Jean Nash Johnson

In 1986, when Patricia Ganz, MD, helped found the 

National Coalition for Cancer Survivorship

 (NCCS), treatment and research were central to any scientific conversation about cancer, but “post-treatment” was only beginning to gain traction as a concern. The young oncologist nevertheless had begun clearing a path as a pioneer for a specialty emphasizing healing after cancer treatment ends. Today, with more and more cancer patients living well beyond treatment, survivorship is becoming embedded in the medical landscape. Ganz, a University of California, Los Angeles professor of health services and medicine as well as author of 

(Springer), a book aimed at cancer professionals, also is recipient of last year’s American Cancer Society’s Distinguished Service Award. She is invigorated by the growing focus on survivorship and spoke recently to freelance writer Jean Nash Johnson about how surviving cancer has progressed in recent decades. 

How has the concept of “survivorship,” in terms of patient care once primary cancer treatment has ended, evolved over the past 20 years?

What happened was, with the founding of the NCCS, we defined a 

as a person with cancer from the time of diagnosis until death and including the family, which was broad and all-encompassing. If you just looked at the post-treatment phase, you would not focus on treatment decisions that would be made earlier that could affect the post-treatment survivorship phase. In 1986, fewer people were living disease-free for a long period of time, but a growing number were experiencing uncertainty about their future, as well as some of the serious side effects of treatment.

But the [Institute  of Medicine] committee study and report in 2005, “From Cancer Patient to Cancer Survivor: Lost in Transition,” focused on the fact that we now have this large body of people, probably now about 12 million, who are living post-treatment, many disease-free, many 20 years past diagnosis and treatment. We need to acknowledge that the post-treatment period is a special segment of the survivorship trajectory.

How has this evolving concept been integrated into practices and institutions that affect patient care—as well as payment for care?

We’re on the very early part of an adoption curve. Cancer centers are usually the lead places where innovations occur. In order to change practice behavior, it usually takes the additional resources and personnel that a cancer center often has. It takes changing behavior within the cancer center environment because that’s where you’re training new doctors.

One of the cardinal recommendations of the IOM was that every patient should have a treatment summary at the end of cancer treatment that tells patients what kinds of treatment they had, what kinds of things to look out for. Well, until we start training our medical oncology fellows and surgery fellows in the cancer centers that this is what you do, they are not going to be translating that into their community practices. 

What should cancer patients expect from each member of their oncology team (oncologist, oncology nurse, social worker) to help prepare them for survivorship?

Again, the oncologist needs to be the person who summarizes in written form the treatment the patient had, any known short- or long-term side effects and how patients need to be followed after—how long they need to be seen, blood tests, X-rays, exams they will need and at what intervals, and who needs to be responsible for what.

The oncology nurse may help in making this plan but also may deliver the information and counsel the patient about diet and exercise, stress management, follow-up care

 relating to how the patient can promote better health and prevent a cancer recurrence. The oncology nurse can also meet with the patient through post-treatment

Social workers are very important [because] many patients are particularly concerned about psychological and social issues. Maybe they were off work during treatment and now have to go back. There could be changes in family relationships, depression, anxiety.

What are the key quality-of-life issues that linger for patients long after cancer treatment has ended?

Pain, fatigue, anxiety and depression, body image changes [loss of body parts, scars, weight gain or weight loss], sexuality. Right now we don’t have a very good system of post-treatment care. The goal is that someone sits down and does a treatment summary and survivorship care plan and at least identifies concerns the patient may be having, even if the doctor or the nurse doesn’t have the skills to address some of these things. Let’s say you ask, “How is your sex life?” [and] do a little probing to see what might be going on? The patient may deny a concern but will know that the provider is concerned and may bring it up in the future. The patient can be referred to a sex therapist.

Typically what happens is that the patient comes back into the office and it’s: “Oh, well the cancer hasn’t come back. You’re doing great.” That [attitude] is what we want to try and get beyond.

Given that more than half of all cancers are diagnosed in people older than 65, what specific attention should be paid to the needs of older cancer survivors?

Sometimes cancer treatments make pre-existing problems that older people have worse. For instance, some of the drugs or other treatments can enter the heart muscle and cause heart failure or other organ damage—kidney, lungs. There may be some clinical changes in organ functions, or pre-existing abnormalities can be made worse.

It’s very important that we communicate closely with the primary care physician so these areas are not neglected.

Social support and concrete needs such as transportation to see the social worker, for example, may be very important to the older patient because often older people are caregivers to an older spouse. It’s important to make sure that they are getting follow-up cancer surveillance.

What remains to be done to better serve cancer survivors throughout their lives?

The fundamental thing is that we need more research done on what some of the late effects are. For breast cancer, perhaps, we have a lot more information. We don’t have good descriptive epidemiology and risk factor data and you’d like to have that data so that you could prepare patients so that you can say, “Oh it’s an extremely rare event.”

For breast cancer, leukemia can occur from chemotherapy. It’s extremely rare, less than 1 percent. I have that data and I can tell that to the patient. But if somebody had radiation and chemotherapy for lung cancer or colon cancer, we don’t have long-term follow-up for the treatment regimens we have. We don’t have good information on whether taking a treatment causes a specific problem in the future, [linked] to specific drug recipes, if you will. More [research] money needs to be invested.

Again the challenge with cancer is that it probably represents a hundred different kinds of diseases with different disease treatments. 

Articles

Survivorship in Focus

After five years with brain cancer, Michael Feuerstein, 57, lives, sleeps and breathes for cancer survivorship. He is a survivor and he is a champion.

With advances in research and technology increasing the odds for beating cancer, greater emphasis on survivorship is needed in the medical community, says Feuerstein. Since his own 2002 diagnosis with a grade 3 anaplastic astrocytoma, the scientist for 29 years (with a PhD in clinical psychology) has made it his mission to  help heighten the quality of life for those who have had cancer.

“He really feels he was saved for a reason,’’ says his wife, Shelley, a school psychologist.

“Patients are living longer with cancer. I’m not an MD, but I am a scientist and I know a lot about this stuff, and I was scared,’’ Feuerstein says from his office at the Uniformed Services University of Health Sciences in Bethesda, Maryland. 

Feuerstein’s goal is to buffer the fear factor for survivors by helping doctors communicate better with patients and by helping those who are healing to take command of their disease.

Journal of Cancer Survivorship: Research and Practice

, published by Springer and aimed at health care professionals who need to understand lifestyle issues affecting patients from diagnosis into recovery. The quarterly journal, edited by Feuerstein, provides new information regarding the health, health care, and quality of life for survivors. It includes research papers, case studies and articles from leading experts worldwide. A complementary publication, 

, provides a summary of important research in the area. (The journal is available at www.springer.com/journal/11764 or by calling 212-460-1500.) 

Feuerstein and coauthor Patricia Findley wrote 

The Cancer Survivor’s Guide: The Essential Handbook to Life After Cancer 

(Marlowe and Company, $15.95). It’s filled with useful how-to’s for coping after beating the odds. 

His hard work and commitment is receiving notice. 

 received a favorable nod in a June 14 review in 

 story by health columnist Jane E. Brody about people thriving after cancer. 

Who better to be advocate and authority? As a research scientist and academic, Feuerstein actively studies behavioral medicine and health psychology. His expertise on the patient side gives balance. However, unlike his careful planning for life as a scientist, there was no time to prepare for life with a fatal disease.  

In May 2002, a “perfectly healthy” Type A Feuerstein was heading to lunch near his office at Georgetown University Medical Center when he stepped off the curb to cross busy Wisconsin Avenue in Washington, D.C. “As I looked to the left and right, I wound up getting a little dizzy. As I tried to run across the street, I found that I couldn’t really move my legs one in front of the other. It was a brief moment. After, I ran across wobbling, then hung on to a tree. The whole thing stabilized and I drove straight home.’’ 

Shelley’s gentle voice bristles when she recalls him driving home not knowing what was wrong.  “I don’t know what he was thinking,’’ she says. They have been married 35 years and have three children, Sara, 29; Andrew, 27; and Erica, 19. Their two grandkids, Sara’s children, were born after the cancer. The brood has been Feuerstein’s glue since the fateful street crossing.  

That afternoon he saw his internist, who referred him to a neurologist. An MRI revealed a tumor growing in the right cerebellum. Days later he was in surgery at Baltimore’s Johns Hopkins Hospital. 

 “I’ll never forget the radiologist’s words: ‘I don’t know what this is, but it looks pretty bad,’ ’’ Feuerstein says. He got his affairs in order, as he was advised, and began his battle. In spite of the prediction he would live only three months to a year, Feuerstein refused to die.

Shelley, 56, remembers the day of the procedure. She told neurosurgeon Howard Fine, MD, “Please be so careful because this is a very brilliant mind you’re going into.’’ She reassured the children, they comforted her, and the family waited. 

Youngest daughter Erica, now a college sophomore, was 14. “What sticks out in my mind the most was when Dad called from the doctor’s,” she says.

“His voice sounded so scared, and when I asked what was wrong he firmly asked to talk to Mom. It was all so unreal. … I kept most of my feelings inside. I would cry alone in my room so that my parents, especially my Mom, wouldn’t see me upset.’’ 

It wasn’t until Erica’s senior year, when she wrote an essay about her Dad’s experience, that Feuerstein understood the depth of Erica’s grief.  Her essay is printed in the survival guide under “Form a Support Team.’’ In that chapter, Feuerstein emphasizes the vital importance of support.

His own support came in the form of his colleague and friend Neil Grunberg, who now enjoys a close friendship with the family. Feuerstein had asked him to be available after surgery to explain the jargon to Shelley and the children.

Grunberg, a research scientist and professor specializing in animal model and behavioral medicine, works down the hall from Feuerstein’s university office and continues to lend support during the workday. 

“It’s important [for survivors] to have a supporter in the workplace—someone who will be honest and direct about how you’re coming across, and help you be self-aware,” Grunberg says. “After staff meetings, often Michael will ask, ‘Was I too blunt?’ ’’

Feuerstein appreciates Grunberg’s feedback. “Many times it’s not fair to burden family and friends. They get stressed, too.’’ He advises survivors to talk to other survivors and join support groups.  

As for his personal journey, it’s what fuels his cause. His survival story shows that optimism and not giving up are vital components to thriving with cancer, he says.

After radiation and two months into chemotherapy, things started looking better. “Each MRI, the tumor kept shrinking. After a while you couldn’t see it, which isn’t necessarily good news. It’s just not evident,’’ Feuerstein says. 

It wasn’t bad news, either. So he keeps thrusting his agenda forward. He is consumed with changing the health care culture so that communication between provider and survivor improves. 

Survivors should seek follow-up care without hesitation, he says. “Develop a health care team from diverse specialties and call on them when you need to. Don’t ignore symptoms. They probably don’t mean the tumor is back, but maybe you can get help for troublesome symptoms. Don’t feel like you’re being a hypochondriac, which is easy to do. ”

Realistic optimism also is a good measure, he says. “This is not just being positive or hopeful all the time, but realizing you might have old and new health problems and new forms of stress from time to time.”

Feuerstein realizes that his intensity about survivorship can seem overwhelming.

 “My doctor says I’m like an alcoholic working in a bar. I do think about this too much,’’ he muses.

It’s important for him to stay on top of his crusade, says Shelley. “I’m getting used to it. We just try to keep a sense of humor,’’ and when she can, she pulls him away from work to spend time with the grandchildren, who live nearby.

“The grandkids are a wonderful distraction,’’ she says.  

A brain tumor shifts a psychologist’s focus to helping survivors thrive.

A Mission of Empowerment

You know you can die young,” Robin Lawrence recalls blurting out to two tanned teens passing her booth at the annual Evansville, Ind., health fair last spring. Lawrence, 47, a former bodybuilder and melanoma survivor, wants this generation’s attention: Melanoma kills.

Health fairs, school lectures, community presentations — Lawrence calculates she’s done 600 appearances since concluding her skin cancer treatment five years ago. After the initial surgery to remove the cancer from her buttocks, she underwent 25 biopsies. As a result, four other melanomas (carcinoma in situ) were removed, as well as 13 atypical moles (dysplastic nevi tumors), all precursors to melanoma.  

“Ultraviolet rays and tanning are harmful, and young people should know this now. I wish I had known,” she says. Her fear is that not much has changed since she was a teen. Lawrence’s own daughter, now 20, was tanning with her up until the cancer diagnosis.

The girls at the health fair booth were “very attractive,” says Lawrence. “I didn’t want to scare them. I apologized for the abruptness and handed them materials and sunscreen and told them to be careful.” Maybe they listened. Maybe they read the information. The point, Lawrence says, is that she has done her job.

Lawrence, chatting by phone last winter from her office in Evansville, was preparing to go to San Antonio in February to receive the American Academy of Dermatology’s Gold Triangle Award. It is her third AAD award and one of many public services honors she has received since her advocacy work began.

She crusades tirelessly. Her first day on the job as the director of marketing for the Evansville Cancer Center was March 25, 2002, three days after the news of her own cancer. “There are no coincidences. I was told on a Friday I had cancer. I called the center and asked Dr. [Al] Korba, ‘Do you still want me to come to work?’ He said, ‘You’re one of us, now.’ ” Korba, the recently retired director of the center, is a bladder cancer survivor. 

Lawrence travels mostly to area schools and nearby communities, filling up college, high school and middle school auditoriums and classrooms. Part of the advocacy work is professional, but she also uses her own time to speak to organizations and individuals about her cancer experience and the dangers of melanoma. She often takes phone calls from concerned parents, like the mother of a 14-year-old cheerleader who suspected that her daughter was sneaking into a tanning salon. Lawrence’s advice was to find the salon and hold it accountable. “She’s underage, and that’s illegal,” Lawrence says.

The laws vary by state. In Indiana, anyone under 16 visiting a tanning salon must be accompanied by a parent or guardian and have a signed consent form from a parent or guardian. Between ages 16 and 18, only the signed consent is required. Salons that violate the law face fines.

“The fines are not always imposed; however, I want people, parents especially, to know they exist so they can make an informed decision. I wish someone had warned me and my parents,’’ Lawrence says.

Melanoma of the skin is the seventh-most common cancer in women (sixth in men), according to the American Cancer Society, and is the most common cancer in young adults ages 25 to 29. The odds of successful treatment drop drastically when melanoma spreads beyond the skin to other parts of the body, including the lungs, liver and brain. More than 75 percent of skin cancer deaths are from melanoma, translating to about 8,000 deaths a year in the United States.

Lawrence preaches prevention and emphasizes risk factors: “Stay out of the sun from 10 a.m. to 4 p.m. Wear sunscreen, sunglasses with UV protection, hats, long-sleeve clothing and long pants. Don’t use tanning salons.”

As in her day, young people still associate looking good and healthy with being tanned, she says. The fair-skinned, blond-haired, blue-eyed Lawrence admits she was clueless growing up on a farm in southern Indiana. Blonde- and red-haired people with very white skin are more susceptible. But, she says, no one is immune. “People forget [black reggae icon] Bob Marley died of skin cancer in his 30s.”  Marley’s melanoma originated in his toe.

As a teen, she obsessed over tanning, pouring on a mix of iodine and baby oil and lying in the sun for hours. As she got into her 20s and into bodybuilding, Lawrence says the need seemed more urgent. She discovered tanning salons.

In March 2002, she had a mole on her face checked out. It took almost three months to see a dermatologist. The mole was an age spot, but a closer look at a mole on her buttocks showed cancer.

“It’s impossible to see a skin specialist immediately unless you are an established patient,” Lawrence laments. “I believe everybody past 40 should have a dermatologist and an annual skin cancer check. We get breast exams and Pap smears. We screen for colon cancer. The skin is the largest organ on our body, and probably the one we pay the least attention to.”

She keeps an arsenal of facts and stats for every question asked. She is determined to change attitudes and lifestyles. There is no choice, she says. With the increasing threats to the ozone layers, there is greater risk of overexposure to the sun. The good news, she points out, is that skin cancer, if detected early, can be very curable.

Lawrence often shows up with a DermaScan machine offering free screening. “I tell people, ‘I’m not a dermatologist. This is a machine that shows you the damage to your skin from UV radiation either from the sun or tanning beds.’ If something shows up on the scan, I urge them to get it checked.’’ (At the 2007 Evansville health fair, 84 were screened and 35 were urged to follow up with a doctor based on what the scans revealed.) She gives a PowerPoint lecture, shows her heart-rending video interview with a 20-something who ultimately lost her battle with melanoma, and provides sunscreen samples and handouts. 

Her talk is frank and powerful, says Gloria Schwartz, an Evansville wellness coordinator who helps Lawrence with presentations. Schwartz has observed numerous presentations at the University of Southern Indiana and Indiana Vocational Technical College, where she is an adjunct instructor, as well as in the community.

“The message resonates with young audiences,” says Schwartz, also a melanoma survivor. “Students listen. They become extremely quiet when she’s talking, and you see the wheels turning. At the end of the lectures, they swarm her.”

The annual Evansville health fair takes place in May, which happens to be Skin Cancer Awareness Month. Lawrence says she is as excited about the fifth as she was the first, coordinating plans with other presenters, spreading the word to the community, calling on doctors including her own to provide the complimentary screenings, and working with the mayor and his staff to secure another successful Healthier Evansville Week.

She also is pushing for a sunscreen protection program in Evansville in memory of Southern Indiana basketball star Wesley James Attebury, who died a year ago, three years after being diagnosed with melanoma. He was 28 and left behind a wife and baby.

To read about new, investigational therapies for melanoma, see 

There are no coincidences. I was told on a Friday I had cancer. I called the center and asked Dr. [Al] Korba, 'Do you still want me to come to work?' He said, 'You're one of us now.'

Melanoma survivor and once-devoted tanner spreads the word about skin cancer.

Seeing the Light

In December 2000, as soon as he could after surgery for stage 4 pancreatic cancer, John Plumb Sr. wheeled himself around the corridors of Barnes-Jewish Hospital in St. Louis, combing bulletin boards in search of support groups. 

He wants to create enough awareness about pancreatic cancer to increase positive results. Advances in treatment of cancers such as breast and colon in the last 10 years happened because of the persistence of those impacted, Plumb says. “I’m not a medical expert, but I do know it’s better to talk about it.’’ Questions lead to research, funding, better treatments, and cures, he explains.

According to National Cancer Institute figures, about 37,170 people were diagnosed with pancreatic cancer in 2007, and an estimated 33,370 died of it. 

It’s the “third or fourth cause of cancer death,’’ says Steven Strasberg, MD, Pruett Professor of Surgery and head of hepatobiliary-pancreatic and gastrointestinal surgery at Washington University in St. Louis. He also was Plumb’s oncologist. 

There is reason for hope, Strasberg says. It wasn’t until 2005 that there were fewer new cases than deaths. The survival rate has continued to climb the last 25 years because operations for pancreatic cancer have become safer, he says. The lucky few who get to the surgeon in time stand a very good chance of recovery. “We are very encouraged,’’ Strasberg says.  

The numbers fuel Plumb’s efforts; however, it’s a constant challenge. 

There is no screening for pancreatic cancer and it is hard to detect early. By the time symptoms occur, in most cases, cancer cells have spread to the lymph nodes and other organs, making it hard to treat. Pancreatic cancer is also very resistant to chemotherapy and to newer, biologically targeted treatments.

“How lucky I am to have so many prestigious physicians and scholars in the cancer community willing to help.”

Before Plumb’s chronic stomachaches in the fall of 2000, he had had no serious health issues. He drove a heavy-duty tractor for a living and to relax, he played baseball, softball, and volleyball. Before the cancer diagnosis, Plumb says, he had never been hospitalized or on medicine for a chronic illness.

“Basically, I got a little ailment, ate a bowl of chicken soup, and was feeling better.’’ 

The constant pain in his upper abdomen came “out of nowhere.” The day he doubled over with pain so severe he could not move, he knew something was seriously wrong. In early December, on his 60th birthday and 42nd wedding anniversary, he and Gay received the news, which Gay calls devastating. 

“Immediately you start thinking about how you could have been more proactive,” she says. Recalling some of his lab results from a physical exam before the cancer, Gay questions whether it was cancer then.  

Plumb had surgery almost immediately. The cancer was in the head of the pancreas and involved two lymph nodes, which were excised. The procedure was a success.  “Dr. Strasberg is a miracle worker,’’ Gay says.

In less than a month, he went from surgery to recovery to radiation to chemotherapy. But there was no one around who had been through it, which Plumb says was the “worst feeling in the world.” Fortunately, his son, John Plumb Jr., who lives in Austin, Texas, connected him with a colleague whose dad had survived pancreatic cancer.  

Plumb didn’t want anybody going through cancer to experience that isolation. With encouragement from his pastor at Lake St. Louis Baptist Church, he created the Tri-County Cancer Support Group. The organization met monthly at the church.

“We had seven at the first meeting, and I thought, ‘This is a good start.’ ” Others eventually came from all over. “They kept coming,’’ Plumb remembers.

“I love John’s exuberance. It was impressive that he had gone through hell and back and was committed to helping people.”   

The idea appealed to cancer doctors and nurses who volunteered as speakers. Plumb took out ads in the local newspaper and got the stamp of approval from the American Cancer Society when it took over the group’s mailings.

There were annual Thanksgiving gatherings. “All the food and support and love they could want at no cost to them, mind you,” Plumb points out. “I can’t recall a time I was turned down. Wal-Mart, the local grocers, church volunteers. Nurses from the cancer treatment center would bring food. The Cancer Care doctors contributed money and entertainment.”

For five years the group flourished as Plumb endured more challenges. Less than two years after his surgery, Gay was diagnosed with stage 1 uterine cancer and underwent a complete hysterectomy. “Thankfully, it was caught early in my annual Pap smear,” Gay says. 

After Gay’s surgery, a lump Plumb discovered under his right arm led to early diagnosis and treatment of non-Hodgkin’s lymphoma. In between, Plumb was severely injured in a traffic accident while trying to rescue his two grandsons, whose sleigh was stuck in icy conditions.  If it were not for his Navy medic training and his proficient tourniquet, he may have lost a foot. He spent 21 days in the hospital and limps as a result of a metal rod from his knee to his ankle. 

As the support group grew, Plumb wanted to reach more people. Steve Kaspar, KFAV co-owner, liked the idea of a cancer talk show. “I love John’s exuberance. It was impressive that he had gone through hell and back and was committed to helping people.”

The live, non-profit, weekly program runs September through November in the evenings. Plumb, guests, experts, and patients talk about issues: diagnoses, symptoms, treatments, facilities, second opinions, medications, recovery, recurrence. The show is a good mix of John’s everyman style and the medical experts’ approach, Kaspar says.

Kaspar estimates there are about 15,000 listeners. While there are no on-air call-ins, he suggests from the feedback that the community embraces the idea. E-mails have been positive, and Kaspar says he constantly runs into locals who say, “I love Surviving Cancer.”

“There are few, if any, radio stations that stop the music to do a half-hour show about cancer,” Kaspar says. “A radio station that plays music should also bear the responsibility of connecting with the public on important issues. When cancer strikes almost every family in some way or another, let’s talk.”

The sponsorships came pouring in, he adds. Valvoline Oil, the local florists, the local pharmacy, a carpet retailer—all wrote checks. 

Plumb likes to talk about the youngest pancreatic cancer patient he helped. She was diagnosed at age 12 and was not doing well post-surgery. He featured her on the show twice. “Her immune system was wiped out. She was catching every&shy;thing. She was in an adult treatment center. I urged her parents to get her into Barnes’ Children’s [hospital]. Four years later, she’s a high-school cheerleader, being a normal teenager.”

Plumb says the hardest cases come when someone has waited too long to get symptoms checked out. “It’s hard to encourage somebody when they’ve waited to get checked out or the cancer wasn’t found in time. I tell them they can’t lose sight. You go on and make the best of the situation and get the help you can get.”

The survivor group now is run by Barnes-Jewish Hospital. When Plumb is not on the radio, visiting treatment centers, modeling wigs to make patients laugh, or participating in a celebrity golf tournament to raise awareness, he’s answering phone calls and e-mails and driving a school bus. Gay says his humor and optimism keep the family going. Their other son, Daniel, and his family live nearby, and the grandchildren keep them both happy, she says.

Seven years surviving a deadly cancer is reason to be upbeat, Plumb says. The mind goes south when you hear the word cancer, but it’s not necessarily a death sentence anymore, he says. 

“Organizations like PanCAN (a national patient advocacy group for pancreatic cancer) and excellent doctors like Dr. Strasberg work hard every day to change the outcome. A great number of people have a great chance of living a long time with all the new treatment. I’m still here.” 

The mission was futile, prompting a puzzled Plumb to question the first staff person he encountered:  “Where is help for people like me?’’

“There aren’t any support groups for pancreatic cancer because patients don’t usually live,” he was told. A stunned Plumb, at age 60, decided to create his own.

“Nobody should go through something like this alone,’’ Plumb says now, in an interview with his wife, Gay, from their Lake St. Louis, Missouri, home.

It’s November and Plumb is at his busiest as a survivor champion because November is National Pancreatic Cancer Awareness Month. Plumb’s radio show, Surviving Cancer, is well into its fifth year on local radio station KFAV-FM. Washington University professor and cancer researcher Timothy Pluard, MD, is co-host this season.

“How lucky I am to have so many prestigious physicians and scholars in the cancer community willing to help,’’ says Plumb, who turned 68 in December.

His support group, too, has generated interest. Only months into recovery in spring 2001, he founded the Tri-County Cancer Support Group. Plumb is particularly thrilled when he can help those who are going through pancreatic cancer.

After a diagnosis of pancreatic cancer, this Missouri man is undaunted in efforts to connect with others. 

Surviving With A Plumb

, published by Springer and aimed at healthcare professionals who need to understand lifestyle issues affecting patients from diagnosis into recovery. The quarterly journal, edited by Feuerstein, provides new information regarding the health, healthcare and quality of life for survivors. It includes research papers, case studies and articles from leading experts worldwide. A complementary publication, 

, provides a summary of important research in the area. (The journal is available at 

The Cancer Survivor’s Guide: The Essential Handbook to Life After Cancer

 (Marlowe and Company, $15.95). It’s filled with useful how-to’s for coping after beating the odds. 

Who better to be advocate and authority? As a research scientist and academic, Feuerstein actively studies behavioral medicine and health psychology. His expertise on the patient side gives balance. However, unlike his careful planning for life as a scientist, there was no time to prepare for life with a fatal disease.

Patients are living longer with cancer. I'm not an MD, but I am a scientist and I know a lot about this stuff and I was scared.

In May 2002, a “perfectly healthy” Type A Feuerstein was heading to lunch near his office at Georgetown University Medical Center when he stepped off the curb to cross busy Wisconsin Avenue in Washington, D.C.  “As I looked to the left and right, I wound up getting a little dizzy. As I tried to run across the street, I found that I couldn’t really move my legs one in front of the other. It was a brief moment. After, I ran across wobbling, then hung on to a tree. The whole thing stabilized and I drove straight home.’’ 

Shelley’s gentle voice bristles when she recalls him driving home not knowing what was wrong.  “I don’t know what he was thinking,’’ she says. They have been married 35 years and have three children, Sara, 29; Andrew, 27; and Erica, 19. Their two grandkids, Sara’s children, were born after the cancer. The brood has been Feuerstein’s glue since the fateful street crossing. 

“I’ll never forget the radiologist’s words: ‘I don’t know what this is, but it looks pretty bad,’ ’’ Feuerstein says. He got his affairs in order, as he was advised, and began his battle. In spite of the prediction he would live only three months to a year, Feuerstein refused to die.

“It’s important [for survivors] to have a supporter in the workplace — someone who will be honest and direct about how you’re coming across, and help you be self-aware,” Grunberg says. “After staff meetings, often Michael will ask, ‘Was I too blunt?’ ’’

It wasn’t bad news, either. So he keeps thrusting his agenda forward. He is consumed with changing the healthcare culture so that communication between provider and survivor improves. 

Survivors should seek follow-up care without hesitation, he says. “Develop a healthcare team from diverse specialties and call on them when you need to. Don’t ignore symptoms. They probably don’t mean the tumor is back, but maybe you can get help for troublesome symptoms. Don’t feel like you’re being a hypochondriac, which is easy to do. ”

“The grandkids are a wonderful distraction,’’ she says.

With advances in research and technology increasing the odds for beating cancer, greater emphasis on survivorship is needed in the medical community, says Feuerstein. Since his own 2002 diagnosis with a grade 3 anaplastic astrocytoma, the scientist for 29 years (with a PhD in clinical psychology) has made it his mission to  help heighten the quality of life for those who have had cancer. 

“Patients are living longer with cancer. I’m not an MD, but I am a scientist and I know a lot about this stuff, and 

 was scared,’’ Feuerstein says from his office at the Uniformed Services University of Health Sciences in Bethesda, Md. 

A brain tumor shifts a psychologist’s focus to helping survivors thrive 

Valentine’s Day 2003, several days before the utterances, Kris Carr learned she was sick. That day the New York actress/filmmaker was diagnosed with epithelioid hemangioendothelioma, a cancer of the vascular system that was found to involve both of her lungs and her liver.

Epithelioid hemangioendothelioma: a long label for a rare, incurable cancer.

There’s no widely used abbreviation for the disease, though insider docs refer to it as EHE.

In Carr’s case, the disease has metastasized and become stage 4.

But don’t tell Carr, 35, her illness can be terminal.

Armed with a camcorder and laptop, days after the diagnosis she began a video journal chronicling her story and the experiences of four other women with cancer.

What began as an instinctive exercise (“It’s what I knew to do’’) ended up being a unique story of her battle not only to survive, but to live.

She eventually collaborated on the finished work with her film partner and now husband, Brian Fassett, 41. 

 was so impressive, The Learning Channel cable network has scheduled the two-hour documentary’s television premiere on Aug. 29, at 9 p.m. EDT.

Carr grew up a tomboy across the street from a dairy farm in upstate New York’s Westchester County. She went on to attend New York University, earning a degree in English. After college she found work as an actress in soap operas and television commercials and was thriving in the Big City when cancer called.

The documentary opens with Carr’s relatively mild meltdown and sassy affirmation, setting the tone for her gutsy, earthy film. In addition to interspersed profiles of four “cancer chicks’’ (a rock ’n’ roll tour manager, a journalist, a mom-to-be and an award-winning playwright/actress), the documentary shows Carr’s vulnerable moments and native wit.

Early in the film, Carr explores alternative treatment for her cancer and overall health, sheepishly looking at myriad approaches, including a healing clown, visualization exercises, crystals, massages, Chinese herbs and dance therapy.

Then, the tone sobers as Carr puts living with cancer to the test.

“You think you’re young, and now is forever. I wish I would have paid more attention, but I don’t know whether or not I could have prevented cancer. Now, I certainly want to do the best I can to keep it stabilized. If I have any say over it, I’m going to stay healthy.’’

Her regimen has improved her health, she says. Since her body do-over, which she playfully refers to as “eating her veggies,’’ she doesn’t get colds or half the ailments she’s had in the past.

You think you’re young, and now is forever. I wish I would have paid more attention, but I don’t know whether or not I could have prevented cancer. Now, I certainly want to do the best I can to keep it stabilized. If I have any say over it, I’m going to stay healthy.

The period right before she learned she had cancer was marked with stomach complaints.

“I had noticed problems three years prior to my diagnosis. I was in pain all the time. Bouts with constipation, gas. I was given the purple pill and told I had acid reflux, then told I had irritable bowel syndrome. You don’t ask, ‘Is it gas, or is it cancer?’ ’’

Before the diagnosis, Carr returned home from a film festival, and the next day after yoga class noticed pain in her left side. The following morning she was doubled over.

At first doctors focused on her gallbladder and wanted to remove it. “ ‘No, thank you very much. I’m leaving with what I came with,’ I told them,’’ she says, laughing.

When you’re young and have been reasonably healthy, doctors aren’t necessarily inclined to suspect cancer, she explains. Finally, a CAT scan found 24 tumors in her liver.

For a New York minute, Carr thought of getting her affairs in order. “That wasn’t me. For me, it was about coming up with my game plan. Getting the most information I could, looking for the best doctors. There wasn’t a lot of information out there.’’

In the documentary, she’s shown conducting her search for the No. 1 specialist the way a corporation head-hunts a CEO. She would employ the best, and he would work for her.

“If you are the right physician for my company, then I’ll hire you, but if you’re talking about life expectancy and statistics, and scaring the bejesus out of me, I’m not hiring you.’’

She found George Demetri, MD, director of the Ludwig Center at Dana-Farber Cancer Institute in Boston. Demetri is a leading expert in EHE.  He’s also concerned about quality of life, says Carr. “He listens to patients who want to explore alternative medicines because Western meds don’t always have the answers.’’

Her parents, Ken and Aura Carr, agree Demetri is the best fit. “All one can hope is that you’ve got great pharmaceutical companies and a great doctor. Kris has one of the foremost sarcoma experts in the world,’’ says Ken Carr.

The Carrs accompany their daughter on her checkups. In an emotional scene in the film, the threesome drive to Boston for the initial visit with Kris in the back seat, coiled in the fetal position, wondering in a voice-over how her parents feel to see their child live with cancer.

Kris is also grateful for her therapeutic partnership with Demetri.

“Dr. Demetri has supported all the things I’ve done. The benefit is that my cancer is slow-growing. The more aggressive the cancer, the more aggressive the treatment,’’ Carr explains.

There has been no radiation or chemo because she needs the good liver she has, Carr says, and a liver transplant is risky because cancer is in both lungs. Demetri explains in the documentary that he’d like to see the EHE make the first move, mainly because of Carr’s healthy lifestyle: She is now a vegan, and she has never smoked.

She and Fassett are excited about their future and plan to have children. It was easy to fall in love with her, Fassett says. He says he gave himself a good talking to as he fell deeper and deeper. “I didn’t go into it blindly. I knew exactly what I was getting into. I was falling in love with this person, so I didn’t have much say. I’m absolutely willing to accept the consequences of whatever is to come.’’

At the same time, he says: “You have to be part of a future. Should I bother buying new clothes for this winter? Am I’m going to be here? Keep on planning because it has such a powerful effect.’’

Carr pragmatically sees the cancer experience as a tool to transform oneself.

“We all have something about ourselves we wish we could change, or that’s difficult to cope with or process. What are you going to do about it? Live your best life with cancer. Let it be that catalyst.’’

“My whole life changed. You don’t expect to hear that you have cancer in your late 20s, early 30s, when you’re finally getting it together,’’ she said in a telephone interview from the couple’s Woodstock, N.Y., home. She and Fassett were taking a break away from their Brooklyn apartment, the base for their company, Red House Pictures Inc.

Months into her project, Carr called on Fassett, a New York film editor, producer and cinematographer, to help. They married last September.

Fassett fell for her while editing the film, he says. “I always thought she was gorgeous. … It was clear from watching the raw footage that she was also sexy taking this on.’’

Carr, meanwhile, wants the documentary to eliminate the stigma attached to living with cancer.

“When my peers deal with cancer, it comes at a time when you’re planning weddings, landing that dream job, hoping for babies, buying your first home,’’ she says. Last thing you think about when you have cancer is the privilege of planning a future, “yet the truth is, that’s the most important thing, your attitude.’’

Crazy Sexy Cancer Tips: A Girlfriend’s Guide.

 The book contains survival pointers from cancer patients.

Early scene, tight camera shot from a busy New York street. Tall, pretty, blue-eyed Kris Carr convincingly delivers her lines with kick-butt aplomb. "I'm not sick? ... I'm NOT sick! ... I am NOT sick!" 

Filmmaker with rare vascular cancer turns lens on herself.

Scenes From a Cancer Quest

In the late 1990s, veteran actor Richard Roundtree took a part playing a bare-knuckle fighter on TV’s 

, in which a scene required him to be shirtless. Blaming cold temperatures during the shooting, he persuaded the director to let him wear an undershirt.

In truth, he says, he didn’t want everyone to see his scar.

Roundtree, 64, had been diagnosed with breast cancer in 1993 after discovering a lump in his right breast. He was able to work as an actor almost immediately after treatment. But the man who was propelled to icon level for his 1970s portrayal of fearless superdetective Shaft regrets the method he used to stay employed.

He kept his cancer a secret for several years, and that was the wrong thing to do, he says now. “I was afraid I’d lose my job.’’

The actor-survivor has become a national spokesman for male breast cancer since he unexpectedly “came out of the closet’’ eight years ago. He has since partnered with the Susan G. Komen Foundation (now called Susan G. Komen for the Cure) and continues to speak out.

“Hindsight is a wonderful thing. I wish I had had the courage to be open immediately,’’ Roundtree said earlier this year from Los Angeles after completing work on the Hallmark Channel miniseries 

During his cancer treatment, he remembers mostly the fear of losing work if the truth were to come out. He would hide facts during the physical exams that actors must undergo. (He experienced only minor hair loss during treatment.)

Actor Richard Roundtree leaves his macho mark on a pink-ribbon world.

Jean Nash Johnson

Survivorship in Focus

A Mission of Empowerment

Seeing the Light

Surviving With A Plumb

A Mission of Empowerment

Scenes From a Cancer Quest

From Secrecy to Advocacy

Taking a Holiday From Cancer

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