Cancer patients have plenty on their minds, but so do cancer survivors. Luckily, there are many caregivers to help them along the journey toward recovery.
A cancer diagnosis is devastating. The prospect of weeks, months or even years of treatment – in addition to chemotherapy, radiation and possibly surgery – is daunting enough for anyone to face. But what’s even more worrisome for patients is the question of what comes afterward.
Cancer survival is a secondary process that requires as much resilience, strength and perseverance as the regimens themselves. Today’s cancer survivors have the benefit of an intensive medical and social network of professional caregivers who educate, guide, rehabilitate and support them through this crucial period in their journey. And it starts with the aftercare given by oncologists and surgeons who have treated the patient and know precisely what is needed to ensure they recover fully.
Of course, recovery is as much a state of mind as it is a state of being. Dr. Alan Wan, a hematologist and oncologist for Northwestern Medicine McHenry Hospital in McHenry, confirms that cancer treatments can have long-term side effects.
“Side effects may occur, depending on the type of cancer and the regimen prescribed,” he says. “We design chemotherapy and radiation to achieve the maximum results with minimum adverse effects, but with so many variants for each patient, short- and long-term side effects can develop.”
Oncologists focus equally on treatment and survival.
“The main goal is to bring each patient back to the best quality of life,” Wan says. “Some of the best treatments available also may cause side effects that we help patients manage. One of the most common is neuropathy, particularly in cases of breast and colon cancers. And some patients are already prone to neuropathy because of diabetes.”
When side effects are diagnosed, Wan says, there are several ways to address them, including prescribed medications, vitamins and occupational therapy.
“So much depends on the type of cancer and how severe both the cancer and the treatment regimen were,” Wan explains. “We give each patient a personalized cancer survival plan that teaches them what to look for in terms of physical symptoms, mental health concerns and plans for returning to work and life.”
With the goal of bringing each patient to a new normal, educating them is half the process.
“We give them tips on basics like diet, exercise, stress relief and more,” he adds. “Then we do survival evaluations to help them on their journey to wellness. They undergo regular visits because we understand that some of the side effects may never go away.”
Regular physician visits and testing help to ensure future medical issues are caught as quickly as possible. Some patients take long-term medications to prevent future cancers or to address side effects of treatment.
Follow-up appointments vary per physician, but Wan says cancer survivors typically see their oncologist in accordance with the type of cancer they had.
“For example, with colorectal cancer, patients see oncologists every three to six months for two years, and then every six months for three, four or five years depending on how serious the cancer was,” Wan explains. “These appointments include a thorough physical exam and lab work as needed. After five years, the appointments are usually scheduled once a year until 10 years, when the patient is considered cured.”
In conjunction with post-cancer survival care, Northwestern Medicine offers cancer survivor services in McHenry and at the LivingWell Cancer Resource Center in Geneva, where experts help to educate, support and guide patients and their families through diagnosis and treatment options.
“Northwestern Medicine offers support groups, demonstrations, talks and other supportive programs such as yoga, all of which are cancer-specific,” Wan says. “We consider it a model for what survivor care should be and, best of all, it’s local. Patients don’t need to drive into Chicago for this level of support.”
One of the most vital aspects of cancer treatment and survival is managing fear. Jessica Sima, an oncology nurse navigator with Northwestern Medicine Cancer Center in McHenry, says patients are sometimes more worried about survival than they are about treatment.
“My role is to help patients through the entire process of cancer treatment and survival, and I work with them at the level they choose,” Sima says. “After a patient is diagnosed with cancer and referred to me, I help them find the appropriate specialists within the system, often making appointments for them. Some patients want to take control while others prefer that I guide them through the process. They come to me at every stage of their cancer treatment, and each person has a different way of handling their unique situation. Some aren’t certain who they should see, while others need the reassurance that they are on the right path. I meet them where they are at that moment.”
Referrals come from several sources, including primary care providers and specialists such as ear, nose and throat physicians. After speaking with patients and the referring physician, Sima says she determines whether the patient needs to see an oncologist, surgeon or other practices.
“Education is also a part of what I provide,” Sima says. “I talk with patients, giving them as much information as they are willing to hear. Sometimes they want a second opinion or are confused about which type of physician can provide the care they need. I help them make informed decisions so they can meet their treatment goals.”
After treatment is complete, Sima continues to help patients through the next steps of survivorship. She connects them to resources and answers any lingering questions they may have.
“The long-term side effects of cancer aren’t just medical,” she adds. “Fear, emotional upset, financial constraints, fertility questions, and the changes to their home and work brought on by cancer are just some of the issues that survivors face.”
It is impossible to totally comprehend the impact cancer has on a patient. “Each one has a life permanently impacted by this disease,” Sima says.
“Patients may start therapy before, during or after their cancer treatment,” Downing explains. “They may have undergone or be in the midst of surgeries, chemotherapy and radiation over a period of months. It may not have been their first brush with cancer. This impacts their potential therapy needs and outcomes.”
Physical therapy is an essential factor in helping cancer survivors achieve a successful transition to wellness. After initial treatments, each patient undergoes therapy that takes into consideration not only how they were treated but also underlying conditions that may affect their individual needs. This presents unique challenges for Christie Downing and Lauren Lebak, registered physical therapists with AMITA Health Rehabilitation Hospital Elk Grove Village, in partnership with Shirley Ryan AbilityLab.
Lebak adds that the first order of business is to fully assess each patient and establish a therapy plan considers their cancer status and their overall condition.
“We assess range of motion, strength, tissue elasticity, and overall fatigue with activities associated with work or household-related tasks,” Lebak says.
As an example, Downing uses breast cancer therapy. “After breast cancer, the patient may develop problems in their shoulders,” she says. “Depending on the extent and type of treatments, they may develop pain of limitations in movement of their shoulder. We design a therapy plan while considering their other treatments to address those concerns.”
Education is another facet of patient care, Lebak points out. “A patient who has gone through breast cancer surgery, radiation and/or chemotherapy needs to be able to identify early warning signs of lymphedema.”
According to the Centers for Disease Control and Prevention, lymphedema causes swelling in the arms, legs and hands as the result of damage or removal of lymph nodes during cancer treatment. This condition can be temporary or lead to permanent swelling as well as advanced sarcoma of the lymph nodes, a life-threatening secondary disease.
“Lymphedema can develop as the result of breast or pelvic cancer because of surgical removal of lymph nodes or as a side effect of radiation,” Downing says. “It ranges from mild to severe.”
Another side effect is how a patient feels about himself or herself during treatment.
“The social and emotional impact of cancer is enormous,” says Downing. “Helping them to get stronger and participate in their normal lifestyle is vital.”
Along with assessing each patient’s experience, Downing says her and Lebak often must coordinate with continuing treatment appointments.
“Cancer patients are very busy people,” Downing explains. “They may have three or four medical appointments in a week, in addition to physical therapy.”
The length of time cancer patients undergo physical therapy depends on what kind of cancer was treated, how it was treated and their health prior to the diagnosis, Downing says.
“For some, it may be three to four weeks, while others may need months,” she adds. “And occasionally we see patients years after their initial cancer treatment. A patient may come in for rehabilitation after knee replacement surgery, and they were treated for a cancerous tumor in that leg years before.”
In these cases, Downing and Lebak say they evaluate the extent to which the earlier surgery affected nearby muscles and tendons including the presence of any possible scar tissue.
“It takes longer to rehabilitate these types of patients,” Lebak adds. “We set goals and establish a consistent schedule to get them back to optimal functionality.”
All therapy plans also take into consideration the patient’s other medical and physical conditions.
“Diabetes, chronic obstructive pulmonary disease (COPD), heart and kidney health, and so many other factors go into each patient’s evaluation,” Downing adds.
The journey to wellness is arduous and often long, but fortunately cancer survivor patients have the help they need to reach that destination. Every patient is unique, and it takes a team effort to guide them through. Survivor care plans can begin before the patient has completed medical regimens and continue until the goal of full recovery has been reached.