When Ellen Currotto was diagnosed with breast cancer, when part of her breast was removed, when she endured weeks of chemotherapy and lost her hair, when she underwent radiation, all of these months she focused on just one thing: Being done.
They told her she'd get through it, but they didn't tell the retired executive assistant from Granite that after it was over she would still feel so profoundly tired that she couldn't even make it home from a short walk.
As women live longer after breast cancer, the health care profession in recent years has begun to validate the concerns of Currotto and the thousands like her who survive the disease but struggle with the realities of the so-called "new normal."
Fatigue is just one typical complaint among the ever-growing ranks of breast cancer survivors. Commonly, there's also depression to contend with, chemo-provoked memory loss, fears of recurrence. Physically, survivors often wrestle with bone loss, weight gain, premature menopause, cardiac issues and joint pain.
"I don't think it ever really is done," says Currotto, who finished treatment three years ago. "Survivorship is still a challenge."
The American Cancer Society counts more breast cancer survivors in the country than ever before -- even as increasing numbers of women and men are being diagnosed. The organization says breast cancer death rates have been falling about 2 percent a year for the past 20 years.
With so many survivors with so much unfinished business, hospitals are creating support groups, women are signing up for classes and seminars, and even doctors and nurses are learning how to better handle these patients' long-term needs.
"What we hear most often from our survivors is, 'How can I get my life back?' " says Stacey Stephens, a clinical social worker with the Baltimore City Cancer Program's Living and Loving Life survivors' clinic. "It can be very different."
Currotto found out about Mercy Hospital's Be Well Stay Healthy program, launched to study and attempt to help survivors' fatigue issues.
Director Susan E. Appling tries to get women feeling more like themselves with everything from relaxation techniques, yoga, physical therapy and acupuncture to nutrition advice and information on the importance of screenings.
With a program that is part support group, part classroom experience, Appling wants to give survivors the tools to start really feeling better. "We've been doing this since 2005 and we haven't had a year that shows people's fatigue doesn't improve dramatically."
Women still close to their diagnosis and those who've been cancer-free as long as 25 years are taking part in the Living and Loving Life program, with grandmothers, mothers, sisters and daughters in different points of their journey.
"We wanted to provide a safe, supportive environment for any survivor to be able to come and talk openly," Stephens says. "At the end of treatment, your body kind of catches up with you and you've got a boatload of emotions and spiritual issues and educational needs."
A lot of it is about sadness and loss. The inability to look at yourself in the mirror. The frustration with having to take pills for years after treatment. The fear that when you finally stop taking those pills that your body will be vulnerable again.
About 30 women meet once a month at the University of Maryland Medical Center and hash out these concerns.
Lillie Shockney, director of the Johns Hopkins Avon Foundation Breast Center and a two-time survivor herself, knows that patients who've been buffeted by support throughout their treatment don't want to feel dropped by their doctors, like "the umbilical cord has been cut," once treatment concludes.
But, she also knows there's a nationwide shortage of oncology specialists, and the shortage is expected to become more severe in coming years. With an ever-growing roster of new patients, these doctors simply don't have the time for survivors five, 10 or 15 years past treatment.
She's working to develop protocols to help doctors figure out the best time to ease survivors out of those regular doctor visits. And she's leading seminars for primary care physicians so they're better equipped to understand the needs of survivors.
When it comes to supervising the health of a breast cancer survivor, a primary care physician would have to be well-versed with the array of lifelong issues they endure. The early menopause, joint pain and bone loss. The "chemo brain" that causes confusion in even the sharpest of patients.
"If you have a breast cancer survivor seeing a primary care doc who's accustomed to oncologists, she'll have a natural temptation to say, 'I want a bone scan or a breast MRI or blood work for tumor markers,' that they don't need," Shockney says. "The tendency is for the survivor to think anything that happens to me for the rest of my life is related to that breast cancer that happened to me a long time ago."
Currotto now works part-time for Be Well Stay Healthy at Mercy. She'll tell you she's made considerable progress with her internal demons thanks to things she learned at the program. She now meditates and practices yoga, exercises more regularly and limits beef to once a week.
"There is still some of the fatigue, and when I have those days, I understand them," she says, adding that she still struggled when one of her sisters was recently diagnosed with breast cancer. And even more when she discovered another small lump on herself.
Even though doctors are telling her it's nothing, she can't help but worry.
"It's always there," she says. "In the back of your mind."
Each spring and fall, the Hopkins Breast Center takes survivors on a retreat, to the bucolic Bon Secours Spiritual Center in Marriottsville. A climactic moment of the two-day overnight is when the survivors add to the tree of life and hope, a fabric creation that Shockney's mother made.
The survivors each get a leaf and write about how they beat the disease. They read them aloud to each other and then Shockney collects them to give, one by one, to newly diagnosed patients.
"You are surrounded by women who've worn your bra and are now on the other side to support you," she says. "It's very empowering."
Copyright (c) 2009, The Baltimore Sun
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