"Cancer Survivor" Taking on New Meaning for Patients

Christine Bray, 36, of Northern Virginia, is happy to call herself a cancer survivor. Six years ago, at 30, she was diagnosed with ovarian cancer. Since then, she's been through myriad treatments including surgery, chemotherapy and radiation. She's seen her cancer apparently resolve only to spread beyond her ovaries to her liver and lymph nodes. At one point, her survival goal was just living to spend another day with her husband and their two little girls. ?

Bray's search eventually took her to the Eastern Regional Medical Center in Philadelphia, part of Cancer Treatment Centers of America, or CTCA, where she underwent more treatment including a new chemotherapy regimen. During treatment, she worked with a host of care providers, from anutrition specialist to a massage therapist, to help manage side effects.

Bray also had advanced genomic testing done, which identified a targeted therapy for the tumor's gene mutation. She was given a drug called everolimus, which she continues to take. Since then, the cancer has not recurred. Now Bray returns for checkups alone.

Longer Survival

When patients learn they have cancer, they should consider two important statistics, says Dr. Lisa Richardson?, director of the Division of Cancer Prevention and Control, part of the Centers for Disease Control and Prevention.
 
"The first one, actually, is that over two-thirds of people who are diagnosed with cancer today will live at least five years," Richardson says. "And as of January 2014, the American Cancer Society and the National Cancer Institute estimate there are about 14 million people who've been diagnosed with cancer who are still alive. It's not the death sentence that people used to think – and some people still think that. But it isn't what it used to be."

Change in Approach

In his 30-plus years as a physician, Dr. Maurie Markman, ? president of medicine and science for CTCA, has seen vast and positive changes in cancer survivorship. Early in his career, he says, there wasn't the luxury of looking down the road at long-term health issues that could arise from the cancer itself or the therapies to quash it. "One didn't think about that as much, when we're just focusing on getting patients through the treatment: 'Let's make sure the tumor's getting smaller. Let's push as hard as we can with as? high a dose as we can.'"

That philosophy has changed, Markman says: "But wait a minute. This patient has an increasingly high chance of living. And if five years from now that person's going to develop heart failure from the therapy, we've got to think differently. The focus? [is now] on not only the next six months or the next three months, and getting the patient through the treatment – but also, what is the impact on their life?"

Rehabilitation after surgery, for example, and limb-sparing procedures for removing malignant bone tumors in the leg, say, ?are becoming increasingly relevant as more and more patients are going back to work and resuming their lives after cancer, Markman says. Fertility preservation is a big issue for younger patients, he adds, as they go on and want to build families.

Meaning of Survival

Survival has more than one meaning. A traditional definition, called disease-specific survival, refers to people being alive five years after their diagnosis. But cancer advocates now consider survivorship as part of a continuum – from the moment people learn they have cancer, throughout treatment and beyond.

The notion of a lifelong identity as a cancer survivor is not for everyone. You don't hear about "broken-leg survivors," after all. "There are those who strongly reject the words 'survivorship' and 'survivor,'" Markman says. "'I don't want to be considered a survivor. I just want to get on with my life.'"

Yet for others, the term "survivor" is a good thing," says Catherine Alfano, ?vice president of survivorship of the American Cancer Society. "It gives them hope. It makes them feel like they're part of something bigger."

Today, survivorship is not just a matter of identity but a growing realm of health care. It involves extra surveillance for secondary cancers, Alfano says. It's also a ?matter of monitoring for side effects of cancer treatments that unfortunately are toxic to body systems as well as tumors. ?Follow-up now means looking after peoples' mental and physical health, whether they're continuing to live with a manageable cancer or in absence of any signs of recurrence.

"The wonderful thing about people surviving longer and longer after cancer is that many, many people now are not going to die of their cancer," Alfano says. Unfortunately, however, that also means among women diagnosed with early-stage breast cancer, more will eventually die of heart disease, related to their treatment or other risk factors. ? ?

Certain types of chemotherapy and chest-wall radiation can affect the cardiovascular system and increase heart-disease risk, Alfano says. In addition, cancer and heart disease share some risk factors, she says, making it even more important for patients to maintain a healthy weight. Exercise and weight-loss programs may be part of comprehensive survivor care.

More Work to Be Done

For all the strides that have been made to treat survivors in a comprehensive fashion, ongoing medical care needs to increasingly focus? on lingering side effects of cancer survival and treatment, including persistent fatigue, chemo brain and mental health problems like depression, Alfano says. Physical concerns include bone changes that place people at risk for osteoporosis; or changes in the endocrine system that put people at risk for diabetes or worsen diabetes they already had.

It's important to create a better system of coordinated care for people who carry a cancer history, Alfano says, to link them to all the specialties they might need, including mental health services and physical, occupational and speech-language therapy. To address that, the American Cancer Society has worked with national clinical experts to develop survivorship care guidelines for specific types of cancer.

Follow-up in Adulthood

"Children with cancer have always had the more standardized follow-up," Richardson says. Adults need that too, she says, to keep from falling through the cracks once treatment is done. "One of the things we've been working on here at the CDC is survivorship plans that would be sent to the primary care doctor and given to the person with cancer so they can know what happened and what to do moving forward."

Richardson points to adult cancer survivorship programs, like that at Emory's Winship Cancer Institute in Atlanta, as a sign of progress in the movement to support patients and keep them as well as possible in their post-treatment lives.

Speaking of Cancer

Some cancer survivors prefer to keep health issues private, and that's their choice. But speaking out, at least to family members, can provide a real health benefit, Markman says, because of the hereditary and genetic component to cancer. "We actually can do something about it," he says. "Breast cancer and ovarian cancers are wonderful examples of that."

Genetic testing, for instance, to identify whether someone carries the BRCA gene, which is tied to breast and ovarian cancer, can inform decisions on both treatment and preventive care for patients, their siblings and the family's next generation. ?

More Than a Statistic

Upon learning she had cancer, Bray says, "My first thought, obviously, was 'I'm going to die.'" Six years later, she's able to say, "I'm feeling wonderful. I've not felt this good since before I was diagnosed."

The only difference, she says, is that her mind is not quite as sharp as it was – although her speech sounds crisp and confident. "But hey, that's a very small price to pay," she says. "I can do everything I did before." Foremost, she says, is being with her daughters. "They are just growing up so fast," she says. "I'm so privileged to be with them and play with them."

Bray's advice to others diagnosed with cancer is a lesson she says she learned the hard way, as she sought opinions from across the country. "You're not a statistic," she says. "And I think, looking back, that I hoped not to be a statistic. I'm not a statistic; I am a person. Every person is different; every person's journey is different."

 

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