Network--Summer 2011

Summer

network

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

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People profiles: Hans Rueffert

p. 3 Doctor, Doctor Epidemiology and risk models

p. 4

Telephone Support Line connects survivors

p. 5

Survivorship Conference

Sept. 16-17 p. 6-7 AndersonNetwork

Sex and the male cancer patient

by Mary Brolley

“I’m a guy. Guys don’t usually talk about this,” Bill Baun says.

Baun is referring to the sexual dysfunction and incontinence that often accompany treatment for prostate cancer.

Though it’s far from the only cancer (or cancer treatment) that causes incontinence and/or sexual side effects for men, treatment for prostate cancer is among the most closely associated with them.

Earl Davison (left) and Bill Baun discuss the side effects of Baun’s treatment for prostate cancer.

These effects include erectile dysfunction and loss of desire.

Luckily, just as there are many effective treatments for prostate cancer, there are a number of options for men with erectile dysfunction.

They include pills, injections, suppositories, vacuum pump devices and, if all else fails, penile implant surgery.

Baun, a manager of Wellness Programs in the Department of Employee Health and Well-Being at MD Anderson, says he received expert care before, during and after his treatment. His surgeon was Richard Babaian, M.D., professor emeritus in the Department of Urology.

But Baun especially remembers Earl Davison, clinical nurse in the Genitourinary Care Center’s Urology Clinic.

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

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‘We’ll fix this, one way or another’ Davison has worked with Run Wang, M.D., associate professor in the Department of Urology and one of the clinic’s attending physicians, for 11 years.

In keeping with MD Anderson’s multidisciplinary care model, physicians across the institution refer patients at risk for (or experiencing) erectile dysfunction to Wang.

Wang and Davison see about 65 patients in the GU Clinic every week, and Wang performs about 100 penile implant surgeries every year in the care center, Davison says.

Davison is the point person for these patients — usually couples — and provides practical counseling and solutions to help men resume their sex lives.

“We provide hope for these guys. We tell them: We can fix this, one way or another.”

Because they are sensitive subjects, incontinence and erectile difficulties require a balance of frankness and tact.

“Talking to Earl was easy,” Baun says. “It’s his attitude — he’s matter of fact about it. He made me feel comfortable.”

The ‘double whammy’ of hormone therapy For men like Baun with advanced prostate cancer, the addition of hormone or androgen therapies adds another problem: the therapies greatly diminish sexual desire.

A recent comment on MD Anderson’s Cancerwise blog, from a woman whose husband is being treated with androgen therapy, illustrates the issue.

“Not only am I dealing with the anxiety of his advanced disease,” she wrote, “but I no longer have any sexual life.”

In response, Leslie Schover, Ph.D., professor in the Department of Behavioral Science, acknowledged the “double whammy” men on androgen therapy experience.

“For many men, treatment for prostate cancer damages local nerves and blood vessels needed for good erections,” she says. “On top of this, androgen deprivation affects sexual desire as it’s perceived in the brain.”

Schover, a clinical psychologist with special expertise in treating sexual problems related to cancer, devotes her time to research on creating more effective treatment programs than currently exist.

MD Anderson physicians often refer patients for counseling to the departments of Psychiatry and Social Work or to sex therapists in the community.

Baun acknowledges that lack of desire was a side effect of his two years on the hormone therapy.

He and wife Mary Beth had to focus on each other and stay physically affectionate. They continued to talk about the issue, their feelings and the fact that they still loved each other, and had to show it in different ways.

Relationship aspects

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Recently, after a hiatus from the hormone treatments, Baun’s prostate-specific antigen (PSA) levels went up enough for his physician to recommend he resume them.

Earl Davison (left) and Bill Baun

This caused concern and renewed discussions between the couple, but they remain focused on their love and life together.

“I work at it; I bring her flowers,” Baun says. “We know we have to work at it together.”

For his part, Davison is grateful to be able to help so many male cancer survivors — and their partners — resume satisfying sex lives.

“Nobody, but nobody, does more to treat sexual dysfunction than MD Anderson,” he says.

“Patients never forget me,” he laughs. “I’ve been at the casino on my day off — you know, trying to be a tough guy, a cowboy.

“And a guy will recognize me, and bring over the group he’s with, and introduce me.

“It’s cool. Sometimes their wives hug me.”

If you’re a man who’s been treated for cancer, consider participating in the Second Manhood study conducted by Leslie Schover, Ph.D., in the Department of Behavioral Science. Participants will evaluate an educational website or share their experiences in videotaped interviews. Call Evan Odensky at 713-794-4031 or email him at eodensky@mdanderson.org for more information.

People profiles Gesundheit: Chef who survived gastric cancer shares hope

by Lindsey Garner

Acclaimed chef and cookbook author Hans Rueffert understands the irony of having been diagnosed with stomach cancer six years ago.

Seventy pounds lighter and in remission, the 38-year-old retains a passion for life and for food.

Rueffert grew up in northern Georgia, spending much of his time in the kitchen of his family’s business, the Woodbridge Inn.

“There’s a social side of food — that’s what I remember,” he says. “I salivate when thinking of my grandmother’s house.”

In July 2005, the day before his 33rd birthday and just two weeks after taping the finale of the “Next Food Network Star,” in which he placed third, Rueffert was diagnosed with stage 3 gastric (stomach) cancer.

The Ruefferts had lost Hans’ sister Sonja to breast cancer just the year before.

“We’d explained cancer to the kids as a boogeyman that took their aunt, and it was tough to tell them that now I had cancer,” he says.

“But I opted to be transparent and open with myself, my family and my community about my cancer.”

First, he had surgery at MD Anderson to remove half his stomach and half his esophagus. Then he underwent chemotherapy and radiation at Piedmont Hospital in Atlanta.

Facing complications with wit, candor

Rueffert returned to MD Anderson in August 2010 to address a leak at the junction of his stomach and esophagus, as well as a brain infection due to an abscess in his back that was caused by the leak.

Despite several surgical procedures to stop the leaking and infections, the remaining portion of his stomach was eventually removed during a procedure called a gastrectomy.

To gain weight, Rueffert eats a high-fat, high-protein diet and uses a plant-based protein supplement that he mixes into smoothies and juices.

Hans Rueffert and family: (clockwise) Finn, Amy and Ella

Rueffert has chronicled his cancer journey with honesty and wit on his blog hansrue.blogspot.com. He signs each post “Gesundheit” — a nod to his German heritage and a wish for good health for his readers.

His cookbook, “Eat Like There’s No Tomorrow,” takes readers on a narrative adventure through food and life. Besides recipes — Rueffert prefers the term “suggestions” — are stories of his battle with cancer and his love of food and family.

“Eat Like There’s No Tomorrow” is available on Amazon.com.

Besides running the Woodbridge Inn with wife Amy, Rueffert teaches wellness classes at Piedmont Hospital.

He’s also on the board of directors for the Gastric Cancer Fund and is an Anderson Network telephone support volunteer.

“It’s been rewarding working with Anderson Network,” he says. “Talking to patients who are incredibly scared, and telling them I was there five years ago, and I’m doing OK.”

Hans Rueffert will conduct a healthy cooking demonstration during Anderson Network’s Cancer Survivorship Conference Sept. 17. See pages 6-7 or go to www.mdanderson.org/patientconference to register.

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Doctor, Doctor Focus on epidemiology and risk assessment

Can experts predict who is more likely to develop cancer? We asked Carol Etzel, Ph.D., associate professor in the Department of Epidemiology, about the basics of designing a “risk model” for lung cancer.

Why and how do epidemiologists develop risk models?

We try to identify the factors that indicate risk, paying attention to what’s feasible. We choose, then evaluate factors based on: • a literature review to identify what other researchers have reported, and • discussions with experts to ensure that we consider all potentially important factors.

Then we develop a hypothesis to explore.

Can you describe the first risk models you developed for lung cancer?

In 2007, we published our first lung cancer risk prediction model. This was developed using the non-Hispanic white population of lung cancer cases and controls from a multiracial/ ethnic lung study that’s been ongoing in the Department of Epidemiology for 20 years.

For this population, the risk factors were determined after evaluating participants’ ages, genders and lifestyle habits, with an emphasis on smoking, family history of cancer, medical conditions and workplace exposures. This model was arranged by smoking status: never, former or current.

What about the risk model you developed for African-Americans and lung cancer?

Our goal was to develop a comprehensive epidemiologic lung cancer risk prediction model just for African-Americans.

We used data from the study mentioned above.

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The model included: • smoking-related variables, such as whether or not subjects smoked, and then for smokers or past smokers, how many packs a day they smoked, their age when they stopped smoking, and how many years since they stopped smoking (if they have); • self-reported physician diagnoses of chronic obstructive pulmonary disorder (COPD) or hay fever; and • exposures to asbestos or wood dusts.

We took our risk estimates from our risk model. Then, we factored in rates of lung cancer incidence and mortality from other causes. With this information, we produced 10-year absolute risk estimates for lung cancer for African-Americans.

Why did you design such a model?

In preliminary analyses, we had observed that though African-Americans share similar risk factors for lung cancer as non-Hispanic whites (such as smoking and COPD), their levels of risk were higher.

So, we felt that existing risk prediction models for lung cancer developed in white populations (including the one created by our group) might not be best for predicting risk among African-Americans.

How do the two risk models differ?

Our original model is arranged by smoking status: never, former or current. In the African-American model, all smokers are included in a single model. Exploring the interplay of smoking status, intensity of smoking and COPD status, we created a “composite” variable to evaluate risk for lung cancer.

We found that the highest risk is for African-American smokers (former or current) with a history of COPD and at least 26.4 pack-years of smoking exposure. So, African-Americans with COPD who’ve smoked — or used to smoke — for more than 20 years might discuss with their doctor their need to be screened for lung cancer regularly.

Are you at risk for lung cancer? Knowledge is power, so take the Cancer of the Lung Evaluation and Assessment of Risk (CLEAR) tool to find out. It’s at www.mdanderson.org/ clear.

Telephone support line connects survivors, sparks friendships

by Lindsey Garner

“Cancer is nothing new to me.

It’s not a stranger,” Robbie Archer says.

Her mother is a breast cancer survivor, and cancer took the lives of three of her aunts and a grandfather.

Even so, she never expected to get liver cancer.

In March 2008, Archer saw her primary care physician in Iuka, Miss., for what she thought was persistent heartburn. A CT scan revealed a large tumor on the right lobe of her liver.

A liver transplant, she was told, offered her the best chance for survival.

Wanting a second opinion, her gastroenterologist helped arrange a consultation with Jean-Nicolas Vauthey, M.D., professor and chief of the liver service in MD Anderson’s Department of Surgical Oncology.

In preparation, Archer researched her diagnosis. What she read overwhelmed and disheartened her.

Sifting through liver cancer statistics and prognoses, she found the Anderson Network Patient and Caregiver Support Line. The line links survivors and caregivers who have similar cancer diagnoses and treatments, regardless of where treatment was received.

Archer called Sam Short, senior administrative assistant for the Anderson Network, who promised to match her with a telephone support volunteer.

Thirty minutes later, Archer’s phone rang. “He said, ‘My name is Mike Mason, and I’m a liver cancer survivor.’

“I will never forget that day,” she says. “It was the first real hope I had.”

Mason, of Coffeyville, Kan., answered Archer’s questions and helped ease her uncertainty about her diagnosis by sharing his own story.

Diagnosed in 2004 with hepatocellular carcinoma, a type of liver cancer, Mason refused to accept that he had only six months to live. He sought a second opinion at MD Anderson.

The friendship of cancer At her consultation, Vauthey diagnosed Archer with primary intrahepatic cholangiocarcinoma, a rare type of liver cancer, and designed a treatment plan — avoiding a liver transplant.

Ralph and Robbie Archer with Mike Mason and girlfriend Sherrill

First she underwent a portal vein embolization procedure to increase the amount of healthy liver tissue. Three weeks later, she was set to return for surgery to remove the tumor.

That day, Mason happened to be at MD Anderson for a check-up, so he, his girlfriend Sherrill, Archer and husband Ralph met.

“We hit it off immediately,” Archer says.

Having had the same surgery Archer was preparing for, Mason told her what to expect and reassured her she could handle it.

He told her that after she “licked” her cancer, she should give back to other patients by becoming a telephone support volunteer. She did both.

Archer and Mason stay in touch through email and phone calls — updating each other on their check-ups and lives.

In October 2010, the couples took a trip to Branson, Mo. They talked about their families, ate at restaurants, went to shows and enjoyed the attractions of Silver Dollar City.

“It’s turned out to be a long-term, wonderful friendship,” Archer says.

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

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Former Major League pitcher Dave Dravecky to headline Cancer Survivorship Conference Sept. 16-17 Dave Dravecky knows he was never just “The Arm.” More than 20 years after a devastating mid-game injury — a pitch that shattered his arm and ended his pitching career — he is warm, upbeat and humble.

It wasn’t always that way.

Dravecky talks freely about the loss of identity, anger and clinical depression he experienced after his treatment for a desmoid tumor, followed by the injury and subsequent recurrences that led to the amputation of his pitching arm in 1989.

He credits his faith and the support of his family with his hard-won recovery. Determined to share hope with others who are suffering, he and wife Jan founded Endurance, a nonprofit ministry in Colorado that helps those facing serious illness, loss or depression.

Dravecky’s encouraging message will kick off the 23rd annual Anderson Network Cancer Survivorship Conference Sept. 16-17 at the Omni Houston Hotel Westside.

Join us for this year’s conference to learn more about the issues cancer survivors face, meet and share with other survivors, take wellness classes and have fun.

Speakers, breakout sessions, medical panel Open to all cancer patients, their families and caregivers, the conference includes nearly two dozen informative breakout sessions, including: • issues of young adult survivors, • depression and cancer, • the benefits and dangers of vitamin supplements, • sleep issues and cancer, • living with metastatic disease, • treatment of advanced melanoma, and • improving outcomes with comprehensive lifestyle change.

The popular medical panel includes MD Anderson experts Raymond DuBois, M.D., Ph.D., Robert Bast Jr., M.D., and Funda Meric-Bernstam, M.D. Soprano Barbara Padilla, runner-up in “America’s Got Talent,” will entertain at the banquet Sept. 16.

Other keynote speakers are chef and “Next Food Network Star” finalist Hans Rueffert (see profile, page 3) and mountain

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Dave Dravecky

climber Sean Swarner — both cancer survivors.

Thanks to MD Anderson, sponsors and individual donors, the cost of the conference is just $50 for early registrants, which includes all meals, activities and self-parking.

Registration is available online until Sept. 9. After that, guests must pay $60 at the door on the day of the conference.

The Anderson Network, an organization with support and educational services for patients/ survivors, their families and caregivers, is a program of the Department of Volunteer Services.

For more information about Anderson Network’s Cancer Survivorship Conference, including a complete agenda, visit www. mdanderson.org/patientconference or call 713-792-2553 in Houston, 800-345-6324 toll free.

Barbara Padilla

Hans Rueffert

Sean Swarner

Conference Facts

Conference Registration

Registration deadline:

Cancer Survivorship Conference Omni Houston Hotel Westside • Sept. 16-17, 2011

Friday, Sept. 9

Registration online: www.mdanderson.org/ patientconference

Please complete one registration form per person (you may copy additional forms) and return to:

Scholarships:

Cancer Survivorship Conference Office of Conference Services – 1381 UT MD Anderson Cancer Center P.O. Box 301439 Houston, Texas 77230

A limited number of scholarships are available for patients and caregivers.

To obtain an application, go to www. mdanderson.org/patientconference or call the Anderson Network at 800-3456324 or 713-792-2553.

Conference location: Omni Houston Hotel Westside, 13210 Katy Freeway, Houston, TX 77079

Hotel rates: The hotel is offering a group room rate of $95 for reservations made by Sept. 1.

For reservations and directions, call 800-THE-OMNI (800-843-6664).

Be sure to mention that you want The University of Texas MD Anderson group rate.

Parking: Self-parking is available at no charge.

Valet parking is at your own expense.

Photography By registering, I understand that MD Anderson will be photographing and/or recording the Survivorship Conference and that as a participant in the conference, my image or voice may be included in the photos and/or recordings made by or for MD Anderson. By registering for and/or participating in the conference (1) I irrevocably give permission to MD Anderson to have photographs and audio or audiovisual recordings taken or made of me in connection with the conference activities (the “Media Materials”) and to use, copy, distribute, display, exhibit, and release the Media Materials in connection with any of its business, educational, professional, or fundraising activities; (2) I release MD Anderson and The University of Texas System and their Board of Regents, officers, agents, and employees from any and all liability in connection with the Media Materials; and (3) I waive all rights, interest, or claims for payment or other compensation in connection with any use, copying, distribution, display, exhibition, or release of the Media Materials.

I am a

q Patient/Survivor q Caregiver/Family q MD Anderson Volunteer q Other Name: Last _____________________________ First________________________________ Address:______________________________________________________________________ City:_ __________________________________________

State:______________________

Zip:_ __________________ _ Daytime phone:_ _____________________________________ Email address:_ _______________________________________________________________

Registration fee: Registration is $50 until Sept. 9. After that date, participants must

register at the conference for a late registration fee of $60. Conference fee covers all activities and meals, including self-parking, Friday night banquet, Saturday luncheon and coffee breaks throughout the conference. I will attend/need: The banquet on Friday night

q yes

q no

Vegetarian meals

q yes

q no

Breakout sessions: If you’re able to go online to www.mdanderson.org/patientconference and consult the conference agenda, please choose the number of the breakout session you would like to attend in each cluster on Friday and Saturday and list by number here: Friday, Cluster 1 _________________________ Friday, Cluster 2_______________________ Friday, Cluster 3 _________________________ Saturday, Cluster 4_ ___________________

Payment information: The registration fee for the conference is $50, which covers only

a minimal amount of the cost of the conference. The price is kept low due to the generosity of MD Anderson, corporations and individuals.

Please make checks payable to UT MD Anderson Cancer Center. If you are paying by credit card, check one:

q VISA

q MasterCard

q American Express

Total amount to be charged:_____________________________________________________ Card number: _________________________________________ Exp. date: _ ____________ Authorized signature: __________________________________________________________

For additional conference information, including transportation to and from Houston airports, call the Anderson Network at 800-345-6324 or 713-7922553, or visit www.mdanderson.org/ patientconference.

Those paying by credit card may fax the registration form to 713-794-1724, but an authorized signature must accompany the form.

If you require a wheelchair, oxygen, etc., please plan to bring your own equipment to the conference.

For the protection of patients undergoing treatment, children under 16 years of age are not allowed.

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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

Non-Profit Org. U.S. Postage PAID Houston, Texas Permit No. 7052

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 Email: 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 Lindsey Garner, Contributing Writer Gini Reed, Graphic Design Erin McCormick, Contributing Photography F. Carter Smith, Contributing Photography Pat McWaters, Chair, Anderson Network © 2011 The University of Texas MD Anderson Cancer Center

Page 8 Briefs DePinho is MD Anderson’s president-designate The University of Texas System Board of Regents has named Ronald A. DePinho, M.D., the next president of MD Anderson.

DePinho has been the director of the Belfer Institute for Applied Cancer Science at the Dana-Farber Cancer Institute and professor of medicine (genetics) at Harvard Medical School. A member of the Institute of Medicine and fellow of the American Academy of Arts and Sciences, DePinho previously held numerous faculty positions at the Albert Einstein College of Medicine in New York.

His research interests are in the genetic aspects of cancer and the translation of this knowledge into clinical applications. He has authored more than 200 articles in peer-reviewed scientific journals.

DePinho will be MD Anderson’s fourth full-time president starting Sept. 1, and will succeed John Mendelsohn, M.D., who has served as MD Anderson president for the past 15 years.

www.mdanderson.org/network Save the date: The Cancer Survivorship Conference, presented annually by the Anderson Network, Department of Volunteer Services, is Sept. 16-17.

713-792-2553; 800-345-6324