Network - Fall 2010

Fall

’10

network

The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center

Understanding your rights: Legal and insurance aspects of working through cancer

by Lana Maciel

People profiles: Kendall Kayworth

p. 3 Doctor, Doctor Focus on lymphoma

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Intriguing links: diabetes and cancer

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Psychological and social distress of breast cancer patients

Job security. That’s what often springs to mind for recently diagnosed cancer patients when they consider how their disease might impact their employment status.

They worry, “How will this affect my job?

Will I be able to keep it?”

The answer, in most cases, is that you cannot lose your job just because you have cancer.

Under the Americans With Disabilities Act (ADA), you can’t be fired or discriminated against because of a disability. Cancer may be considered as such, on a case-by-case basis. It depends on how your condition or treatment affects you and your ability to work.

The decision to tell an employer you have cancer may be difficult, but if the disease and treatment are severe enough to affect your ability to do the job, such disclosure is necessary to gain the legal protections of the ADA. Whether the disability is obvious or not, the main ADA protections don’t take effect until the employer is informed of the disability and the fact that a reasonable accommodation is required.

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Sharing hope, support and understanding with anyone diagnosed with cancer, regardless of where treatment is or was received.

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Reasonable accommodations help patients return to ‘new normal’ Under the ADA, patients who return to work have a right to ask for reasonable accommodations from their employers. These may include a change in the physical work environment, having a more flexible work schedule, telecommuting or taking extended leave.

If the employee asks for reasonable accommodations and can still perform the essential job functions, that person is protected. However, the employer will decide which accommodations are most reasonable and how they will be met. For example, if an employee requests something and the employer can find a simpler or less expensive way to make the accommodation, that’s acceptable.

Staying protected through medical leave Once you’ve returned to work after a cancer diagnosis, you may still need time for treatment or therapy. This may conflict with work schedules, or you may feel too fatigued to work at all.

Fortunately, taking time off for most cancer treatments, regular doctor’s appointments or recovery from illness is unlikely to cost you your job.

The Family and Medical Leave Act (FMLA) protects you.

Under this law, employees and caregivers receive up to 12 weeks of unpaid medical leave each year, with an option to substitute accrued vacation, sick leave or other paid time off.

You may use the time to deal with your own serious medical condition or to care for a seriously ill spouse, parent or child.

But the FMLA has eligibility requirements. You must have worked at least one year and a minimum of 1,250 hours, and your employer must have 50 or more employees within 75 miles of your work site.

Exploring federal laws and protections Because patients need health care coverage during treatment, unemployment is simply not an option for many.

Fortunately, there are disability insurance policies that can help cover the costs of doctors’ visits and provide short- and long-term benefits.

If you lose health insurance, there are several options, including the continuation coverage provided by the Consolidated Omnibus Budget Reconciliation Act (COBRA), Health Insurance Premium Payment (HIPP) programs and the Health Insurance Portability and Accountability Act (HIPAA).

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Which is right for you?

If you lose group coverage because you lose your job, reduce your hours or enroll in Medicare, COBRA plans allow you to maintain that policy with the same providers and prescription drug coverage. But COBRA is expensive — up to 102 percent of the individual employee rate.

Though not available in all states, HIPP plans help you continue private health coverage while the state pays insurance premiums if you can’t afford them.

And with HIPAA, which guarantees access to health insurance and the ability to carry it over to another job, you’re protected as long as you apply within 63 days of a break in health insurance coverage.

Looking for additional help and resources? The website of the nonprofit Cancer and Careers organization, at www. cancerandcareers.org, is full of practical information for patients, caregivers, employers and health care professionals about career considerations after a cancer diagnosis.

Another resource, from the Texas Young Lawyers Association, may be found at www.tyla.org/projects/legal-guide-forcancer-patients. You can download a copy of the guide in English or Spanish, or request that one be mailed to you.

In the Winter 2011 issue of Network, we’ll wrap up our series on working through cancer with reader response to the stories. E-mail mbrolley@mdanderson.org to share yours.

People profiles Attuned to survivors Burkitt’s lymphoma survivor uses experience to help others

by Mary Brolley

Kendall Kayworth always knew she wanted to become a nurse — in fact, an oncology nurse. Her only concern was that she wouldn’t be able to relate to cancer patients.

She needn’t have worried.

In 2008, Kayworth was studying abroad in Argentina when she noticed that a lymph node in her neck had become enlarged.

When it didn’t shrink, the 20-year-old’s parents in Dallas became concerned enough to fly her home for medical attention.

Soon she was diagnosed with Burkitt’s lymphoma, an aggressive type of B-cell non-Hodgkin’s lymphoma that occurs most often in children and young adults.

She received treatment at MD Anderson with hyper-CVAD and rituximab — a potent chemotherapy regimen given in the hospital about every three weeks. It combines the rituximab with cyclophosphamide, vincristine, Adriamycin® and dexamethasone for odd cycles and with high-dose methotrexate and cytarabine for even ones.

Despite the cancer’s aggressive nature, Kayworth says her physician, Deborah Thomas, M.D., associate professor in the Department of Leukemia, quickly reassured her.

“She said I had a good prognosis — that this was just a bump in the road,” Kayworth recalls.

A second-year student at Baylor University’s Louise Herrington School of Nursing, she completed a nursing externship this summer at Memorial Sloan-Kettering Cancer Center in New York. She worked on a leukemia/lymphoma floor.

“I’ve seen patients when they’re newly diagnosed. They’re in shock. It’s still so new,” she says.

A couple of times she told them that she, too, is a cancer survivor.

“I understand if they’re having trouble sleeping, or with side effects. I let them vent if they need to.”

Her experience — of having her life “derailed” for a year to undergo cancer treatment — makes her more aware of young cancer patients.

She recalls when one of her physicians talked to her about the chance that the cancer and its treatment might affect her fertility.

“That was the first time I cried,” she says.

Grateful for recovery and health Now healthy and happy, Kayworth credits her medical team, her friends and her loving family for her recovery.

She’s especially grateful to her mom, Deana, who stayed with her in Houston during the long months of treatment.

“I couldn’t have done it without her. That goes for my entire family, but she really took care of me. She was with me 24/7.”

To share her experience with other young patients, Kayworth joined the Anderson Network Telephone Support Line.

“I like talking to people in their 20s and 30s,” she says. “It’s an age group that hasn’t been reached.”

Set to graduate from Baylor’s nursing program in two years, she hopes to become a nurse practitioner or a clinical nurse specialist.

She already knows she’ll have an instant connection with her patients.

“Ninety-eight percent of the medical staff have sympathy for the patients — but I have empathy,” she says.

To become a telephone support volunteer or to be connected with another caregiver or survivor, call 800-345-6324 or 713-792-2553, or use the online contact form at www.mdanderson.org/ andersonnetwork.

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Doctor, Doctor Focus on lymphoma We asked Fredrick Hagemeister, M.D., professor in the Department of Lymphoma and Myeloma, about lymphomas, promising new treatments for this group of cancers and how MD Anderson’s Lymphoma Tissue Bank is making a difference in research.

What are lymphomas?

Lymphomas are cancers of the body’s lymphocytes, a type of white blood cell of which there are both B cells and T cells.

After these cells become malignant (cancerous), they can invade other organs.

B-cell lymphomas are relatively common in the United States and Europe, but have many different ways of appearing in patients, and are classified by their appearance under the microscope. They may occur in the young and the old, and depending on their genetic makeup, can be fast- or slowgrowing. Many can be cured with chemotherapy, with or without radiation therapy.

T-cell lymphomas are relatively uncommon in the United States, and are more difficult to control than are B-cell lymphomas, making the distinction between these two large categories important for decisions regarding therapy.

What’s the difference between Hodgkin’s and non-Hodgkin’s lymphoma?

All subtypes of classical Hodgkin’s lymphoma exhibit a specific type of abnormal cell called a Reed-Sternberg cell that should be present in correct combinations with other non-cancer cells in order for a pathologist to call the disease Hodgkin’s lymphoma. On the other hand, non-Hodgkin’s lymphomas have a wide variety of different cells present, and usually most of the cells in a patient’s tissue biopsy consist of these malignant cells, which have specific proteins on their surfaces that help in naming them. There are over 30 types of

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non-Hodgkin’s lymphomas, and some grow slowly, whereas others grow rapidly.

What types of targeted therapies are being used to treat Hodgkin’s and nonHodgkin’s lymphomas?

One promising area is the development of targeted therapies like proteasome inhibitors, which work without damaging a person’s DNA. Instead, they block the proteins that DNA produces. Proteasome inhibitors affect malignant cells, so they die, but healthy cells are not as significantly affected.

Other new drugs, including monoclonal antibodies and immunomodulatory agents, also have great potential to improve the lives of lymphoma patients. Monoclonal antibodies attach primarily to proteins on the surface of cancer cells and cause an immune response against these cells. Immunomodulatory agents tend to affect many of the normal cells surrounding the cancer cells, such as tumor blood vessels, to block their growth.

Why is MD Anderson’s Lymphoma Tissue Bank so important?

At MD Anderson, lymphoma patients may donate part of their biopsies to our Lymphoma Tissue Bank. It’s been in operation about 2 ½ years, and our research is really expanding.

My colleague Sattva Neelapu, M.D., has recently identified an important protein that causes immune suppression by preventing antitumor cells from killing cancer cells in lymphoma tissues. So we began a trial with the support of the National Cancer Institute to test an antibody designed to stop the immune suppression and allow the antitumor cells to kill the tumor cells in patients with these diseases. In another study, we’ve tested a new drug on tissues stored in the tumor bank and have found it to be highly effective in certain kinds of lymphomas, but not in others.

Fredrick Hagemeister, M.D., answers more questions about lymphomas in Network’s online version. Check it out at www.mdanderson.org/publications/network.

Intriguing links between diabetes and cancer

by Mary Brolley

Cancer and diabetes have a complicated relationship.

And with an estimated one in five cancer patients also facing diabetes, it’s important to try to sort this out.

Diabetes is suspected of increasing the risk of certain types of cancer.

On the other hand, certain types of cancer and cancer treatments may cause or worsen diabetes.

And metformin, a common treatment for type 2 diabetes, has been associated with a lower risk of cancer in some studies.

So it’s not surprising that researchers in endocrinology and oncology are increasingly focused on the similarities between the two conditions and what can be learned by combining their efforts.

Earlier this year, the American Diabetes Association and the American Cancer Society issued a joint paper on the two diseases, agreeing that accumulating evidence indicates that people with diabetes are more prone to certain cancers.

Diabetes seems to be present before the advent of colorectal and prostate cancer, and people with the disease are more likely to get pancreatic cancer.

Diabetes is also linked to increased risk for breast and endometrial cancers.

There is a certain inevitability about the linking of the two diseases, says Veronica Brady, advanced practice nurse in the Diabetes Program in the Department of Endocrine Neoplasia and Hormonal Disorders at MD Anderson.

“Both diseases occur more often in older, physically inactive, overweight or obese people,” she says. “We must address it, because eventually the populations are going to cross.”

Acknowledging the connection MD Anderson’s Diabetes Program was created to address the fact that the diseases coexist. Preliminary research at the institution showed that, among patients with diabetes and pancreatic cancer, those with higher blood sugar had worse outcomes.

Patients referred to the program receive education about diabetes and glucose monitoring, counseling on diet and exercise, and a dose of reassurance that diabetes can be managed.

“I tell them, ‘We’ll help you control your diabetes during treatment and beyond,’ ” Brady says.

Newly diagnosed cancer patients with hyperglycemia or diabetes get a lot of attention from the staff. “We know they have increased mortality just because they have a comorbidity,” she says.

“Patients can also experience steroid-induced hyperglycemia, so we need to monitor for this in patients receiving steroids,” she says.

Meanwhile, recent studies indicate that the commonly prescribed diabetes drug metformin is associated with a lower risk of certain cancers.

Could the relationship be as simple as overlapping populations? Risk factors for both diseases include advancing age, being overweight or obese, physical inactivity and smoking.

Even if this is the case, diabetes and obesity are increasing rapidly in the United States, so addressing how diabetes may be prevented or managed is a crucial topic.

Most important, Brady says, is an emphasis on the maintenance of good general health so the patient can undergo the rigors of treatment for cancer.

‘A measure of control’ As consensus mounts that the two conditions are linked, the best advice for people with diabetes facing cancer is to watch blood sugar, stay as active as possible, eat a healthful diet, take medications as prescribed and reduce stress.

And, whether they have cancer or not, all people with diabetes might be wise to discuss their risk of cancer with their physician.

Brady says that, despite undergoing rigorous cancer treatment, many of her patients are eager to become vigilant about their blood sugar.

“Some patients will really focus on this,” she says. “They exercise, watch what they eat, take their meds. It gives them a measure of control.”

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Psychological and social distress among breast cancer patients and survivors

by Mary Brolley

After the shock and fear of a breast cancer diagnosis, and once the often-difficult treatment is complete, patients expect to resume their lives and routines with a clear sense of gratitude and relief.

Wait — not so fast.

While certain side effects of breast cancer treatments — for example, lymphedema and the loss of mobility that may be experienced by those who’ve lost axillary lymph nodes — are well documented, there are other reactions that are less expected.

Psychological and social distress is a response that Jennifer Litton, M.D., assistant professor in the Department of Breast Medical Oncology at MD Anderson, sees often. There are two distinct sets of emotional reactions: one just after diagnosis, one after treatment ends, she says.

“At first, some women are angry or in denial. They ask, ‘How can I have breast cancer? I have no family history of it,’ ” she says. “I tell them it’s OK — even appropriate — to feel that way.”

For a number of women, new worries may appear about six months after treatment ends. After months of focus on getting through no matter what, feelings of anxiety and depression may surface.

Women diagnosed in their 30s and 40s may be most likely to suffer psychological and social distress. They may worry about caring for young children or that they’ll become infertile as a result of chemotherapy or radiation.

One issue is front and center “Fear of recurrence,” says P.K. Morrow, M.D., assistant professor in the Department of Breast Medical Oncology and director of the Breast Cancer Survivorship Clinic. Like Litton, Morrow works with many younger breast cancer patients.

“They may also have financial worries, suffer from fatigue or be concerned about infertility. But fear of recurrence is the main thing,” she says.

Add to that the fact that women are increasingly involved in choices about their treatment, and it’s understandable that

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they might become anxious about making the right choices and juggling responsibilities over a long period of time.

At MD Anderson, physicians and health care teams do their best to make sure psychological and social issues are addressed as thoroughly as medical issues. The survivorship clinics take this into account, too.

Litton has learned to ask questions about psychological and social issues even if women don’t bring them up. “I might say, ‘Many women are depressed. Is that something you’re dealing with?’ ” If they are depressed or anxious, she recommends that they arrange an appointment with social workers in the Department of Social Work or advanced practice nurses in the Department of Psychiatry.

Managing anxiety in the information age Breast cancer treatments have changed a great deal in the last 50 years, when radical mastectomies were routine and caused a lifetime of physical problems, such as loss of mobility, pain and lymphedema.

Today’s surgeries are less disfiguring, but the combination of different treatment modalities may cause new side effects.

Survivors often face issues like threats to bone health, hot flashes, early menopause, chronic fatigue and decreased libido.

So much more is now known about a person’s individual tumor, and this adds another layer of concern for patients.

Anxiety and worry may be especially acute for women who’ve gone in and out of treatment because of recurrences.

Cheryl Jolly of Sugar Land, Texas, was diagnosed with a stage IIb ductal carcinoma in late 2006. She remembers learning that her tumor was of the “triple-negative” subtype, meaning that it was clinically negative for the hormones progesterone and estrogen and for HER2. She quickly discovered that this made several promising therapies ineffective.

“They tell you not to Google, but I don’t care who you are, you’re going to do it,” says Jolly, the mother of two young sons.

“And it’s terrible, looking through all that stuff.”

Now in a clinical trial under the leadership of Litton for patients with triple-negative disease, Jolly is close to her medical team and feels free to be open with them about her feelings of stress, anxiety or depression.

Both Litton and Morrow try to reassure patients and survivors of any age that their feelings are understandable and that the health care team is ready to help.

“I advise them to reach out to others,” Litton says. “That might mean talking to a Pink Ribbon volunteer, joining another support group or volunteering themselves.”

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The University of Texas MD Anderson Cancer Center Division of Public Affairs 156300/18050661 – Unit 700 P.O. Box 301439 Houston, TX 77030-1439

network The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center.

Address changes should be sent to: Mary Brolley The University of Texas MD Anderson Cancer Center Communications Office – Unit 700 6900 Fannin St. Houston, TX 77030-3800 Phone: 713-792-0658 Fax: 713-563-9735 E-mail: mbrolley@mdanderson.org Articles and photos may be reprinted with permission.

Susan French, Executive Director, Volunteer Services Debbie Schultz, Assistant Director, Volunteer Services/ Anderson Network Mary Brolley, Writer/Editor, Network Lana Maciel, Contributing Writer Gini Reed, Graphic Design Pamela Lewis, Chair, Anderson Network © 2010 The University of Texas MD Anderson Cancer Center

Page 8 Briefs Dude, I have cancer … now what?

Being diagnosed with cancer in your late teens, 20s or 30s presents a whole different set of issues than those faced by older or younger survivors. It can seem like a lonely world where no one understands what you’re going through.

Programs like Cancer180, the Cancer Survivor Message Board, WarmNet, the Adolescent and Young Adult Program and MD Anderson’s Young Cancer Connection Facebook page aim to provide support and connection to other young adults affected by cancer.

To learn more about these programs, check out www.mdanderson.org/ andersonnetwork, www.mdanderson.org/aya and www.facebook.com/ youngcancerconnection. Call us at 713-792-2553 or 800-345-6424. We’re here for you.

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