ENDOMETRIAL CANCER SURVIVORS ARE at greater risk of developing cardiovascular diseases and may need increased monitoring for 10 years after diagnosis, according to the findings of a study published in the 

Journal of the National Cancer Institute.

Using the Utah Population Database, researchers identified 2,648 survivors who had received a diagnosis of endometrial cancer between 1997 and 2012. The results indicated that 25.7 percent of those patients were diagnosed with heart diseases five to 10 years after cancer diagnosis. Survivors of endometrial cancer were 47 percent more likely than women in the general population to be diagnosed with a disease of the heart between one to five years after cancer diagnosis and 33 percent more likely five to 10 years after the initial cancer diagnosis.

Researchers observed elevated risk during the one-to-five-year period for peripheral and vascular atherosclerosis, hypotension, phlebitis, thromboembolism, and other circulatory and lymphatic diseases. They found associations for hypotension, diseases of veins and lymphatics, and other diseases of veins and lymphatics. Survivors of endometrial cancer were at increased risk of phlebitis, thrombophlebitis and thromboembolism, lymphatic diseases, pulmonary heart disease, and atrial fibrillation during the earlier time period, with some elevated risk for cardiovascular diseases persisting at five to 10 years.

Compared with patients who had surgery, patients who also had radiation therapy or chemotherapy were at increased risk of heart and circulatory system disorders from one to five years after cancer diagnosis.

“Prior studies have reported similar proportions of endometrial cancer survivors who have hypertension diagnoses, but this study is the first to quantify risk for hypertension after cancer diagnosis among uterine cancer survivors compared (with) the general population,” noted the researchers.

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Cardiovascular Problems Appear in Endometrial Cancer Survivors Years After Treatment

CANCER SURVIVORS WHO RECEIVED neurotoxic chemotherapy were more likely to experience chemotherapy-induced neuropathy (CIN), as well as hearing loss and tinnitus (ringing in the ears), compared with those who did not, according to the findings of a study published in the 

Researchers asked 609 survivors to complete questionnaires evaluating hearing loss, tinnitus, stress symptoms and quality of life. The results showed that 68.6 percent had CIN and 31.4 percent did not. In survivors without CIN, 42.4 percent reported hearing loss and/or tinnitus compared with 48.1 percent who had CIN and reported some form of ototoxicity. 

Compared with the no-neurotoxicity group, survivors in the neurotoxicity group were older and less likely to be employed. They also had a higher comorbidity and symptom burden, higher levels of perceived stress and poorer quality of life. “Survivors need to be evaluated for these neurotoxicities and receive appropriate interventions,” the study authors wrote. They also recommended referrals to audiologists and physical therapists to help improve survivors’ hearing ability, functional status and quality of life.

Compared with the no-neurotoxicity group, survivors in the neurotoxicity group were older and less likely to be employed.

Hearing Loss, Tinnitus Common After Neurotoxic Chemotherapy, Study Finds

CANCER-RELATED FATIGUE IS often considered the most distressing side effect for patients and survivors of cancer and its treatment. It can plague a person from months to years.

Who is at risk? What are the signs? And, maybe most important, how can it be managed to improve a person’s quality of life?

In this issue’s cover story, a nearly 30-year survivor describes the 

 she felt while undergoing treatment for non-Hodgkin lymphoma. She shares how she had to learn to decipher what was “healthy people” fatigue versus what she was feeling.

Kathy LaTour, a two-time cancer survivor, speaks with experts who discuss the research behind cancer-related fatigue and offers practical solutions to help overcome this challenge experienced by so many.

 talks about her nine bouts with a rare cancer and how she never let it stop her from doing what she loved — snowboarding. After losing her leg from the disease and being told by her doctor that nothing more could be done, she defied the odds. Most recently, she took home two 2018 Paralympics gold medals.

“Good Morning America” and “20/20” news anchor Amy Robach sat down with 

l® and revealed who persuaded her, despite her hesitation, to get a mammogram in 2013 on live television in front of millions of people. It was just weeks after that Robach, then 40, learned she had breast cancer. She chose to have a double mastectomy — a radical move but one she discussed closely with her brother, who is an internist. That decision led to the discovery of another malignant tumor in her other breast. In the interview, Robach reflects on how the disease has changed her and the way she lives her life now.

In this issue, you’ll also learn about a program that puts cancer survivors in front of the 

to teach medical and nursing students. The global outreach began in 2007; today, nearly 900 volunteers have reached more than 50,000 students, making them aware of the early and often silent symptoms of ovarian cancer.

These pages also include stories about body image and web-based intervention, the importance of therapy pets and what people like you #CanDoWithCancer.

We hope that you find both practical information and everyday inspiration — and as always, thank you for reading.

From the Chairman

How to Overcome Cancer-Related Fatigue

TREATMENT-RELATED SIDE EFFECTS — even after many years &mdash; can be a concern for men who receieved platinum-based chemotherapy for testicular cancer.

 involved 1,214 survivors who were age 55 or younger at diagnosis and had been finished with first-line chemotherapy for at least a year. The participants completed a comprehensive questionnaire and underwent a physical examination, which revealed the most common negative health outcomes following treatment: obesity, sensory neuropathy, tinnitus (ringing in the ears) and hearing damage. About 5 percent of patients experienced no negative health effects.

The researchers also found that late effects can occur in clusters — for instance, hearing loss or damage and tinnitus; hypertension and diabetes; cardiovascular and related conditions; thyroid disease and erectile dysfunction; and depression or anxiety and diminished functional activity of the gonads.

“Since effective cisplatin-based chemotherapy was introduced in the 1970s, the overall age-adjusted five-year relative survival rate is 95 percent, and survivors remain at risk for decades for the late effects of cancer and its treatment,” the study authors wrote.

Testicular Cancer Survivors at Risk of Late Effects of Chemotherapy

.” I’ve used that phrase often. This article put many of my thoughts into words and words into paragraphs. After treatment, that is something I struggle with, still. “Changing the trajectory of my life” is a perfect description. The diagnosis turned my world upside down. The treatment wreaked havoc on my body and mind. Thank you. Reading this helps so much.

. In 1999, I emerged from the surgical suite at a community hospital screaming like an animal that was just caught in a steel trap. Said agony never improved. Areas of perpetual torment include my chest wall, breast, arm, shoulder, hand and ring finger.

After nearly two years of consults with neurologists and anesthesiologists, I was finally gifted with a name for my omnipresent torture. Dr. Michael Brennan’s diagnosis of post lymph node dissection pain was later confirmed at (Memorial) Sloan Kettering’s pain clinic … Through the years, I have found that a day of activity — whether it be moderate exercise, shopping or teaching my four-hours-aweek GED course &mdash; must be followed by a day of homebound relaxation.

My husband lost his cancer battle in 2015. Therefore, I am grateful that I still have fun days to treasure, a family and a job I love, memories of a great marriage and the opportunity to have traveled extensively.

. Address your comments to editor@curetoday.com. If you prefer that your comment not be published, please indicate.

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Comments from you, our readers, from the 2018 Summer issue of Heal.

Comments From Our Readers on Recent Heal Publications

AN ESTIMATED 40 PERCENT of people with cancer are of working age, and those who are employed usually need to stay that way during treatment.

Guy Reynolds knows he is a lucky man, not only because of his response to therapy, but also because he works for a company that provided flexibility while he was going through treatment after receiving a diagnosis of esophageal cancer in 2016. He was 59 years old.

The cancer had already metastasized to his liver, and his medical team was hesitant to give him a prognosis, he says. They told him if chemotherapy didn’t work in six months, he would be moved to a clinical trial for immunotherapy.

“You know, it’s the cutting edge that they’re working on,” Reynolds says. “The doctor said if that didn’t work, then I had six months.”

Now more than 22 months from diagnosis, Reynolds has finished nine months of traditional chemotherapy and three weeks of radiation. He remains on Xeloda (capecitabine), a type of chemotherapy, and Herceptin (trastuzumab), a drug used to treat breast cancer that is human epidermal growth factor receptor (HER) 2-positive. About 20 to 30 percent of esophageal cancers are HER2-positive, meaning they carry the oncogene that Herceptin affects.

“The major problem was the tumor in my liver,” says the married father of three. “It was the size of my fist.” Today his liver tumor is undetectable.

Reynolds says he weathered the chemotherapy well, taking time off from his job as a photo editor for The Dallas Morning News just on the days he had chemotherapy and the day after. Even a bout with an irregular heartbeat brought on by the chemotherapy didn’t keep him down.

Of course, that was before he began radiation.

“I was doing radiation at 9 a.m. and going to work at 9:45 a.m.,” Reynolds says. “By noon I was wiped out. So, I took some short-term medical leave for around 11 weeks.” He returned to work on a split shift that allows him to go home in the middle of the day for a few hours’ sleep.

“After the radiation, they told me that the fatigue would be worse for two to three months,” Reynolds says, “but it’s getting better. I even sat at work today and I thought, ‘You know what, I’m just going to stay here and work straight through.’ And then about an hour later I thought, ‘No, I’m going to go home and take my nap.’”

He was fortunate to find tremendous support at work, especially from his managing editor, who had lost a sister to cancer. Reynolds was even allowed to go for chemotherapy without using paid time off. “They just said ‘go,’ ” Reynolds recalls.

Patients and survivors must find their own ways to cope with fatigue. When employment is involved, creating a customized approach may involve help from family, friends, co-workers and the federal government by way of the Americans with Disabilities Act and the Rehabilitation Act, both of which ensure that people who have or have had cancer are protected against some types of job discrimination. The Family and Medical Leave Act allows 12 weeks of unpaid, job-protected leave for certain family and medical reasons. A study in The Oncologist reported that 75 percent of employed study participants changed their employment status because of fatigue, and 65 percent of patients indicated that their caregivers took at least one day off work in a typical month.

Each patient responds differently to treatment, depending on the drugs used, the length of treatment, whether they receive radiation and whether their place of employment offers insurance and/or is sympathetic. Some people plan their treatment for Fridays so they can rest over the weekend. Consider asking an employer to provide a parking space closer to the office, allow short breaks to rest or arrange for working from home.

Reynolds is approaching his two-year anniversary from the day of diagnosis. He has outlived the median survival and is hoping to be one of those who continues to beat the odds.

Feature

About 40 percent of people with cancer are of working age, and typically have a need to maintain their employment throughout their treatment.

Working Through Cancer-Related Fatigue

Wendy Harpham knows fatigue — life-changing, emotionally debilitating fatigue.

When the successful Dallas internist received a diagnosis of non-Hodgkin lymphoma in 1990, she wasn’t surprised by the fatigue that accompanied her treatments — but she expected it would eventually end.

What Harpham calls “life-altering” fatigue continued as she went in and out of treatment until 2007, when she went into remission. “Since I have been in the latest remarkable durable remission of 10-plus years, my fatigue has lessened but still impacts my daily life,” she says.

The married mother of three now accepts that her fatigue is not a recoverable side effect, and she has adapted her life — and her family’s lives &mdash; accordingly.

Fatigue ranks as perhaps the most prevalent of cancer complaints — studies over the past two decades have confirmed it as a significant problem during and for some years after treatment ends for 75 to 100 percent of survivors &mdash; yet its physiologic causes remain unknown.

Researchers now focus on confirming its prevalence and identifying ways to improve quality of life for those battling fatigue.

For example, researchers found that survivors over 65 — some of whom had been treated decades earlier &mdash; reported more fatigue after treadmill tests and walked slower than participants who had never had cancer. The findings, recently published in the journal Cancer, come from the Baltimore Longitudinal Study of Aging, a project that has enrolled thousands since 1958. Researchers have included measurements of endurance and fatigability since 2007.

Although cancer treatment aims at survival, the longterm effects of fatigue on health and quality of life must be examined more fully, says the study’s senior researcher, Jennifer A. Schrack, Ph.D., an assistant professor of epidemiology at Johns Hopkins School of Bloomberg Health in Baltimore.

That study is just the latest to confirm a problem in great need of solutions. Fatigue’s complexity has launched more investigation into what affects existing fatigue rather than what causes it in the first place, according to Debra Barton, Ph.D., RN, the Mary Lou Willard French Endowed Chair and a professor of oncology nursing at the University of Michigan School of Nursing in Ann Arbor. She has studied fatigue since the early ’90s, prompted by her years of experience as an oncology nurse, which included co-facilitating support groups.

“I think seeing how prevalent fatigue is, how long it can last and how much it can interfere with people’s daily lives — and the fact that no one knows how to prevent it or treat it very well &mdash; is what motivated me to look into it,” Barton says. “What I understand from the evidence is that there are many different reasons why people have long-term fatigue, most of which we still do not understand, despite all the years of research.”

Cancer-related fatigue (CRF) is the medical term used in the oncology community. It creates further questions regarding how it differs from normal fatigue, says Barton. “When I present to colleagues and talk about CRF,” she says, “they ask, ‘What exactly does it mean? Are we talking about treatment-related fatigue, or are we talking about fatigue from the cancer itself?’”

The answer that has emerged defines CRF as fatigue that is out of the ordinary, not the kind from jet lag or a poor night’s sleep or being up with a newborn and not relieved by sleep or rest. “It is (defined) by ruling out other issues,” Barton says, “but it seems to be an experience that many, many survivors talk about.”

Patients’ descriptions of CRF range from lacking the energy to stand up from a chair after watching television to never regaining former levels, even three years after treatment.

Harpham first noticed the extent of her fatigue during interferon therapy in 1992.

“I am someone who likes to go, go, go,” Harpham says. “For years my fatigue was one of the greatest challenges of survivorship.”

During her second recurrence, Harpham was forced to retire from clinical medicine. A number of issues drove her frustration, Harpham says, including having no objective measure to understand how she was coping with what she calls her “invisible wound” and not knowing what was real and what was her not trying hard enough. “I didn’t have the language for it. Everyone talks about being tired, but I had to distinguish the fatigue healthy people feel from the fatigue I was feeling and judge what I could or couldn’t do,” she says.

Cognitive problems exacerbated her fatigue. “I made mistakes (that) embarrassed me and threatened my sense of self, causing practical problems for me and others, such as when I would forget to do something I had promised to do,” Harpham says. “This increased my overall stress. The fact that I couldn’t trust myself to do simple things correctly, such as run errands or go to a meeting, made every day filled with fear of goofing up.”

When she began to explore her fatigue, Harpham considered two components: the practical medical issues and the emotional aspects. She worked with her physicians to minimize any treatable causes, such as having her thyroid checked annually because she had a history of thyroid disease and had received radiation to the neck in 1992.

She had periodic blood work to identify anemia or kidney and liver problems, she says, adding that she developed immunodeficiency that will continue for the rest of her life. Some lifestyle changes have also helped Harpham minimize fatigue. Large meals make her tired, so she eats small, healthy meals and snacks. She works out — but stops before the activity leads to fatigue.

At the beginning of her treatment, Harpham saw a sleep specialist to help identify factors that were keeping her from restful sleep, such as chronic leg pain, stress and sleep-disturbing medication. A new mattress eased her leg pain; practicing good sleep hygiene, such as avoiding stimulants close to bed and exercising, and meditating helped reduce stress; and, when necessary, she took prescribed sleep medication.

Harpham accepts that casual acquaintances and friends can’t comprehend her fatigue. It’s more important that close friends and family understand her condition, she says, so they can work together to develop a coping system. For example, she says, when she declines requests, those close to her understand, and she doesn’t feel bad about saying no.

When Harpham gave up her medical practice, she turned to writing for survivors and the medical community, addressing issues such as living with cancer and parenting after the disease. “Writing books and articles takes little physical energy and is one-way communication, so it doesn’t demand social skills or short-term memory the way a workplace with people interactions does,” she says. “My writing is still challenging and stimulating without overtaxing me.”

Many factors cause fatigue, including anemia, thyroid problems, stress, deconditioning, dehydration, sleep disturbances, diet, depression, metabolic abnormalities and cardiac function, according to Barton. They can overlap, as Harpham experienced, with some factors being physical and others psychological. But because patients self-report — often without using a particular language, as Harpham described &mdash; it is difficult to determine the underlying causes.

Until more is known about the physiologic causes of fatigue, Barton says, each person must learn to adapt using trial and error. Research suggests that those with fatigue should strive to identify their energy peaks and plan activities accordingly as best they can.

Significant evidence links physical activity with reduced fatigue — and yoga may be even more effective than traditional exercise. Researchers from the University of Rochester Medical Center in New York found that cancer survivors who practiced yoga as part of their exercise program felt less fatigued. Specifically, they slept less but experienced less fatigue and cut down on daytime napping. The ultimate result of the study was a 37 percent reduction in what the researchers termed “daytime dysfunction.”

Another study, Yoga for Cancer Survivors, looked at the impact of a four-week yoga class for women over 60 who had CRF. The results revealed that the participants experienced significantly less cancer-related, physical and mental fatigue.

Pharmacologic solutions to fatigue include several drugs that have shown efficacy, but none has been singled out as a one-size-fits-all solution. Barton has been studying the use of American ginseng, a natural energy booster in traditional Chinese medicine. “Fatigue has been linked to an increase in the immune system’s inflammatory cytokines and to poorly regulated levels of the stress hormone cortisol,” she says. “Ginseng’s active ingredients, called ginsenosides, have been shown in animal studies to reduce cytokines related to inflammation and to help regulate cortisol levels.”

One challenge, she says, is that the ginseng must be pure, ground American ginseng root, not the off-the-shelf kind consumers generally purchase, Barton says. Common ginseng, she says, is sometimes processed using ethanol, which can produce estrogen-like properties that may be harmful to patients with breast cancer. Barton used ginseng from Wisconsin after working with the Ginseng Board of Wisconsin to guarantee purity.

The results of a Mayo Clinic Cancer Center-led study showed taking 2,000 milligrams of ginseng, in capsule form, daily for eight weeks led to a significant improvement in general exhaustion. “After eight weeks, we saw a 20-point improvement in fatigue in patients with cancer measured on a 100-point, standardized fatigue scale,” Barton says. She plans to examine the herb’s effects on specific biomarkers for fatigue, hoping to find a way to help the body through treatment and prevent long-term fatigue.

“I think what we strive for in terms of care these days is shared decision making, shared care and good communication between providers and patients,” she says. “There is no blood test we can do and then say, ‘Oh, you have cancer-related fatigue, and here is what you do.’ That does not exist.” What people need to do for their own fatigue is very individualized, she says.

Today, Harpham says, she accepts her limits but still hopes for improvement. “I avoid the things that make it worse, such as overdoing, and I never take chances when the consequences matter, like driving when I am too tired or making important decisions.”

She is more forgiving of herself, too. “I still don’t like it, but I pay as little attention to it as possible,” she says. “I rarely talk about it, because focusing on it is a downer. I focus on all I can do and all the blessings in my life.”

Cancer survivors may appear to have returned to normal, but fatigue can continue to affect quality of life for years.

Summer 2018 | Heal