ASHLEY THOMPSON, with her son MADDOX. - PHOTO COURTESY OF ASHLEY THOMPSON

With all of the challenges that come with a cancer diagnosis, moving forward after treatment should not involve financial insecurity, yet for many survivors it does. They may face loss of savings from out-of-pocket expenses, disability, and even lack a sense of self if they identify with work they loved but can no longer accomplish.

Even those who successfully navigate these challenges may still face the possibility of becoming uninsured or underinsured if they choose to change careers or companies.

The result is that, despite legal safeguards now in place such as the Family Medical Leave Act (FMLA), Americans with Disabilities Act (ADA), Health Insurance Portability and Accountability Act (HIPPA), and the Patient Protection and Affordable Care Act (ACA), loopholes remain, and survivors may find their employment diminished or their prospects for advancement bleak.

Indeed, many survivors remain in jobs with health insurance in situations where exiting the labor force, reducing hours, or changing employers would otherwise be the more attractive alternative. “The right choice around work and each decision a survivor makes is totally unique,” says Rebecca Nellis, Chief Mission Officer of Cancer and Careers, a nonprofit founded by the Cosmetic Executive Women (CEW) foundation in 2001.

The association saw a need in the cancer survivor community to empower and educate people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events, Nellis says. Cancer and Careers is one of a number of organizations that provide free counseling and legal advice on all aspects of employment for cancer survivors.

Nellis says the most immediate question survivors should answer is whether they will “disclose” their diagnosis at work. It may be that they want to let only human resources know in order to access the benefits available through their company and the law. For those who feel their advancement options would be in jeopardy should their superior find out, not disclosing may be a choice the survivor makes.

The second largest issue Nellis cites is side effects and the reality that these may not end when treatment is over. These after effects may also have an impact on the employee’s decision to disclose in order to access reasonable accommodations required by the ADA.

For example, Nellis says: “Someone on the finance team who prints a lot and the printer is on another floor or across the room. If that person is experiencing fatigue as a side effect, a reasonable mitigation at work would be to put a printer nearby.”

In 2011 Ashley Thompson had secured her place on the fast track at the education research company where she worked in San Antonio, Texas. Lauded for her creativity, she was given more responsibility on projects led by executives she respected. The 31-year-old single mother of a six-year-old son was also finding her voice after leaving an abusive relationship.

Then she began to feel “not right,” she recalls, with times of confusion and even physical challenges that left her balance in question.

“The doctor said, ‘You are 31 and a single mom with a lot of responsibility and stress, so here is some Xanax,’” Thompson says. A second visit to another doctor who told her the same thing had her questioning her sanity, and there were still days when she felt like she needed a walker to get from room to room because of coordination issues.

“I finally found this great physician assistant, and when she walked into the exam room, I just started crying. I told her I know something is wrong — I know it &mdash; but everyone is telling me it’s nothing.”

The PA said she would order an MRI to be sure and would phone Thompson with the results.

The phone rang at 7 p.m. that night. Not only did the MRI show a tumor on her kidney, but white spots on the brain that were the body’s immune response to having cancer called paraneoplastic limbic encephalitis (PLE) that were causing the neurological problems she was experiencing. Thompson says it was the body’s way of telling her something was wrong.

Thompson had her kidney removed with no further treatment and began therapy for the PLE, working from home except for trips to the Mayo Clinic to see an autoimmune specialist. “I was out of work two months, and I wanted to go in because work was my place to feel normal and I didn’t have to think about it,” she says, but the reality soon became very different.

“I felt like cancer girl,” she says. “They were very supportive and everyone would come up to talk to me, and even those who didn’t talk about the cancer, knew about it.”

She believed her work assignments had been made easier and that they were all taking care of her.

“It seemed like I wasn’t given the same opportunities because they felt sorry for me. I don’t know what they were thinking,” she says,” but in my heart I think it was that I was this poor single mom so they wanted to surround me with love and protect me.”

After two years of trying to regain her footing, Thompson decided it was time to make a clean start and to find somewhere she would feel more fulfilled.

Unfortunately, some side effects of the PLE were still apparent, meaning there were days she could not go in to work.

As she searched for options to help her frame her survivor issues to a new employer, she found Cancer and Careers.

“I knew it was what I needed. They offer the resources to stay organized.” She gathered all their materials into her “cancer binder,” and began to reframe how to describe her illness.

“I didn’t say I worked from home as an accommodation; I went in with a plan and answers for why without saying why.” Thompson described her routine as an “independent worker.” But the major difference, she says, was being able to control the information that was known by her colleagues. Eventually, she did let her new company know her past, actually speaking on the topic for colleagues and creating a number of cancer education pieces to use with the company’s 60,000 employees.

Nellis says the role of Cancer and Careers is to help survivors think about the questions they need to ask. “At diagnosis you feel out of control,” Nellis says. “We help people discover where they do have control and how they want to share their diagnosis. You have to weigh things.”

For example, she says that in considering priorities if a survivor wants all the legal protection offered by the law, they want a larger company, but if flexibility is the priority, it might be a different kind of company. If you find your goal is to contribute to a mission-driven organization, it means doing your homework on the values of the company you are considering. Or, she says, identify what makes you feel purposeful and begin with small shifts in that direction.

GINNY MASON - PHOTO COURTESY OF GINNY MASON

Ginny Mason was working in an outpatient mental health clinic when she was diagnosed with inflammatory breast cancer in 1994.

“The breast was enlarged and itched,” she says. “I also had what I can only describe as electric shocks in the breast. There was no red, but I did have the orange peel skin.”

Mason assumed it was hormones and her mammogram seemed to confirm it. “The radiologist called me a ‘hypochondriac nurse’. Even my internist said it didn’t look like cancer and we should watch it.”

So Mason went home and watched it grow until the pain was so severe she was referred to a surgeon. At the time, she was also waiting to have gall bladder surgery and when the surgeon came into the exam room after a gallbladder ultrasound, she expected they would talk about scheduling it.

Instead he sat down next to her and said that on a scale of 1 to 10 she had the worst breast cancer she could have. He took her by the hand to walk to the oncology group, who he had already called. They wanted to start chemotherapy immediately.

“I couldn’t call my husband and tell him I just had chemotherapy and come get me, so I told them that I would be back [for treatment] on Monday after I did a few things at work and could tell my family.” When Mason arrived back at the clinic, she began seeing patients and by the end of the day went in to tell the psychiatrist, her supervisor.

“I just told him I had to take Monday afternoon off for a medical appointment, and he said fine. Then when I was leaving he said, ‘I hope it’s nothing serious.’ I said yes, it was, that I had a serious kind of breast cancer and 12 to 18 months to live. He started to cry.”

Mason had six rounds of chemotherapy before her surgery, working the entire time. The way she told friends and family was to cut her waist length hair to a short bob the day before chemo began, knowing it would open the door to talk about it. Her work situation could not have been better, she recalls, but in the back of her mind, she had known for a while that she wanted to do something different. She had once hoped to become a nurse midwife but lasting effects from cancer treatment ended those plans.

Her husband, a minister, was planning for a move from Virginia to northern Indiana for a new church. Before the move, she began to volunteer in the cancer community, knowing her survival was a miracle with a diagnosis the doctor said at the time had only a three percent survival rate at five years.

Shortly before Mason and her husband moved to Indiana they met Owen Johnson, founder of the newly formed Inflammatory Breast Cancer Research Foundation who had lost his wife to the disease. Mason began as a volunteer, answering calls on the helpline but soon became the executive director — a full time job.

Mason says that being an advocate has essentially taken over her life, but in a good way: “My husband and I joke that he has his congregation and I have mine.”

The diagnosis has changed her from a quiet, reserved minister’s wife to an outspoken advocate.

“Employment is a common topic topic among patients, and when I say I worked through treatment, I know many women can’t do that, but for me it was better than sitting home feeling terrible.”

One employment issue that comes up she says is survivors being passed over for promotion because the boss doesn’t think they will live. “We also have issues such as lymphedema, which is hard to hide and speaks to why women want to appear physically as normal as possible,” she says. In addition, the cognitive issues can make it very hard to continue a job that requires critical thinking, mentally organizing or writing.

“They can’t fire you, but if they are bent on not keeping you around, they can get around it,” Mason says.

Mason refers women with such issues to the Cancer Legal Resource Center and the Patient Advocate Foundation in hopes that if something like this does happen, there is legal recourse. “It’s not the career I had planned before cancer, but it’s good to use my nursing and patient experience to help others.”

Articles

Feature

Even with protective laws, survivors of cancer face obstacles in employment.

The Key to Job Lock: Facing Employment Obstacles in Cancer Survivorship

IT CAN BE HARD SOMETIMES to fathom that individuals forced to confront the many stresses that accompany a cancer diagnosis also have to worry about their finances and keeping their jobs. Yet, as those still in treatment and survivors know all too well, overcoming barriers related to work can be an ongoing struggle.

Fortunately, laws are in place to protect patients and survivors from employment discrimination, and an array of advocacy groups have formed to help you and your loved ones navigate the world of work after cancer.

In this issue’s cover story, Kathy LaTour describes the struggles, but also the victories, of survivors who decided to take their careers in a new, more meaningful direction — providing inspiration for others like them eager to regain their professional footing after cancer.

Aspiring oncology nurse Taylor Hendrix is just such an exemplar. Having survived multiple bouts of cancer beginning at the age of 11, she is now pursuing a career in nursing, drawn to the profession by the skill and compassion she witnessed in her own care team.

Also in this issue of Heal®, we profile other survivors forever changed by having cancer themselves or from caregiving for a loved one. Our celebrity profile features Tony and Grammy award—winning Christian Hoff, of Broadway musical Jersey Boys’ fame whose youngest daughter has acute lymphoblastic leukemia and whose wife is a breast cancer survivor. Hoff performs and is a tireless advocate in behalf of cancer research funding, in part, he says, to “give hope and encouragement to others.”

If you’re like me, you’re confused by the barrage of news about marijuana which is in the headlines once again, as several states debate whether to make it legal for recreational use. Cannabis is currently approved for medical purposes in more than half of the states, but how easy — or difficult &mdash; is it to actually obtain the drug, what does it cost and does it actually help to ease symptoms during and after cancer treatment? You can find some answers to these questions from Judith Paice, a highly regarded expert on cancer-related pain, in this issue’s “Your Nurse on Call.” Survivors can also learn more in Heal® about where to locate resources to cook simple, but nutritious meals, cope with the knowledge of a genetic risk for cancer, discreetly access information to deal with sexual side effects and much, much more.

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

From the Chairman

IT CAN BE HARD SOMETIMES to fathom that individuals forced to confront the many stresses that accompany a cancer diagnosis also have to worry about their finances and keeping their jobs.

Stronger Than Before: Survivors Find New Meaning in Their Work Lives After Cancer

Sexual health can be an uncomfortable or embarrassing topic to discuss for many people, and for patients with cancer, survivors and their partners, it can feel even more awkward. In fact, sex ranks among the top five unmet needs of survivors, and a new digital health startup, Will2Love, has been launched to help fill this void.

Sixty percent of cancer survivors — 9.3 million individuals in the United States alone &mdash; end up with long-term sexual problems, but fewer than 20 percent get professional help, according to Leslie R. Schover, PhD, Will2Love’s founder. Among the barriers she cites are overburdened oncology clinics, poor insurance coverage for services related to sexual health and an overall lack of expertise on the part of providers, many of whom don’t know how to talk to patients and survivors about these issues.

Sexual issues can affect every stage of the cancer journey. Schover, who hosted a recent webinar for health care practitioners on the topic, has been a pioneer in developing treatment for cancer-related problems with sexuality or fertility. After decades of research and clinical practice, she has witnessed firsthand how little training is available in the area of sexual health.

“Sex remains a low priority, with very little time devoted to managing sexual problems even in specialty residencies,” she adds.

The problem is twofold: how to encourage oncology teams to do a better job of assessing and managing sexual problems and how to help those impacted by cancer to discuss their sexual concerns.

Schover says that simple, open-ended questions such as: “This treatment will affect your sex life. Tell me a little about your sex life now,” can help to get the conversation started.

Sexual side effects after cancer treatment vary from person to person, and also from treatment to treatment. Common side effects for men and women include difficulty reaching climax, pain during sexual intercourse, lower sexual desire and feelings of being less attractive. Men specifically can experience erectile dysfunction and dry orgasm, while women may have vaginal dryness and/or tightness, as well as loss of erotic sensation such as on their breasts following breast cancer treatment.

Sexual dysfunction after cancer can often lead to depression and poor quality of life for survivors and their partners.

Cancer treatment can impact hormonal cycles, nerves directing blood flow to the genitals, and the pelvic circulatory system itself, explains Schover. In addition, side effects like prolonged nausea, fatigue, and chronic pain also can disrupt a patient’s sex life.

“Simply to give medical solutions rarely resolves the problems because a person or couple needs to make changes in the sexual relationship to accommodate changes in physical function,” Schover stresses. “That kind of treatment is usually best coming from a trained mental health professional, especially if the couple has issues with communication or conflict.”

Schover hopes that Will2Love will bring much-needed attention to the topic by providing easily accessible resources for patients, survivors, their partners and health care providers. (Box)

Currently visitors to the website can subscribe to its e-newsletter and receive a free introductory five-part email course covering topics related to what your doctor may not be telling you about sex, fertility and cancer. After the fifth lesson, users will receive a link to the Will2Love “Sex and the Survivor” video series. “Sexual health is a right,” Schover stresses, and oncology professionals, patients and survivors need to be assertive to get the conversation started.

A digital startup is helping cancer survivors lead a healthier sex life. 


Sexual Healing for Cancer Survivors

WITH 120 ALL-NEW RECIPES including Mini Twice-Baked Potatoes, Chicken Paillard with Arugula and Fennel, and Corn, Avocado, and Tomato Salad

, The New Healthy Eating Cookbook, Fourth Edition

, can help home cooks and their families eat better without sacrificing flavor or taste.

The recipes were reviewed by the American Cancer Society’s medical and nutrition experts and emphasize fresh fruits and vegetables, whole grains, and lean protein. The New Healthy Eating Cookbook also includes tips on portion control, meal planning, healthy snacking and reading nutrition labels.

“Good health starts with good nutrition, and this cookbook is a perfect resource,” said Colleen Doyle, managing director of nutrition and physical activity. “It’s filled with recipes to please any palate and will remind readers that food can be healthy and also taste great and look beautiful.”

Author Jeanne Besser says the cookbook is appropriate for cooks of all levels of expertise who want to try new recipes and make healthy choices about the food they eat and serve. “Healthy eating doesn’t mean sacrificing flavor,” says Besser. “Anyone can use this book to create delicious meals that also happen to be good for you.”

1 jalapeño pepper, seeded and finely chopped

Calories............................................ 180

Calories from fat.............................. 90

Fat.................................................... 10 g

Saturated fat................................... 1.5 g

Trans fatty acids, total..................... 0 g

Polyunsaturated fat......................... 1.5 g

Monounsaturated fat...................... 7 g

Cholesterol....................................... 0 mg

Sodium............................................. 10 mg

Carbohydrate................................... 23 g

Dietary fiber..................................... 5 g

Sugars.............................................. 6 g

Protein.............................................. 4 g

The American Cancer Society New Healthy Eating Cookbook, Fourth Edition, is available in both print and 

 from the American Cancer Society bookstore. 

Reprinted with permission from the American Cancer Society (www.cancer.org).

The American Cancer Society published a cookbook of delicious and healthy recipes for patients and survivors. 

Fall 2016

The Key to Job Lock: Facing Employment Obstacles in Cancer Survivorship

Stronger Than Before: Survivors Find New Meaning in Their Work Lives After Cancer

Sexual Healing for Cancer Survivors

New American Cancer Society Cookbook Offers Delicious and Healthy Recipes