Sara Szeglowski began her battle with Stage 2B breast cancer four years ago at age 38, when her son, Finn, was only a year old.
She endured a double mastectomy, chemotherapy and radiation, all within the protective reach of a breast care team in Rhode Island, where she lived and worked at the time.
When the team told her the heavy lifting was done – that she could start seeing them far less often for follow-up testing – she was terrified.
“During treatment it feels like you have some control day to day,” said Szeglowski, a Lake View native who moved back to Western New York afterward. “When you’re done, it’s time to get back to your life, but that is very hard to do because you are simply not the same.”
Szeglowski had nagging fears that her cancer might return. She could barely lift her left arm because all the lymph nodes underneath it were removed during surgery. “Chemo brain” clouded her thinking. New medications pushed her into early menopause and made it harder to sleep.
Still, she wanted to do more than survive. She wanted to thrive.
This is the common conundrum of an estimated 3.5 million American breast cancer survivors.
The five-year survival rate for women diagnosed with breast cancer at the localized stage is 99 percent. It is 89 percent for all women diagnosed, according to the American Cancer Society, and stands at 78 percent at 15 years – a percentage likely to rise in coming years because of improved early detection and advances in treatment.
Every breast cancer journey is different. Roughly 40,000 women in the U.S. continue to die from the disease each year. But the growing number of survivors in Western New York and beyond seek a greater variety of resources and strategies to lead the most fulfilling lives possible.
“It’s definitely a point in time where people should be able to make good changes and sustain them,” said Dr. Tracey O’Connor, a breast oncologist at Roswell Park Cancer Institute. “They need support. It’s not easy, especially for a lot of the young mothers I take care of. You’re still dealing with the burden of a lot of the cancer therapy and trying to get your life on track and going back to work, so making time can be difficult – but it’s very important.”
Roswell Park next year plans to open a Wellness and Survivorship Center that will include exercise programs, support groups and dietary counseling for all of its patients. Meanwhile, O’Connor and several other breast cancer specialists say the region is rich with resources that can help someone follow the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline.
Here’s a closer look at the guideline recommendations.
SHARE YOUR CONCERNS
“Your first step is concentrating,” said JoAnna Jacob, senior market manager for the American Cancer Society in Western New York. As you prepare for the last meeting before the follow-up phase, ask your breast care team any unanswered questions and lay the foundation of a post-treatment survivorship care plan. Your team should be able to point you to support groups and specialists who can help you with new or lingering challenges. The Windsong Breast Care Team, for instance, has breast care navigators who start the survivorship process after diagnosis and follow patients through treatment. The navigators can connect patients with physical therapists, nutritionists, counselors and others who specialize in helping those affected by breast cancer. The company also has biweekly Q&A sessions in its Williamsville office for new patients who want to ask questions of those and other specialists. Patients must register by calling 631-2500, Ext. 2115.
Also remember other health threats. “Women develop heart disease for the same reasons other people do, whether or not they have breast cancer,” O’Connor said, “so eating healthy, taking care of yourself, going to the physician, getting your cholesterol checked, your blood pressure managed, your other screenings, is all very important. Sometimes when you have breast cancer you think nothing else could happen to you – but it still can.”
ADDRESS BODY IMAGE
The guidelines encourage health care providers to assess for patient body image and appearance concerns, offer adaptive devices including breast prostheses and wigs, and talk about surgery or counseling when appropriate.
Carla Lynch, 60, of Youngstown, lost her all of her hair – including her eyebrows and eyelashes – as well as her fingernails during seven weeks of daily radiation and four rounds of chemotherapy that followed a lumpectomy in late 2011. She learned to readjust to life. “I don’t complain about housework anymore, I’m just glad I’m healthy enough to do it.” Her fingertips sometimes tingle from nerve damage her chemotherapy caused. She has taken some solace in those who have helped bolster her appearance in recent years. They include the dentist who helped preserve her healthy teeth and gums. The hairdresser who shaved Lynch’s head and donated her hair to Locks of Love and tended her curlier-than-normal hair when it grew back. And Sherry Hale, owner of Custom Beaute in West Amherst, who specializes in paramedical tattooing and other cosmetic improvements. Lynch’s eyebrows grew back, but not fully. In July, Hale tattooed a fuller set of eyebrows on Lynch and added extra pigmentation to her lips.
“The eyebrows are first and foremost on the list because it gives you that sense of being back,” Hale said. “People who do go through with it wait a long time. It takes time for them to be interested in going through a procedure after all that goes into reconstructive breast surgery. We do a lot of crying ... happy tears.”
“I hear a lot not just about the fear of recurrence and not just the physical worries and chemo brain, but also the real emotional effect breast cancer has,” said Liz Kahn, executive director of the Susan G. Komen Foundation of Western New York. “People’s relationships are affected years after. No matter what stage you’re in or how your recovery is going, it’s still going to be a trauma when someone tells you that you have cancer. Coming back from that takes a long time.”
It’s common to have some concerns as the active treatment phase ends, O’Connor added. “People need to talk about their distress or anxiety with their treatment team because there’s a lot of resources at Roswell and in the community for women who are adjusting to anxiety or depression or readjustment.” Counseling, support groups and a close circle of friends and loved ones all can be helpful when sorting through “the uncertainty about a possible recurrence and learning how to be positive with that,” she said. “I encourage people to get moving and focus on themselves and their lifestyle. Make healthy changes.”
“It is recommended that primary care clinicians should encourage the inclusion of caregivers, spouses, or partners in usual breast cancer survivorship care and support,” according to the guideline. Lynch’s husband, John, owner of a trucking brokerage business in Niagara County, scaled back his job while Lynch underwent her treatment. Szeglowski’s mother, Mary Szeglowski, traveled regularly to Rhode Island to help. Other loved ones, including Szeglowski’s husband, Doug Kutach, continue to play a major supportive role for both women.
Szeglowski, now 42, said she sometimes feels 15 years older, like when she experiences what’s commonly known as “chemo brain.” She described it as “a fuzziness and a sense of distraction. It’s almost like forgetfulness. You can’t pull things out of your brain the way you used to.”
In most cases, this is something that can be addressed with help from physicians or specialists.
GET IN A FITNESS GROOVE
“I encourage my patients to get a lot of regular exercise. I recommend walking,” O’Connor said. “That helps with energy levels and it helps maintain a healthy weight, which is critical to breast cancer survivors. And it helps decrease a lot of the aches and pains that people will experience as a consequence of some of the medicines that they take for many years after diagnosis.”
Those diagnosed with breast cancer should avoid inactivity and return to normal daily activities as soon as possible; exercise should involve 150 minutes of moderate or 75 minutes of vigorous aerobic exercise a week. Women treated with chemotherapy or hormone therapy also should emphasize strength training at least twice a week.
Yoga was the linchpin for Szeglowski. “I found that when I was doing yoga every day, or just practicing or exercising – running or going for a walk – that kept everything else together for me,” she said.
Szeglowski worked as a grant writer and public relations specialist for Rhode Island’s largest behavioral health center when she was diagnosed. She has been teaching yoga since moving to Hamburg about three years ago. She moved her studio, Shine Yoga, several weeks ago to the third floor of the Grange Community Kitchen building on Main Street. She offers 30-day transformation programs for everyone, including some she plans only for breast cancer survivors. “When you have the touchstone of the yoga classes,” she said, “it tends to put the nutrition and the sleep in line and the fear at bay, and it builds community, too.”
“There’s so much that can be done from a nutrition standpoint,” said Sarah Thompson DiPaolo, a registered dietitian, nutritionist and owner of WNY Nutrition (wnynutrition.com).
Eat a rainbow of colors, increase the variety in your diet and boost the amount of vegetables that contain important phytonutrients and antioxidants, DiPaolo said. Think more about what you’re eating. Exercise portion control. Read labels for whole foods and real ingredients, not hard-to-pronounce chemical additives, processed sugars or high-fructose corn syrup. Fill three quarters of your plate with vegetables, fruits, legumes and nuts. Eat 30 grams of fiber a day.
It’s best not to drink alcohol. “Nobody wants to hear that one,” DiPaolo said. If you do, have no more than three drinks a week.
Eat organic. If not, the Environmental Working Group has the Dirty Dozen and Clean 15. Those that tend to have more traces of pesticides include strawberries, apples, peaches, nectarines, grapes, celery, spinach, cherries, sweet bell peppers, cucumbers, tomatoes and kale/collard greens. The Clean 15 includes avocados, sweet corn, pineapples, cabbage, sweet peas (frozen), onions, asparagus, mangoes, papayas, kiwi, eggplant, honeydew melon, grapefruit, cantaloupe and cauliflower.
DiPaolo also recommends drinking filtered water, one to four cups a day of green tea, and ginger root.
“Nutrition, improved sleep and exercise are important for anybody but especially for cancer survivors because they create improvement and a sense of control over your life,” Szeglowski said. That’s important to her these days.
“I feel sometimes that you work with what you have and this is what I have,” she said. “I’ve changed my life here. I never thought 4½ years ago that this would be my life. In a way, so much has happened and so much has changed, and I don’t know that I’ll ever be free of that cancer experience. I’m not sure it’s a good thing to be. It is such a key part of what motivates me. I want to move on but I want to remember.”
Twitter: @BNrefresh, @ScottB. Scanlon