Jeannette Moninger

Emma Vivian and her husband were looking forward to 2019. The couple, married for five years, were ready to start a family. But in December 2018, they found themselves sitting numbly at a cancer center as a breast surgeon explained that 29-year-old Vivian had stage 1b triple-positive breast cancer. The recommended treatment plan included a mastectomy, months of chemotherapy and perhaps immunotherapy or biotherapy, followed by years of estrogen-blocking anastrozole plus Lupron (leuprolide acetate) injections. At the end of the conversation, the doctor cautioned that the cancer treatments meant to save Vivian’s life could affect her ability to have a baby.

For the first time, Vivian broke down. “It was horrific enough to get a cancer diagnosis when I wasn’t yet 30,” she says. “To find out that your dream of having a child might be lost was too much to bear.” Still, Vivian was grateful that her doctor brought up fertility preservation. “Since starting cancer treatments, I’ve met other women with cancer who didn’t know that they might not be able to have children,” she says.

This lack of knowledge can have long-lasting implications for cancer survivors. Research shows that women who find out about infertility risks after getting cancer treatments (when the opportunity for fertility preservation has passed) experience more severe depression and grief than those who knew about the risks beforehand.

The good news: More oncologists are discussing fertility with their adolescent and young adult patients, often at the same time they first discuss cancer treatments. The timing is critical. “Depending on the cancer type and stage, there can be a very short window of opportunity for fertility preservation to happen before cancer treatments must start,” says Dr. Mahmoud Salama, director of The Oncofertility Consortium at Michigan State University in East Lansing.

But there’s still a lot of work to be done in oncofertility, a term coined in 2006 to bring the fields of oncology and fertility medicine together to help children, adolescents and young adults who have cancer. That same year, the American Society of Clinical Oncology issued guidelines urging oncologists to discuss the possibility of infertility as a cancer treatment side effect and to refer patients to fertility specialists when needed. Three years later, a national survey found that fewer than 50% of people with childhood and gynecologic cancers were aware of these infertility risks.

Oncofertility: Helping Women with Cancer Conceive

Chemotherapy and radiation therapy are commonly used to treat breast and gynecologic cancers. Some of these anticancer therapies are also highly gonadotoxic, meaning they can temporarily or permanently damage a woman’s ovaries. “Radiation therapy can (sometimes) cause the ovaries to fail, putting a woman into early menopause,” says Kristin Smith, program manager for fertility preservation at the Adolescent and Young Adult Cancer Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago. “And chemotherapy drugs can’t distinguish between rapidly dividing cancer cells and the active cells in ovaries that produce eggs. They go after both.”

Egg freezing, or cryopreservation, is the simplest fertility preservation method for women. “A woman gets daily hormone injections for about two weeks to stimulate egg production, and then has an outpatient procedure to retrieve the eggs, which are frozen and stored,” says Dr. Elizabeth Constance, a reproductive endocrinologist and fertility preservation specialist at Heartland Center for Reproductive Medicine in Omaha, Nebraska. Egg retrieval needs to happen first, which means there can be a two-week delay in the start of cancer treatments. “We always work with the oncologist to prioritize the patient’s health over fertility preservation,” Constance says.

Unfortunately, the hormones that stimulate egg production also can feed the growth of estrogen hormone-positive cancers such as Vivian’s triple-positive breast cancer. When Vivian decided to freeze some of her eggs, she took letrozole to keep estrogen levels from surging too high. Letrozole is a nonsteroidal aromatase inhibitor that suppresses the body’s natural production of estrogen. Doctors typically use it to treat breast cancer in postmenopausal women.

A woman may need to wait one to five years after finishing cancer treatments to try to conceive. In vitro fertilization (IVF) can be used to fertilize some of the previously frozen eggs. Laboratory clinicians mix sperm from a woman’s partner or a donor with the eggs, which have been thawed. Another option is intracytoplasmic sperm injection, which injects sperm directly into an egg. The fertilized egg, now an embryo, is then placed into the woman’s uterus where it hopefully implants and starts to develop.

Some women freeze embryos instead of unfertilized eggs, a method that has been in use since the 1980s. Freezing a fertilized egg is more successful in achieving pregnancy than freezing eggs and fertilizing later, although this requires a partner or anonymous donor. Once frozen, embryos and eggs don’t age. “Eggs retrieved from a 22-year-old woman remain 22 indefinitely,” Smith explains. This means a woman in her 40s can conceive with a frozen egg or embryo that is younger and theoretically healthier. Women older than 40 who conceive naturally have an increased risk of having a child with Down syndrome, autism or other chromosomal problems. Conceiving with a previously frozen young egg or embryo lowers this risk.

For prepubescent girls with cancer who haven’t started to produce mature eggs, ovarian tissue freezing is the only option. This method also can help teens and adult women. “Doctors surgically remove part or all of an ovary, leaving the other ovary in place in the hopes of preserving natural hormone production in the future,” Constance says. Thin strips of ovarian tissue are frozen and stored. These tissue strips can contain follicles with thousands of immature eggs. At a later date, a doctor surgically implants the thawed tissue back onto a woman’s remaining ovary or into the pelvic region. The hope is that the tissue starts releasing eggs on its own for natural conception or can be stimulated to produce eggs through IVF.

The first baby conceived through ovarian tissue freezing was born in 2004 to a Belgian woman who froze tissue seven years earlier before getting chemotherapy to treat Hodgkin lymphoma. She became pregnant naturally 11 months after the tissue reimplantation. In 2005, an infertile American woman (who didn’t have cancer) became pregnant after receiving an ovarian tissue transplant from her identical twin sister.

More than 300 babies have started life this way. But it wasn’t until December 2019 that the American Society for Reproductive Medicine lifted the experimental label, giving more girls and women with cancer the opportunity to freeze ovarian tissue. Because the procedure is relatively new, many fertility clinics don’t offer it yet. In addition, there’s a chance that the tissue may have cancer cells that can start to grow when reintroduced into the body. “We think this risk is greatest if you have a blood cancer (such as) leukemia or an ovarian malignancy,” Smith says.

Ovarian transposition (or oophoropexy) is another surgical procedure that may protect the fertility of prepubescent girls and young women with cancer who need radiation therapy to the pelvic area. “Usually via laparoscopy, we move one or both ovaries away from the field of pelvic irradiation,” Salama says. After the patient finishes her radiotherapy, becomes cancer free and is fit to become pregnant, the ovaries could be placed back surgically into their original anatomical sites to help natural conception. If natural conception does not occur, IVF can be attempted.

When this procedure takes place in children, the ovaries, fallopian tubes and uterus often stay connected. In adults, doctors may disconnect the ovaries and tubes from the uterus. They can’t be reattached, but doctors can stimulate egg production and use IVF for conception. Moving the ovaries won’t protect them against systemic treatments such as chemotherapy.

Doctors also can take measures during cancer treatments to protect fertility. “Hormone suppression drugs such as Lupron (leuprorelin) or Zoladex (goserelin) can put the ovaries into hibernation during chemotherapy,” Constance says. “This may make cells in the ovaries less sensitive to damage because they aren’t actively trying to make eggs.” Menopausal symptoms are an unfortunate drug side effect. “I had a fan on my desk to help with the hot flashes,” says Maggie Davis, who was 24 when she took Lupron in 2013 during chemotherapy to treat stage 1 breast cancer.

The drug may have made a difference. In 2016, Davis, who lives in Marietta, Georgia, gave birth to a daughter conceived naturally. The eggs she froze before starting cancer treatments remain untouched. “My doctor said that I might need to use the eggs in the future,” she says. “There’s no way to know for sure until I try to get pregnant again.”

Davis knows she’s fortunate to have had the opportunity to freeze her eggs and to not yet need them. “When I learned that egg freezing was going to cost almost $7,000, I didn’t think I could afford to do it,” she says. Fees for fertility preservation vary depending on the method and even the clinic location and doctor. “The medications to stimulate egg production can run as high as $6,000,” Smith says. “And then you still have to pay for the egg retrieval and annual storage fees.” The cost can reach $15,000, and there’s no guarantee that it will work. IVF with fresh eggs is effective about half of the time. Using frozen eggs or embryos may lower those odds.

Only 10 states have laws that require health insurers to cover some of the costs of fertility preservation procedures. Some fertility clinics offer discounts for people with cancer. Still, these expenses come at a time when women are also facing hefty charges for cancer care.

Vivian received her diagnosis toward the end of the year, which meant she paid two years of insurance deductibles in quick succession. The egg cryopreservation fee was $12,000. The couple borrowed money from family, and friends helped to raise money through a crowdfunding effort.

Davis was in a similar predicament. “I looked into a payment plan, but it cost $150 just to apply,” she says. If she was approved for the plan, she was told the interest rate could be as high as 30%. Instead, Davis’ mom, Mary Jones, helped out. Wanting to repay her mom, Davis began selling T-shirts emblazoned with “Team Maggie.” During a chemotherapy session, Davis and Jones discussed how unfair it was that young people with cancer might forgo fertility preservation because the costs were out of reach. Six months later, Team Maggie’s Dream was born.

The nonprofit organization provides fertility assistance grants to people ages 15 to 37 who have cancer.

“My daughter, Layleigh, is the best thing to ever happen to me,” Davis says. “She was a bright light after a dark period. It’s reassuring to know that I have options if I need help giving her a younger brother or sister. It would be wonderful for every young person with cancer to have this same opportunity.”

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Articles

How should fertility preservation be addressed in patients who may not be thinking about having children yet?

Preserving Fertility in Adolescent and Young Adult Women with Cancer

Thad Burke felt great after finishing his first Half Ironman triathlon in September 2013. Seven years earlier, Burke, then 20, had received chemotherapy and radiation therapy to put stage 2 Hodgkin lymphoma into remission. With cancer behind him, Burke, a resident of Brandon, Mississippi, was at his peak fitness level. So, when a routine annual cancer survivor checkup indicated a heart problem less than four months after the race, Burke was stunned.

“There’s always a fear of cancer recurrence when you go to these checkups. But heart disease in my mid-20s wasn’t on my radar. I had no symptoms and was more physically active than ever,” Burke says. “I was aware that cancer treatments could potentially affect my heart down the road. But I didn’t realize how soon down the road it could be.”

The squeezing action, known as the ejection fraction, of Burke’s left heart ventricle was low. His heart was pumping out 45% blood volume with each squeeze. A healthy ejection fraction for a man typically falls in the 55% to 70% range, according to the American Heart Association. Anything below 40% indicates some degree of heart failure. Burke’s echocardiogram reading showed decreased heart function. Although he didn’t have overt heart failure, there were definite changes to his heart muscle. Without treatment, the damage could lead to actual heart failure.

Doctors have known for some time about cardiotoxicity — the toxic effects that certain cancer treatments have on the heart. For instance, chemotherapy is effective because it kills cancer cells. But the drugs affect healthy cells, too, including the ones that power the heart. Herceptin (trastuzumab), anthracyclines and 5-fluorouracil have some of the strongest cardiotoxic effects. Radiation therapy, especially treatment that targets tumors in the chest area, can damage heart muscle and affect coronary arteries that supply blood and oxygen to heart muscles. Studies also show a link between certain targeted therapies, hormone therapies, immunotherapies and heart problems. However, in addition to direct injury to the heart and associated tissues, most heart problems in patients with cancer are a result of secondary effects of the drugs on blood pressure, lipids, sugar control and lifestyle changes. Cardiovascular disease isn’t exclusive to cancer survivors.

It claims the lives of 1 in 4 Americans each year, making it the leading cause of adult deaths, with cancer a close second, according to the Center for Disease Control Prevention.

The term “cardiovascular disease” encompasses a range of potentially life-threatening problems, including coronary artery or heart disease (often caused by plaque buildup in arteries), heart attack, heart failure, valve disease, aneurysms, strokes and arrhythmias. Cancer survivors also are more likely to develop pericarditis, which is inflammation of the sac surrounding the heart.

Survivors face cardiovascular disease treatment challenges, too. “People who have received radiation treatments to the chest can develop fibrosis. This hardened, scarred irradiated tissue can make it more difficult for a cardiovascular surgeon to perform procedures [such as] coronary bypass surgery or heart valve replacement,” says Dr. Daniel A. Mulrooney, deputy director of the After Completion of Therapy Clinic at St. Jude Children’s Research Hospital in Memphis, Tennessee.

Nearly half of Americans have some type of cardiovascular disease, according to the American Heart Association, and millions more are at high risk of getting it. Some of the well-known contributors to heart disease include high blood pressure, high cholesterol, diabetes, excess weight, family history, smoking and a sedentary lifestyle. But cancer and its treatments are rarely mentioned as risk factors, even though studies show that people who get certain cancer treatments are more likely to develop serious heart problems at a younger age than most of the population. And the outcomes for cancer survivors are worse: They’re up to six times more likely to die from cardiovascular disease than those who never have cancer, according to the European Society of Cardiology.

“Cancer screenings have increased the number of diagnosed cancers, including many cancers that once would have gone unnoticed. More people are receiving diagnoses of lower-risk cancers such as early-stage breast, prostate, thyroid and kidney cancers that respond favorably to treatments — if treatment is needed at all,” says Dr. Nicholas Zaorsky, an assistant professor in the Department of Radiation Oncology at the Penn State Cancer Institute in Hershey, Pennsylvania. “Because many cancer survivors are living longer, they’re more likely to die from another competing cause, such as cardiovascular disease, rather than the cancer itself.”

Zaorsky is part of a research group that conducted one of the largest and most comprehensive observational studies examining cardiovascular disease deaths among cancer survivors. The study looked at causes of death among people who had 28 different types of cancers over a 40-year span, from 1973 to 2012. Findings published in the December 2019 issue of the European Heart Journal indicate that 1 in 10 cancer survivors die from cardiovascular disease, not cancer. People receive a diagnosis of any type of cancer before age 55 are 10 times more likely to die from various cardiovascular problems than people without cancer. This risk was highest among people who have cancers of the bladder, larynx, prostate, uterus, colon or breast.

Still, it’s the treatment and not the cancer type that predisposes someone to heart and vascular problems. “Cancer treatments can raise blood pressure and blood sugar. They can stiffen heart valves and arteries. They can cause weight gain and bring on fatigue that makes it difficult to be physically active and maintain a healthy weight,” says Dr. Bonnie Ky, director of the Penn Cardio-Oncology Translational Center of Excellence at the Hospital of the University of Pennsylvania in Philadelphia.

Over the past 15 years, cardio-oncology has emerged as a new medical specialty. Cardiologists, such as Ky, partner with oncologists and hematologists to minimize the effects of cancer therapies on the heart during treatments and afterward.

“Unfortunately, adults may already have heart disease or heart disease risk factors when they receive a cancer diagnosis,” Ky says. “Cancer treatments can speed up the onset of heart problems and symptoms, causing heart damage earlier than we would expect.”

Children with cancer tend to have healthy hearts. “Because of their young age at the time of the initial cancer diagnosis and treatments, childhood cancer survivors have more years of living ahead of them,” Mulrooney says. “Everyone’s risk of heart disease goes up as they get older. But this risk, particularly the chances of dying from heart disease, may be greater for childhood cancer survivors when they become adults. This possibility is something we’re still studying.”

The good news is that many therapies in use today are less cardiotoxic than they were decades ago. “Radiation therapy in 2020 is better targeted than radiation therapy given in the 1950s,” Mulrooney says. “We’re able to more precisely target just the tumor, protecting more of the surrounding healthy tissue and cells.”

As new treatments enter the market and experts learn more about the long-term effects of cancer treatments on the heart, doctors continue to make changes to protect the heart health of people with cancer. According to study results published in the Journal of Clinical Oncology, since 2005, anthracyclines, one of the more cardiotoxic of chemotherapy drugs often used to treat breast cancer, have steadily fallen out of favor. Doctors now turn to taxane chemotherapy drugs such as Taxol (paclitaxel) that don’t appear to cause heart damage.

The longer a cancer survivor lives, the more likely they are to develop some form of cardiovascular disease. The European Heart Journal study found that cardiovascular deaths are most likely to occur during the first year after a cancer diagnosis. “Some people get blood clots that cause life-threatening heart attacks or strokes,” Zaorsky says. “For others, their health

may have already been poor when they received their cancer diagnosis, and the treatments prove too toxic.”

Not everyone who has cancer will develop heart problems. But given that so many Americans either already have cardio- vascular disease or risk factors for it, the odds aren’t in most people’s favor. Fortunately, steps can be taken to maintain a healthy heart.

The early detection and treatment of cardiovascular disease are key to preventing additional life-threatening problems. For some people, such as Burke, taking a daily pill keeps heart disease in check. Burke takes carvedilol, a beta-blocker that relaxes blood vessels, improves blood flow and lowers blood pressure. “The heart problem hasn’t affected my ability to enjoy life,” he says. “I sometimes don’t even call it a heart problem because I’m able to take a pill and still do whatever I want.”

Cancer survivor Renita Michael developed an abnormal heart rhythm two years after undergoing surgery and isotropic radiation therapy for stage 3 thyroid cancer. “I fainted at work. When I saw the doctor, he said my heart was beating too fast,” she says. Michael, a resident of Hillsborough, New Jersey, was 38 at the time of the heart diagnosis in 2008. When medications didn’t help, Michael had a cardiac ablation to get her heart back into a healthy rhythm. She now volunteers with Cancer Hope Network, guiding people who have a new diagnosis of thyroid cancer. “I tell them to get their heart checked regularly, especially for the first couple of years after treatment,” she says.

The risk of heart problems associated with cancer therapies can persist for 20 to 45 years after treatments end, according to study results published in The BMJ. Although there’s time for problems to develop, there’s also time to prevent them or at least start interventions early. “Risk mitigation is a primary focus of many cardio- oncology studies,” says Ky, who serves as editor-in-chief of the American College of Cardiology’s scientific journal JACC: CardioOncology.

“We know that cancer survivors are more prone to high blood pressure, obesity and diabetes, which contribute to heart disease. If we can prevent these problems from happening or ensure better disease management, we can improve quality and quantity of life.”

There currently aren’t any medical guidelines for when cancer survivors need to see a cardiologist or get certain heart tests such as the echocardiogram that caught Burke’s heart problem. More cancer centers these days have cardio-oncology programs that provide ongoing heart disease monitoring, but not everyone has access to these services. The first step in protecting your heart begins with sharing your cancer treatment records or survivorship care plan with your primary care physician. Make sure that information is part of your medical records. “Often, the most appropriate management in terms of medical care for your heart depends on what treatments you received, including the total lifetime drug or radiation dose exposure,” Ky says. She recommends learning all that you can about your cancer treatments, particularly the potential heart effects. “You need to advocate for yourself by equipping yourself with knowledge,” she says.

Cancer survivors also may need to keep a closer eye on important numbers such as blood pressure, blood sugar, cholesterol and weight. See your doctor if you experience symptoms of a heart problem, which include fatigue, shortness of breath, persistent cough, swollen legs, heart palpitations, racing heart and decreased physical activity. As Ky notes, “We believe that cardiotoxicity is a detectable, treatable, preventable and manageable problem.” For more information about cancer treatments and heart health, visit the American College of Cardiology’s CardioSmart at 

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Doctors have known for some time about cardiotoxicity — the toxic effects that certain cancer treatments have on the heart. Here, we take a closer look. 

Understanding Heart Problems After Cancer Treatment

Lauren Ghazal was in a state of shock after she received a stage 2 Hodgkin lymphoma diagnosis two years ago. “I couldn’t process anything that was happening,” says the now 28-year-old. “I focused on doing what was needed to get through treatment.” Cancer treatments were rough, but Ghazal was even less prepared for what came after treatment ended. “I no longer had frequent visits with my oncologist. Friends and family checked on me less and less. And there I was, bald and extremely fatigued from chemotherapy,” Ghazal says. “I’m told to go and live my life again. And that’s when I fell apart.”

Up to 20% of cancer survivors experience significant anxiety, depression and/or post-traumatic stress sometime during the 10 years after receiving a cancer diagnosis. Nearly twice as many deal with fear of recurrence and distress brought on by post-treatment side-effects, altered body image, social isolation and financial struggles. “People want you to bounce back to your precancer self because they’re truly happy that you’re finished with treatments and free from disease,” Ghazal says. But she unexpectedly found herself facing an onslaught of new diseases, ones that threatened her mental well-being. “I was diagnosed with severe anxiety and depression,” she says. 

A family nurse practitioner, Ghazal learned she had cancer while pursuing a doctorate in nursing research at the New York University Rory Myers College of Nursing. Inspired by her life experience, she now studies cancer survivorship issues in adolescents and young adults with the goal of improving their overall quality of life.

Back To 'Normal' After Treatment For Cancer

By 2040, experts predict there will be more than 26 million cancer survivors in America. Based on findings from several studies, these survivors can expect to spend large portions of their lives managing the disease’s effect on their physical and mental well-being. “Post-treatment is the time when well-intentioned family and friends assume their loved one is ‘back to normal.’ But it’s also the first time a cancer survivor has the time and energy to process their experience,” says Lucia Fanjul, a licensed master social worker at CancerCare, a national nonprofit organization that provides free professional support services to people affected by cancer. “For survivors, this is often a period of intense sadness, anger, instability and anxiety. The urgency of the diagnosis and active treatment has passed, but the emotional turmoil remains.”

Studies show that cancer survivors are more than twice as likely to have debilitating mental health problems and 

worse overall quality of life than people who never get the disease. And the incidence of mental health problems is six times higher in survivors who have other chronic illnesses, such as heart disease or diabetes. In general, cancer survivors who are young, less educated or earn lower incomes struggle the most.

Baltimore resident Katie Petralia was diagnosed with anxiety and post-traumatic stress disorder (PTSD) after completing treatment for stage 2 non-Hodgkin lymphoma three years ago at age 23. “My anxiety level skyrockets every time I meet new people who don’t know my cancer story,” she says. “I’m nervous to bring it up because I don’t know how people will react. It’s like I’m hiding some big secret.” Petralia is also still coming to terms with another unexpected blow: Cancer treatments may have affected her chance to bear children. “I had to start chemotherapy immediately because masses pushing on my throat made it hard to breathe. There wasn’t time to look into fertility preservation,” she says. “Even though I’m not at a point in my life where I’m ready to start a family, it’s been emotionally difficult to come to terms with what may or may not be possible for me in the future.”

Doris Cardwell of Spearfish, South Dakota, struggles with a different, all-consuming worry: whether her three daughters will also develop breast cancer. Cardwell, a contributor to CURE®, a sister publication of Heal®, learned of her stage 3b inflammatory breast cancer in 2007 when she was 38. While there doesn’t seem to be a genetic link to this type of breast cancer, Cardwell wrestles with guilt. “My daughters are in a high-risk category because of my health history,” she says. “At a very young age, they’ve already had to face life-altering decisions. I worry about them getting breast cancer, as well as my cancer coming back.”

While undergoing treatment at Cone Health Cancer Center at Alamance Regional in Burlington, North Carolina, Cardwell helped start a survivorship program. She’s now an ambassador for the National Coalition for Cancer Survivorship (NCCS). After more than 10 years in remission, Cardwell says she doesn’t think she’ll ever put cancer completely behind her. “People offer encouragement and say, ‘You’ll be fine,’ when I have a scan coming up,” she says. “But only someone who has experienced cancer understands how quickly life can change. You never again assume that everything will be fine.”

Well-intentioned family and friends aren’t the only ones who assume all is well. After treatments, cancer survivors often find themselves thrust back into the care of primary care physicians who may not fully grasp cancer’s lingering effects on both the body and psyche. Cardwell temporarily relocated her family to North Carolina while getting treatment. Now that she’s living in South Dakota, finding a doctor who understands issues such as the cardiotoxic effects of chemotherapy on the heart has been a struggle. “One doctor told me my concerns were unfounded. I felt like I was being labeled a difficult patient,” she says.

Dr. Thomas J. Smith, a medical oncologist and palliative care specialist at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore, understands Cardwell’s concerns, but he says primary care physicians are challenged to keep up with the latest findings on all types of diseases from heart disease, diabetes, hypertension and, yes, cancer. “Ideally, a patient would take a survivorship care plan prepared by their oncologist or cancer center and hand that to their primary doctor to get the ball rolling on proper follow-up care,” says Smith, who also recommends asking the front desk to schedule a longer appointment so a patient doesn’t feel rushed.

Anxiety, depression and PTSD are the most well-known mental health problems associated with cancer. But doctors are seeing an uptick in cancer survivors who feel demoralized and apathetic. “These are true clinical diagnoses,” Smith says. “You’re tired of being tired. You’re tired of feeling hopeless, sick and helpless. Yet you feel like there’s nothing you can do about any of it, so why try.”

Smith knows this feeling intimately. In 2016, he had surgery for prostate cancer. The cancer came back and spread. Treatment intended to save his life caused lung damage that keeps him from enjoying a lifelong passion: running. At one point, he felt so low that he checked into a psychiatric unit to keep from harming himself. “The continual uncertainty of what life holds takes a toll,” he says. 

“You’re always wondering: Will the cancer come back, what will that feel like, can I make it through more treatments, how will it affect my loved ones? And, of course, am I going to die sooner than I hoped?” Recently, Smith recognized that he and the cancer survivors he treats experience PTSD triggers almost daily. “It can become a constant struggle to have a few hours where you don’t think about cancer,” he says.

Dealing with cancer is a life-altering, traumatic experience. “A cancer survivor needs time to process what has happened to them and to understand how the experience changed them,” Fanjul says. A mental health counselor can give survivors the tools to work through emotions. Antidepressants or anti-anxiety medications can help, if needed. What someone shouldn’t do is hide their emotions or feel shame, says Sarah Johnson of Boston. In 2017, Johnson, then 28, put on a 

brave face as she received treatment for papillary thyroid cancer. 

“You hear that thyroid cancer is a ‘good cancer to have.’ It’s highly treatable and curable. So that’s the message I conveyed to everyone: It’s cancer, but it’s no big deal,” she says. A year after surgery and radioactive iodine treatment, Johnson found herself swept up in a tidal wave of emotions. “It was like, ‘Oh my God, that was horrible! That was a big deal, and I’m not OK!’” says Johnson, who discovered that it’s harder to ask loved ones for support later on after having been emotionally detached during treatment.

Help comes in different forms. For Smith, an online support group provided a lifeline. “I had some unusual medication side effects that even my doctors didn’t understand or acknowledge, and then I found a discussion online dedicated to the topic,” he says. “I felt less alone and less crazy.” Meditating also helps him be less reactive to situations out of his control. “If I start to get panicky about an upcoming test, I find a space for that worry in my brain and park it there.” Smith uses Calm, a meditation app, and he also recommends some form of structured exercises such as walking, yoga or tai chi. “There’s undeniable proof that these activities benefit a cancer survivor’s physical and mental health,” he says.

Petralia found comfort in a four-legged friend. Earlier this year, she adopted an emotional support animal. “When my anxiety goes up, petting my cat Stevie calms me down,” Petralia says. Studies show that having a pet lowers stress, anxiety and depression and eases loneliness. If you live in a place that doesn’t allow pets, an official letter from a licensed mental health counselor allows you to have an emotional support animal regardless of the no-pet policy and without paying extra fees. And because emotional support animals don’t need special training like service animals do, you can find a good fit through your local animal shelter.

While undergoing treatment, Ghazal participated in an eight-week creative writing class sponsored by Lacuna Loft, a nonprofit organization that supports young adult cancer survivors and caregivers. She continues to put pen to paper, capturing her feelings in a journal. “I still see
a therapist, and when I’m anxious, I journal and talk to my friends,” she says. “At first, I felt defeated that I had just finished this rigorous cancer treatment, yet I couldn’t control the emotional fallout. My therapist helped me learn not to be ashamed to talk about the mental health effects of my diagnosis with others.”

Cardwell also finds it therapeutic to talk about her feelings — to family and friends, co-workers, her therapist and others. Her 

 and her NCCS ambassadorship are two ways she lets other cancer survivors know that it’s OK to feel all of the emotions. “I want others to know that they’re not alone, they’re not crazy and normal isn’t really a thing once you’ve had cancer,” she says. Cardwell is doing her part to educate people without cancer, too. “I’m no longer bashful about explaining how cancer affected me in the past and continues to affect me today,” she says. “I remind myself that people have no idea what it’s like inside my heart, body or head post-cancer. They can only know if I tell them. Over the years, I’ve learned that it takes more strength to get help than to hold it all in. If you don’t get it out, it will swallow you.”

By 2040, experts predict there will be more than 26 million cancer survivors in America. Based on findings from several studies, these survivors can expect to spend large portions of their lives managing the disease’s effect on their physical and mental well-being.

Navigating the Psychosocial Effects That Can Outlast Cancer And Its Treatment

Kristine Barrows felt anxious about her visits to Cancer Treatment Centers of America (CTCA) in Chicago. Even with a family member behind the wheel, the four-hour round trip from Barrows’ home in Ingalls, Indiana, on top of medical exams and consultations with multiple specialists, left Barrows physically and mentally exhausted. Her anxiety mounted after the COVID-19 pandemic struck the United States in March.

Even though she knew CTCA was taking measures to protect patients’ health, Barrows, who received diagnoses of stage 1 breast cancer in 2010 at age 39, type 2 diabetes in 2012 and stage 4 breast cancer in 2016, would face a high risk of potentially fatal health complications if she contracted the virus.

When a nurse called to ask Barrows if she wanted a video visit with her doctor instead of an in-person appointment, Barrows eagerly said yes. “They talked me through how to download the software and even did a test session the day before my appointment to make sure I was comfortable using the technology,” she says.

During the video visit in April, Barrows’ endocrinologist assessed the effectiveness of her treatment plan by reviewing blood sugar readings accessed digitally through continuous glucose monitoring. With this system, a sensor implanted under the skin tests glucose frequently and sends results to a monitor. “My numbers looked good, and I wasn’t having any problems,” Barrows says.

That kind of diabetes follow-up usually occurs during a one- or two-day cluster of appointments at the cancer center that includes visits with experts in oncology, pain management, counseling and radiation, as well as integrative services such as acupuncture and massage, Barrows explains. This time, “the entire appointment took less than 20 minutes, and I didn’t have to sit through Chicago traffic afterward. It was great!” she says.

The idea of using technology to provide health care services, or telehealth, was first considered almost 100 years ago, when a 1924 

magazine featured an illustration of a doctor using a futuristic audio-video device to diagnose a patient’s case. The actual first known use of telehealth took place a couple of decades later, in the 1940s, when radiology images were sent more than 20 miles over telephone lines.

Telehealth services gradually expanded over the years, focused primarily on video visits to make medical care more accessible to residents of rural communities. Still, physician-patient video visits have been slow to catch on, with lack of insurance reimbursements among the main drawbacks. Historically, private insurers, as well as Medicare and Medicaid, either would not cover services like video visits or offered substantially lower reimbursements. Some patients were also reluctant to use the technology because they believed that in-person care was the best care.

The unprecedented spread of COVID-19 and nationwide directives to stay home quickly changed many people’s perceptions of telehealth. “Health care facilities and providers had to adopt, accept and accelerate this new medium of care to meet the acute and chronic care needs of patients immediately,” says Elaine Smith, a licensed marriage and family therapist and manager of behavioral health for CTCA in Atlanta.

That has included providing insurance coverage for telemedicine where it didn’t exist before the pandemic and relaxing laws that restrict doctors from remotely treating patients located outside the states where they’re licensed, although those changes may be temporary, says Dr. Judd Hollander, associate dean of strategic health initiatives at Sidney Kimmel Medical College at Thomas Jefferson University in Philadelphia.

The bottom line, according to Smith: “For people with cancer, it’s extremely important that there are no interruptions to treatments or other vital services.”

Although often used interchangeably, the terms “telehealth” and “telemedicine” refer to slightly different concepts. “When we talk about telemedicine, we’re typically referring to two-way, audio-video communication between a patient and their clinician,” says Dr. Reggie Saldivar, director of telehealth for the supportive care service at Memorial Sloan Kettering Cancer Center (MSK) in New York. “‘Telehealth’ is an umbrella term that encompasses health-related services utilizing digital technologies. Telemedicine is a type of telehealth.”

Many individuals have been using telehealth services for years, perhaps without giving it much thought. Examples include a patient emailing a provider through a portal, Barrows using a medical device to send blood glucose readings to her endocrinologist and a doctor accessing test results stored securely in a patient’s personal electronic medical record.

These telehealth services, as well as others, must meet Health Insurance Portability and Accountability Act (HIPAA) requirements to keep personal information secure and confidential. Electronic medical records have always been expected to meet these requirements. Zoom meetings with colleagues are probably not HIPAA compliant, but medical centers that turned to the webinar platform during the pandemic use HIPAA-secure versions to protect information; other HIPAA-compliant apps include Doxy.me and GoToMeeting.

The pandemic may have hastened the country’s use of telehealth services, but many medical and cancer centers have been developing and using these services for years. Here’s a look at a few recent telehealth innovations designed to protect the health of people with cancer.

In Philadelphia, Jefferson Health is using a modern triage approach to screen patients before they come to the emergency department. “They can use the JeffConnect app to have a video consultation directly with a physician anytime of the day or night,” Hollander says. The university is home to the National Academic Center for Telehealth, which focuses on improving the patient experience through technology.

“If a patient needs to be seen at the emergency department, we can take their medical history and symptoms during the video consultation, arrange to meet them at the door when they arrive and escort them directly into an isolated exam room. They don’t have to touch a door or check in at the front desk,” Hollander says. Patients also can go straight to the cancer center, avoiding the emergency department. In addition to reducing the risk of COVID-19 exposure, triage protects people with weakened immune systems from exposure to flu and cold viruses, as well as other germs.

Patients admitted at Jefferson Health, especially those with COVID-19, receive a hospital- issued, sanitized computer tablet so they can stay in touch with their care team and even loved ones who aren’t allowed to visit. “Right now, while personal protective equipment is scarce, the tablet offers a way for providers to check in on infected patients without physically entering the room unless necessary,” Hollander says. Patients might miss the face-to-face connection, but they benefit from more timely communication with physicians. “Instead of waiting for your physician to make it to your room, you can talk to your physician from wherever they are in the hospital,” he says.

MSK is launching a similar approach using bedside televisions, Saldivar says: “Clinicians can do a video call directly to the patient’s bed, allowing for remote consultations.”

Accessibility of clinical trials has always been an issue for people who don’t live near large medical centers, which offer the majority of trials and are usually situated in metropolitan areas. Strict protocols, including weekly physical examinations and the expectation that enrollees will pick up self-administered experimental drugs in person, make participation prohibitive for many noncity dwellers.  

Although the pandemic put a temporary halt to some clinical trial enrollments, many studies already underway continued with slight adjustments. “Trial participants are now monitoring health stats like weight, blood pressure and heart rate at home. And we’ve switched to telemedicine, or video visits, to inquire about side effects and other concerns,” says Dr. Jordan Berlin, associate director of clinical research at Vanderbilt-Ingram Cancer Center (VICC) in Nashville.

During the pandemic, the Food and Drug Administration OK’d mailing self-administered experimental medications to trial participants. Should this change become permanent, more people who live in rural communities and states with limited health care resources could benefit from greater access to promising new therapies. “I believe that telemedicine has the potential to make clinical trials safer,” Berlin says. “Patients who monitor their numbers at home tend to pay more attention to the readings and are faster to alert us if something seems off. We’re actually monitoring participants more closely now, even though we’re physically seeing them less frequently.”

A total of 76% of hospitals use technology to keep tabs on patients at home, according to the American Hospital Association. For instance, last year, VICC launched a program that allows patients receiving chimeric antigen receptor-T cell infusions to get nightly telemedicine checkups at home (or a hotel room if the patient lives more than 30 miles from the hospital). Typically, these patients would be confined to the hospital for a week or longer, but under this program, they visit the hospital twice a day for checkups and then use hospital-grade equipment to take their own vitals during nightly telemedicine visits. VICC also offers a remote radiation oncology survivorship program: Patients go to a clinic in Clarksville, Tennessee, for routine evaluations; 50 miles away, at VICC, a health care provider uses a specially designed stethoscope to listen to their hearts and lungs and a video-enabled dermatology scope to examine skin affected by radiation treatments.

Telehealth also offers a viable way for patients with cancer to meet with psychosocial support practitioners, from psychiatrists to social workers, without risking exposure to COVID-19, and to get genetic counseling.

COVID-19 put the kibosh on caregivers accompanying loved ones to medical appointments. This situation ratcheted up both patient and caregiver distress, but long-distance caregivers have always struggled with this problem. “Distance caregivers, or those who live more than 100 miles from the patient, report higher levels of anxiety and stress than local caregivers,” says Sara L. Douglas, a nurse practitioner who holds a doctorate in education and serves as the Gertrude Perkins Oliva Professor in Oncology Nursing and assistant dean of research at the Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland. “About one-third of people with cancer rely solely on distance caregivers to arrange transportation to medical appointments, schedule in-home care, order medications and medical equipment, and provide other critical care needs.”

Douglas is leading a National Institute of Nursing Research-funded study that explores how strategies including videoconferencing can ease this caregiver burden. Two-thirds of the participants used videoconference technology to attend a loved one’s in-person doctor appointment. “Video participants said they enjoyed getting to meet the doctor face-to-face, hearing information firsthand, having the ability to ask questions and being able to see their loved one at the appointment,” Douglas says. Patients said they felt reassured that their caregiver was present, if only on a screen, and felt less pressure to remember precisely what their doctor told them about their condition and treatment.

Despite most hospitals using some type of technology to connect patients and providers, telehealth is an evolving field. “The research on telehealth for patients with cancer is currently in its infancy, but my guess is that these services will prove to be safe and effective for the majority of patients,” Saldivar says. Findings thus far highlight telehealth as a positive addition to care. In a 2019 review of 233 studies focused on telehealth for acute and chronic care consultations, Agency for Healthcare Research and Quality investigators found that virtual appointments either improved outcomes or were equal to in-person visits. Telemedicine reduced hospital mortality and time in the emergency department and may have shortened hospital stays and lowered costs, improved emergency care outcomes and reduced the number of outpatient visits, the agency found.

Not all medical care can be done remotely, of course, and not everyone is comfortable receiving care from a distance. For instance, those who live in remote areas and are most inconvenienced by long drives to medical facilities are the same people who are least likely to have reliable high-speed internet access.

Connectivity wasn’t an issue for Chuck Kreuzer, who lives near Waynesburg, Pennsylvania. The 55-mile drive to the University of Pittsburgh Medical Center Hillman Cancer Center often meant a full day away from the auto body shop he owns and manages. Kreuzer was 47 when he learned he has thrombocythemia, a rare blood disorder. Since receiving the diagnosis in 2016, Kreuzer gets blood tests every three months, followed by a visit with a hematologist.

In March, that visit took place via video. Kreuzer never had to leave his shop, and his wife, Lisa, joined the appointment and asked the doctor her prepared list of questions. “The video visit wasn’t rushed, but it didn’t feel quite as personable or natural as an in-person exam,” she says.

Although Kreuzer appreciated the convenience of not battling Pittsburgh’s traffic and the safety factor of not entering a medical setting during the start of a viral pandemic, he still wants to see and be seen in real time by his doctor. “If my numbers come back out of range, I would feel more comfortable discussing what that means with my doctor in person,” he says. “Also, because this cancer increases my risk for an enlarged spleen, I would feel more reassured if I had a physical exam at least every other visit.”

From the perspective of health care providers, the challenges involved with providing telehealth include choosing and learning to use a platform, making sure there is proper information technology support and figuring out how to deal with scheduling glitches, Saldivar says. It may take some time to work these issues out, but there will likely be continued innovation and expansion in this field.

Telehealth experts understand patients’ and doctors’ concerns and know that technology will never completely replace in-person medical care. “For patients undergoing cancer care who might be asked to come to a clinic multiple times a week, a telemedicine visit can save quite a bit of time, money and stress,” Saldivar says. “Ultimately, we want to be sure that the telehealth services we’re providing are safe, effective and just as good as an old- fashioned face-to-face visit.”

Despite distance and a pandemic, telehealth keeps patients with cancer in close touch with their doctors.

Telemedicine in Cancer Care: So Far and Yet So Close

Caren DeSantis wasn’t surprised when tests showed that she had dangerously high blood sugar levels. “I had added 30 pounds onto my petite frame in less than six months, and I knew the extra weight wasn’t good for me,” says the Fort Worth, Texas, resident. DeSantis has always struggled with her weight, but the pounds really added up in October 2013.

That’s when DeSantis, then age 48, began taking steroids to keep nausea at bay while undergoing chemotherapy to treat stage 3c endometrial cancer. “It seemed crazy that I was getting bigger while feeling sick and having little appetite, yet I seemed to gain weight overnight,” she says. “And I was too wiped out from the cancer treatments to even think about exercising.”

As soon as DeSantis completed her treatments — surgery, six rounds of chemotherapy and 33 targeted radiation treatments to her pelvic region &mdash; she turned her focus to improving her overall health. She fixed nutritious meals and was constantly on the move, chasing after her active toddler daughter. She also started volunteering at Cancer Hope Network, a national nonprofit organization that pairs support volunteers with other people affected by cancer. Slowly, the blood sugar numbers crept down, but in 2015 the cancer came back, this time in the para-aortic lymph nodes near her left kidney. “After (I underwent) more radiation treatments, my blood sugar was off the charts no matter what I did,” says DeSantis, who received a type 2 diabetes diagnosis. “That diagnosis wasn’t as devastating as cancer, but managing another chronic illness is definitely a challenge.”

Up to 18% of people with cancer also have diabetes, a double whammy that makes a person even more susceptible to heart disease, stroke, kidney problems, nerve damage and neuropathy, or numbness or tingling in the hands or feet. The most common form of diabetes, type 2, makes the body resistant to insulin, a pancreatic hormone that helps blood sugar, or glucose, enter cells so the body can use it for energy. When cells resist insulin, glucose stays in the blood, building to unhealthy levels that can damage blood vessels and nerves.

An online search for diabetes risk factors will turn up a list of contributors such as excess weight, sedentary lifestyle, family history and age — people over 45 are more likely to have the disease. But one risk factor is seldom mentioned: cancer.

Study findings suggest that the incidence of diabetes is six times greater among people with cancer compared with those who don’t have cancer. Results of a 2018 JAMA Oncology study showed that cancer survivors are more likely to develop diabetes within two years of completing cancer treatments, although the risk remains elevated throughout a survivor’s lifetime. Perhaps unsurprisingly, people with cancer of the pancreas, the organ that makes insulin, are five times more likely to develop type 2 diabetes than people with similar risk factors and no history of cancer.

Diabetes odds nearly double for people with kidney or liver cancer. Still, experts caution that diabetes isn’t necessarily triggered by a certain type of cancer. Instead, it’s more likely that certain cancer treatments are responsible for raising blood sugar levels. The longer those levels stay elevated, the greater the chances of diabetes. Unfortunately, many cancer-fighting treatments are linked to diabetes. “Steroids mitigate nausea and other chemotherapy side effects and are a huge help in getting a patient through potentially lifesaving treatments,” says Dr. Azeez Farooki, an endocrinologist at Memorial Sloan Kettering Cancer Center in New York City.

“The downside is that people who take steroids often gain weight that can be hard to lose. Steroids also raise blood sugar, although this effect is usually temporary and goes away when steroid use stops.” Radiation treatments, whether whole-body therapy to treat blood cancers or targeted to the abdominopelvic region where the pancreas is located, may also destroy insulin-producing cells, he says.

There is also a correlation between diabetes and immunotherapies, such as those commonly used to treat kidney, lung and blood cancers. “Research suggests that approximately one out of 110 people who take immune checkpoint inhibitors (anti-PD-1 or anti-PD-L1) develops sudden and often severe onset of diabetes, requiring insulin treatments,” says Dr. Victor Lavis, a professor in the department of endocrine neoplasia and hormonal disorders at The University of Texas MD Anderson Cancer Center in Houston. Experts think the treatment triggers an attack not just on cancer cells but also on critical insulin-producing beta cells found in the pancreas.

Low estrogen levels may explain why women who are postmenopausal or in medically induced menopause because of certain treatments for breast or gynecologic cancers are more prone to diabetes. In one study out of the Women’s College Hospital in Toronto, nearly 10% of post- menopausal breast cancer survivors developed diabetes within six years of finishing cancer treatments.

Age may also play a role. The Centers for Disease Control and Prevention (CDC) estimates that more than a quarter of people 65 and older have diabetes. “As individuals get older, their risk for developing diabetes goes up regardless of whether they’ve had cancer,” says Denise Soltow Hershey, a family nurse practitioner and associate professor at the Michigan State University College of Nursing. Hershey, who also holds a Doctor of Philosophy in nursing, conducts research on diabetes and cancer.

Finally, the stress from managing a chronic disease like cancer, combined with angst-inducing situations like hospitalization, surgery, infection and fear of the unknown, can flood the body with cortisol. This steroid hormone causes stored energy to be released and converted into glucose that is released into the bloodstream.

Although these links are cause for concern, cancer does not always lead to diabetes.

“Regardless of cancer history, anyone can lower the risk of diabetes by being active, eating a healthy diet that is high in fiber and low in fat, and maintaining a healthy weight,” Hershey says. Because obesity raises the risk of diabetes and cancer recurrence, a healthy weight is key to staving off both diseases.

This doesn’t call for extreme measures: Dropping just 5% to 7% of excess weight and fitting in 150 minutes of physical activity every week can cut diabetes risk by nearly 58%, and that number jumps to 71% for people over 60, according to CDC research.

If a person’s blood sugar was elevated during cancer treatments, Farooki recommends blood sugar tests every six months for the first year after completing therapy. The American Diabetes Association recommends annual screenings for individuals at high risk of diabetes, or every three years for those at average risk. “There is a definite need for more aggressive diabetes screenings and disease prevention strategies for cancer survivors,” Farooki says.

The CDC estimates that more than one in three Americans have prediabetes, meaning their blood sugar levels push perilously close to a type 2 diagnosis. But 80% of people with prediabetes are unaware that they have the condition, so they miss out on opportunities to make proactive lifestyle changes that could halt disease progression.

There are several ways to screen for diabetes. The fasting plasma glucose test assesses blood sugar levels after the patient has gone without food and drink (excluding water) for at least eight hours. Results between 100 and 125 milligrams per deciliter indicate prediabetes.

A healthy number is anything below 99, whereas anything above 126 is considered diabetes.

Another blood test, hemoglobin A1c, provides an average of a person’s blood sugar levels over a period of two to three months. An A1c reading of 6.5% or higher indicates diabetes. A healthy level is less than 5.7%. The test is more convenient because it doesn’t involve fasting. However, preliminary findings from a study conducted at City of Hope’s Diabetes & Metabolism Research Institute in Duarte, California, suggest that the A1c test misses up to 73% of diabetes diagnoses compared with the oral glucose test.

In addition to getting routine blood tests, it’s important to be on the lookout for signs of diabetes: frequent urination, especially at night; increased thirst; unexplained weight loss; and blurred vision. “Many people with cancer experience ongoing symptoms of fatigue and neuropathy,” Hershey says.

“While these problems may be related to cancer treatments, they should not be dismissed, because they may also indicate diabetes.” It’s important to call a doctor if a person notices any warning signs of diabetes, including worsening problems like fatigue and neuropathy.

Diabetes contributes strongly to cardiovascular disease, the second leading cause of death for people with cancer — and probably the leading cause for people who have survived cancer for 10 years or more, so it’s vital to keep blood sugar levels in check. Elevated glucose levels can damage blood vessels, making people with diabetes twice as likely to experience heart disease or stroke. In addition, cancer survivors who have diabetes and don’t control their blood sugar report a lower quality of life in part because symptoms like pain and fatigue tend to be more severe. Poor blood sugar control also raises the risk of cancer recurrence, especially among breast cancer survivors.

Endocrinologists typically turn to metformin, a prescription oral medication, as the first line of treatment. “We treat diabetes the same regardless of whether you’ve had cancer or are currently going through cancer treatments,” Farooki says. “The goal is to bring blood glucose levels as close to normal as possible through healthy lifestyle changes and medications, if needed.”

Renita Michael takes Janumet, a combination of metformin and Januvia (sitagliptin), to manage diabetes that occurred after she had surgery and isotopic radiation therapy for stage 3 thyroid cancer in 2006. Michael, a resident of Hillsborough, New Jersey, was 36 at the time. “I was already seeing an endocrinologist for thyroid problems, so the diabetes was quickly detected,” she says.

Even with medication, Michael’s blood sugar remains high. It doesn’t help that she’s now recovering from lumpectomies performed in 2017 and 2019 after the cancer spread to her breasts. “I try to watch what I eat, and I get blood tests every three months to help my doctor deter- mine the best treatment,” she says.

Eventually, Michael may need to do daily finger sticks to check her blood sugar and administer insulin injections. Although the idea of managing another lifelong illness is unsettling, Michael is grateful that diabetes is treatable. “My family has a history of heart disease,” she says. “I’m focused on doing what I can to protect my health and heart.”

Research links the two diseases, a double whammy that raises even more health risks, but survivors can manage the chronic condition.
 

Diabetes After Cancer: There's No Glossing Over The Truth

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.”

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

Longtime Lung Cancer Thrivers

Overwhelmed, frustrated, scared: Boston resident Mary Jane Gendreau was slammed by emotions when she received a diagnosis of grade 4 glioblastoma in February, just a few days shy of her 60th birthday. Within two weeks, she had surgery to remove the tumor.

As she recovered and prepared for weeks of alternating radiation therapy and chemotherapy, Gendreau searched for online support groups and information about novel treatments. “My medical care team was great, but I didn’t feel like they had the time to sit with me, answer questions, explain alternative or complementary therapies or help me discern what my future might look like,” Gendreau says. “The hospital had a wall plastered with brochures, but I needed more one-on-one engagement and direction. Early on, it became clear that it was primarily my responsibility to research new studies, alternative therapies and potential clinical trials — all while I was still recovering from brain surgery.”

In her search for answers and resources, Gendreau stumbled onto the webpage for cancer coach Jeannine Walston. “I didn’t know that cancer coaches existed,” Gendreau says. “But when I read Walston’s story and saw her credentials, I knew she was the person who could help me navigate this confusing new world I was now living in.”

In 1998, at age 24, Walston learned she had a rare type of cancerous brain tumor, oligoastrocytoma. Over the past two decades, she has undergone three brain surgeries, radiation, chemotherapy, clinical trials and integrative cancer therapies, even venturing overseas for treatments. Walston’s diagnosis changed the trajectory of her life. She embarked on a cancer-focused career path, working as a patient advocate, educator and researcher for nonprofit organizations, the National Cancer Institute, the Food and Drug Administration and the National Institutes of Health’s National Center for Complementary and Alternative Medicine (now the National Center for Complementary and Integrative Health). She is also a 

Walston, who lives in Los Angeles, started offering her services as a cancer coach in 2007. “At that point, I had provided information to support groups, attended brain tumor and cancer conferences, and worked in the cancer field for 10 years,” she says. “Many people kept coming to me for advice and information. I wanted to help, and I knew my personal and professional experiences coaching cancer patients and caregivers addressed essential needs.”

The popularity of professional coaching has grown significantly since the 1990s. There are coaches to help discern purpose in life, improve health and wellness, navigate divorce and break into a new career. Whatever the problem, there’s a coach who can offer help. In many ways, cancer coaches are a natural extension of health and wellness coaching, helping clients — mainly patients but also caregivers and other loved ones &mdash; improve quality of life throughout the cancer journey.

“Cancer coaches provide a valuable service by helping patients create goal-oriented plans that help them manage particular challenges,” says Dawn Wiatrek, interim senior vice president of patient and caregiver support for the American Cancer Society (ACS). “As soon as you receive a cancer diagnosis, so many factors are out of your control. Coaches provide needed support and guidance that help patients break down barriers and instill a feeling of confidence. They empower the patient to feel more in charge of an uncertain health situation.” Wiatrek notes that the ACS has been coaching people for years through its tobacco cessation program. “Cancer coaching is a similar idea,” she says. “You are giving someone the tools to help them navigate what seems like an insurmountable task.”

 cancer coaching in St. Paul, Minnesota, says her services save clients from putting time, effort and energy into treatment planning that would be better focused on physical and emotional healing. “I research treatments, cancer centers, specialists and available resources and condense that information into easy-to-understand terms that spare the client the gloomy statistics,” Dendy says. In addition to helping clients manage the emotional side of cancer, she helps them maximize time with care teams. “Patients are often shocked at how little time they actually have with their oncologist or medical team,” Dendy says. “I make sure my clients are prepared for these appointments so they can advocate for themselves, get the answers they need and make informed decisions.”

The ACS sees so many patient benefits to cancer coaching that the organization is using a grant to provide coach training to ACS patient navigators employed at approximately 70 cancer or medical centers nationwide, Wiatrek says. “Historically, the role of a navigator has been to provide patients, caregivers and loved ones with resources for things like paying medical expenses, getting to and from treatments and connecting patients to community organizations that can offer assistance,” she says. “Increasingly, our navigators have found more patients relying on them to counsel them through what questions to ask their care team or asking for more personal guidance.”

As employees of hospitals or cancer centers, patient navigators and oncology social workers can help schedule appointments and medical tests, as well as work with billing departments and health insurers, something cancer coaches don’t do. Navigators and social workers may steer a patient toward general information about treatments and social support networks, whereas coaches can spend more time researching and gathering information specific to a patient’s needs.

Preliminary results from the six ACS sites that piloted the patient navigator coach training are positive. “Patients said that they felt more confident after being coached on how to improve communication with their care team,” Wiatrek says. Patients also understood their treatment plans better, and doctors noted improved compliance. By offering not only in-person sessions but also services via phone, Skype and email, cancer coaches may bridge a gap in care for patients who lack easy access to hospital or cancer center resources.

Because cancer coaching is a relatively new field, few studies address its specific benefits and effectiveness. Findings from a 2017 study from the University of Alabama at Birmingham showed that pairing older cancer patients with nonmedical professionals who received coach-type training reduced patients’ need for other health care resources, which in turn lowered costs. Other studies on health coaching suggest that these services bolster patient engagement, leading to improved quality of life, reduced hospital readmission rates and lowered medical expenses. Health coaching appears to be especially helpful for people dealing with chronic illnesses like cancer.

Cancer coaches aren’t meant to replace patient navigators, oncology social workers or case managers, and they are quick to emphasize that they are not medical experts. “I share what I know from my unique patient perspective and decades of experience working in cancer and health care arenas. I do not give medical advice,” Walston says.

Gendreau first turned to Walston for help gathering information about possible treatments so that she could consider them, speak to her care team and make informed decisions. “My job for a software company required doing a good bit of research, so I felt confident in my researching skills,” Gendreau says. “Still, I was overwhelmed when I started exploring my condition and treatment options. I felt like I was being buried in a landslide of information.”

Walston helped Gendreau create an action plan, breaking down her to-do list into achievable steps. This approach eased some of Gendreau’s anxiety and uncertainty. Walston also researched and shared information about integrative therapies, such as yoga, acupuncture and art, something Gendreau’s care team didn’t seem to have the time or expertise to address.

Most recently, Gendreau asked Walston for help deciphering the vast number of clinical trial opportunities. “I could ask my husband or daughter to do some of this research, but that exposes them to all of the scary statistics and information. They are as shocked and frightened as I am,” says Gendreau, who emphasizes that Walston serves strictly as her coach and not her therapist. “I have a terrific therapist who is helping me cope with my emotions,” she says. “The coaching aspect gives me a sounding board, a place to discuss ideas and next steps. Having Jeannine to turn to has greatly lifted a burden off of me and my loved ones.”

Some medical centers and nonprofit organizations pair patients and mentors who have a similar diagnosis. Cancer coaches go beyond this type of peer-to-peer service. “A mentor or peer provides emotional support. They can tell you about their experiences, but their role isn’t to give advice or offer suggestions on what you should do,” says licensed social worker Angelique Caba, senior director of social work administration for CancerCare, a national nonprofit organization that provides free, professional support services for anyone affected by cancer. “A coach provides practical guidance and helps you anticipate barriers to care and troubleshoot for problems.”

Donita Wheeler, founder of Donita Mama Bear, a cancer coaching company, believes her services complement those of other specialists. “I feel each of us has something unique to offer to the cancer community. We must lean on each other to get through the most difficult times,” she says.

That is exactly what Gendreau is doing with her coach. “I now know that it was naive of me to expect to get much hand-holding from my oncologist,” she says. “I appreciate that there are cancer coaches who have taken the worst evil you can imagine and turned it into a passion to help others.”

Cancer coaches make the disease and survivorship more manageable with goal-oriented plans.

Putting the Ball In Your Court With Cancer Coaches

 provides a list of cancer coaches who completed the Panic to Powerful training program and offer a free 30-minute consultation. But organizations like this are rare; even the International Coach Federation, considered a world leader in training and certifying coaching professionals, doesn’t offer a cancer-specific program.

Often, patients who want to hire a cancer coach must do their own research and go with their gut. A good way to start: Ask doctors or care teams for a recommendation. A simple online search will also reveal numerous candidates. Here are some factors to consider:

FEES: Cancer coaches work independently, not for a hospital or cancer center, which means that health insurers don’t cover their fees. Costs vary by coach and typically range from $50 to $150 an hour. Jeannine Walston, Talaya Dendy and other coaches offer packages. Some coaches charge a fee for an initial consultation. “Cancer is a costly disease,” says licensed social worker Angelique Caba, senior director of social work administration for CancerCare, a national nonprofit organization that provides free, professional support services for anyone affected by cancer. “When you are already facing steep medical bills, you have to decide whether hiring a cancer coach works for your budget.”

SPECIALTIES: Some coaches offer guidance through the entire journey, from diagnosis and treatment to survivorship. Others specialize. Donita Wheeler started Donita Mama Bear cancer coaching company in 2016 as a survivor of breast and ovarian cancers. Since then, she has been treated for melanoma and cared for her mother-in- law, who died this year from complications of non-Hodgkin lymphoma.

	Wheeler now specializes in helping those in survivorship. “There is a mentality that once you’re done with treatments, you’re done with cancer,” she says. “The reality is that you are still facing an uncertain future. Your cancer may come back. As a coach, I help clients focus on courage over fear.”

EXPERTISE: Cancer coaches tend to enter their line of work because of personal experience with the disease, either as a patient or caregiver, but that doesn’t mean coach and client must have the same diagnosis or type of cancer. “I’ve learned strategies for improved health and healing that aren’t specific to any one type of cancer, as each person with the disease is an individual,” Walston says. Look for a coach who has more to offer than the fact that they’ve been there, survived that. For instance, Walston learned from stints at cancer- related government agencies and nonprofit groups, Wheeler is a certified life coach and former teacher, and Dendy serves on advisory councils for cancer organizations.

Here are some factors to consider when searching for a cancer coach of your own.

Jeannette Moninger

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