The whirlwind of treatments that followed Heidi Taylor's breast cancer diagnosis -- a mastectomy, chemotherapy, radiation -- left her with limited motion in the 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 the new normal of life after cancer. In addition to Bridgeport Hospital, a variety of local facilities -- including Danbury Hospital, Stamford Hospital and Greenwich Hospital -- have launched their own efforts within the past few years. The push for these programs was stepped up a notch 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's 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 this year. 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 alive 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. Also, when patients emerge from treatment after months of doctors, nurses and others monitoring their every move, they can feel a bit lost, said Debbie McDermott, nurse practitioner and survivorship coordinator at the Comprehensive Breast Health Center at St. Francis Hospital in Hartford. "They're well-coddled throughout the process," she said. "But a lot of cancer survivors have said that when they're done with treatment, they are left with a `Now what?' feeling."
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."
Indeed, many area hospitals have felt pressure in recent years to add or expand programs that address the post-treatment needs of cancer patients. A lot of these efforts were set in motion by a 2005 report from Institute of Medicine, the health arm of the National Academies of Science. The report, called "From Cancer Patient to Cancer Survivor: Lost in Transition," detailed how, upon finishing treatment, many patients moved from a regimen of care to a place in their recovery that offered few guidelines on how to approach the next phase of their life. That's in spite of the fact that many of these patients not only faced residual side effects from their care, but often needed emotional support to cope with their "new normal" of life as a cancer survivor.
"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 required that the care plan should, among other things, include the expected long-term and short-term effects of cancer therapy, as well as possible strategies to prevent or treat those. McKellar said 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.
Reaching out to survivors
St. Francis' breast center survivor program has been in full swing since January. It includes instruction in diet and exercise, as well as providing an on-site social worker who works with patients. So far, the program in the breast center is the only program at the hospital that deals with survivorship issues.
Other hospitals have more comprehensive programs.
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 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.
Frances Becker, supervisor of oncology support services at Stamford Hospital's Bennett Cancer Center, said much of these services are paid for by donations, so they are free to patients.
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.
Bridgeport Hospital is the first in the state to offer the STAR Program, which was developed by the Massachusetts-based health care company Oncology Rehab Partners. Griffin Hospital in Derby is in the process of getting STAR-certified.
Bridgeport's program is actually called the Sandie Taubin STAR Program. It was made possible by a donation from Stratford gastroenterologist Howard Taubin, and is named for his wife, who died of breast cancer. Taubin learned about STAR through his daughter, who works for Oncology Rehab Partners. He said he saw how much his wife suffered during her cancer treatments, and wanted to provide other patients with services that could help improve their quality of life. Occupational therapists, speech pathologists, dietitians and other professionals are on hand to help.
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 had 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 web syndrome, 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's 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."
acuda@ctpost.com; 203-330-6290; http://www.twitter.com/AmandaCuda; http://blog.ctnews.com/whatthehealth/
Source: http://www.ctpost.com/local/article/Life-after-treatment-Cancer-rehab-programs-3884481.php
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