The number of cancer survivors living in the United States has reached over 18 million, according to data from a 2022 study published in 

. And because the number of cancer survivors continues to increase — expected to reach 26 million by 2040 — care for this population after treatment has ended must continue to advance as well. 

®’s 20th anniversary, Heal® spoke with two experts about the importance of survivorship care plans, where they were 20 years ago, where they are now and the gaps that still need to be filled.

Dr. Anne Blaes, medical oncologist and director of cancer survivorship services and translational research at the University of Minnesota in Minneapolis, explained that there are two components to a survivorship care plan. The first being an outline of the diagnosis and treatment a patient received. The second is a follow-up plan, which includes the doctors or specialists patients should continue to see, what lifestyle they will need to maintain to stay healthy, advocacy groups for support and more.

“It’s important because most patients can’t recall the treatment they have had,” Blaes said in an interview with 

®. “It is also important because it outlines a plan of what they need to do moving forward and who’s responsible for what.”

Dr. Emily S. Tonorezos, director of the Office of Cancer Survivorship at the National Cancer Institute, agreed and added that the care plan can help survivors better understand what late-term side effects they may be at risk for. 

“Knowing what side effects they’re at risk for and what long-term surveillance or recommenda- tions might apply to them — those tend to be gaps for the survivor and whoever is seeing that survivor, (which is) usually a primary care provider,” she said in an interview with 

So, it is understood that survivorship care plans are important, and they are utilized much more today for cancer survivors to take advantage of. But, 20 years ago, survivors didn't have this direction.

Blaes said that 20 years ago there were no survivorship care plans at all, and then once the gap was recognized it soon became a “big can of worms.”


“What quickly happened is people ... (put) a piece of paper in the (cancer survivor’s) hand, which costs a lot of money and time, without educating them and connecting them with services, which is what was actually going to help them,” she explained.

This happened about 20 years ago, when the Institute of Medicine reported that cancer survivors do not have the same life expectancy as those without a history of cancer. They also reported gaps in primary care and a risk for recurrence and other complications. 

This launched the idea of care plans, which should have been helpful for these patients, but in the end were just a piece of paper, as Blaes described.

Having care plans then became a part of an accreditation, so the National Accreditation Program for Breast Cancers required a treatment summary care plan. If a site wanted to be accredited by the Commission on Cancer, they would need a care plan. Thus, it became more so a requirement for institutions and organizations to have, rather than a helpful tool for survivors.

“When the survivorship care plan was conceptualized, the idea was that you could create a record of the diagnosis and treatment, give it to the survivors and then that would ensure the survivors had the recommendations for surveillance and long-term follow-up,” Tonorezos added. 

Furthermore, she explained that looking back at what survivorship care plans were 20 years ago demonstrates how much progress they have made today.

What has happened over the past 20 years is an evolution in survivorship care, Tonorezos said. There has been a better understanding of what survivors need after treatment ends, as well as what needs to be included in their care plan.

“There’s been a movement from thinking of this survivorship care plan as a document to thinking of it as a process,” she explained. “It’s not just a one-time hand-off document with some information. It’s about an ongoing process to ensure survivors are getting what they need.”

This includes more work with nurse navigators, dietitians and other care team members to care for all parts of a survivor, Tonorezos said. In addition, Blaes noted that this comes from the new accreditation guidelines from the Commission on Cancer.

The update recommends survivorship care plans include a team of individuals for survivors to follow-up with instead of just one primary care provider. They also recommend institutions to take on projects to enhance the outcomes and care for cancer survivors. 

“I still think the treatments in the care plan are important, but I would look at it as they’re one piece in recognizing that survivors need a team to stay well,” Blaes said.

When discussing the progress survivorship care plans have made over the years, both Blaes and Tonorezos agreed that something survivors are benefiting from today is the advancement in technology. 

Twenty years ago, cancer survivors did not have access to their health records electronically, and were not able to schedule and have a doctor’s visit from the comfort of their home — but today they can.

“We have a growing population of cancer survivors, and the electronic developments ... have changed how their care is delivered,” Tonorezos said. “Of course, the (COVID-19) pandemic had an impact on survivorship care. (There has been a) growing utilization of telehealth and a recognition that there are some circumstances where it is extremely useful, and that survivorship care is probably one of those circumstances. With telehealth, a survivorship specialist (can) see more patients and have a broader geographic reach. That has been the most amazing thing that’s happened in the past few years.” 

Tonorezos added that now having access to personal medical records allows survivors to see lab results, past treatments and provider notes.

Additionally, the survivorship care plans can now outline resources for survivors to seek out on their own, such as advocacy groups. Blaes added that there are now webinars and other online educational services that can provide cancer survivors with a better understanding of what they are going through
and what to expect in survivorship. 

She also said that although there have been great advancements in survivorship care plans, and survivors do have many resources available to them, there are still gaps.

“We’ve realized that just enabling telehealth is not enough to ensure there is equitable access or that (those) who need care are getting it,” Tonorezos said.

Blaes agreed, as she said some of the gaps in survivorship care plans today include having parts of follow-up covered by insurance and individualizing care plans for each person based on their socioeconomic background. “We have a lot of these services now, but there is still a problem getting patients to them or to know they exist, or getting them paid for,” she said.

Blaes said she hopes that in the next 20 years, these gaps can be closed. Tonorezos also remains optimistic. 

“Every time there’s an advancement in oncology, diagnosis or treatment, there needs to be a corresponding movement in survivorship research,” she concluded. “Thankfully, there have been tremendous advances in oncology over the last few decades, so we have many opportunities to continue to improve the lives of survivors.”

For more news on cancer updates, research and education, don’t forget to 

Articles

The time after cancer treatment can be overwhelming, but great progress in survivorship care plans over the past two decades has provided better guidance for an easier transition.

20 Years of Cancer Survivorship Care Plans: From a Piece of Paper to a Process

Recipes provided by the Dana-Farber Cancer Institute 

Toss all vegetables on a cookie sheet with 1 tablespoon olive oil, 1/4 teaspoon pepper and 1/4 teaspoon salt.

While vegetables are roasting, make the quinoa as directed on the package, then set aside.

In a separate bowl or jar, prepare the vinaigrette. Whisk (or shake) together remaining oil, vinegar, honey, mustard, garlic, salt and pepper to taste, then set aside.

Once the vegetables are fork-tender, toss with cooked quinoa and vinaigrette. This may be served warm or at room temperature.

1 package (3 oz.) vanilla or lemon pudding

Add bananas, nuts or coconut flakes if desired.

Preheat the oven to 375 F. Cut the butternut squash in half and scrape out the seeds. Brush the cut sides with olive oil and sprinkle with kosher salt and pepper.

Place the cut halves of the squash upside down on a rimmed sheet pan and pierce with a knife in a few spots. Roast for 45 minutes, then remove from the oven and let cool.

When the squash is cool enough to handle, scoop the soft flesh from the shells.

Place the squash in a blender with chicken stock and Greek-style yogurt; puree. Add more or less chicken stock to adjust the finished thickness of your soup. Taste for seasoning and adjust if necessary.

Garnish with a dribble of heavy cream and chopped chives. Serve hot or cold.

With a new season comes a new rotation of vegetables that are at their peak — making it the perfect time to incorporate their nutritional value into meals!

Cancer Survivors Can Fall in Love With New Recipes

For some cancer survivors, the end of treatment is an exciting time and they are ready to get back to their life. But for many, a dark cloud continues to hang over them, as anxiety about potentially having to go through another cancer diagnosis creeps in. 

One cancer survivor described this time in survivorship as never feeling like she’s out of the woods and hesitating to spend money elsewhere in fear that the cancer may come back.

This common anxiety is called the fear of recurrence and can affect 2 in 3 cancer survivors, according to a recent study. The cover story for this fall issue of 

® digs further into how the fear of recurrence can negatively affect cancer survivors’ daily lives. But most importantly, experts offer advice on how to overcome this fear with worry sessions, journaling and more.

® spoke with two experts about the past 20 years of development in survivorship care plans. Twenty years ago, survivorship care plans were just a piece of paper and not a process, as one expert noted. 

But today, they are utilized much more, giving survivors a better idea of what to expect during survivorship and what they need to keep up with, such as follow-up appointments. But is more improvement needed in the next 20 years?

, describes her health transformation and how it has greatly affected her physical, mental and medical health. She always knew she had to make healthier choices after surviving cancer, so she decided to take control during the COVID-19 pandemic. After exercising more frequently and eating a healthier diet, she is proud to have lost 35 pounds and is living an optimum healthy life.

Speaking of healthy choices, it’s time to start incorporating fall recipes and vegetables into your diet! This issue of 

® offers three great recipes that include those delicious fall vegetables that are finally back in season. Make sure to try out the pumpkin pudding to satisfy that sweet tooth.

For many cancer survivors, a dark cloud hangs over them after treatment ends, as they fear their disease coming back.

Overcoming the Fear of Cancer Recurrence

Because of previously received cancer treatment, childhood cancer survivors may be at a higher risk of developing heart disease. However, the risks posed, such as high cholesterol, hypertension, high blood pressure and more, are often underdiagnosed and undertreated, according to a recent study.

Journal of the American Heart Association

, included 571 cancer survivors and 345 age-matched individuals without a history of cancer. The results concluded that survivors were more likely to have a preexisting heart disease risk factor than those without a history of cancer. 

Dr. Eric Chow, lead study author and pediatric oncologist at Fred Hutchinson Cancer Center in Seattle, told 

® that this is because treatments, such as radiation and anthracycline chemotherapy, increase the probability of developing these risk factors.

Rates of underdiagnosing these risk factors were similar among both groups (27.1% for survivors and 26.1% for those without a history of cancer), but cancer survivors were more likely to be undertreated for these risk factors (21% compared with 13.9%, respectively). The most underdiagnosed and undertreated risk factors included hypertension (18.9%) and dyslipidemia (16.3%).

Chow explained that underdiagnosing is not uncommon, especially in a younger adult population. 

“We tend to think of these conditions more as problems that affect older adults. So if there is someone in their 20s or 30s with higher blood pressure, as a provider ... they notice it, but it doesn’t strike them as it probably would for someone in their 50s or 60s,” he said.

Another challenge childhood cancer survivors may face when it comes to diagnosis and treating these risks is that they may not know they are at risk because they don’t remember the treatment they received, as they were so young, Chow explained. Thus, their access — and their physician’s access — to the treatment information may be limited. 

In this case, Chow said it is important for current patients with cancer and survivors to advocate for themselves and understand what their risk of developing heart disease may be.

Of note, the study results also demonstrated that survivors who had more “self- efficacy” toward their care — meaning they were more willing or able to manage their own health care — were much less likely to be undertreated or underdiag- nosed. 

“The ability to take ownership and manage their own health is associated, potentially, with better health outcomes,” Chow said. “But ... we don’t just inherit or are born with self-efficacy; that’s some- thing we learn and (is) an important area to improve on.”

With heart disease as the leading cause of noncancer mortality among this population, staying aware of their risk factors and advocating for their health is important for cancer survivors. 

“One of the messages of the study is that although they can’t undo the chemotherapy or radiation, if (they) do have high blood pressure (or other risk factors), addressing those — at least we think — will reduce the risk of heart disease, (which is) at least something that can be actionable at this time,” Chow concluded.

It is important for cancer survivors to know their risk of developing heart disease, even years after treatment has ended, as they may be underdiagnosed
or undertreated for them.

Awareness of Risk for Heart Disease May Mitigate Underdiagnosis in Childhood Cancer Survivors

Cancer treatment may leave some cancer survivors with fertility issues, but patients and survivors who are of reproductive age are consistently reporting fertility-related information as an unmet need. Thus, they are not receiving the care they need for it.

Study results, which were presented at the 2021 American Society of Clinical Oncology Annual Meeting, demonstrated that of 234 cancer survivors, more than half reported that their doctor did not talk about the potential fertility problems they may experience in survivorship. Additionally, one-fifth of survivors were not aware that there was an option to take steps for fertility preservation prior to starting treatment, such as banking sperm or freezing eggs.

“This means survivors are not receiving or cannot recall optimal cancer care,”
Julia Stal, lead study author and doctoral candidate in preventive medicine (health behavior research) at the University of Southern California in Los Angeles, said in an interview with Heal®. 

“Rates of fertility counseling are likely to depend on tumor progression and patients’ need for timely treatment. However, a fertility discussion is needed to inform action or manage expectations of preservation among patients.”

Problems with fertility after treatment typically happen because of
the tumor location or because of treatment with gonadotoxic treatment modalities (treatment that temporarily or permanently damages ovaries or testicles), so these discussions should be happening more often.

“These fertility discussions are important to have because the goal is to provide patients with an actionable pathway by which they can make decisions for their reproductive futures,” Stal explained. 

“The implications of providers not informing patients of possible fertility-related implications after cancer are multifold. Primarily, this may cause patients of reproductive age to be disproportionately affected by their cancer experience. It may also cause patients to lack the needed education to pursue fertility preservation options and ultimately can cause patients to lose their autonomy or their right to make an informed decision regarding their health care and reproductive futures.”

So, what does this mean for cancer survivors who did not have that conversation during treatment and now may be struggling? 

Stal noted that options to preserve fertility post cancer treatment are limited, which may also affect survivors’ mental health. 

She highlighted that in prior research, as reproductive concerns increased, so did depressive symptoms among cancer survivors at reproductive age, and roughly half of young adults have reported moderate to high reproductive concerns.

In another study, which included young adult breast cancer survivors, more than half reported that their family plans were not completed at the time of diagnosis and about 65% would have liked to have been counseled on fertility. 

“Because family planning is informed by comprehensive fertility discussions and planned for through fertility preservation, without adequate fertility counseling, young adults are likely to lack knowledge surrounding their reproductive potential and are unlikely to family plan,” she said.

"Targeted reproductive health care is needed to mitigate these concerns.”

For cancer survivors who did not have this discussion and did not family plan prior to starting treatment, Stal recommends establishing care with a clinician who has expertise in oncofertility.

“I encourage survivors to advocate for themselves and ensure their needs are being met. Fertility-related unmet needs are one of the most frequently endorsed unmet needs among survivors of reproductive age and targeted, individualized health care is needed to mitigate these unmet needs,” she concluded. “(They) should connect with a specialist, someone with extensive training in reproductive health — even better if they have training in oncofer- tility, meaning reproductive health specifically for cancer survivors.”

Some cancer survivors might not have had the opportunity to preserve fertility prior to cancer treatment, leaving them unable to family plan. 

Advocating for Reproductive Health in Cancer Survivorship

During treatment for stage 2 breast cancer, which ended seven and a half years ago, Karen Reynolds found it difficult and overwhelming to focus on creating a healthy lifestyle. But now as a cancer survivor, she said she finds it simple, empowering and even more important.

“During my treatment, I was so focused on healing that my experience with getting healthy and nutrition was overwhelming and complicated,” the now 59-year-old said in an interview with Heal ®.

For many years, Reynolds had struggled with her weight and knew she had to make healthier changes to her lifestyle, but once she received her cancer diagnosis, it was all too much.

About two years ago, admid the COVID-19 pandemic, Reynolds had lost her job and decided it was time to take control of her health. 

“The world (was) changing in so many unimaginable ways, and I felt like everything was so out of control. I knew the one thing I could control was me,” she recalled.

Reynolds made a promise to herself to come out of the pandemic better than how she went in. She joined a friend in her wellness journey, got herself a health coach and has since lost 35 pounds — understands how to keep it off — and improved her mental, physical and medical health along the way.

Some of the changes she made included prepping healthier meals, making healthier choices at the grocery store, adding more water, protein and vegetables to her diet, and eating less carbs and minimal sugar, essentially transforming her habits and relationship with food. 

She began walking regularly versus just taking her dog out — now she can do anywhere from 2 to 3 miles a day of walking. And after she lost the first 15 pounds, she got an indoor bike, adding cycling to her routine, and is now adding resistance as a weekly activity.

Changes like these can benefit other survivors, as well. There have been multiple studies suggesting that walking can improve quality of life in cancer survivors, and eating the right foods may decrease the risk of developing a second cancer. 

Dr. Ajaz M. Khan, medical oncologist and chair of the Department of Medical Oncology at the Cancer Treatment Centers of America in Chicago, discussed this further in an interview with Heal ®. 

“There’s a significant amount of studies that have (demonstrated that) ... leading a healthy lifestyle has shown survival benefit (and) a reduction in recurrence for patients who have already had treatment for their cancer,” he explained.

Not only can making a healthy lifestyle change improve a cancer survivor’s physical health, but it can also improve their mental health and quality of life.
Khan explained that during treatment and thereafter, cancer survivors experience a distress that can negatively effect their quality of life. 

However, some recent studies have shown it can improve with a healthy diet and exercise routine.

A few days into making her own healthy choices, Reynolds felt that affect on her quality of life, which motivated her to continue the lifestyle. One aspect of her life that she saw an immediate improvement in was sleep.


She had experienced insomnia, as many cancer survivors do, for years after treatment. However, after just a few days of making healthy choices, she was falling asleep easier and faster, staying asleep through the night and not waking up groggy. She was also able to rid the midday fatigue she had been experiencing.

“Feeling rested led to a better disposition for me,” Reynolds explained. “I was less irritable — my family tells me — which also meant a better relationship with my mother as her caregiver.” 

She has been caregiving for her 88-year-old mother for a few years now, and with the help of Reynolds’ meal changes, she has lost 20 pounds herself.

However, Khan noted, it is important to stay committed if a cancer survivor wants to see changes as Reynolds did. 

“Particularly in some of the survivorship studies that have been done in breast, prostate and colon cancer, (we’ve seen) that patients who can walk up to 300 minutes in a week (have) shown significant benefits compared (with) those who can’t,” he said. “So, there is an activity level they must achieve to enjoy a greater quality of life in survivorship.”

Although these changes are important to leading a healthy lifestyle after cancer, it can be hard. However, the results it can provide, such as better quality of life and reduced risk of recurrence, should fuel motivation, Khan noted.

“The first thing is acceptance of a new norm, which may not be what it was prior to receiving treatment,” he said. “The second thing is there’s still a heightened awareness of being empowered in terms of preventing their cancer from coming back.”

Reynolds is a testament to that. Once she started feeling better, making healthy choices became easier for her and she stayed motivated. 

“A few days into making healthy choices and experiencing it consistently, I began to feel differently, which allowed that mindset to stay top of mind,” she explained. “Healthy habits have given me a sense of empowerment. Even routine activity is now second nature (rather than) a chore.”


As Reynolds said, starting the commitment was hard, just going to the grocery store for healthy options was overwhelming. But now getting in and out of the grocery store is a much simpler task, and meal prep is something she finds pleasant and easy — she’s “got it down to a science.”

Khan said that before making the commitment, it is important to talk with a doctor or expert in the field, because there are a lot of facts and myths out there regarding a cancer survivor’s 

Although it’s a fact that physical activity and healthy eating can reduce risk of recurrence and improve quality of life, some of the myths he encounters with patients include the benefits of antioxidants, alkaline water and mega doses of vitamins. There isn’t enough literature to prove these work, according to Khan. 

“Those all should be discussed with the provider before engaging with them,” he advised.

Reynolds added that it is not all about losing weight; it is about optimum health and a lifelong transformation impacting all areas of one’s life. 

“When I think about optimum health, which was the goal for me, I think (about) favorable outcomes, maximizing performance in mind, body, spirit and finances — and all that comes together and impacts how (you experience) the world. Feeling healthy impacts how you show up every day,” she said.

She said a first step a cancer survivor should take is to decide what they want to improve, whether that’s reducing blood pressure, cholesterol, how clothes fit or just feeling all around better. And then find what path will help you accomplish and maintain your goal.

“Be gentle with yourself, because sometimes we get off track or fall short and miss the mark, but just be gentle. It’s a journey, not a race,” Reynolds said. “Getting healthy is liberating, and it’s empowering when you know how to sustain your goals.”

One cancer survivor describes how making healthier choices in diet and exercise has improved her quality of life and relationship with others.

The Journey to a Healthy Lifestyle After Cancer

When Aleah Hockridge was undergoing cancer treatments in spring 2015 for stage 3a breast cancer, the then 31-year-old resident of Santee, California, longed to hear the words “no evidence of disease.” 

However, when those words finally came 15 months later, Hockridge didn’t breathe a sigh of relief. Instead, she worried — a lot.

“For the first two years, I couldn’t shake the idea of the cancer coming back or spreading."

Even hitting the five-year milestone in February 2020 didn’t ease Hockridge’s fears. “I never feel like I’m out of the woods,” she says. “I don’t know if I’ll ever feel like this is behind me.”

It’d be hard-pressed to find a cancer survivor who hasn’t occasionally pondered their vulnerability to a cancer recurrence or metastasis. 

Although many individuals eventually move past this worry, some survivors develop what experts call a fear of cancer recurrence (FCR). Their persistent worries, fears and anxiety consume their thoughts, negatively affecting their ability to get on with their lives. 

This preoccupation about a cancer recurrence makes them hypervigilant to any physical symptoms that hint that the cancer is back or progressing.

“Fear of cancer recurrence is more intense and persistent than ‘scanxiety,’ which goes away after a scan. It’s also different from post-traumatic stress disorder, which causes you to relive past events,” says Heather Jim, a clinical psychologist at the Moffitt Cancer Center in Tampa, Florida. 

“A survivor with fear of cancer recurrence ruminates about future events they have no control over. Even though a recurrence may never happen, they can’t break free from this cycle of worry.”

As many as 2 in 3 cancer survivors have FCR, according to findings from a 2022 study published in the 

Despite its pervasiveness and the fact that this fear has certainly plagued some survivors, it wasn’t until the early 2000s that experts recognized FCR as one of the biggest unmet needs among cancer survivors. 

That’s when a panel of psychosocial-oncologists developed a Fear of Cancer Recurrence Inventory (FCRI). This 42-item questionnaire uses a scale of 0 (not significant) to 4 (very significant) to determine how a person thinks about a cancer recurrence. There’s also the FCRI-Short Form (FCRI-SF), with nine questions. 

For researchers, the FCRI provides a uniform way to measure FCR among survivors. It also gives clinicians a tool to gauge when a person needs help.

Normal or low levels of FCR can also be helpful, as they may motivate a survivor to get follow-up scans and examinations and make healthy lifestyle changes such as exercising more or changing their diet. 

It’s those with clinically significant results who worry Sophie Lebel, a clinical psychologist and professor of psychology at the University of Ottawa in Canada. 

“The more severe the fear — meaning an almost daily preoccupation with cancer recurrence — the greater the negative impact on quality of life,” Lebel explains. “Studies, including my own, show a strong correlation between clinical fear of cancer recurrence and depression, anxiety, distress and post-traumatic stress symptoms (such as) hypervigilance, intrusive thoughts and panic attacks.”

Lebel says she often sees patients who have adopted a what’s-the-point attitude. 

“They’re unable to plan a vacation, return to work or buy new clothes for fear that cancer will interfere with their plans.”

Anyone on the receiving end of a cancer diagnosis can experience FCR, regardless of gender, race, cancer type, stage or prognosis. But results from a study published in the 

 suggest that the fear and its impact may be greatest among young adult cancer survivors. 

“Perceiving a greater number of years ahead of them may be interpreted as more opportunity for the cancer to come back or spread and a greater burden to remain cancer free,” explains Maurade Gormley, an assistant professor at the University of Connecticut School of Nursing in Mansfield.

Gormley’s studies on genomic testing for risk of recurrence among hormone receptor-positive breast cancer survivors found that those with a greater risk of recurrence had higher FCR; however, some still had a disproportionately high level of fear, even when their genomic test results indicated a low risk of recurrence. 

“Factors such as how the individual perceives their illness and its consequences may be more important than their objective risk of recurrence,” she says. “This suggests that patients with cancer may benefit from closer follow-up of their emotional response to diagnostic and prognostic testing, regardless of their individual risk of recurrence.”

This need for improved communication is especially crucial when a patient transitions from active treatment to survivorship. 

“I wasn’t prepared for what life would be like when the routine of scans, treatments and doctor visits ended,” says Keith Tolley, a resident of Warwick, Massachusetts. 

Tolley was 61 years old in June 2017 when he was diagnosed with stage 3 melanoma. A year and a half later, the cancer spread to his liver and then to other areas. He underwent surgeries, an immunotherapy clinical trial, radiation therapy and additional immunotherapy treatments, scans taken in July 2020 showed a complete response to the treatments. 

After his treatments ended, Tolley found himself occasionally struggling with the loss of security he felt while receiving regular medical care. 

“It can be a struggle to shake that feeling of vulnerability and fear,” he says. “Early on, there were times when I would wake up in the middle of the night, worrying about the cancer coming back.”

Sleep problems, fatigue and pain are common issues among individuals with FCR. These symptoms can drive them to see their doctors more often, seeking reassurances that everything is OK. These actions can unnecessarily fuel anxiety and lead to higher health care expenses. 

After Hockridge had a couple of scans to look for the source of back pain that she was sure was metastatic bone cancer (it wasn’t), she made a new rule. 

“I track any unusual symptoms in a journal for two weeks and only call my oncologist if the symptoms worsen or don’t go away.”

When thoughts of a cancer recurrence become so intrusive that they affect the ability to function, enjoy life or plan for the future, mental health counseling can help. 

Studies suggest that clinically significant FCR won’t get better over time without treatment, and one of the most effective treatments is cognitive behavioral therapy (CBT).

“(CBT) gives you the tools to change negative thought patterns by breaking down what makes you anxious or scared and finding healthy ways to think about and manage them,” says Lynne Wagner, psychologist and professor of social sciences and health policy at Wake Forest University School of Medicine in Winston-Salem, North Carolina, who is conducting research on effective treatments for fear of recurrence.

One way to do this, Wagner says, is by scheduling worry sessions. 

“You set aside five to 10 minutes every day for three weeks to think about your fears and how you would handle a situation, should it come true,” she says. “Push aside any fears that crop up outside the session (or write them down) until it’s worry time. You decide when you’re going to worry. The sessions challenge the idea that worrying gives you control over a situation or its outcome. You learn to say, ‘Let me focus on what I can control’ whenever intrusive thoughts creep in.”

Wagner also teaches her patients how to use diaphragmatic breathing exercises at the end of each worry session to help ground them. 

“Deep breathing, mindfulness and meditation are great tools for coping with fear of cancer recurrence,” she says. “In some ways, a worry session is a type of mindfulness. The goal isn’t to change a thought but to become more comfortable with it.”

Facing his fears head-on is one way Tolley copes. 

“I analyze a fear to figure out what I’m feeling and why,” he explains. “I try to determine (whether) this fear is driven by something I can or cannot control and whether it’s based on what is actually true or what I’m imagining to be true.”

Tolley also sticks to a commitment he made to himself to never go through this journey alone. “When I can’t shake fear or anxiety, I talk to someone in my support system,” he says. “(Often), just verbalizing the fear to someone else takes away its power.”

Tolley learned some of these strategies through a survivorship program at his cancer center. But many centers, and even cancer specialists, are just now recognizing the importance of talking to cancer survivors about FCR. 

Psychosocial-oncologists are encouraging a two-pronged approach to raise patient awareness about FCR. 

The first step involves educating patients during and after treatments about the signs of clinical FCR and when to seek help. This educational step also includes making sure patients understand their actual risk of recurrence based on their unique diagnosis and what signs to look for. 

The second step encourages cancer care teams and primary care physicians to use the FCRI to identify those who need help.

However, finding that help may still be a challenge, Lebel admits. 

“This is still a developing field, so it’s often difficult to find a therapist who has experience helping people overcome this fear,” she says. 

If your cancer center doesn’t have a social worker or therapist who can help, Lebel recommends looking for a provider who specializes in treating anxiety and depression with CBT and mindfulness techniques. 

“There’s strong evidence that these interventions help, and you don’t need a lifetime of therapy,” she explains. “Many people see improvements after doing six weeks of once-a-week group sessions, or you can do personal sessions or even teletherapy.”

Hockridge tried teletherapy sessions during the height of the pandemic but decided they weren’t for her. “I’ve found some healthy ways to cope, like yoga, mindfulness and challenging myself to try new things like surfing and kayaking,” she says. “It’s been a lot of trial and error, and I still struggle.”

That struggle intensified this year while Hockridge was planning her fall wedding. 

“The fear of cancer recurrence comes back anytime I’m faced with big life decisions or changes,” she says. “I’m so grateful that I’m here to marry my soulmate and celebrate with our families. And yet, I have thoughts like, ‘Should we be spending money on a wedding if we need it to pay for future cancer treatments?’” Hockridge likens her fear to an invisible boulder hanging perilously from a rope above her head. 

“I try to pretend it’s not there because when I look up, the rope looks more frayed,” she says. “I fight the urge to look. Instead, I do what I can to cultivate joy, reduce stress and keep my eyes focused on the future. I must choose to believe that the boulder won’t come crashing down.”

Feature

Cognitive therapy, teletherapy, journaling and taking up other daily
activities may help cancer survivors overcome their fear of recurrence.

Heal Fall 2022