By Amanda Cuda
The whirlwind of treatments that followed Heidi Taylor’s breast cancer diagnosis — a mastectomy, chemotherapy, radiation — left her with limited motion in her arm. An activity as simple as reaching up and grabbing an item off a shelf became difficult and painful for the 36-year-old Trumbull resident.
Enter Vikki Winks, physical therapy supervisor for Bridgeport Hospital’s Ahlbin Rehabilitation Centers. Winks is one of 17 Bridgeport Hospital staff members participating in the hospital’s new STAR Cancer Survivorship Training and Rehab program. She meets with Taylor regularly to help alleviate her motion problems.
“The therapy is about getting Heidi back to her best quality of life,” Winks said.
The STAR program, which began a few months ago, is one of many initiatives statewide aimed at helping cancer survivors cope with the physical fallout of treatments like chemotherapy and radiation. The programs are designed to give recovering patients the emotional support they need to face life after cancer.
A variety of local facilities — including Danbury Hospital, Stamford Hospital and Greenwich Hospital — have launched their own efforts over the past few years. The push for these programs was stepped up earlier this year when a national accreditation agency began requiring cancer care organizations to address cancer survivorship and what patients face after treatment.
Many of the services offered by these programs, including Bridgeport’s STAR program, are covered by insurance. Others are free, paid for through donations to cancer programs at their respective hospitals.
Some of these programs are called “cancer rehab,” while most prefer the moniker “survivorship programs.” However they’re identified, most of the programs include a variety of services, such as diet, exercise and physical therapy designed — like Winks’ work with Taylor — to help patients restore as much of their pre-cancer quality of life as possible.
Lost in transition
According to the American Cancer Society, 13.7 million Americans with a history of cancer were alive as of Jan. 1. That’s up from 12 million in January 2008 and the number is projected to grow to almost 18 million by 2022. In Connecticut alone, there were 171,850 survivors as of this year.
In the past, survivors were more or less sent on their way after completing treatment. But experts agreed that with the ranks of cancer survivors growing all the time, more follow-up care is needed to address the physical, mental and emotional effects of treatment. It’s long been known that chemotherapy and other treatments, though lifesavers, can cause fatigue, nausea, chronic pain, anemia and a host of other problems.
Four years ago, Stamford Hospital started a program called “Transitions: Choices in Recovery,” which offers a variety of services to patients who have gone through treatment. Patients meet with an advance practice nurse to review a summary of their treatment and discuss recommendations for lifestyle changes, including diet and exercise. Patients also can meet with a support services counselor who will discuss any concerns patients may have about the next chapter in their lives.
The hospital also offers a number of programs and activities for cancer survivors, including massage, reiki and reflexology.
Danbury Hospital, Hartford Hospital, St. Vincent’s Medical Center in Bridgeport, Yale-New Haven Hospital and many others in the state have all either recently added survivorship programs or had such programs for a while.
Greenwich has offered some survivorship programs for many years, including the NEXT Step program, which allows breast cancer patients who received part or all of their treatments an opportunity to participate in three months of nutrition and exercise therapy. The hospital also recently added new post-cancer programs, such as specialized support groups for survivors of different types of cancer.
“Years ago, the prognosis and outcome of a cancer diagnosis was not good,” said Maria Marini, oncology program director for Greenwich Hospital “Now these patients are living a lot longer (and) you have to keep them on your radar.”
Many area hospitals have felt pressure in recent years to add or expand programs that address the post-treatment needs of cancer patients.
“In the past, organizations hadn’t necessarily ignored the aftermath of cancer treatment, but the focus was really on treating the cancer,” said Dr. Daniel McKellar, chairman-elect of the American College of Surgeons’ Commission on Cancer, which sets accreditation standards for cancer treatment programs.
In January, the Commission on Cancer implemented new standards that require cancer programs to provide patients with a survivorship care plan and a summary of their treatment. The standards require that the care plan should include the expected long-term and short-term effects of cancer therapy. Hospitals have three years to phase in their survivorship programs, but many facilities throughout Connecticut are already well on their way to establishing programs that ease the transition from cancer patient to cancer survivor.
A life-changing diagnosis
Taylor, the breast cancer patient from Trumbull, was scheduled for her final radiation treatment — a milestone in a cancer journey that has been going on almost a year — during her most recent visit with Winks.
Last December, Taylor discovered a lump in her right breast while giving herself an exam and promptly had a mammogram. She had a family history of breast cancer and knew she had to act quickly. She was eventually diagnosed with breast cancer, which spread to some of her lymph nodes.
Taylor had a mastectomy in January and had her left breast removed as a preventive measure. Doctors took out 28 of her lymph nodes as well, and 10 of those turned out to be cancerous.
Initially, Taylor said, she expected her treatment to mainly consist of surgery, chemotherapy and radiation. But during the course of her treatment, Taylor heard other breast cancer patients talking about going to physical therapy. She didn’t realize there were such programs for breast cancer patients.
“I thought, ’Should I be doing that?’ ” she said.
For Taylor, the big issue has been her arm. One of the effects of her treatments has been a condition called axilliary webbing, which often makes it feel like there are strings attached from her armpit to her thumb. The result is a “tight” feeling that can make movement difficult. Her arm can also feel heavy, achy, and like it’s fallen asleep.
So she works with Winks, whose therapy includes exercises with resistance bands, as well as massage and manipulation of the affected area. Even though Taylor’s now completed treatment, Winks said problems could crop up down the line. Those include lymphedema, a condition caused by swelling in the lymphatic system.
Taylor said she has been grateful for Winks’ assistance, and not just because she’s helped with her arm. Because she sees Winks more frequently than she sees her doctors, Taylor said, Winks has become a confidant, an educator and a friend.
“It’s just nice to have someone knowledgeable to ask questions of,” Taylor said. “I think anytime you can offer any kind of help or assistance to cancer patients, it’s fantastic.”
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