Winter opens its arms to the cold and flu season. Although the best way to prevent getting sick is to get a flu shot, be meticulous about hand-washing and practice safe food handling, eating foods that are rich in antioxidants and anti-inflammatory nutrients can help nourish the immune system and fight germs.

These three recipes highlight some key ingredients with powerful germ-fighting, health-promoting properties.

The steamy warmth of a rich chicken stock does more than clear the sinuses and provide old-fashioned comfort. Study findings have shown that the amino acids in chicken soup can help ward off colds by reducing inflammation in the upper respiratory tract. This recipe includes some ginger and lemon. Ginger not only fights inflammation but also eases nausea, and lemon provides a touch of acidity to help extract more minerals from the chicken bones. Slow cooking over 3 to 6 hours helps break down the collagen (protein) into gelatin, which is easy on the stomach. Sip the stock on its own as a hydrating liquid, or use it as the base of a hearty soup that includes lots of other tasty, antioxidant-rich vegetables and herbs. When making the stock, remember to observe food safety. After straining the stock into a container, let it sit in a sink filled with ice water to bring down the temperature quickly and keep it out of the temperature danger zone. Refrigerate in quart-size containers for up to three days or freeze for six months.

The grapefruit and avocado salad looks summertime fresh but is winter tough. Red grapefruit is an excellent source of vitamin C and lycopene, both of which provide antioxidant and anti-inflammatory assistance in fighting colds. The avocado’s creamy counterbalance to the tartness of the grapefruit also contributes healthy monounsaturated fats, which boost absorption of carotenoids and fat-soluble vitamins A, D, E and K. Almonds contribute crunch, protein, fiber and vitamin E, another antioxidant. Any dark leafy greens can form the foundation of this salad — all are nutrient rich. Don’t forget to scrub the outside of the grapefruit and avocado before cutting into them; otherwise dirt and germs can contaminate the fruit inside. Can’t eat grapefruit? Substitute Cara Cara (navel oranges) or blood oranges for similar nutrients and a colorful pop.

The combination of turmeric, garlic and ginger in Golden Confetti Cabbage is a trifecta of medicinal herbal delicious&shy;ness. Many of the health benefits of the anti-inflammatory compounds in turmeric are attributed to curcumin, one of its constituents. The sulfur compounds in garlic and their positive effects on circulation and cardiovascular health are well studied. In Indian and Asian cultures, anti-inflammatory ginger also is known as a “warming spice” that can help detoxify harmful chemicals. Cruciferous vegetables have stood the test of time in cancer-prevention studies, and cabbage’s polyphenols, vitamin C and manganese exhibit strong antioxidant activity to reduce oxidative stress and cancer risk. This dish, with its colorful and flavorful mix of red onions, orange carrots and green cabbage, ensures that many beneficial nutrients are represented at the table.

A germ-free environment does not exist, but a strong immune system, fueled by delicious and nutritious ingredi&shy;ents, can help promote good health all winter long.

About 4 pounds chicken parts (e.g., a carcass from a roasted chicken or purchased rotisserie chicken, cooked or roasted feet, wings, backbone or necks)

1 large unpeeled onion, washed well and quartered

1-inch knob ginger, peeled but not sliced

Handful of fresh herbs (e.g., thyme, dill and parsley)

Put all the ingredients in a 12-quart stockpot. Keep ingredients submerged.

Bring to a boil over high heat and then reduce heat to a slow simmer.

Simmer over very low heat, partially covered, for at least 3 hours and up to 6 hours.

Add hot water if needed to keep ingredients submerged.

Chill quickly in a sink filled with ice water.

Skim fat and discard. Use stock to make soup or freeze in quart-size containers for up to 6 months.

Tossed Green Salad with Grapefruit & Avocado

Add grilled shrimp or chicken for a main course salad.

5-ounce package mixed baby greens (e.g., spinach, kale, arugula and romaine)

3 green onions, thinly sliced, including white and green parts (about 1/4 cup)

1/4 cup combined of fresh lemon juice and reserved grapefruit juice

Remove the peel and white pith from the grapefruit. Working over a bowl, cut the grapefruit into segments. Reserve juice.

On an oval platter, layer in order: greens, scallions, grapefruit and avocado. Sprinkle with the almonds.

For dressing: In a small bowl, whisk the lemon and grapefruit juices, mustard, honey, salt and pepper. Add the oil, whisking vigorously.

Just before serving, drizzle about half of the dressing over the salad. Pass remaining dressing.

3 medium red onions, finely sliced (2 cups)

2 teaspoons peeled and grated fresh ginger

2 to 2 1/2 pounds savoy cabbage, quartered, cored and thinly sliced (about 6 cups)

Heat oil in a large enameled cast-iron casserole. Add the onion and a generous pinch of salt and cook over medium heat, stirring occasionally, until softened, about 5 minutes. Add the garlic, ginger and turmeric and stir for 1 minute.

Add the carrots with the broth or water and cook over moderate heat, stirring, until carrots just start to soften, 3 minutes.

Add the cabbage in large handfuls, stirring each batch until it starts to wilt. When all the cabbage has been added, cover and cook over medium-low heat, stirring occasionally, until the cabbage is tender, 20 minutes. Season with salt and pepper and serve.

is the supervisor of clinical nutrition services at the John Theurer Cancer Center at Hackensack University Medical Center part of the Hackensack Meridian Health system in Hackensack, New Jersey. She is a board certified specialist in oncology nutrition.

Articles

Feature

An expert from John Theurer Cancer Center shares three recipes to help fight winter’s germs.

Immune-Boosting Foods

Heather Tolley-Bauer is a wife, mother, comedian and colon cancer survivor — the latter a title she never expected to hold at the age of 45.

In 2014, she and her family picked up their life in Connecticut and moved to Atlanta for her husband’s job, and she began settling into her own new role. “For the first time, I was staying at home,” Tolley-Bauer, now 48, said in an interview with 

®. “But the house was empty, and I had always, always had my own thing happening.” Her son, then 5, was off to school, and her husband of 15 years was busy as an executive.

About six months later, with the unpacking completed, Tolley-Bauer signed up for a stand-up comedy class. The “45 and fearless” move transformed into a passion that has helped her cope with both “mom guilt” and a cancer diagnosis, she said. It also became her platform to raise awareness for the disease.

Tolley-Bauer said she feels lucky because her cancer was found early, at stage 1 — an uncommon occurrence in colon cancer. Her case was uncovered for an unrelated reason: She noticed a spot on her face and decided to get it checked. During the appointment, the dermatologist reviewed her family history. When he learned that Tolley-Bauer’s father had died of colon cancer about five years earlier, he urged her to get a colonoscopy.

Heather Tolley-Bauer created the brand Hyphen Up for her stand-up comedic performances.

“He asked me, ‘Have you ever heard of Lynch syndrome?’ And I said, ‘Yes, I have,’” Tolley-Bauer recalled. “Before my dad died, he said there was a doctor who kind of thought maybe there was a connection. He was never tested, so I never thought much of it.”

An inherited condition, Lynch syndrome increases a person’s risk of certain cancers, such as colon and endometrial cancer. The genetic mutation can occur in men and women, and parents have a 50 percent chance of passing it onto their children.

Because of her dermatologist’s persis&shy;tence, Tolley-Bauer went for a colonos&shy;copy in January 2016. The next month, she learned that a polyp found during the test was colon cancer. In March — colon cancer awareness month&mdash; she had two-thirds of her colon removed and underwent genetic testing. Tolley-Bauer was positive for Lynch syndrome. To reduce her risk of endometrial cancer, she had a prophylactic hysterectomy three months later.

“The way I describe it to people is: Imagine that somebody tells you that you’re going to get hit by a car, and you don’t know when and you don’t know where and you don’t know how bad it will be,” Tolley-Bauer said. “So you wake up every morning and you’re like, ‘Maybe it’s today.’ And you go to bed every night and you’re like, ‘Ahh … it wasn’t today. But maybe it’ll be tomorrow.’”

After learning the results, she did what she does well: She wrote jokes. “Four days after my diagnosis, I did a three-minute set just on having colon cancer,” she said. Since then, Tolley-Bauer has created Hyphen Up, the brand for her performances. It’s her way of making fun of herself for hyphenating her last name, which she now calls a pain in the neck. “Don’t hyphenate your name ever, because it becomes part of your name,” she said. “I’m at doctors’ appointments all the time. When I call or check in, I always have to say, ‘This is Heather Tolley Hyphen Bauer.’”

Hyphen Up also stands for what she is: a stay-at-home mom and a kick-ass cancer survivor. “The tagline is ‘Hyphen Up, Buttercup.’ And really, what that means is, embrace who you are. Embrace the pieces of your story,” Tolley-Bauer said.

She embraces hers by joking about the things that keep people, especially women, up at night. “For cancer survi&shy;vors, I know the secret handshake, so I make fun of the common experience,” Tolley-Bauer said. “It’s not funny to be told you have cancer, but it is kind of funny when I had colon cancer and the first thing people would say is ‘no shit.’ And I’d be like, ‘See, this is why we need to raise aware&shy;ness, because there’s lots of shit. It’s colon cancer!’”

Tolley-Bauer aims to place a comedic spin on colonosco&shy;pies because she understands that no one wants to get one.

“Do you want to be a badass or do you want to have a bad ass? You choose,” she said.

Heather Tolley-Bauer performs jokes about motherhood and her cancer diagnosis.

Like many cancer survivors, she has challenging days and struggles with what some call “survivor’s guilt.” That feeling came to light after two friends each lost a friend to colon cancer. Those women, who were younger than Tolley-Bauer and had children, had received their diagnoses the same time she did. “I really struggled with (the fact that) they’re gone and I’m here,” she said. “And I struggled with how lucky I am that we caught mine early. And I struggled with that because I have Lynch syndrome — how many times are they going to catch it early? I really did contemplate my mortality, which I try not to do, because I feel healthy. The saying that I’ve really been reflecting on a lot lately is ‘Focus on what you do have and not what you don’t have.’”

Her reality is that she never knows if her cancer will return or a new cancer will develop, but she vows to live her life and not allow stressors to take over. “My oncologist told me that if they didn’t find (my cancer) when they did that I would have had only five years to live,” Tolley-Bauer said. ““Three years later, I am able to tell jokes about it, and I am not fighting for my life. That really resonates with moms. My son’s story is not watching Mommy fight for her life. It’s Mommy telling butt jokes, and at 10 years old, that’s awesome.”

By joking about her cancer diagnosis, one survivor hopes to raise awareness and help people find laughter.

Humor Heals

Hot flashes, fatigue and other symptoms related to cancer may be improved through acupunc&shy;ture, according to study findings presented at the 2018 American Society of Clinical Oncology Palliative and Supportive Care in Oncology Symposium.

The study at the University of Texas MD Anderson Cancer Center in Houston included 375 people with cancer, most of whom were white (73.9 percent) and women (68.3 percent), with a median age of 55.6 years. Most had either breast or thoracic/head and neck cancer.

The patients, who received acu&shy;puncture at an outpatient center, completed a modified Edmonton Symptom Assessment Scale before and after each visit. This version of the pain-assessment tool involved rating 16 symptoms from zero to 10 (no pain to the worst possible).

At the beginning, the participants reported that their worst symptoms included poor sleep, fatigue, well-being and pain. However, acupuncture was associated with immediate and longitudinal significant improve&shy;ment across a range of cancer-related issues, including hot flashes, fatigue, numbness and tingling and nausea. For symptom change from initial treat&shy;ment to first follow-up, statistically and clinically significant improve&shy;ment was observed for spiritual pain, researchers noted. Spiritual pain is defined as a pain deep in a person’s soul (being) that is not physical. At follow-up, clinical response rates were highest for spiritual pain, dry mouth and nausea.

“Further research is needed to better understand frequency of treat&shy;ments needed in clinical practice to help maintain benefit,” the researchers said.

Snippets

Hot flashes, fatigue and other symptoms related to cancer may be improved through acupunc&shy;ture.

Acupuncture May Ease Cancer-Associated Symptoms

Tiki Barber is best known for his time on the field, playing as a New York Giant for 10 seasons. He holds almost every Giants rushing record — total yards, rushing yards and rushing attempts &mdash; and is second in rushing touch&shy;downs. His football career landed him a spot in the Virginia Sports Hall of Fame.

But Tiki and his brother Ronde Barber, who also played in the NFL for 16 seasons with the Tampa Bay Buccaneers, were sidelined by their mother’s breast cancer diagnosis in 1995. In an interview with 

®, Barber relives the moment he got the call and describes the strength he found in his mom, Geraldine.

®: What was it like to learn that your mom was diagnosed with cancer? 

This was a difficult time for me and my brother, because we were away at the University of Virginia, going into our third year, and we (got) a call from my mom telling us that she had breast cancer. And ultimately, she had to have a double mastectomy. It was terrifying for us because she was everything — our mother, our father, our mentor, our inspiration &mdash; and the thought of possibly having to live our lives without her was terrifying. But my mom is strong. She has always been that way. My mom just knows how to get things done, and she told us, “I have to get busy living or get busy dying.” It was inspirational in a way. And she fought it, and she pushed through hard. She came to our game the week after she had her double mastectomy &mdash; obviously, against her doctor’s orders. The chemotherapy was hard, but she was a trouper. She is now 22 years a survivor, and that inspires me. It was scary then. It is still in the back of my mind, but I’m inspired by my mom’s journey.

TIKI BARBER with his mother, GERALDINE, and Tiki Barber's brother RONDE.

When did you know that your mom would be OK? 

I knew my mom would be OK when she attacked this just like I would have attacked an exam or preparing for Florida State — anything we would do on a regular basis &mdash; with the vigor and the energy, the understanding and the details it takes to prepare for anything in life. That’s how she attacked her cancer. When she started articulating those things to us, we knew that she was going to be fine.

Did having a family member with cancer change the way you approach your health and life? 

I think (that) in a lot of ways, when my mom was diagnosed with breast cancer and ultimately survived it, it did make me start thinking about what I need to do differently. Obviously, family history is a big indicator of cancer in individuals, so my diet and what I put into my body became very important to me. And after I retired from the game of football, I stopped eating the bad things that I used to eat when I was playing, not necessarily because my mom had cancer but (because) somewhere inside of me, I think that being healthy is the best way to prevent cancer from developing.

Are you afraid that you, too, will end up with cancer? 

I’m not afraid that I will develop cancer. I think that I live a healthy lifestyle, but you never know. I don’t think my mother expected to be diagnosed with breast cancer. I don’t think that anybody who has come across it expected it to happen, but I think understanding that it can happen is the most important thing — and regularly seeing your doctor and getting your regular checkups. This was some&shy;thing I took for granted when I was a player, because you just had to go see the doctor. But when I retired, I didn’t see a doctor for six or seven years. When I got remarried and had kids again, my wife said, “Make sure you go to the doctor.” And I did, and I’ve been perfectly healthy ever since.

Is there anything you believe that oncologists don’t understand about what patients go through? 

I think oncologists know a lot about the patient experi&shy;ence, but the one thing that I would tell them is that open communication is really important. Even if it feels like you’re sharing too much information, it’s better to have more information as a family member of someone who is going through a cancer diagnosis. We all know how the information age works: You start Googling. You start searching and finding things that will terrify you. Information is key.

We often talk about the conversation that parents have to have with their kids following diagnosis. Can you describe that conversation with your mother? 

When my mom called us in 1995 and told us that she had breast cancer, our immediate thought was “OK, we’re coming home.” The University of Virginia was only about two hours away from Charlottesville, so it was close enough for us to get in the car and go. And she stopped us and said, “I’m going to be fine. I don’t want you guys to disrupt your life. You come home when you get free time. There is nothing that you guys can do. We will talk every day. But I got this.” And that confidence that she had made me feel confident. I think she got that confidence from her doctor and her nursing staff around her (who) told her she was going to be fine. It all starts with one positive emotion — one positive thought. It trickles through.

What advice would give someone who’s going through a similar experience? 

If you have a family member who is diagnosed with any form of cancer, talking is the best thing. Sitting in silence is how bad thoughts creep into your mind. It’s how negative thoughts creep into your body. Having conversations and being upfront and open about it is the best thing that you can do. Sometimes that’s hard and scary, but I think it’s cathartic. It helps you start to create positivity.

BARBER was the keynote speaker at the 2018 Chemotherapy Foundation Symposium® held in New York City.

People

The former NFL running back opens up about his mother’s battle with breast cancer.

Tiki Barber: Get Busy Living

The phrase “Treat the whole person” comes up often in cancer care. It refers to addressing not only medical needs, such as surgery, chemotherapy and radiation, but also psychosocial and emotional needs associated with cancer, its treatment and life after the disease.

Integrative medicine, which focuses not only on the body but also on mind and spirit, has grown in popularity in recent years. This “whole person” treatment combines medical and complementary therapies such as yoga, massage, nutrition and exercise to help patients and survivors cope with symptoms and side effects.

Now a mind-body option is making breakthroughs at two major cancer centers. “Dance/movement therapy is based on unifying all of yourself to be able to work with your body to help inform you about what’s going on and to be able to use dance in a way that is expressive and relieving but really (allows you) to do the things that you want to do in life,” says Anne Krantz, Ph.D., who has been a dance/move&shy;ment therapist for more than 40 years. She was trained by Blanche Evan, an early pioneer of the technique, and later earned her doctorate in clinical psychology.

Dance/movement therapy is used at some cancer centers to help patients during and after treatment.

In the early 1990s, Krantz started the Healing Through Dance program for adult patients and survivors at the University of California, San Francisco Helen Diller Family Comprehensive Cancer Center. Drawn to the cancer community after learning that her child had a benign tumor that would likely grow, she became aware of how she could help others through her skills as a therapist.

Dance/movement therapy improves health and well-being by integrating the emotional, social, cognitive and physical aspects of an individual, according to the American Dance Therapy Association.

The psychotherapeutic practice, which emerged in the 1940s, is based on four premises: Movement is a language; mind, body and spirit are interconnected; movement can be functional, communicative, developmental and expres&shy;sive; and movement provides a way to both assess condi&shy;tions and help treat patients.

Krantz has witnessed mind-body transformations in program participants, whether they attended for a few weeks or years. She remembers a patient undergoing treat&shy;ment who began a conversation with a 15-year survivor. “There is a supportive aspect of one person being able to say to another: ‘That pain will go away. That discomfort is healing discomfort,’” she says. Working with pain involves reducing fear of movement through a dance-style approach that boosts confidence, encourages expression and involves affected areas in a healthy way, she adds.

Krantz’s weekly sessions run an hour and a half. She often starts with a theme that allows participants to be creative in their own movement. Unlike traditional dance, such as ballet, tap and jazz, dance/movement therapy involves no routines to mimic. “Everybody’s body is different,” Krantz says. “(Individuals) are using their own sensation and initia&shy;tive and, in a lot of ways, their own capacities, possibilities and limits to get at the kind of movement that is the right thing for them (then and there).” Using imagination and expressive improvisation leads to an outlet of feelings and experiences that promote healing, she says. Functional exercises address needs for rehabilitation, reconditioning and awareness of body movement.

Research is limited, but some study results show that, for people affected by cancer, dance/movement therapy provides benefits related to body image, self-esteem, depression, anxiety, stress, physical pain and mobility and flexibility. A German study examined the therapy’s effects in 115 people in an inpatient oncological rehabilitation program. Participants were asked to complete question&shy;naires measuring quality of life, anxiety and depression and self-concept. Answers to a follow-up questionnaire completed at the end of the intervention revealed signifi&shy;cant improvements in quality of life and psychological well-being.

found that, among 139 Chinese women with breast cancer, short-term dance/movement therapy countered anticipated worsening of stress and pain during radiotherapy. “Their body is no longer an enemy — it’s an ally,” Krantz says. “Part of healing is reconnecting with the areas that have been affected by surgery and loss.”

For pediatric and young adult patients and survivors, dance/ movement therapy can play a role in their development and hospital experience, says Jenn Whitley, M.S., a dance/move&shy;ment therapist at the Bendheim Integrative Medicine Center at Memorial Sloan Kettering (MSK) Cancer Center in New York City.

Following her passion for dance, Whitley moved to New York City in the early 2000s and became involved with The Andréa Rizzo Foundation. The nonprofit organiza&shy;tion raises funding for Dréa’s Dream — dance/movement therapy programs for infants, children and young adults in hospitals, special education classrooms and medical settings throughout the country, including MSK. Whitley felt it was her calling, she says, and earned her degree in 2012, landing a job at MSK soon after.

“We operate from this body, mind and emotion perspec&shy;tive,” Whitley says. “Our goal is to help someone really get connected to how each part of their experience is affecting their whole self rather than just one part, such as the physical piece. Their illness is (affecting) not only their body but also how they are thinking and feeling. Dance/move&shy;ment therapy provides (an) opportunity for the patients to express and embody these experiences on all levels.”

This holds especially true for children, Whitley says. Her work with babies, children and young adults involves using colorful props, music and relating to each patient on their level. “This is such a profound moment in their life, because they develop and learn through their bodies, movement, (and) their sensory experiences and their senses,” she says. “Whenever you put them into this medical setting where their body is consistently being poked and prodded and they’re not able to just go and run and play — be a ‘normal child’ &mdash; their sense of who they are and their development might shift. We want to help provide them (the) opportunity to stay connected to the child in them, the part of them that keeps moving and keeps fighting.”

The therapy also helps parents by teaching them how to help their child cope with pain, such as breathing tech&shy;niques and rhythmic movements like swaying or rocking that can calm and soothe, Whitley adds.

MSK also offers Barre Fusion for adult patients, survivors and caregivers, including those who are not patients there. The class builds on today’s popular ballet barre exercises, incorporating cancer-focused psychosocial discussions and body-awareness approaches. Movement Happy Hour, a weekly, hourlong group session, is popular among caregivers and patients who have just completed surgery, Whitley says. “I think that it helps them reconnect to their body and understand what their body image is now. (The class uses) an embodied meditation in addition to focusing on body strengthening, flexibility and expression through movement,” she says. “In class, they can begin to reclaim who they are in their body.”

One particularly memorable case — a career high point for Whitley &mdash; involves a young man (all identifying factors have been removed) who was battling sarcoma, a cancer of the bones and soft tissues that had affected his leg. The patient struggled with the idea that walking would be a challenge. “There was so much anger and frustration around his leg that it was almost debilitating for him,” she says. “I helped him process these feelings about the part (of him) that was failing him in a way. He moved and talked through his feelings. It was so powerful for him to connect to it and process it, so he could accept it and move into more love for his body.”

Both Krantz and Whitley note that the therapy produces sense of connection — patients experience not just personal fulfillment but also a feeling of community. “They cannot only stay connected to the community that’s here but they can also offer advice, comfort and support for people going through experiences early on in their process,” Whitley says. “And that may be a way for them to continue to heal.”

Patients and survivors learn to reconnect with their mind and body through dance/movement therapy.

Make a Move

A new app aims to alleviate the can&shy;cer-related fatigue that plagues many patients and survivors and improve their quality of life.

Untire provides infor&shy;mation on what causes fatigue, educational vid&shy;eos and tutorials, weekly reports to measure prog&shy;ress and access to a private online community of peers. The daily program consists of a tip and three sections: My themes includes topics like fear, worry, anxiety and sleep; My Exercises suggests stress-reducing mind-body activities such as breathing techniques; and My Physical Activity offers energy-boosting exercises.

Developed by psycholo&shy;gists, patients and research&shy;ers, the free app can be used by patients and survivors of any cancer type or stage.

Available in 25 countries, Untire is available through the Apple App Store and Google Play. To learn more, visit 

Untire is available through the Apple App Store and Google Play.

Untire App Helps Curb Fatigue

In fall 1989, Joyce Reinecke, J.D., was traveling to Washington, D.C., for her Seattle-based law firm when stomach pain sent her to the emergency room. She was admitted to the hospital and learned a few days later that she had leiomyosarcoma, a rare cancer that affects smooth muscle tissue, most commonly in the belly.

She was 29 years old, which categorized her as somewhere between pediatric and adult patients with cancer, now known as Adolescents and Young Adults (AYAs). AYA patients are identified as those who receive cancer diagnoses between the ages 15 and 39, according to the National Cancer Institute (NCI).

Ten days after extensive surgery to remove four tumors, Reinecke was preparing to leave the hospital to go to New York for consultations with medical oncologists about her next phase of treatment — chemotherapy &mdash; when a member of her medical team stopped by.

“A fellow who had been on my case was close to my age and had been super involved,” she recalls. “He came by when I was getting ready to leave and said, ‘You know if you go forward with this chemotherapy plan, there is a good chance you may not be able to have children.’”

Reeling from shock, Reinecke replied, “No, I didn’t know that.” No one had mentioned it to her despite visits from many health care professionals, including a psychologist. Time was critical because fertility had to be addressed before she began any additional treatment.

“He was not an endocrinologist or a reproductive specialist, and he didn’t have a lot of information,” she says. “He just wanted to make sure I was on notice. I felt like, ‘Wow, this is crazy.’”

Reinecke and her husband, John, went into overdrive. Armed with research from the fellow, they talked with fertility experts in New York, where the most advanced procedures were available. “We had just moved from New York to Seattle and had no support system there, and my family was in New York,” Reinecke says, adding that the state also had some of the top sarcoma experts.

The couple decided to do in vitro fertilization, a new procedure at the time that was tied to her cycle. She had 22 eggs removed and fertilized. The embryos were frozen with the hope, Reinecke says, that she would be able to carry a pregnancy in the future. But as the weeks passed she saw that physically she had an extensive healing time. “We decided to move ahead with a way that would make us parents more quickly,” she says. They found a surrogate in California, and a year later were the parents of twin girls.

By interacting with other AYAs, patients will become aware of the issues for which they should be their own advocate.

Ultimately, Reinecke never received the expected news that her cancer had returned, so she never had to undergo chemotherapy. She also took on a new career as a leader in the fertility needs of AYAs, working for nonprofit organiza&shy;tions such as Livestrong and Fertile Hope.

“It had such an impact on my life,” says Reinecke, now the executive director of the Alliance for Fertility Preservation, a position she has held since 2014. “In terms of everything that we had to do and go through and the money we had to pay — that really became something that bothered me about the cancer experience.”

The Reineckes paid $9,000 for the embryo creation, which did not include the cost of storage and surrogate implantation. Today’s costs can vary from $10,000 to $25,000, depending on several factors, she says. And most insurance carriers do not cover any of the process.

Each year in the United States, around 70,000 AYAs receive a diagnosis of cancer, according to the NCI. Historically, the group has been understudied and underserved.

In addition to dealing with fertility concerns, these patients face unique challenges regarding education, finances, careers, relationships, and physical and mental health. The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) study was created by the NCI and the Lance Armstrong Foundation, now Livestrong, to help increase under&shy;standing of post-treatment issues of the AYA population and ways to offer them support and follow-up. Several cancer centers across the country are part of the study. Researchers found that AYAs have low awareness of clinical trials and cancer’s impact in areas such as finances and fertility.

The multicenter Childhood Cancer Survivor Study includes more than 20,000 childhood cancer survivors and 4,000 siblings. It has shown that survivors of childhood cancer are significantly more likely to report poor health as they age. Researchers also identified an increased risk of death beyond age 40. By 50, the risk of disabling, life-threat&shy;ening or fatal health conditions was 53.6 percent compared with 19.8 percent among siblings in the control group.

Clinicians caring for AYAs are seeing neurocognitive dysfunction, cardiopulmonary toxicity, endocrinopathy and second cancers. The frequency and severity of many of the late effects have been related to gender, age at diagnosis and the cumulative amount of treatment, including radiation and chemotherapy.

Diana DeVoe will never forget when doctors told her that her hand would need to be removed because her cancer was so advanced. She was 18 years old and had just finished her first semester at The Ohio State University. She had noticed a knot between the first and second fingers of her left hand but waited until Christmas break to have it examined. DeVoe received a diagnosis of alveolar rhabdomyosarcoma, a subtype of soft tissue tumors that most commonly occurs in large muscles of the trunk, arms and legs.

At the time doctors were ready to discuss the course of treatment, DeVoe’s parents had left her hospital room momentarily. “Because the doctors considered me an adult, they didn’t wait for my parents to return,” DeVoe says. In addition to telling her that her hand would need to be removed, they explained that she would be on a regimen of chemotherapy for more than a year with very strong drugs that would make her very sick. She recalls feeling alone and that she did not belong there.

DeVoe’s feelings about how she received the informa&shy;tion point to one of the challenges faced by both the patient and the medical community when it comes to treating AYAs, according to Casey Walsh, Ph.D., M.S.W, a licensed clinical social worker and senior research fellow at the University of Washington who has been involved with AYAs for more than 20 years.

In DeVoe’s case, her father refused to let doctors remove her hand until he sought other opinions. “Parents are often involved as the patient’s advocates, so if a patient is treated in the pediatric center, the medical team is accustomed to parent involvement versus if the patient is treated in the adult facilities,” Walsh says. “A lot of times patients fall in between both settings.”

Chronic psychological and cognitive impairments that slow post-treatment growth and affect quality of life are associated with AYA patients. It took DeVoe 20 years to stop telling people that her hand deformity was the result of an auto accident. She also suffered from depression and neuropathy (weakness, numbness and pain, usually in the hands and feet), as well as financial, educational and insurance challenges.

Historically, AYAs have been understudied and underserved. In addition to dealing with fertility concerns, these patients face unique challenges regarding education, finances, careers, relationships, and physical and mental health.

DeVoe underwent treatment for more than a year with no interaction from her medical team regarding help to overcome her depression and loss of self-esteem. She also doesn’t recall any discussions about late effects or follow-up care, except that the chemotherapy drug she took would end her fertility and could cause neuropathy, which began about 15 years after her treatment ended.

None of the doctors DeVoe saw could determine a treatment for the pain. Advocating for herself, she found a doctor at a local medical school who specialized in cancer late effects but had little to offer. DeVoe finally had a spinal stimulator inserted to help ease her neuropathy.

At the time, DeVoe was employed by a national hotel chain but lost 90 days of work while she sought help. The loss of time resulted in an ongoing insurance battle, which led to DeVoe losing her job and her insurance. Today she is a nanny.

In recognizing the needs of the AYA community, many cancer centers have created special programming, such as space designed specifically with a common area that encourages patients to get out of their rooms and meet others around their age. For example, the University of Texas MD Anderson Cancer Center in Houston offers a program in psychosocial and supportive care that includes educational and vocational assessments; counseling around self-esteem, body image, emotions and health behaviors; and assistance in pursuing fertility options.

Brandon Hayes-Lattin, M.D., created the Oregon Health and Science University Knight Cancer Institute’s AYA oncology program in Portland, for which he serves as director. He brings personal insight to the program as a testicular cancer survivor who received his diagnosis at 28 while he was a medical resident. “The major elements are everything from getting an accurate diagnosis (to) finding a care team who is expert in what are often rare cancers,” Hayes-Lattin says.

In addition to providing medical care and clinical trial opportunities, staff members are on hand to offer informa&shy;tion on financial, sexual and behavioral health, as well as rehabilitation and even a writing workshop. Patients are also informed about nonprofit organizations like the Samfund (thesamfund.org), which helps AYAs financially. Stupid Cancer (stupidcancer.org) is another organization that solely works to help AYAs.

By interacting with other AYAs, Hayes-Lattin says, patients will become aware of the issues for which they should be their own advocate. “What hit me was my own personal aspects of AYA cancer,” says Hayes-Lattin, who was married with a 2-year-old and another child on the way when he received his diagnosis, “things like health and life insurance, and the financial aspects of dealing with cancer as a young adult with a family.”

Since then, Hayes-Lattin has become active in state and national legislative issues, such as challenging insurance companies to pay for fertility preservation and the costs of clinical trials for AYAs. “On the national level, there was a successful effort that has to do with the financial toxicity for young adults, which is that having cancer had not previ&shy;ously been a reason that a person would be eligible for the deferment of interest accrual on student loans,” he says.

At present, Hayes-Litton continues to advocate for other specific changes in insurance and medical procedures that complicate the lives of all AYAs.

Although they no longer face the disease, adolescent and young adult survivors live with hardships.

Winter 2019 | Heal