Experts use the word "survivor" for any person who has been diagnosed with cancer at any stage. Survivorship refers to the short- and long-term health and wellness concerns of people who have been diagnosed with cancer.
The effects of cancer and treatment begin at diagnosis but they can last long after treatment ends.
Follow-up care after treatment
Even after treatment ends, it is important for cancer survivors to receive ongoing follow-up care from a doctor who can address the issues listed above.
The National Comprehensive Cancer Network guidelines for cancer survivors recommend that they be checked annually by their oncologist or primary care doctor for special health issues, including:
- cardiovascular (heart) disease
- emotional distress
- cognitive (memory and thinking) issues and fatigue
- menopause symptoms
- sexual dysfunction
- sleep disorders
For many of the health issues listed above, exercising regularly, eating a balanced diet and maintaining an ideal body weight can improve health outcomes. Research on ways to improve health and quality of life in cancer survivors is ongoing.
After treatment, some oncologists provide their patients with a "survivorship care plan" that outlines the treatment the patient received and provides a list of recommended follow-up visits and care. It is very important that you speak with your doctor and have a plan for care after treatment ends, including:
- which doctors should you see, and how often?
- which tests should you have done, and when?
- who should you contact between appointments to report any symptoms or side effects?
People diagnosed with cancer have a greater risk for heart disease than people who have never been diagnosed. Some cancer treatments, including chest radiation, and certain chemotherapy and targeted therapy agents can cause heart damage. Other risk factors include early-onset menopause from treatment or surgery and a family history of heart disease. Researchers are also studying whether inherited mutations, including BRCA1 and BRCA2, may affect the risk for heart disease.
NCCN survivorship guidelines recommend that cancer survivors be regularly checked for heart disease:
- Doctors should review patients' medical history and note any treatments that increase risk for heart disease.
- Doctors should check patients for other heart disease risk factors, including high cholesterol, diabetes, smoking, obesity and a family history of heart disease.
- Doctors should examine patients for signs of heart disease.
- Patients showing evidence of heart disease should have a complete cardiac exam, including imaging (e.g., echocardiogram), EKG and blood tests.
Because heart disease that is caught early is more treatable, it's important for cancer survivors to receive follow-up care for heart disease and to report to their doctor any shortness of breath, abnormal heart rhythm, chest pains or other symptoms.
People diagnosed with cancer often report trouble with their memory and abilty to think clearly, also known as cognition. This change can persist even years after treatment ends. Chemotherapy and other treatments may effect memory; patients sometimes refer to this as "chemo-brain." Other factors, like early-onset menopause, stress and anxiety may also affect memory. In many cases, memory changes associated with cancer improve over time.
Like memory issues, fatigue is common in cancer survivors and can persist years after treatment. Many of the causes and approaches to fatigue are similar to those for memory.
NCCN guidelines recommend that doctors ask cancer survivors about changes in memory and thinking and their experience and level of fatigue as part of their regular visits. Patients who report cognitive changes or fatigue should be checked and treated for underlying causes, including depression, sleep disturbance, fatigue and medication side effects. The guidelines recommend that survivors limit alcohol and drugs that can affect memory, sleep quality and energy level.
Some research has shown a benefit from yoga, exercise, mindfulness, meditation and cognitive training. Research has shown some benefit from the medication Modafinil, a drug used to treat sleep disorders.
Lymphedema is fluid buildup and swelling that develops in the arms, legs or other part of the body, usually as a result of surgery that removes lymph nodes or radiation therapy. The swelling and fluid may be mild to severe and can cause pain, infection and loss of mobility.
Although symptoms of lymphedema may not always be obvious, it is important for survivors, especially those who have had surgery, radiation or lymph nodes removed to report any persistent feeling of heaviness, pain or discomfort, muscle weakness, tightness or swelling to their doctor.
Lymphedema is usually managed with special massage and compression garments. This is most effective when it is caught early. In some circumstances, lymphedema that progresses can be managed with surgery. The right type of weight training under supervision and physical activity do not worsen lymphedema and in fact, may help to lower risk.
Sleep is important to overall wellness. The NCCN recommends that doctors ask survivors about their quality of sleep and check for underlying medical causes of sleep disturbances. Sleep experts can help develop plans for treating sleep disorders, which may include behavioral therapy, strategies for improving sleep habits and medication.
Many cancer centers offer survivorship expertise and services, including fatigue clinics, sleep centers, lymphedema experts, and pain management experts. As your doctor to refer you to experts who can address your symptoms and concerns. The following resources can help you find the following experts:
- The American Academy of Sleep Medicine's website SleepEducation.org includes a section on finding a sleep center by location.
- The American Physical Therapy Association's ChoosePT.com website allows you to search for a physical therapist in your area.
- Eatright.org, the website for the Academy of Nutrition and Dietetics, has an online tool to find a nutritionist in your area. You can search for nutritionists by specialty, including "cancer," "weight management" and "heart health."
- The National Certification Commission for Acupuncture and Oriental Medicine has a searchable directory of licensed acupuncturists.
- The Lymphatic Education & Resource Network has tips and tools for finding lymphedema experts.
- The North American Menopause Society is an organization for menopause experts. Their website has a tool to help you find a qualified menopause expert in your area.
- NCT03119363: Treating Cancer-Related Fatigue Through Systematic Light Exposure (Light for Fatigue Study). This study investigates a novel low-cost/ low-burden intervention: systematic light exposure to treat cancer related fatigue.
- NCT03525873: Methylphenidate and Physical Activity to Reduce Cancer Related Fatigue Due to Anti PD1 Immunotherapy. This trial studies how well the medication methylphenidate and physical activity works in reducing cancer-related fatigue in patients who are receiving anti-PD1 immunotherapy for cancer that has spread to other places in the body.
- NCT03996265: Bupropion in Reducing Cancer Related Fatigue in Stage I-III Breast Cancer Survivors. This trial studies how well bupropion works in reducing cancer related fatigue in stage I-III breast cancer survivors.
- NCT03510689: Genetics and Heart Health After Cancer Therapy (Gene-HEART). The goal of this study is to learn whether mutations in BRCA1/2 result in an increased risk of CV disease.
- NCT03879629: TrAstuzumab Cardiomyopathy Therapeutic Intervention With Carvedilol (TACTIC). Breast cancer patients receiving Herceptin or other HER2-directed therapy are at risk of heart damage. This study is looking at whether drugs called beta-blockers could help.
- NCT02943590: STOP-CA (Statins TO Prevent the Cardiotoxicity From Anthracyclines).
This research study will test whether atorvastatin, a drug commonly prescribed for reducing cholesterol levels, can protect the heart during chemotherapy with doxorubicin. Atorvastatin is from a family of medications that are commonly called "statins".
- NCT03861975: Exploring the Efficacy and Feasibility of the LymphaTech Scanner for Breast Cancer-Related Lymphedema Screening. This research will assess arm edema using the LymphaTech Scanner, and a comprehensive self-report questionnaire in patients who have been diagnosed with invasive breast cancer or DCIS.
- NCT01521741: Prospective Analysis of Symptoms and Lymphedema in Patients Following Treatment for Breast Cancer. The objective of this study is to determine the level of symptoms, functional disability, and changes in quality of life that breast cancer patients experience from changes in their arm(s) during and after treatment for breast cancer.
- NCT02949726: Lymphatic and Systemic Immunity Changes in Post-radiation Lymphedema Development. The goal of this study is to find out which immune molecules, cells, and genes are involved in the development of lymphedema (LE), so that medicines that target them can be considered for treating lymphedema. The hypothesis is that LE is a systemic, autoimmune-like disease that is initiated by inflammatory molecules induced by surgery, radiation, and possibly chemotherapy in genetically susceptible patients.
- NCT02734979: Prospective Evaluation of a Surgical Solution for Breast Cancer-Associated Lymphedema (Biobridge). To investigate whether addition of the Biobridge scaffold to the standard surgery for vascularized lymph node transfer will improve the outcome of surgical treatment in lymphedema of the upper arm.
- NCT03428581: Preventing Lymphedema in Axillary Lymph Node Dissection. The researchers are trying to answer if axillary reverse mapping (ARM) with lympho-venous bypass (LVB) in patients undergoing an axillary lymph node dissection reduces the rate and severity of post-operative lymphedema of the arm.
Memory and cognition
- NCT02793921: Exercise Program in Cancer and Cognition (EPICC). This trial will examine whether an exercise intervention, initiated before beginning aromatase inhibitor (AI) therapy, improves cognitive function in postmenopausal women with early-stage breast cancer.
- NCT03650322: Effects of Yoga, Strength Training and Aerobic Exercise on Cognition in Adult Cancer Survivors. The study will look at the effects of a 12-week, supervised, site-based group yoga intervention on cognitive function, functional fitness, and well-being in middle-aged cancer survivors.
- NCT03016741: Cognitive Effects of Androgen Receptor Directed Therapies for Advanced Prostate Cancer. This clinical trial studies cognitive function in men with prostate cancer treated with androgen receptor directed therapies such as abiraterone acetate and enzalutamide.
- NCT02822573: Phase 3 Randomized Placebo Controlled Clinical Trial of Donepezil (Remember).
This study will look at the safety and effects of donepezil (Aricept) for patients reporting cognitive or memory issues after receiving chemotherapy for breast cancer. The primary objective is to see if memory improves with the use of donepezil during the study.
- NCT03187353: IMProving Executive function Study (IMPRES). tIMPRES is sudying the effects of a stimulant medication called Vyvanse® on memory and attention in women who had surgery to remove their ovaries to lower their risk for ovarian cancer (risk-reducing salpingo-oophorectomy or RRSO).
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