Network - Winter 2011

Winter

’11

People profiles: Carrie Simpson

p. 3 Doctor, Doctor Focus on adolescents and young adults

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Facing up to body image issues

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Genetic testing: what patients should know

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network

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

Working through cancer: readers respond

by Mary Brolley

The first time she was treated for ovarian cancer, Debbie Netterville wasn’t working. This had its advantages, to be sure.

She could rest when she was tired, for one.

But there were downsides, too, she says.

“I had lots of time, so I spent it researching on the Internet,” she admits. “And the statistics were depressing. Finally, my husband Scott said, ‘You stay off there.’ ” A year ago, when Netterville discovered that her cancer had recurred, she was working part time as a bus monitor at a school district in the greater Houston area.

She accompanied Scott, a minister and parttime bus driver, on his daily runs.

She didn’t want to give up her job, which provided insurance. And because of her earlier experience, she hoped working would also give her a way to feel productive and ensure that less time was spent surfing the Internet or worrying.

When our “Working Through Cancer” series began last summer, we asked for and received e-mails from the true experts on the subject — our readers. Some told stories like Netterville’s — of work being a welcome continued on page 2

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

continued from page 1

distraction from undue worry, of accommodating bosses, of colleagues eager to pitch in with various types of support.

Others, though, expressed frustration with the difficulties of working (or returning to work) while dealing with fatigue, long hours in physicians’ waiting rooms and hassles with scheduling appointments.

For some, working through treatment is impossible Our second article, in Scott and Debbie Netterville the fall issue, dealt with legal and insurance considerations of working through cancer.

In response, Suzanne Aschoff of Milwaukee, Wis., wrote to remind us that for some cancer patients, returning to work is not an option. Her late husband Lee received a stem cell transplant in 2008 — his only option against acute myelogenous leukemia. Unable to return to work because of his susceptibility to infection, he applied for and received assistance under the Family and Medical Leave Act and Social Security disability.

His coworkers pitched in to cover his responsibilities for months, yet he was eventually fired. This plunged him into a clinical depression that made recovery even more difficult, and he died 12 months after the transplant.

“I know MD Anderson has made great strides in treating cancer of all types,” Aschoff wrote. “But the protection laws have not kept pace. Assuring patients they are protected does them a disservice.”

It takes a village Maria Garcia Vorajakkomol, who teaches English as a second language, underwent chemotherapy for liver cancer in 2009. She wrote to tell us about the support she got from the school administration and colleagues in her school district in rural southeast Texas.

Because she found that she needed four to five days after each treatment to recover, her principal and the school district offered her leave from the communal sick pool. An aide assigned to cover her classroom also proved invaluable.

At work, fellow teachers insisted on covering her outdoor lunch duty to protect her from infection. “Working with

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people who care and are sincerely attuned to the difficulties in my situation gave me a true respect for the power of community,” she wrote.

“I’m blessed to be working in a small town that pulls together to help someone in need.”

Coworkers helpful throughout recovery Netterville knows she was especially lucky to be working with her husband and caretaker. “Scott really watched out for me. If he saw I needed help, he was right there. And if I needed to rest when we were home, he made me lie down.”

She also remembers the support and daily distraction provided by the kids who rode the bus. They watched her go from wearing a “halo” wig with a cap for many months to the wonderful day she appeared hatless, revealing her own short, curly hair.

She also credits her faith with having been — and continuing to be — tremendously important in dealing with her illness and treatment.

Her advice to those with cancer: “If you can physically manage it, work. Mentally, it helps.”

She remembers, also, that as soon as Scott told coworkers her cancer had returned and she’d had surgery, they started sending meals home with him. Some had been through similar experiences and wanted to show their support.

“Cancer patients came out of the woodwork,” she marvels.

To see parts one and two of our series on working through cancer, check out www.mdanderson.org/publications/network.

People profiles Keeping a positive outlook

by Lana Maciel

When cancer tried to bring Carrie Simpson down, she fought back not once, not twice, but three times with her best and strongest weapons — a positive attitude and an unshakable will.

Carrie with daughters Cara (left) and Bailey.

You’d never guess that Simpson, 31, has endured the long and grueling journey of cancer three times. Through To remove the cancer, Simpson underwent chemotherapy at chemotherapy, radiation and seven surgeries to remove a MD Anderson to shrink the tumor, followed by surgery, in which grapefruit-sized tumor from her back, Simpson says she always three of her ribs were removed. Two years later, she is cancer-free. managed to count her blessings.

Though Simpson no longer has full use of the muscles in “Some things in life could make you bitter, but you have a her back, the Dallas resident and stay-at-home mom says she’s choice, and I made the choice to stay positive,” she says. “It’s the learned to adjust. only way I’ve ever looked at life. I think that’s what helped me get She continues to spread her positive attitude and hope through it all.” as a telephone support volunteer for the Anderson Network Simpson’s first diagnosis — Hodgkin’s lymphoma — came and through her website, Cancerbiographies.com, a resource in 1999 when she was 20. A college student, she kept her mind off for patients, survivors, caregivers and their families to obtain her condition with classes and school activities. After treatment, educational materials and products, share their “cancer she went into remission for seven years. biographies” and offer encouragement to other patients.

But in 2007, she learned that cancer had again invaded her “After having cancer, you never go back to the way life was,” body. she says. “For people experiencing this change, I want them to This time, Simpson was diagnosed with malignant fibrous know there are many others going through the same thing and histiocytoma sarcoma, a disease that might have been caused by they’re not alone. earlier radiation treatments.

“My website reaches people all over the world, so I feel I A tumor was removed from her back, but just months later survived for a reason — to help others.” another tumor had formed in the same area. This one was lodged in her rib cage, so surgeons had to remove an area the size of a To become a telephone support volunteer or to football. be connected with another caregiver or survivor, But even this didn’t dampen Simpson’s spirits.

“I had a really huge support system of my husband, mom, call the Anderson Network, a program of the dad, stepdad, brothers, and my entire family and network of Department of Volunteer Services, at friends,” she says. “During the second occurrence, I had my two 800-345-6324 or 713-792-2553, or use the daughters, Bailey and Cara, who were 1½ and 3 years old, and online contact form at www.mdanderson.org/ they always kept me smiling. andersonnetwork.

“I was blessed to have them all there.”

Nurturing hope in others

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Doctor, Doctor Focus on adolescents and young adults with cancer We asked Anna Franklin, M.D., assistant professor in the Department of Pediatrics and medical director of the Adolescent and Young Adult (AYA) Program at MD Anderson, about the concerns of young adult (ages 15-39) cancer patients and survivors and how her team helps them cope.

What special issues do young adults with cancer face?

Before a cancer diagnosis, most young adults have never experienced a major illness, much less a life-threatening one. They typically have a sense of invincibility, and a cancer diagnosis immediately forces them to consider their mortality.

As part of normal development, many adolescents and young adults are transitioning to independence. Suddenly cancer and its treatment force many of our patients to become completely dependent on others again. They may need to move back in with their parents or have someone take care of simple daily needs like bathing, dressing and eating.

These are major concerns, but AYAs may also face other issues, such as altered body image, impaired fertility, a sense of isolation, depression, anxiety, little or no health insurance and unfamiliarity with the health care system. They also need to figure out how to continue their education or career development while being treated for cancer.

How does your team help them address and deal with these issues?

We try to help AYAs continue to lead as normal a life as possible. We encourage them to continue as many of their activities as they feel up to while they’re undergoing treatment.

And we encourage them to speak up and be their own advocates.

The Anderson Network, which provides support to patients,

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Anna Franklin, M.D.

survivors and caregivers, has a special program called Cancer180 that organizes social outings for AYA cancer patients.

They go to professional sporting events, cooking classes, video arcades, bowling — or just hang out at a restaurant or bar. It helps them realize they’re not the only twentysomethings with cancer.

Are young adults open about their issues and their worries about long-term side effects?

Like most people their age, AYAs with cancer are not open with older adults about their sexuality. Asking them about their relationships is crucial because they seldom volunteer the information.

Doctors and nurses mustn’t assume young adult patients know the risks associated with treatment, such as decreased fertility or other late effects; it’s our responsibility to educate patients. We should also educate patients about the screenings they need to monitor for long-term side effects, as well as what they can do to minimize their risks.

Is there resistance among this population to crucial follow-up screenings? If so, how do you deal with it?

Adherence to treatment and follow-up can be a significant issue in this age group. Once patients feel better, they may stop taking medications or coming to appointments because they don’t want to have cancer.

I’ve found the best approach is to ask patients directly why they’re not adhering to the health care team’s recommendations.

The answers have ranged from being “tired of having cancer” and wanting a sense of normalcy to not having the money to pay for parking or prescriptions.

Once we know what the issue is, we can garner resources from MD Anderson and the community to help them stay on track.

Facing up to body image issues

by Lana Maciel

A cancer diagnosis brings many changes in a patient’s life — physical, emotional and mental.

Patients may become self-conscious about how cancer has changed their appearance, and this may affect their lifestyle or self-esteem. It’s a difficult adjustment, and one that physicians rarely address in the exam room.

Enter MD Anderson’s Body Image Therapy Service, a program to help patients manage and cope with body image concerns, increase their self-confidence in social situations and discuss treatment decisions that will affect their outward appearance.

For patients whose cancers cause disfigurement, doctors and counselors help by discussing reconstructive surgery options or by better preparing patients for physical changes they will experience.

The program — the first in the nation to focus on body image issues of cancer patients — was created two years ago

by Michelle Cororve Fingeret, Ph.D., assistant professor in the Department of Behavioral Science.

Since then, Fingeret has seen 200 patients, and there are plans to expand the program’s services. Currently, 80% of her work with the Body Image Therapy Service is focused on research, with the remaining 20% spent counseling clients.

During the sessions, patients can discuss the psychological and emotional aspects of cancer that few doctors address during consultations and visits.

“Many patients are embarrassed or uncomfortable talking about body image,” Fingeret says. “When working with them, I validate their concerns about their body. I tell them it’s OK to worry, and it’s OK to cry; it’s natural to feel that way.

“I strongly encourage cancer patients to talk with their doctors about body image issues. This is extremely important before treatment so they’ll be better prepared for what to expect in terms of disfigurement or functional loss. Patients with unrealistic body image expectations end up having a much more difficult time adjusting.”

Healing the whole person While the Body Image Therapy Service focuses mostly on head and neck and breast cancer patients, Fingeret says she hopes to see the program expand to all patients.

“Every cancer patient experiences body image concerns,” she says. “It’s relevant and applicable to all.”

Fingeret says most of her patients struggle with isolation because they become unhappy with their bodies. Through counseling, she helps them regain social confidence. It’s all part of a larger goal for medical professionals at MD Anderson — treating every stage of a patient’s cancer journey.

“As we see a growing population of cancer survivors, it’s important to focus on treating both the illness and the whole person,” she says. “There’s a movement toward that nationwide, and at MD Anderson as well.”

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Genetic testing: what patients should know

by Mary Brolley

When Banu Arun, M.D., explains her work, she starts with the basics.

An expert in genetics — specifically the genes involved in mutations that raise the risk of breast and ovarian cancers — Arun is a professor in the Department of Breast Medical Oncology and co-director of the Clinical Cancer Genetics Program at MD Anderson.

First, she notes that a person’s lifetime risk of cancer is one out of two for men, one out of three for women. To add context, she might add that in 2010, an estimated 1.5 million Americans were diagnosed with cancer.

Of those who do get cancer, only 5% to 10% will do so by inheriting a mutated gene.

In fact, nine out of 10 people who develop cancer do so simply because they: • get older, • fit into a higher-risk category due to smoking, obesity or alcohol abuse, • have a predisposing condition such as HIV infection, or • have any combination of these factors.

Still, for the small proportion of patients at risk of inheriting cancer, genetic testing is an area of growing awareness and interest.

Genetic testing involves taking a blood sample. It may take several weeks to get the results. Though some patients worry that test results might be used against them, Health Insurance Portability and Accountability Act provisions prohibit group plans from using genetic information to determine eligibility or establish a preexisting condition.

Arun believes that before deciding whether to undergo testing, people should first speak with a genetic counselor.

“They’re specially trained to do a risk assessment with a patient,” she says. “And deciding to see a counselor doesn’t mean you have to go through testing. They’ll discuss the benefits and limits of being tested in each case.”

“For example, only about 10% of breast cancer types are inherited. The rest are what we call ‘sporadic’ — that is, they occur because of a confluence of factors.”

But what if there is a family history of cancer?

First, make a family tree Sketch out your birth family, noting whether anyone was diagnosed with and/or died of cancer, and at what age. Then go back as far as you can, filling in as many details as possible on earlier generations.

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Banu Arun, M.D.

The red flags for hereditary predisposition are finding relatives who contracted cancer before turning 50 years old and/ or had more than one primary cancer. Other warning signs are many family members with the same or a related cancer and multiple generations affected.

A positive result carries big weight because it means the person has a greater lifetime risk of developing cancer, and doing so at a younger age.

The best person to test is likely the person with cancer, Arun says. “Once we identify the mutation that caused her cancer, we can test first-degree relatives — mother, sisters, daughters—to see if they also carry it.”

Among the most common hereditary mutations are BRCA1 and BRCA2, which have been identified as breast-ovarian cancer susceptibility genes.

“It can be helpful for women to know their gene status before beginning treatment,” she says. “For example, a woman identified as carrying one of the BRCA mutations might consider a range of options, from treatment for the affected breast and surveillance on the other, to a prophylactic mastectomy.

“And once a woman knows she has the mutation, she can get more intensive screenings, including those for ovarian cancer, earlier.”

Though it’s her passion — her calling — Arun knows that genetic testing isn’t the answer for every cancer patient.

Limits, benefits of testing The tests can only provide information about a person’s risks of developing this type of cancer.

Not all of the genes associated with hereditary cancer have been identified. Not all gene mutations may be detectable. Results can be inconclusive. And costs, which range from hundreds to thousands of dollars, might not be covered by insurance.

But for some patients, the tests provide crucial knowledge.

Those who test positive for a known cancer-causing mutation might find that their initial disappointment and dread are followed by a resolve to meet the risks head-on with increased vigilance and enhanced screening.

In families that carry the mutated gene, those who test negative are relieved that their health and that of their children is less at risk.

Arun says that even these clients contribute to the Clinical Cancer Genetics Program’s research, which includes identification of new chemopreventive agents and several Phase II prevention studies.

“A number of young women we test agree to let us keep their blood samples for research. We’re so thankful for that,” she says.

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The University of Texas MD Anderson Cancer Center Communications 600784/18050661 – Unit 700 P.O. Box 301439 Houston, TX 77230-1439

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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 © 2011 The University of Texas MD Anderson Cancer Center

Page 8 Briefs Cancer Survivorship Conference a resounding success The 22nd annual Anderson Network Cancer Survivorship Conference ended with quite a bang. Held Sept. 24-25, 2010, the conference brought cancer experts from MD Anderson to deliver enlightening and empowering messages to nearly 500 cancer survivors, caregivers and medical professionals.

Keynote speaker Lorenzo Cohen, Ph.D., professor and director of the Integrative Medicine Program at MD Anderson, advised participants to take their health into their own hands by exercising more often, switching to a plant-based diet, avoiding environmental contaminants and reducing stress by meditating, practicing yoga and trying other forms of complementary medicine.

The conference’s rousing conclusion was courtesy of The Drum Café, which uses music as a common language to celebrate successes and tackle challenges.

There were no spectators during this performance — each attendee was provided a drum and followed the lead from the stage.

Mark your calendars — the next Cancer Survivorship Conference will be held Sept. 16-17, 2011.

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Go to www3.mdanderson.org/subscription to subscribe online.

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