treatment doesn’t mean the worry ends too. Experts say that moderate to high levels of fear of recurrence is a side effect experienced by nearly half of all cancer survivors.

But survivors don’t have to feel alone. Cancer Hope Network spoke with more than two dozen of its survivor and caregiver support volunteers to gather straightforward, practical tips for dealing with post-treatment anxiety.

Ed, a tongue cancer survivor, notes that fear of recurrence is something all cancer survivors deal with, but its how survivors respond that matters.

For instance, Marci, a two-time survivor of colon cancer, says she allows herself to “feel the fear”: “If fear comes up at a time when I can’t do a bit of introspection, I will tell myself that I can ‘be with my fear’ later that day.”

Christine, a caregiver whose husband is a stage 3 astrocytoma survivor, knows that addressing the grim practicality of details can be necessary. “People have to prepare for the downside just in case it ever happens,” she says. “Know what your family’s needs will be and how you will address them.” But she doesn’t get stuck in the details. “Once you’re done with that, focus on living each day truly in the moment — fully present.”

Linda, a two-time survivor and caregiver, advocates another approach: looking toward the future. “When done with treatment, set a mark ahead maybe two months,” she suggests, “and at the end of that, maybe another two months and then three and so on.”

Survivors should become active partners in their health care, says Diane, a breast and lung cancer survivor. “Working alongside my doctors keeps me conscious of the positive reality that at this moment I am cancer-free,” she says. “I then choose to live in that moment.”

Long-term ovarian cancer survivor and patient advocate Dee reveals her strategy: “The best way that I’ve found to deal with the fear of recurrence is to not miss your follow- up visits, scans and bloodwork. If you have a symptom or pain for more than two weeks, reach out to your doctor and let them know what is happening.”

Laura, an ovarian cancer survivor of more than 20 years, agrees. “Even if your doctor says you don’t have to come back, if it makes you feel more comfortable, ask if you can come early,” she says. “That’s how they found my breast cancer.”

Remember that each day is a gift, and make sure each is productive or fulfilling, advises Paul, a prostate cancer survivor and caregiver.

For Donna, who has lived with lymphoma for 19 years, that means finding delight in small things. “I try to enjoy a swarm of birds that has flown overhead, the peacefulness of an early morning sky ... always remembering to be grateful for another day,” she says.

“Although we are living with this disease, (we) don’t have to give up on life,” says Kathy, whose metastatic breast cancer was discovered six years ago.

Charlotte, a breast cancer survivor since 2012, chooses to believe that if she eats healthy foods, stays rested and enjoys time with friends, she will have good results. “Worry will only lower my resistance,” she says.

Marilyn, a 20-year breast cancer survivor, despite her cancer recurrence, treasures one of her mother’s favorite sayings: “Don’t lose your todays worrying about tomorrow.”

To be matched with a trained survivor support volunteer, visit cancerhopenetwork.org.

Articles

Advocacy

Survivor and caregiver support volunteers from Cancer Hope Network get candid with one of the emotional side effects of the disease.

Wisdom of the Crowd: Five Tips for Battling Fear of Recurrence

Adult survivors of childhood cancer with post-traumatic stress symptoms reported significantly more psychosocial and neurocognitive late effects, according to recent study findings. These survivors were also more likely to attend cancer-specific health visits.

More than 6,500 survivors were included in the Childhood Cancer Survivor Study and, at a median follow-up of almost three years, were evaluated through surveys and questionnaires. Questions covered sociodemographics, physical health, health behaviors and health care use.

Researchers discovered that 14.5% (995 individuals) of long-term survivors with post-traumatic stress symptoms had more impairment in mental and physical health-related quality of life, as well as in task efficiency, working memory, organization and emotional regulation.

Because these symptoms can pose challenges for a population that is vulnerable to late-term side effects, offering integrative services during follow-up visits may lead to better functional outcomes, the researchers said.

Snippets

Survivors of childhood cancer with post-traumatic stress symptoms reported more psychosocial late effects, a new study shows.

Childhood Cancer Survivors with Post-Traumatic Stress Symptoms Face Late Effects

Cancer-related cognitive impairment, also known as chemo brain or chemo fog, affects up to 78% of cancer survivors. However, interventions using computers and tablets may improve mental function, according to study findings published in the 

Researchers reviewed seven studies collected from four databases. Each study measured objective and subjective cognitive function and psychological aspects in cancer survivors.

Six programs were accessible online, allowing patients to practice at home. Sessions lasted 20-60 minutes each and ran from three to 15 weeks, depending on the program. Health care professionals contacted participants by phone or email to gather feedback and addressed concerns if patients had them.

The participants also received additional resources, such as discussion opportunities and homework, through online or offline sessions.

The computerized cognitive intervention helped improve executive function, memory, working memory and processing speed, according to the authors. “Results of this study will help provide optimal ways to develop and apply effective computerized-cognitive-intervention programs for cancer survivors,” they concluded.

However, they noted that their study included mostly women, and further research including more men should be conducted.

To help manage chemo fog, interventions utilizing computer screens and tablets proved promising in a new study.

On-Screen Intervention May Help Lift Mental Fog

When Lance Ferderer, 72, of Silver Spring, Maryland, received his first biopsy confirming that he had prostate cancer in 2016, he was told low-risk cancer could be monitored through active surveillance. But he didn’t remain in that protocol for long.

“I was persuaded by my primary care physician to sign up for a clinical trial at the National Cancer Institute looking at DNA in relation to prostate cancer,” Ferderer recalls. “After those physicians looked at my biopsy results, they had some concerns ... Although I had already had one MRI, the doctors performed a second one with their high-end tools and found that the cancer was more aggressive than my first urologist had thought. Suddenly the equation had changed. Treatment was now called for.”

Ferderer opted for surgery, but his physicians recommended that before the procedure, he follow a six-month regimen of Xtandi (enzalutamide). This hormone therapy prevents testosterone, which fuels the growth of prostate cancer, from reaching cancerous cells.

The treatment was a success. Since his surgery in 2017, Ferderer has been cancer-free. What’s more, so far, there’s no evidence that his bones were affected.

But many men with aggressive prostate cancer receive hormone therapy significantly longer — between 18 and 24 months. These men are at higher risk of one of the more serious side effects of this treatment: low bone mass, or osteopenia, a precursor to osteoporosis. This more serious condition, characterized by a decrease in bone mass and deterioration in bone tissue, weakens bones, making people vulnerable to fractures.

The two largest cancer survivor groups are men with nonmetastatic prostate cancer and women with early-stage breast cancer, whose treatments can cause high rates of bone loss, according to a recent American Society of Clinical Oncology (ASCO) guideline on management of osteoporosis for adult cancer survivors. Hormone therapies for both groups — anti-androgen therapy for men and aromatase inhibitors for post-menopausal women with breast cancer &mdash; contribute to bone issues, although the inflammation associated with the cancer itself can also be a factor.

As the number of cancer survivors continues to rise in the United States, increasing from 14.5 million in 2014 to 16 million in 2019, the need to address potential side effects from long-term treatment becomes even more pressing. With the new ASCO recommendations, as well as an ever-growing body of research on the effectiveness of exercise to keep bone loss at bay, practitioners have a number of tools to help prevent osteopenia and osteoporosis and treat patients at risk.

Bone is living tissue and is engaged in an ongoing process of resorption, or the release of minerals into the blood, and the formation of new bone. In healthy bones, these processes are in sync, but when resorption exceeds formation, the imbalance can lead to osteopenia, which can progress to osteoporosis.

Osteoporosis is not a problem only for cancer survivors. The International Osteoporosis Foundation estimates that at least 40% of post-menopausal women and 15%-30% of men will experience fractures. The natural aging process contributes to osteoporosis, as do lifestyle factors such as alcohol and tobacco use. Long-term use of glucocorticoids for a range of medical conditions, such as arthritis and asthma, can also take a toll.

Among cancer survivors, however, the rate of bone loss appears to be faster. The ASCO guideline points out that the rate as part of normal aging is about 0.5% for men, 1% for women in late menopause and 2% for those in early menopause compared with 4.6% for men on anti-androgen therapy and 2.6% for women taking aromatase inhibitors.

“This is part of a pattern of accelerated aging we see among some cancer survivors,” explains Dr. Patricia Ganz, director of cancer prevention and control research at the Jonsson Comprehensive Cancer Center at UCLA.

“In addition to survivors of prostate and breast cancer, leukemia patients taking high-dose steroids and transplant patients on long-term bed rest also face this issue,” Ganz says. “These patients are often young, yet they can lose a lot of bone mass. They may need to receive a baseline bone density test at a younger age than people who have not undergone intensive treatment.”

Ganz recalls a patient in his 30s who falls into that category. “Although he received limited treatment for (Hodgkin lymphoma), his internist had advised him to have a baseline bone density test, which showed that he had osteopenia,” says Ganz. “He’s now being treated with calcium and diet, but importantly, we’re aware that he needs to be monitored. His situation is in contrast to (that of) older patients, who have likely already had a baseline bone density test and may be taking bisphosphates, which support bones.”

In addition to using medications, survivors can protect their bones through diet, aiming to get 1,000 to 1,200 milligrams of bone-building calcium daily through foods such as milk, yogurt and cheese. Obtaining vitamin D, which aids calcium absorption, through foods, supplements or exposure to sunshine is also recommended by the National Institutes of Health.

Karen Roberts, 63, of Washington, DC, a longtime breast cancer survivor, had a bone density screening when she received a stage 2b diagnosis in 2009. Her bones were strong at that point and continued to show no signs of thinning during the five years she took tamoxifen, the anti-estrogen treatment typically given to premenopausal women. But her profile changed after she went through menopause and was put on the aromatase inhibitor Arimidex (anastrozole).

“My last bone screening, in July 2018, showed that I now have osteopenia,” Roberts says. “Although my next screening isn’t until the summer, the doctors check my calcium levels through blood tests, and they’ve been holding their own. With the help of calcium supplements, vitamin D and a diet in calcium-rich foods, I’ve been able to keep bone loss under control.”

The ASCO guideline advises getting regular bone density screenings and also stresses the importance of taking a family history because bone issues have a genetic component. A risk-assessment tool such as FRAX, developed by the World Health Organization collaborating center in the United Kingdom, can help determine an individual’s risk of fractures. “Being aware of these recommendations is especially important for physicians treating patients with hematological malignancies, which tend to be less well managed,” Ganz notes.

Exercise is key for overall health and well-being, according to Ganz. Not only will it maintain bone health, but it can also help reduce fatigue, fractures and falls, as well as lift mood, improve balance and boost self-confidence. Weight-bearing exercise such as stair-climbing, walking, and doing squats and lunges is best for building bones, whereas stretching helps increase flexibility in the joints. Nonimpact aerobic activities such as swimming have less effect on bones but are great for stamina.

A growing body of research supports the key role of exercise. For example, Hawley Almstedt, an exercise physiologist and registered dietitian at Loyola Marymount University in Los Angeles, has looked closely at the benefits for women who have survived cancer. In a 2016 study, she developed an aerobics and strength-training program tailored to this group and recruited 26 participants, with a mean age of 63 years. Eighteen women completed the full 26-week plan, and their bone density tests showed a marked improvement in bone mineral density at the spine, hip and throughout the body compared with at the beginning of the study.

But no matter how effective the program, it will only work if followed through. “We’ve found that if we prescribe exercise the way we prescribe medications, people are more apt to do it,” Ganz says. “I tell my patients that I expect them to live a long time, and exercise is a good way to prevent other chronic conditions.”

In the aftermath of treatment, exercise also offers a way to help the body heal. Carol Michaels, a cancer exercise specialist based in West Orange, New Jersey, has worked with women who had reconstruction breast surgery following a mastectomy. “Women may find that their range of motion has become limited, and they’re experiencing shoulder impairments,” she says. “We work on exercises to regain flexibility and range of motion, which in turn improves posture. Simple exercises can make a big difference to a woman’s health and well-being during a difficult time of life.”

Gail Kleinman, 70, a breast cancer survivor from New Jersey, felt drained and depleted following a double mastectomy in 2015. She participated in Michaels’ Recovery Fitness program for cancer survivors. By working out with weights and participating in water aerobics, Kleinman improved her balance and stamina. She also met a compatible group of women. “I’m a firm believer in exercise,” Kleinman says. “There’s nothing that it can’t help, from dealing with depression and anxiety to building the immune system. I don’t see a downside.”

Unfortunately, many cancer survivors may not be aware of the value of exercise or know how to find an appropriate plan. One resource: an online program called Thrivors, available through self-insured employers and pharmaceutical companies, which allows survivors to exercise at home.

“The platform offers participants access to a range of exercises geared to their gender, body type, level of pain and stamina,” explains Thrivors founder Cathy Skinner, a cancer exercise specialist based in Minneapolis. “Not only does the program guide participants through different exercises, it also tracks energy and pain levels, a record that patients can bring with them when they see their physicians. This feature empowers patients and gives them more control over their care.”

The approach is about to be put to the test. A clinical trial is recruiting breast cancer survivors between ages 40 and 70 years who exercise 30 minutes or less a day twice a week to assess the benefits of Thrivors+BH (bone health). This enhanced version includes resistance exercises developed by Kerri Winters-Stone, a professor at the Oregon Health & Science University in Portland, to improve bone health. The platform also provides access to a community of survivors, mindfulness training, nutritional advice and educational information. Embedded software will measure adherence, and surveys will assess engagement.

“Ever since my father developed multiple myeloma, probably due to exposure to Agent Orange during the Vietnam War, I’ve been passionate about working with cancer survivors,” Skinner says. “My goal is to have exercise for cancer survivors be as well-known as rehab is for cardiac patients. It’s just as important and should be just as prevalent and widely used.”

Feature

Cancer therapies can take a toll on the skeleton, but the right moves can minimize the loss.
 

The Bone-Building Blueprint For Better Health After Treatment for Cancer

Nothing beats cozying up to a warm meal on a cold winter day. The three recipes below— a comforting chicken soup, kicked-up salmon and spiced cider &mdash; will keep you filled and fueled.

Each features ingredients to boost immune function, such as antioxidant-rich produce and the superfood spice turmeric, which — like omega-3 fatty acids &mdash; contains anti-inflammatory properties.

Vitamin C is found in citrus fruits like lemon, lime and pineapple. Foods rich in this antioxidant nutrient should be a staple in everyone’s diet because of its ability to aid wound healing, support immune function and increase iron absorption. In relation to cancer, researchers are studying vitamin C to better understand its function in protecting cells by reducing oxidative damage.

Turmeric has been prized for hundreds of years because of its anti-inflammatory effects. The spice is commonly used in Eastern medicine practice to treat skin issues, pain and gastrointestinal conditions. In more recent years, turmeric has been studied to assess its role in reducing cancer risk.

Omega-3 fatty acids, found in foods such as fish (salmon, tuna, mackerel, etc.), nuts and seeds (chia seeds and flaxseed), avocado and olives, is a heart-healthy fat that may help reduce inflammation in the body.

1 tablespoon coconut oil or olive oil 1 yellow onion, diced

1-inch piece of fresh ginger, grated 2 tablespoons ground turmeric

2 large carrots, peeled and chopped into half-moons

16 ounces raw boneless, skinless chicken breast cubed (or you can use store-bought rotisserie chicken)

(can substitute bone broth for higher protein content)

1 cup coconut cream (or light cream or additional broth)

2 cups kale or spinach, de-stemmed and roughly chopped

In a large soup pot over medium, heat the oil. Add the onion, garlic and ginger. Saute&#769; until the onion is soft, and translucent.

Add the turmeric, cumin and red pepper flakes. Saute&#769; for about 1 minute to toast the spices. Add the carrots and celery and saute&#769; a few minutes more, or until they begin to soften.

Add the raw cubed chicken, broth and lemon juice. Cover and increase the heat to medium-high. Bring to a boil, then reduce the heat to low and simmer for 30 minutes. (If using rotisserie chicken, shred the chicken and add to the pot along with the broth. Bring the broth to a boil, then reduce heat to low and let simmer 15-20 minutes for flavor.)

Remove the cooked chicken breast and shred it with two forks. Return the meat to the soup and add the coconut cream and kale or spinach. Stir to combine and heat over low heat. Add the salt and black pepper.

To serve, ladle about 1 1/3 cups of soup into a bowl and sprinkle with parsley if using.

: Place the raw chicken in the crock pot, top with all the vegetables and spices, and add the broth and lemon juice. Cook on low for 6-8 hours or high for 4-5 hours. Shred the cooked chicken and then add coconut cream and serve.

381 calories, 12.3 g total fat, 34.5 g carbohydrate, 8 grams fiber, 33 g protein.

Blackened Salmon with Pineapple Pico de Gallo

Coconut or olive oil cooking spray 1 tablespoon paprika

1/4 teaspoon ground black pepper 6 ounces salmon

1/4 cup chopped fresh pineapple 1/4 cup chopped bell pepper

1. Heat the oven to 375 F. Spritz a baking sheet with the cooking spray.

2. To make the salmon: In a bowl, mix the paprika, garlic, thyme, red pepper and black pepper.

3. Place the salmon on the baking sheet and rub with the seasoning mixture, covering all sides. Bake for 25-30 minutes.

4. To make the pico de gallo: In a bowl, mix all the ingredients. Refrigerate until ready to serve.

5. Top the cooked salmon with the pico de gallo and serve.

Note: The recipe makes enough pico de gallo for 2 servings. Leftovers can be kept in the refrigerator for about 4 days. 

This dish pairs nicely with quinoa, wild rice or another whole grain. You can also roast your favorite green veggie to serve with the meal.

: 355 calories, 11 g total fat, 10 g carbohydrate, 2 g fiber, 33 g protein.

1 teaspoon grated fresh turmeric 1 1/2-by-1/2-inch strip lemon peel Honey to taste (optional)

In a small saucepan over medium-high heat, combine the cider, ginger, turmeric and lemon peel. Heat until a ring of bubbles appears around the edge of the pan, about 3 minutes. Cover and set aside too steep for 5 minutes. Pour cider through a tea strainer into a mug and add fresh, local honey, if desired. Serve immediately.

: 120 calories, 0 g total fat, 30 g carbohydrate, 0 g dietary fiber, 0 g protein.

is an outpatient clinical dietitian at The University of Texas MD Anderson Cancer Center in Houston, with a primary interest in the care of individuals with head and neck and gastrointestinal/ colorectal cancers. She received her bachelor’s degree from Texas Tech University, where she is continuing graduate studies. Martindale has worked as an oncology dietitian since 2016 and is pursuing board certification in oncology nutrition. 

Knowledge

Soup, cider and salmon help keep the body full and fueled when it’s frigid outdoors.

A Taste For Wellness: Warming Winter Fare

A mother’s love is incomparable. The bond she shares with her children is not only unique but also often drives her to be the best version of herself.

Felicia Robinson understands this well and relied on that relationship when she faced the most shocking news of her life — a breast cancer diagnosis.

Because Robinson’s husband of 30 years worked overnights and her son was pursuing his music career, her daughter, DeAirah, became her caregiver. The mother/daughter duo share their individual perspectives about the cancer journey in a new book, “Surviving Pink.”

, Robinson details her mastectomy, undergoing chemotherapy and losing her hair and reminds others to never give up.

: In November 2017, you received a ductal carcinoma in situ breast cancer diagnosis. What ran through your mind? 

My immediate reaction was shock, and then my shock went to surviving, positive thinking and needing to gear up to fight. I couldn’t be defeated. I made sure that I kept a positive attitude throughout the diagnosis, and I figured that (it) would spread to my family and friends.

You ended up going for a second opinion. What prompted you to do so?

The second opinion was a family decision. I saw a doctor in Atlanta, and she recommended that I remove both breasts. But the diagnosis was showing that the cancer cells were only in the right breast, so I couldn’t understand why I had to remove both. And it was more of a personal, vanity thing with me because if I could keep one breast, I could kind of feel that I was part-whole. When I mentioned it to my family, they immediately said, “Let’s get a second opinion.”

They suggested going to The University of Texas MD Anderson Cancer Center. (I underwent) their entire battery of tests and the doctor recommended that I only have a unilateral mastectomy.

He said, “You know, breast cancer doesn’t jump from breast to breast, so if it’s in this one breast, let’s deal with the one breast.”

In “Surviving Pink,” you describe feeling, after undergoing mastectomy, that you had made a terrible mistake. How so? 

Once you have this surgery, you’re bandaged up and you don’t really see anything. You’re trying to digest that your breast is gone. ... I took a picture before surgery so I could see what I looked like before. It didn’t really hit me until I had to remove the bandages to actually see that I had one breast removed. ... You’ve done all your research online, but to actually see it — it takes you aback. But it also made me realize that I’m still alive. I may have one breast, but I’m still here.

My faith is what made me say, “Look, you’re alive. You are given another chance to live.” This is what life has given me, and I’m going to use this to the best of my advantage and move forward. So I didn’t stay in that state very long.

Following mastectomy, it was found that cancer cells had spread to some lymph nodes, which called for chemotherapy. Did you experience any side effects? 

The first chemo you’re feeling good; then, going into your second or third round of chemo, you start to lose your hair, and it’s shocking at first because it’s coming out. You put your hand through it and you have a lump of hair in your hand.

The other side effects were more nausea and fatigue. They give you medication for that, but it still hits you like a brick. You’re miserable. You lose your taste. Everything you eat tastes like metal. It gets bad, but it’s doable.

You can survive it. But there were some really low points, and that’s where my daughter stepped into the caregiver role. ... My husband worked nights, and she was the one that was here, so she got to experience all those things with me. She and I would Google what we could to figure out what works. We bought ginger and different teas. We just researched and tried to find what could help alleviate the symptoms.

Can you dive more into your relationship with your daughter? 

My daughter and I have always had a close relationship. We started a party-planning business about five years prior to the cancer diagnosis, so she and I worked together.

She was the first person that I went to when I discovered the lump. Her initial reaction was “Oh, maybe your bra is too tight or something under your arm, you know ... it’s nothing.” So, we went on with the day and worked a 50th birthday party that night. But within the next couple of days, every morning I woke up and I would feel if it was still there, and it was, so I needed to process it and then make the decision to share it with the rest of my family members.

And how did writing a book come to life? 

The following February, I turned 50, and at my birthday party I made the announcement. It came out of nowhere. Everybody was there, and they were excited. When we got home later that evening, my daughter asked me, “Oh, so we’re writing a book?”

We would put topics in a bowl, and at night or on weekends or whenever we had free time, we would just pull a topic and start writing about it, because I wanted her to write about how she felt and I write what I felt without us talking about it before.

When we finished everything, we went to Starbucks and swapped notes. It was a very eye-opening experience for me because I didn’t realize how she really felt and what she was really going through and vice versa.

What can readers expect from “Surviving Pink”? 

If you told me that by the age of 50 that I would have a breast cancer diagnosis, four rounds of chemo and a 22-year-old daughter stepping up as my caregiver, I would not have believed you.

But I was not sad, because I was thankful that I was surviving. “Surviving Pink” offers information, inspiration and encouragement for anyone going through a life-altering diagnosis.

My diagnosis was breast cancer, but for so many, it could be cancer, diabetes, heart conditions. It could be anything that kind of knocks you off the journey you had planned.

Never, never, never give up. There is hope even when your brain tells you there isn’t. You have to believe that there is hope. And you must keep going.

Book Shelf

A mother and daughter share their personal journey with breast cancer to help inspire others facing a life-altering diagnosis.

Book Corner: Discussing 'Surviving Pink' and Facing Breast Cancer With Hope

Practicing yoga may offer a safe and effective way to combat the fatigue that often follows a stem cell transplant, according to research findings.

The study, which was published in the Journal of Pain and Symptom Management, included 13 women and seven men with a median age of 51 years who experienced severe to moderate fatigue following stem cell transplantation. Donor stem cells were used in 19 participants, and one had the procedure using their own stem cells.

In the study, patients were enrolled in a six-week restorative yoga program that consisted of a weekly one-hour class and twice-weekly home practice using a DVD. Overall, 45.4% of participants adhered to the plan, with 60% following it to some extent. Participants reported no side effects.

Among participants who had received donor cells, seven had a history of acute graft-versus-host disease and six had active extensive chronic cases. Each type — acute or chronic &mdash; of this serious complication of donor transplantation affects different organs and tissues and produces different symptoms. The incidence of graft-versus-host disease may have affected adherence, according to the researchers, but overall results indicate that restorative yoga intervention in adult stem cell transplant survivors is safe and feasible.

Utilizing yoga can help patients with cancer fight off fatigue after going through intensive treatments like stem cell transplant.

Winter 2020 | Heal