After Mesothelioma: How My Village Helped Save My Life

Heather von St. James' story:

After the birth of my daughter Lily on August 4, 2005, I came to realize the meaning of the saying, “it takes a village.” Our village consisted of my parents, my in-laws and a multitude of friends. I had experienced a pretty easy pregnancy and after the birth everything was going well. Unfortunately, things were not going to stay that way.


A month after returning to work, I began feeling tired and out of breath. It would have been easy just to chalk it up to having a newborn, but I felt something was wrong. I went to my doctor who ran several tests on me before finding out the reason for my symptoms. It turns out I had malignant pleural mesothelioma, which is a cancer that affects the lining of the lung. Apparently it was caused by unknowing asbestos exposure as a child.

I was told that if I didn’t undergo any treatment I had about fifteen months left to live. My first worries were about Lily and how she and my husband would cope if I wasn’t around. These fears led me to choosing one of the most drastic mesothelioma treatment options available. On February 2, 2006, I had my left lung removed in a Boston hospital. It took 18 days of recovery in the hospital and then an additional two months recovery before my body was strong enough to begin chemotherapy, followed by radiation. Remember, through all of this I was still a first time mom with a new baby.

All of this would have been impossible if not for the village that supported us. It was interesting to see who was part of our village. People we thought we could count on disappeared and some we didn’t expect to help rose to the challenge.

During our stay in Boston, Lily stayed with my parents in South Dakota who went from being grandparents to being primary caregivers. Fortunately, they also had their own village supporting them. Girls that I babysat in my youth became babysitters for my girl while my parents went to work. Church members provided much needed love and support. Meanwhile in Boston, we met new friends who were going through the same experience were and we felt their love and support for us.

It was hard to be away from Lily as she was experiencing childhood firsts.  All I had was pictures my mom sent.  My husband printed grainy black and white copies of these milestones off a community hospital printer. Through all this, I keep the thought forefront in my mind that my daughter was the reason I was away from her and fighting for my life.

My message to everyone else is to embrace whatever challenges life gives you. Even with all I went through, I am thankful for what I experienced.  My favorite quote is, “Life is a banquet and most poor suckers are starving to death.” Embrace your life for all it is worth.

Thanks to Heather for sharing her story.  Read another story about a cancer survivor, and see Heather von St. James' blog.

I was lucky: Lance Armstrong's pre-existing condition

Lance Armstrong's letter of October 2, 2009:
Today is LIVESTRONG Day. Thirteen years ago today, my doctor told me I had advanced testicular cancer. What most people don't know is that at the time, I didn't have health insurance. In the following weeks, I received letter after letter from the insurance company refusing to pay for my treatment. I was fighting for my life—but also for the coverage that I desperately needed.

The legislation currently being debated in Congress is not just words on a page—for many cancer survivors, it's a matter of life and death. Now, as this debate enters crunch time, I need your help to ensure that what happened to me doesn't happen to any other American.
No matter what side of the healthcare debate you're on, I believe we can all agree on two things:

No American should be denied health insurance coverage because of pre-existing conditions.
No American should lose their insurance due to changes in health or employment.
Will you sign the LIVESTRONG Action petition to make sure any legislation includes these two critically important reforms? We'll deliver these to Capitol Hill this month as the debate reaches its climax and make sure our voices are heard in the debate.

When I received my diagnosis, I was between cycling contracts. My new insurer used the diagnosis as a reason to deny coverage after the new contract was signed. Fortunately, one of my sponsors intervened. At their insistence, I was added to their insurance company and was able to continue my life-saving treatment. If my sponsor, a powerful company, had not gone to bat for me, I may not have made it.

I was lucky. We can't rely on luck to ensure coverage and treatment for the millions of Americans affected by cancer. Some cannot get coverage because they've already been diagnosed. Others get calls from their insurance companies saying they have been dropped. It happens all the time—and it's unacceptable.

Every year on LIVESTRONG Day, we come together to take action for a world without cancer. In the U.S., a critical step is to make sure cancer survivors can get and keep their health insurance.

It has been 13 years since my diagnosis, but in some ways, not much has changed. No person should have to worry about health insurance while battling cancer. That so many do is an outrage, and we must speak out.

-Lance and the LIVESTRONG Action Team

Advice: Please sign the petition and forward it along to your friends and family.

Read another Lance Armstrong story. Thanks to Hari Khalsa for forwarding the email.

I've got the upper hand: The Cure and treatment for cancer

Michelle Grant-Epstein is a 52-year-old mother of three in Framingham, Massachusetts. Advanced colon cancer, diagnosed in 2005, had spread to an ovary, requiring extensive surgery and chemotherapy. Here's her story:

When I was first diagnosed, the doctors said my disease was treatable, but we just don't have a cure now. It was hard to hear.

I'm co-habiting with my cancer, and as long as I've got the upper hand, that’s OK. I'm a fully functional adult [exercising at home, spending time with family and friends, and working part-time at a local library].

Do I wish for a cure? Absolutely! But I know that it's complicated and each cancer is different. For now, I'm grateful for the drugs that are controlling my cancer, and I hope they're still working.

Advice: Live as fully as you can every day.

Read a thoughtful journalist's story about his life after prostate cancer.

Thanks to Michelle, whose story appeared in the Fall/Winter 2008 issue of Dana-Farber’s newsletter, Paths of Progress. This is an excerpt from the article about Michelle and two other cancer survivors who are patients of Dr. Robert Mayer.

From the other side of the stethoscope: Dr. Wendy Harpham

Wendy Harpham is a doctor of internal medicine, best-selling author, long-term cancer survivor and mother of three. Throughout her career, she has pursued her mission: "Helping others through the synergy of science and caring."

Born, raised and educated in New York, she moved to Texas in 1979 to complete her post-graduate training in internal medicine. In 1983, she opened a solo practice at Presbyterian Hospital of Dallas, where she combined the best of modern technology with old-fashioned caring. Based on her belief that well-informed patients do better and feel better, she developed teaching tools to educate her patients about their illnesses and treatments.

Dr. Harpham told her patients she'd care for them until she retired on her 80th birthday. But her dream was shattered in 1990 by her diagnosis of non-Hodgkins lymphoma. She was only 36 years old. Dr. Harpham has been in and out of treatment ever since.

With the same determination that marked her work as a physician, she has overcome the many challenges of life as a cancer patient. She has learned how to find hope when treatments aren't going well. How to make difficult treatment decisions. How to calm fear of recurrence. How to deal with chronic post-cancer fatigue. And how to balance hope and acceptance.

When ongoing illness forced Dr. Harpham to stop practicing medicine and redefine her career, she turned to writing as a way to continue to educate, comfort and inspire patients. From her useful perspective as physician-patient, she began sharing her hard-won insights and tips for getting good care and living as fully as possible.
With the publication of her first book in 1992, she coined the term "Healthy Survivor" and presented her three step approach to "Healthy Survivorship": (1) Obtain sound knowledge, (2) Find and nourish hope, and (3) Act effectively.

Her later books also made significant contributions to survivorship by discussing the notions of a "new normal" and "post-cancer fatigue," as well as offering the practical "Harpham Decision Tool" to help patients make wise treatment decisions. All Dr. Harpham's books blend scientific evidence-based information with practical philosophy.
In addition to her books and articles for patients, Dr. Harpham writes for a professional publication, Oncology Times. Her popular column—View From the Other Side of the Stethoscope—addresses common yet rarely discussed patient dilemmas and professional challenges in the care of cancer patients.

Dr. Harpham's lymphoma is in remission, but limited stamina prevents her from returning to clinical medicine at this time. So she continues to devote her energy to helping survivors through her speaking, writing (books, articles and blog) and activities as a patient advocate (member of steering committees, oversight boards and think tanks; interviewee on national shows such as The Today Show and The Oprah Winfrey Show; captain of Wendy's Eagles).

Advice: Look for a doctor who has seen the view from the other side of the stethoscope. And read Dr. Harpham’s new book, “Only 10 Seconds to Care: Help and Hope for Busy Clinicians.”

Read a story about another physician patient. Thanks to Dr. Harpham, whose biography is reprinted from her blog, WendyHarpham.com.

A heaven of hell: The focused life

Winifred Gallagher's story:
Attention is selection: It's either this or it’s that.

During my cancer treatment several years ago, I managed to remain relatively cheerful by keeping in mind William James' comment, "My experience is what I agree to attend to." And this line from Milton: "The mind is its own place, and in itself can make a heaven of hell, a hell of heaven."

People don't understand that attention is a finite resource, like money. Do you want to invest your cognitive cash on endless Twittering or Net surfing or couch potatoing? You're constantly making choices, and your choices determine your experience, just as William James said.

You can lead a miserable life by obsessing on problems. You can drive yourself crazy trying to multitask and answer every email instantly.

When I woke up in the morning [several years ago], I'd ask myself, Do you want to lie here paying attention to the very good chance you'll die and leave your children motherless, or do you want to get up and wash your face and pay attention to your work and your family and your friends? Hell or heaven – it's your choice.


Winifred's book, Rapt, is a guide to the science of paying attention. This post was synthesized from excerpts of her book, as reported by John Tierney in today's New York Times.

Read another story about the surprising effects of removing distractions.

Thanks to Winifred Gallagher, and John Tierney for the source article.

The calming presence in the middle of a storm: A breast cancer patient navigator

Chris Ross is a 52 year old tutor from St. Andrews, New Brunswick, Canada who found a lump in her breast; she then had a biopsy that confirmed cancer. "I remember my first meeting with Wendy [Cyr]," says Ross. "My family physician had referred me to the breast clinic at St. Joseph's Hospital and I met with Wendy and my surgeon. There was a lot of information to take in, but Wendy had prepared a complete package explaining everything I was about to go through. I knew immediately that she was going to help me get through things; that she would be a terrific support. She has a way about her, and I just knew."

"Wendy has literally been there for me every single time I've reached out to her," says Chris. "And there was a lot of reaching out! Wendy really personalizes her approach. She helped lessen my worries and understand what to expect. I think she has a tough job – but she just knows how to interact with people, how to reach people."

Wendy can connect newly diagnosed breast cancer patients with a variety of people and resources they might need. "Dealing with a breast cancer diagnosis is complex,” she explains. "Every patient is different; some need financial assistance, some need couples counselling, others have transportation issues or need prosthetics or wigs. There are so many things, outside of their treatment, that can present as they navigate through treatment and recovery. I try to act as a consistent presence. I want our patients to know that if they call me, I will be there to assist them in whatever way I can, and I will arrange contact with the appropriate people."

Chris has completed her treatments and is cancer-free, but she is still in regular contact with Wendy. "I just love knowing that she’s there. Not a day goes by when I don't wake up and think about cancer. But Wendy keeps a close eye on me; if I call her she's right there for me to do whatever she can."

Advice to women with breast cancer: Find a navigator like Wendy.

Read another patient navigator story.

Thanks to Erin Barnes of Atlantic Health Sciences Corporation for the source story in the December issue of Hospital News.

They didn't mention it at all: Jon Lester, cancer survivor

The second game of the World Series is on as I write this, and the Red Sox aren't in it. Jon Lester pitched very well in game seven, but was out-duelled by Tampa Bay’s pitchers.

The announcers talked a lot during the game about the power and mix of Jon's pitches. They didn't mention at all that he was a cancer survivor.

Early in the season in Jon's first few victories on the baseball diamond, the headlines and the stories focused on the marvel that Jon could have returned, after cancer, to the top of his game. Now, it is a mark of how far he has come in his recovery that they don't mention it at all.

Advice: Understand that your cancer survivor friends may prefer not to talk about their cancer, that they don't want to be defined by it.

Read another story about Jon Lester.

It’s almost unfair to my loved ones: A brain tumor support group

Jeffrey Schanz of Washington, DC is an 11-year survivor of a glioblastoma. After treatment, he was able to return to his high-pressure job with the U.S. Department of Justice as director of the Office of Policy and Planning within the Audit Division. He recently accepted a new job as inspector general of the Legal Services Corporation, which provides legal assistance to low-income people.

Jeffrey, age 56, runs a support group at the George Washington Cancer Institute in Washington, DC. Support group members share nutrition and exercise tips, information about alternative therapies, and humor.

Attending a support group helps him deal with the ups and downs of his recovery. Though his thinking is about the same as it was before the brain tumor, “not every day is a good day….There have been cases where I’ve had to be more deductive to figure out what was going on instead of just snapping my fingers and going, ‘Oh, yeah, I understand that...' In the brain-tumor world we call it a ‘new normal’ because you’re never going to be the same person," he says.

He understands the need for camaraderie. “It’s almost unfair to my loved ones,” he says, “but I’m more comfortable with brain-tumor survivors because we all know what we’ve gone through. It’s still hard to articulate how hard you have to fight.”

Advice to people with a brain tumor: Find a support group to participate in.

Read another brain tumor story.

Thanks to Stephanie Cajigal for the source story in the September/October issue of Neurology Now.

A once-in-a-lifetime experience: Deeper life after cancer treatment for James Levine

James Levine, the Metropolitan Opera and Boston Symphony Orchestra maestro, said on Friday that his recent brush with cancer brought a glimpse of mortality that will inevitably color his work.

"It's a once-in-a-lifetime experience to have your doctor say, 'You have cancer,'" he said. A kidney with a malignant growth was removed on July 15. "It makes one feel…snatched from the jaws. "

He is the music director of both the Met and the Boston Symphony and one of the eminent opera conductors of the age.

He said his surgery brought another layer of meaning to the Verdi Requiem that he conducted at the Met on Thursday. "It had a dimension of significance, richness – the piece and the whole experience – which was clearly related to this one-of-a-kind experience I just had. It was without a doubt a more significant and deep-feeling experience to prepare it now than it was before."

But while "this business about mortality" made everything feel more significant, he did not feel more driven to accomplish new tasks.

"I realize that if I had three lifetimes I could never do everything. Therefore, I feel very grateful for what I've been able to do."

James Levine's Advice: "I must make sure that I bring to bear whatever fresh insights and richness come from that experience."

Read another story on how a famous person has been living well after a cancer diagnosis.

Thanks to Daniel Wakin for the source story in yesterday's New York Times.

So I might as well do it: Pan-Mass Challenge

Rebecca Hopkins, now a junior at Salve Regina University in Newport, Rhode Island, has survived a brain tumor, surgery, chemotherapy and radiation. She will be one of 5,000 bike riders next week in the Pan-Mass Challenge, the annual 192-mile bike ride to raise money for the Dana-Farber Cancer Institute.

She will ride in honor of her doctor, Samuel Blackman, who treated her when she was a teenager.

"To be able to help people and give them a better life, that's great," she said. "It's something I can do, so I might as well do it."

She was first diagnosed with cancer at age 11. Part of her brain tumor was removed, but began to regrow in a few years. After radiation, she is now virtually symptom-free.

Dr. Blackman says, "When you save a pediatric patient, you don't just save a life, you save a future. Rebecca and her fight are proof positive of that. This is a person who I know is going to make a difference in this world."

"We have the cachet of being the Tour de France of charity events," said Barry Starr, the founder of the fund-raising event.


Advice to cancer survivors: Keep on truckin’. And bikin’.

Read about another Tour de France cyclist and cancer survivor.

Thanks to Adrian Walker for the source article in today’s Boston Globe.

Blind-sided by my reaction: The role of attitude in surviving cancer

Richard Haimowitz, 62, a lawyer in Queens, New York who was found to have pancreatic cancer in January 2007, thought of himself as a warrior, fighting with all available ammunition.

"The day of my last treatment, people congratulated me, but I felt blind-sided by my reaction," he said. "I thought, 'Oh my God, I have nothing left to fight with,' and I felt angry that there was nothing left for me to do." Statistics to the contrary, he has had two clean scans, is back at work and takes spinning classes. As he soldiered through treatment, he did not fear death, even though he did not want to die.

Many studies published in oncology and mental health journals have looked at whether attitude is a factor in survival or recurrence rates, a core belief in many cultures and faiths. Some studies say Yes; others say No. They all have their critics.

Advice to friends and families of cancer patients: Try to empathize with them regardless of their mix of feelings.

Read another story about the role of attitude in recovering from cancer.

Thanks to Jan Hoffman for the source article in the June 1 issue of the NY Times.

She was well enough to start making plans again: A cancer survivor and entrepreneur

Ms. Banu Ozden is a computer scientist whose cancer was diagnosed in 2001. She said from the time she started dealing with the disease, she wanted to design a system that would make it easier for patients to keep track of their medical costs and also help them find errors in billing and reimbursement records.

In 2005, when teaching computer science at the University of Southern California, she was told that she again had cancer and that this time the disease had spread.

She took a leave of absence from her job and moved to New York so she could be treated at Memorial Sloan-Kettering Cancer Center. Within a month of her diagnosis, she was feeling well enough to start making plans again.

Once again in the morass of medical bills, she knew she wanted to proceed with her company. She started Smart Medical Consumer with her own funds and investments from friends and family.

Advice: See if you can help those struggling with a disease you have learned how to face, as Banu is doing.

Read one of our cancer survivor entrepreneur stories, or read more from the NY Times article on October 25 by Marci Alboher.

My illness was starkly revealing: Cancer survivor Lance Armstrong

Lance's realization:

My illness was humbling and starkly revealing, and it forced me to survey my life with an unforgiving eye. There are some shameful episodes in it: instances of meanness, unfinished tasks, weaknesses, and regrets. I had to ask myself, "If I live who is it that I intend to be?" I found that I had a lot of growing up to do as a man.

I won't kid you. There are two Lance Armstrongs, pre-cancer, and post. I returned a different person, literally. In a way, the old me did die, and I was given a second life. Even my body is different, because during the chemotherapy I lost all of the muscle I had ever built up, and when I recovered, it didn't come back in the same way.

Cancer was the best thing that ever happened to me. I don't know why I got the illness, but it did wonders for me, and I wouldn't want to walk away from it. Why would I want to change, even for a day, the most important and shaping event in my life?

Odd as it sounds, I would rather have the title of cancer survivor than winner of the Tour [de France], because of what it has done for me as a human being, a man, a husband, a son, and a father.

Read another of Lance’s stories from his memoir, It’s Not about the Bike.

You have to believe, and you have to fight: Cancer survivor Lance Armstrong on courage

When I was 25, I got testicular cancer and nearly died. I was given less than a 40% change of surviving, and frankly, some of my doctors were just being kind when they gave me those odds.

Children [with cancer] have the ability to ignore odds and percentages. Maybe we can learn from them. What other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.

After I was well again, I asked Dr. Nichols what my chances really were. "You were in bad shape," he said. I was one of the worst cases he had seen. I asked, "How bad was I? Worst 50%?" He shook his head. "Worst 20%?" He shook his head again. "Worst 10?" He still shook his head. When I got to 3%, he started nodding.

Lance's Advice: Anything's possible. You can be told you have a 90% chance or a 50% chance or a 1% chance, but you have to believe, and you have to fight. By fight I mean arm yourself with all the available information, get second opinions, third opinions, and fourth opinions. Understand what has invaded your body, and what the possible cures are. It’s a fact of cancer that the more informed and empowered patient has a better chance of long-term survival.

People live, and in the most remarkable ways: Lance Armstrong, cancer survivor

Lance Armstrong on heart:

People die. But there is another truth, too. People live, and in the most remarkable ways. When I was sick, I saw more beauty and triumph and truth in a single day that I ever did in a bike race – but they were human moments, not miraculous ones. I met a guy in a fraying sweatsuit who turned out to be a brilliant surgeon [Dr. Scott Shapiro]. I became friends with a harassed and overscheduled nurse named LaTrice [Haney], who gave me such care that it could only be the result of the deepest sympathetic affinity. I saw children with no eyelashes or eyebrows, their hair burned away by chemo, who fought with the hearts of [five-time winner of the Tour de France Miguel] Indurain.

Advice: Read Lance Armstrong’s book, It’s Not about the Bike: My Journey Back to Life.

Read another athlete cancer survivor story.

She can read her own MRI: Six-time cancer survivor

Lois Ferrarra beat cancer. Six times. In a span of two decades, doctors diagnosed Hodgkin's disease, then lung, thyroid, vulvar, breast and skin cancers.

Mrs. Ferrara has endured more than a dozen surgeries and countless medical treatments. And though none of the cancers stemmed from another, she has emerged each time cancer-free.

"Hello, I'm still here," she said at a recent gathering to celebrate her 20th year of survival. "It's great to be here. Heck, it's great to be anywhere."

Mrs. Ferrara's doctors have marveled at her uncanny ability to repeatedly fight off – and laugh off – the diseases.

Mrs. Ferrara, 49, is training for the Breast Cancer 3-Day Walk this fall. She's also using her experiences to counsel those who have been diagnosed with cancer or are recovering, walking them through the process of choosing doctors and procedures.

Friends and doctors say it's her fierce determination that attracts fellow survivors to Mrs. Ferrara. That, and her way with encouraging words.

"No one is going to fight your cancer like you will," she said. "I often wonder if that is why I am still here, to equip others for the battle."

At 29, Mrs. Ferrara learned she had Hodgkin's disease, a lymphatic cancer. She remained cancer-free for 11 years, but then developed the other cancers.

All of the cancers were caught in the early stages, but three almost went undiagnosed. During a routine gynecological exam her physician felt a lump on her throat. On a hunch, she went for further testing.

"My inner voice is routine," said Mrs. Ferrara, a Richardson, Texas resident. "I'm not sure you can teach someone to hear it, so you have to be thorough."

Mrs. Ferrara's initial biopsy was not diagnosable. She opted for surgery to remove it, losing part of her thyroid. While on the operating table, her surgeon found a baseball-size tumor on her esophagus.

Dr. Dan Meyer, a cardiothoracic surgeon at UT Southwestern Medical Center, believes there is something in Mrs. Ferrara's genetic makeup that makes her susceptible to tumors. But he also believes her attitude is a major factor in her ability to survive. Dr. Meyer remembered a time when Mrs. Ferrara came in for an office visit. She commented on how another patient was having a bad day and how she felt for that person.

"This is Lois, a young woman a day away from a mastectomy, never spending time reflecting negatively on her own existence but just focusing on the positives in life and trying to help others choose this vision," he said.

"She is unique in this way, and it must have an impact on her ability to fight against these multiple different cancers."

Mrs. Ferrara jokes that she's become a "professional patient" who carries a document explaining all of her procedures to attach to patient forms.

She said, "I write on the form, 'You don't have enough room. See attached.'"

Mrs. Ferrara's personality is reflected in everything from her crystal blue eyes and brightly-colored shirts to her tiny, vintage, one-door BMW.

She credits another component to her survival to her charismatic, fun-loving husband, Richard. Before her recent surgeries, he wrote messages on the bottom of her feet.
For her celebration, he wrote, "Life. I love you." The process never ceases to make them laugh out loud. During her last surgery in January, a hysterectomy, the message read, "Git'r Done!"

Dr. Elizabeth Jekot has been the recipient of one of these messages. Before becoming her doctor, Ms. Jekot was a friend of Mrs. Ferrara's. The two met through a literacy board.
She started seeing Dr. Jekot, who founded a breast imaging center in Richardson, in September after her second breast cancer diagnosis. She too is a breast cancer survivor. And she too is inspired by Mrs. Ferrara.

"Talk about talking to the most educated patient," Dr. Jekot said. "She could read her own MRI."

Mrs. Ferrara had never even had a stitch until her first surgery. She never suffered a broken bone chasing her older brothers and jumping off roofs as a child.

"Don't tell me I can't" is something she has been saying her entire life, she said.

She said there were times she almost let mortality sink in, but she didn't give it much thought. Instead, she got busy.

Today, Mrs. Ferrara is disease-free. She says she believes that cancer is her nemesis and that it could eventually take her life. Until then, she will keep fighting the fight for herself and others.

She sums her life up in singer Paul Anka's big band version of It's My Life. "I have cancer, but it's not my life," she said.

The four months of daily radiation treatments that cured her first cancer could be what has caused her other malignancies. Her immune system has been weakened by the treatments.
"The cure is killing me," she said. "But if I had not had ... [radiation], I wouldn't be here."
If not for her humor she might have given up, she said. A positive attitude is one key to survival, and sharing it gives her reason to live.

Friends and family diligently follow her daily blog on training for the Breast Cancer 3-Day Walk this fall. Most of the money raised will go to Susan B. Komen for the Cure.

Read another of our cancer survivor stories, or read Mikki Kirby’s source story.

All patients should know their options: Lymphoma drugs Bexxar and Zevalin

Linda Stephens had late-stage non-Hodgkins lymphoma, a cancer of the immune system that attacked her white blood cells, and a grim prognosis. Chemotherapy proved both difficult and ineffective. Less than a year after her diagnosis, the disease was spreading, and had involved every lymph node in her body. Now, at age 58, she has been cancer-free for seven years. Betsy de Parry (cancer-free for five years) and Dan Wheeler (cancer-free for three years) have similar stories. All had received Bexxar or Zevalin, which are costly, rarely used drugs in a new class, called radioimmunotherapies.

Clinical trials to show whether the drugs extend patients’ survival rates are nearing completion. Early studies showed the drugs have significant advantages over Rituxan, the mainstay drug for these patients. When it reviewed the clinical trials for Zevalin in 2001, the FDA found that "as compared with the Rituxan therapy, Zevalin was associated with a superior overall response rate."

Linda, Dan and Betsy are among the lucky few who receive Bexxar or Zevalin: only one tenth of the patients who would be suitable candidates for these drugs actually receive them.

Financial incentives discourage their use. Infusions of chemotherapy, Rituxan, and other drugs form the primary source of income for most oncologists. But Medicare and private insurers do not pay the oncologists for prescribing Bexxar and Zevalin, since these drugs must be administered in hospitals.

Also, most oncologists outside academic hospitals treat many different cancers, and may not be familiar with these drugs, which are used specifically for certain kinds of lymphoma.

Betsy de Parry says, "It’s not that I believe that radioimmunotherapy is right for everybody. I just think that all patients should know their options."

Non-Hodgkins lymphoma is the fifth most common cancer in the U.S., with 60,000 new patients diagnosed each year. About 20,000 people could be suitable candidates for Bexxar and Zevalin.

Advice for lymphoma patients: Learn more from the Lymphoma Research Foundation. And keep an eye out for news of the completion of the clinical trials.

Read one of our lymphoma survivor stories, or read more from today’s New York Times article by Alex Berenson.

Eventually a national template: A cancer survivor’s philanthropy

Robert Sillerman, a media entrepreneur, was treated at Sloan-Kettering six years ago for tongue cancer. He received chemotherapy and radiation, and later began to suffer pain and muscle spasms in his shoulders and back, as well as increasing weakness in his left arm.

"I was two years out from my cure before I was able to find the right protocol and treatment," he says. "Our hope is to eliminate that and provide access to rehabilitation right away, initially in the New York metropolitan area and eventually to make that a template nationally." He has made a sizeable donation to Sloan-Kettering for an off-campus outpatient center devoted to physical rehabilitation for cancer survivors.

Today, he has reversed the damage from chemotherapy and radiation with a little medication and a lot of physical therapy. He exercises six days a week with weights, bands and manual resistance, partly with a personal physical therapist, whom he puts up in a Manhattan townhouse near his own.

There are now ten million cancer survivors! A medical specialty called survivorship has arisen. At several major hospitals in the U.S., the Lance Armstrong Foundation finances survivor programs to improve life after cancer.

Advice to cancer survivors: Consider physical therapy to help you fully recover.

Read another of our cancer survivor stories, or read Leslie Berger’s source story in yesterday’s New York Times, “Cancer Care Seeks to Take Patients beyond Survival.”

I can make this devil work for me: A doctor lives with bladder cancer

Dr. Richard Waltman’s story about his own cancer:

Yes, the tumor was there, and yes, I needed a second trip to the O.R., but the procedures went well, the catheter eventually came out, and the BCG treatments [which use something originally developed as a tuberculosis vaccine] have been relatively easy. Most of the time I feel so good that I don't think about my illness. Then it reminds me, sometimes loudly, "This is your bladder cancer speaking; I'm still here."

"No, you're gone," I answer. "The last cystoscopy looked great, and the BCG treatments will keep you away."

"Okay for now," it responds, "but I'll be back." And, you know, it's probably right.

In tournament play, professional soccer features something called "extra time"—an additional 30 minutes in the event of a tie after regulation time. It's the game's way of saying, "We'll give you a little more time. Take advantage of it."

In a way, this is my "extra time," and I have every intention of using it to do what I love most: being with my wife and sons and taking care of my patients. Only I plan to do these things better and enjoy them more.

I've been in practice for 23 years, and my experience as a cancer patient has taught me a few things, and confirmed things I suspected all along.

I can make this devil work for me. I haven't made any formal announcement of my illness at work, but neither have I kept it a secret. I've even told a few patients. One woman, for example, was ready to stop chemotherapy for breast cancer. "What's the use?" she asked me. I told her of my malignancy and treatments. We do it, I told her, because there are people who don't want to lose us, and because we're not ready to lose them. We made a deal: We'd both continue treatment, and we'd both get better.

Advice to cancer patients: Find ways to “make this devil work for you.”

Read another of our cancer survivor stories, or read Dr. Waltman’s source story. Thank you, Helen Haskell.