President's Cancer Panel
Tamika Felder testifies before the President's Cancer Panel in Austin, Texas, last September. As a cancer survivor, she's hoping to raise awareness about the long-term impact of the disease.
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msnbc.com
updated 6/16/2004 2:59:03 PM ET 2004-06-16T18:59:03

Tamika Felder, 28, wants children someday. But she’ll never be able to carry and give birth to any of her own. Diagnosed with advanced cervical cancer almost four years ago, she had to undergo a hysterectomy along with chemotherapy and radiation treatments.

Doctors were able to shield one of her ovaries from radiation but neither could be protected from chemo, which has systemic effects. So while it might be possible for Felder to become a mom to her own biological child with the help of in vitro fertilization and a surrogate mother, it’s not known if she has any healthy eggs left.

She tried to raise money before undergoing treatment to have some of her eggs harvested and frozen but couldn’t come up with enough cash in time. Even if she had, egg freezing is far from a perfect science and may never have worked.

Felder, a television producer in Washington, is now cancer-free but she’s still very much living with the effects of cancer. She gets a harsh reminder of it, for instance, every time she goes on a date.

“Gosh,” she says, “when I meet a fella do I tell him right then that I can't have kids?”

She also has frequent doctor visits to make sure the cancer hasn’t recurred and to check her bones, which may weaken because her body was fast-forwarded into a menopausal state due to the treatments.

Not just that you live, but how
In many ways, the battle isn’t always over for cancer survivors once treatment has ended. Survivors -– often defined as anyone who’s been given a diagnosis of cancer -- can face a host of medical, psychological and social repercussions.

These issues, however, haven't received much attention until recently. In the past, cancer was often viewed as an automatic death sentence. But now that patients are living longer than ever, even for decades after treatment, there’s a push under way to find out exactly what challenges they face and what can be done to help them.

“What we hear from cancer patients is that it’s not just that you live, it’s how you live -- the quality of life is important,” says Dr. LaSalle D. Leffall Jr., a professor of surgery at Howard University in Washington and chair of the President’s Cancer Panel. At the annual meeting of the American Society of Clinical Oncology in New Orleans earlier this month, the panel released a new report detailing issues of cancer survivorship.

The latest facts and figuresThere are also other efforts to raise awareness of the subject. This week, a conference in Washington sponsored by the National Cancer Institute and the American Cancer Society is bringing together doctors, researchers and patients to talk about survivorship matters and directions for future study. In April, the Centers for Disease Control and Prevention and the Lance Armstrong Foundation released an "action plan" to help cancer survivors, including the creation of databases on cancer survivorship.

And the foundation, a nonprofit patient advocacy group named after cyclist Armstrong, a survivor of testicular cancer, is urging people to "Wear Yellow, Live Strong" today by donning yellow in support of cancer survivors.

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Not only is survivorship getting more attention simply because it has been largely overlooked in the past, it’s also expected to become a much more common issue in the future.

Today there are an estimated 10 million cancer survivors in the United States. But that number is expected to soar because more people are being successfully treated and the population is living longer. The risk of developing cancer increases with age.

“In the next decade to two decades the number of cancer survivors is going to double,” predicts Dr. Jerome Yates, national vice president of research at the American Cancer Society in Atlanta.

What now?
The emotional issues that cancer survivors face, such as depression and anxiety about the disease coming back, may be some of the most well-documented.

“You can’t go through this type of treatment without some psychological issues,” Yates says. “Sometimes it makes people stronger and sometimes it doesn’t.”

For some survivors, even an ordinary headache may set off fears that the cancer is back, says Dr. Robert Mayer, director of the Center for Gastrointestinal Oncology at the Dana-Farber Cancer Institute in Boston.

“The emotional impact of having had cancer is something that never goes away,” he says.

Doug Ulman, director of survivorship at the Lance Armstrong Foundation, says patients who’ve completed treatment often face a “what now situation.” How do they go about returning to school or work, maintaining relationships and simply living their lives after what they've been through?

As a three-time cancer survivor himself, twice with melanoma and once with a rare type of bone cancer known as chondrosarcoma, Ulman, 27, says it isn’t always easy. Though he has no lingering physical effects, he must see his doctors every three months for check-ups to make sure the cancer hasn’t recurred.

“My wife says that two weeks before my appointments I start to act a little differently at home,” he says.

For other survivors, there are physical repercussions as well as emotional ones. After Greg Ferris, 31, underwent a bone marrow transplant four years ago for chronic myelogenous leukemia, the cancer had been beaten back. But he had a new problem -- graft-versus-host disease. Though the bone marrow was donated by his sister, a close genetic match, his body still views it as a foreign invader.

Lance Armstrong Foundation
Greg Ferris thought he had defeated leukemia, until it came back last October.
“My sister’s immune system is now my immune system, and it attacks my body,” says Ferris, who lives in Houston.

To keep the graft-versus-host disease in check, he had to start on a daily regimen of immune-suppressing medications. And the use of those drugs requires a variety of other medications to fend off illnesses like pneumonia that could take advantage of his weakened immune system.

But at least Ferris was clear of cancer, or so he and his physicians thought. “I was never declared cured,” he says, noting that doctors often define a cure as cancer-free survival for at least five years. “But I was told they had taken care of the leukemia.”

Until last October, when the leukemia came back. This time, he’s able to take the new drug Gleevec, and so far he’s happy to report it’s working.

Not all cancer survivors will experience a relapse of course. But they will live the rest of their lives knowing it’s a possibility. “Living with that fear I think is something that we all face,” he says.

Dysfunction, discrimination
Just as Ferris must now grapple with both graft-versus-host disease and a cancer recurrence, many other survivors live with other long-term medical complications.

Some may have scars or other disfigurement from surgeries like those to remove breasts. Prostate cancer patients and others may struggle with sexual dysfunction and incontinence. And some survivors will have increased risks of heart disease or other types of cancer because of treatment side effects. Chemotherapy can affect the brain, leaving both kids and adults with learning and memory difficulties. And both men and women, like Felder, can face fertility issues.

Simply being labeled a cancer survivor can also spell trouble when it comes to employment and health insurance. Some people may even be reluctant to leave a job for fear they’ll lose the coverage that’s so crucial to their follow-up care. Others may face discrimination from coworkers who think they’re not up to the task of a heavy workload or a promotion.

Call for action
Because of all these issues -- and probably others that have yet to be recognized -- experts in the field are calling for increased research and other initiatives to help survivors.

In the new President's Cancer Panel report, titled "Living Beyond Cancer: Findings a New Balance," recommendations include giving all cancer patients upon discharge from treatment a detailed record of their care and a follow-up plan, and explaining to them about potential long-term complications and the availability of support groups.

The report also calls for increased tracking of cancer survivors to better understand the issues they face and for health insurance reform to ensure their medical needs are met.

Though Felder thinks highly of her doctors and is very grateful they saved her life, she wishes she'd received more counseling at diagnosis about the long-term fertility issues she'd face and the availability of groups like Fertile Hope that offer both emotional and financial support.

"We have to educate the physicians and clinics about these things," she says. "Sometimes, they get so caught up in saving our lives right then and now that they forget that you're a young single woman who one day wants to have a family."

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