Surviving cancer and lymphedema
April 19, 2007
Stories by STEPHANIE FOSNIGHT Staff Writer
Last week Health & Family examined some of the challenges facing cancer survivors, particularly those who have survived bone marrow/stem cell transplants as treatment for leukemia and lymphoma.
This week we focus on those who have beaten breast cancer.
Breast cancer survivors belong to a massive and growing group, thanks to early detection and strong funding for research.
"In the United States, there are about 10 million cancer survivors each year, and about a quarter of them are breast cancer survivors," said nurse Carole Martz, clinical coordinator of the LIFE cancer survivorship program at Evanston Northwestern Healthcare.
Still, those who have had breast cancer have a higher risk of recurrence than survivors of other types of cancer. A breast cancer survivor is also more likely than the general population to develop ovarian, uterine, colon, skin or opposite-breast cancer.
These patients also often experience side effects like fatigue, weight gain, sexual dysfunction and a painful swelling condition called lymphedema. And, like other cancer survivors, they face psychosocial concerns and health insurance complications.
The medical community is realizing that these patients still must be monitored even once they're cancer-free. New organizations like the LIFE program, which began last year with a focus on breast cancer survivors and is now including other cancer patients, offer tools to help survivors navigate life after cancer.
"Survivorship is a unique phase of cancer care," Martz said. "We're just getting the word out that these issues are pervasive."
A rocky transition
Deerfield resident Helen Hackett was diagnosed with breast cancer in March 2006, after a lump appeared on a routine mammogram. The find was a big surprise for the 48-year-old Hackett but she immediately entered treatment. Within five months she had finished the regimen and the cancer was gone, but Hackett recalled the abrupt change between being a cancer patient and a cancer survivor.
"Suddenly, there's no doctor watching you every minute," she said. "Every time you get an ache or a pain, you think, 'What is that?'"
Martz said many breast cancer patients who have graduated from treatment feel vulnerable and confused.
"They're getting intense care and then the doctor says they'll see them in six months," Martz said. "I see people who have been out two or three years and still have questions."
One tool Hackett received when she joined the LIFE program a few months later was a handout explaining which symptoms warranted calling the oncologist.
"To have it set forth in such a straightforward way was really helpful," she said.
For example, Martz counsels her patients to call the doctor if they've stopped getting their periods and then experience spotting.
"We might think her periods are coming back but it might be uterine cancer," she said. "Patients must be informed that these are the symptoms you have to report."
Breast cancer survivors must not only be carefully watched for cancer recurrences, weight gain and sexuality issues, but also be aware that they are more prone to osteoporosis, infertility and early menopause.
Swelling from lymphedema can appear after surgery or radiation, causing lymph fluid to accumulate in the arm of a breast cancer patient. Lymphedema affects up to 20 percent of breast cancer survivors.
Common complaints
Then there are the complaints that are harder to pin down, such as fatigue and cognitive inefficiencies often labeled chemo-brain.
"In general, fatigue is the most common complaint I hear from breast cancer patients," said naturopath Tim Birdsall, vice president of integrative medicine at Cancer Treatment Centers of America-Zion.
Antioch resident Janet Guhl is a breast cancer survivor and also also a surgical nurse at Cancer Treatment Cetners. Although Guhl, 68, has rebounded from her 1999 treatment, it took awhile.
"I felt crummy and tired for a long time," she said.
Hackett, a professional fitness instructor, also noticed the change in her stamina.
"I don't bounce back quite as quickly after I exercise," she said. "That resiliency is not there right now, but I'm working through it."
Birdsall said his breast cancer patients also talk a lot about chemo-brain, a condition suffered by many cancer patients who received high doses of chemotherapy and radiation.
"Do I believe chemo-brain exists?" Hackett asked. "Absolutely. Do I feel like I'm suffering from it? On a daily basis. I have trouble keeping track of things and my short-term memory is shot."
Though Hackett isn't able to recall as many details as before, she tries to keep her brain sharp by doing cognitive puzzles.
"I feel it does help me stay a little sharper and think a little faster," she said.
Getting informed
When Martz meets with a new survivor, she tells her it's time to think about the rest of her life.
"We want to make sure she has a physical every year to check for blood pressure problems, diabetes, weight gain," Martz said. "We talk about wellness in general."
Since Hackett is an exercise guru, she didn't have too many lifestyle changes to make after cancer, but Martz did inform her about the lymphedema risk, which made Hackett alter her workout routine.
"I still lift what a lot of people would consider a fair amount of weight, but I set myself a limit," she said. "I won't go above a certain number of pounds."
Handling stress
All of these concerns can put a heavy emotional burden on cancer survivors. Whether they've lived through breast cancer or another cancer, they're likely to experience Damocles Syndrome, the psychological fear of recurrence.
"Imagine you have an appointment with your physician and he's going to tell you whether or not your disease has come back, news that makes all the difference in the world," said psychologist Richard McQuellon, who counsels cancer survivors at Wake Forest University in North Carolina. "It's surprising how little people talk about this."
Guhl lost her husband to cancer three months before her own diagnosis but said that, despite the toll the disease has taken on her family, she has peace that she is in the right place now.
"Cancer was a difficult journey but it was worthwhile because of all I learned about God and his care and the love I received from my family and my church," Guhl said.
She's on the right track for coping with post-cancer stress, according to McQuellon.
"Being embedded in a loving community of family, faith and friends helps," he said. McQuellon also said there's new evidence showing the brain releases positive chemicals when patients talk about their fears and pressures.
"Talking helps. You're literally creating a new feeling," he said. "A sensation of discomfort can be altered by words."
Now the nurse Guhl gets her cancer patients talking about the disease by sharing her own experience. A woman of strong faith, she urges those who feel comfortable to pray that their faith might be strengthened.
The hardest moment for Hackett was having to tell her son, then 11, about her cancer. But she was surprised by the boy's calm reaction.
"He said, 'Did they catch this early? Then you're going to be OK,'" she said.
Hackett, who said her son learned about breast cancer through the Discovery Channel, then realized the next generation has a much more optimistic view of cancer.
"He had a totally different perspective than my parents, who were devastated, because in their generation cancer meant death," she said. "The fact that there are so many people surviving has changed what cancer means."
