation. She would have undergone periodic brain scans, but she was allergic to the gadolinium dye used in her initial scan. Her doctors decided not to perform another one until she showed symptoms of the cancer’s growth.

Greco received a stage 3a NSCLC diagnosis in 2015 at age 40, following a car accident. After undergoing a full-body CT scan to ensure there were no problems from the crash, doctors told her to get a detected lung nodule checked out. She mentioned this to her primary care physician the next week. At first the doctor wasn’t concerned. He had asked if she had lost weight recently, experienced shortness of breath or fatigue or smoked. The answer to all were no, and Greco had no symptoms. However, the report showed a nearly 4-centimeter mass, and a biopsy confirmed NSCLC. The prior full-body CT scan and a brain MRI after diagnosis showed no spread of the cancer beyond her lung.

Greco initially received chemotherapy and radiation for seven weeks, followed by lung surgery. She then underwent four more rounds of chemotherapy.

Whole brain radiotherapy (WBRT) for brain metastases is still common but may not be the first treatment choice. More focused stereotactic radiosurgery (SRS) can be used for one or two spots in the brain and spare other areas, Shaw says. If there are multiple lesions, WBRT can be used but will likely cause neurocognition and motor deficit side effects, especially over the long term.

WBRT was more common 10 to 15 years ago because overall survival of metastatic NSCLC was about a year, Jahanzeb explains: “In that case, we weren’t worried about the long-term sequelae of whole brain radiation.” Now that patients, especially those with genetic mutations, are living longer, sometimes five years or more, long-term side effects matter more.

SRS, a nonsurgical approach that uses focused beams to treat tumors, has a relatively low toxicity, Shaw says, but some doctors prefer to avoid it if possible. “Depending on the type of NSCLC, it’s a controversial question whether we should bypass radiation and try systemic therapy first or continue to do what we’ve done historically, giving the radiation up front to control brain metastases,” she says. For ALK-positive patients, for example, an ALK inhibitor that penetrates the brain is usually preferable to SRS as a frontline therapy, she says.

Greco learned of her brain metastases in 2016 after she developed neck pain and an MRI revealed 10 tumors of over 1 centimeter and extensive brain swelling. “One doctor called my brain scary,” she says.

Her primary care doctor was not optimistic, but Greco had stayed on top of the research since her initial diagnosis. She knew that although Alecensa (alectinib) was not yet approved by the Food and Drug Administration (FDA) for her indication, a clinical trial showed the agent’s effectiveness in reducing brain tumors in ALK-positive patients. Her insurance approved its use for her, and it reduced her tumors by 50% in three weeks and by 75% at her six-week scan. She ultimately needed SRS twice in 2018 and does not rule out using WBRT if needed. “But that’s the nuclear option. We’re waiting until there are no other choices,” Greco says.

Some of the targeted therapies show effectiveness in days, Shaw says, and can penetrate the blood-brain barrier, shrinking the tumors and allowing some patients to avoid neurosurgery. Some targeted therapies have a 60% or higher response rate in the brain.

A high percentage of patients with NSCLC have genetic mutations in their tumor: About 15% of patients have the EGFR mutation; 2%-7%, the ALK mutation; and 1%-2%, the ROS1 mutation. Patients with NSCLC who have never smoked, like Parker, Patel and Greco, as well as women and Asian patients, have a higher rate of certain mutations compared with people who have smoked.

During Patel’s hospital stay after brain surgery, his oncologist told him he had the ROS1 mutation. “She was elated,” he says, explaining that there was an oral chemotherapy drug he could take that would target his cancer.

Patients are living longer because of treatments associated with these mutations. Some of the newer drugs penetrate the brain, which traditional chemotherapy doesn’t do well, Jahanzeb says.

Although not all genetic mutations have drug options, EGFR, ALK and ROS1 have both FDA-approved treatments and investigational agents, Shaw says. The success rates give clinicians more enthusiasm for starting with systemic instead of local therapy like radiation or neurosurgery. “This has been a pretty amazing revolution in their care,” Shaw says.

Those who have brain metastases but no genetic mutations shouldn’t lose faith; chemotherapy, chemoimmunotherapy and radiation therapy are still good options, according to Shaw. “Chemoimmunotherapy and chemotherapy can show brain activity,” she says. Those with the adenocarcinoma subtype can try Alimta (pemetrexed), which has some brain penetration and may work for small, asymptomatic lesions.

“Patients with brain metastases used to have a horrible prognosis, but that’s no longer the case,” Jahanzeb says. “There are plenty of effective interventions for the brain.”

Rather than looking at general lung cancer statistics, a patient is better off understanding that the disease and its treatment outcomes depend on patients’ unique situations. “They’re highly variable based on mutation type, how advanced your cancer is, how many organ sites,” Greco says. Researchers don’t have a great way to predict who will respond well and who won’t. Patients should consider themselves outliers, Greco recommends.

Greco, Patel, and Parker all recommend that patients become experts in the disease and treatments to facilitate better discussions with physicians. “Don’t assume the doctor has all the answers,” Greco says. “No one cares about you as much as you. You have to be armed with as much information as you can to make the most educated decision you can.”

New therapies offer options for patients with non-small cell lung cancer whose disease has spread to the brain.

Lung Cancer Special Issue (2)