Cancer Survivorship
The Mass General Cancer Center Survivorship Program’s goal is to promote the health and wellbeing of patients with cancer following completion of initial therapy.
Learn about some of the common side effects and health issues that patients experience and find information on treatment options and where to go to learn more and get help.
Many side effects from cancer therapy occur during treatment and resolve in the weeks and months after therapy. However, some side effects do not go away and others can show up years later. For many of these problems, there are treatments available. In this section, we list some of the common side effects and health issues that patients experience with information on treatment options and where to go to learn more and get help.
For some issues, we have specialized clinical services that combine expert care for side effects from cancer treatment and research to improve our understanding and provide the most up-to-date treatments for these problems. Specialized services that are either provided within the Mass General Cancer Center or that are affiliated with the Mass General Cancer Center are described here.
Below you will find info on the following topics: Cancer as a Chronic Disease, Exercise, Fatigue, Financial Counseling, Genetic Counseling, Hot Flashes, Memory Loss & Trouble Thinking, Returning to Work, Sleep.
Cancer as Chronic Disease
Having a cancer which is not curable does not mean there is no treatment or hope. Sometimes a cancer which is not curable can be treated for many years -- the cancer can be a chronic (ongoing) illness much like diabetes or high blood pressure. For some people, this means long term medications or other treatments. For others, this can be a cancer in remission, with watchful waiting for a possible recurrence.
Living with cancer in this way brings unique challenges. Some people feel like they are stuck in a place of fear or uncertainty. Friends and family may have difficulty understanding your situation. It can be difficult to find a “new normal.”
Susan GubarNo matter how grateful...for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners...The social pressure to be upbeat can get anyone down.
Living with Cancer: Chronic, Not Cured, (NYT 6/5/2014)
The concept of a cancer that is not curable but is treatable for many years is relatively new. If you have this kind of chronic cancer you may feel that you are alone or that people around you do not understand the challenges you are facing. You may have difficulty finding the kind of support that you need.
It is important to let your health care team, including both your Primary Care doctor and your Oncology team, know how you are feeling and what you are having difficulty with. Even when things are going well from a cancer perspective, it is very normal for you to be struggling emotionally or physically and your team wants to help.
Where do I start?
The first step may be as simple as allowing yourself to accept whatever feelings, both emotional and physical, present themselves. It is okay to feel frustrated, sad, fearful, tired, joyful, hopeful, and grateful, all at the same time! It will be important to find someone that you feel safe discussing these feelings with. That might be one of your doctors, it might be a mental health professional, it might be a friend or family member, or a support group, or it might be a combination of all of these people. If you have difficulty identifying the right person to confide in, start with the health provider who knows you best. Rest assured that you are not alone.
What can I do on my own?
Finding a way to cope with the physical and emotional toll of chronic cancer will be different for each person. It may take some time until you find a way that works well for you.
Jon Kabat-Zinn’s classic book Full Catastrophe Living can be an excellent resource for mindfulness-based stress reduction. The program “shows you how to use medically proven mind-body approaches derived from meditation and yoga to counteract stress, establish greater balance of body and mind, and stimulate well-being and healing... to manage chronic pain, promote optimal healing, reduce anxiety and feelings of panic, and improve the overall quality of your life, relationships, and social networks.”
Resources
These are some websites and blogs that address this topic:
- Stanford Medicine, Scope Blog: Looking at Cancer as Chronic Illness
- Cancer Connect: The Long View Coping with Chronic Cancer
- American Cancer Society: Managing Cancer as a Chronic Illness
Exercise
Exercise can have many benefits after treatment for cancer. Studies have shown that higher rates of physical activity may reduce the risk of colon, breast, endometrial, and lung cancers. There is evidence that increased physical activity after a colon cancer diagnosis can reduce the risk of recurrence. For breast cancer patients, exercise has been shown to improve overall fitness, reduce fatigue, improve quality of life and reduce side effects from therapy.
Exercise can also help with the emotional recovery after a cancer diagnosis and is part of the transition to a healthy lifestyle after completion of initial treatment. It is a good idea to talk to your oncology team and your primary care doctor about exercise and determine what type of program might be right for you. Some patients may avoid exercise because they don’t think it is safe or they do not think it can help them, and this is usually not true.
Where do I start?
The American College of Sports Medicine recommends at least 150 minutes each week of aerobic exercise (running, walking) and muscle/strength training at least twice each week for most survivors of cancer.
Specific exercise recommendations should be based on the individual patient, their medical condition and exercise tolerance. Please speak to your oncology care team or primary care physician for advice.
Resources
For those seeking one-on-one counseling regarding exercise, call 617-724-4000 or visit our lifestyle medicine clinic.
The following resources can provide more information:
- Information on Physical Activity and Cancer from the National Cancer Institute
- Information on Physical Activity and Cancer from the American Cancer Society
Fatigue
A condition marked by extreme tiredness, inability to function normally and lack of energy. This is one of the most common side effects of cancer and its treatment. Related symptoms often include insomnia, depression, shortness of breath, generalized weakness.
Fatigue is a common side effect from cancer therapy and can be due to chemotherapy, radiation, biologic therapy or endocrine therapy. It can also be a sign of other medical conditions such as anemia (low red blood cells), infection, low thyroid levels, diabetes, liver problems, kidney problems, heart problems or lung problems. Many people with insomnia experience fatigue. Fatigue can also be a symptom of depression. Fatigue can also come from poor diet and lack of exercise.
Because there are so many different possible causes of fatigue, there is no single best treatment option or group of options. Talk to your oncology team and primary care doctor about fatigue. They can evaluate your situation to determine the cause.
Where do I start?
- Exercise: Moderate exercise at least 150 minutes each week and 1 or 2 strength training sessions per week can reduce fatigue. Exercise should increase gradually to this level for patients starting with low levels of physical activity.
- Psychosocial Interventions: Cognitive behavioral therapy (CBT): Treatment with a psychologist can help with depression and other conditions that could be the cause of fatigue.
- Mind-Body Interventions: Mindfulness-based approaches, yoga, and acupuncture can reduce fatigue in cancer survivors. Massage, music therapy, relaxation, Reiki, and qigong may also help.
- Pharmacologic Interventions: In rare cases, a stimulant (methylphenidate) or a wakefulness drug (modafinil) may be considered by your doctor, but this would be only after eliminating specific causes of fatigue. The effects of Ginseng, Vitamin D and other supplements have not been shown in studies to have clear benefits.
Resources
Evaluation of fatigue starts with your primary care doctor or oncology team.
Mass General Cognitive Behavioral Therapy
More information about cancer related fatigue from the National Cancer Institute
Financial Counseling
Many patients experience difficulty with finances due to the costs of cancer care, or the impact of cancer on ability to work, childcare needs, costs of travel for care and other expenses. There are a variety of programs available to help patients get health insurance coverage and to make sure that patients get access to the care they need. Financial counseling is available for all patients at the Mass General Cancer Center.
Resources
Please contact the financial counseling center at 617-726-2192 for assistance. In addition, if you are experiencing problems getting medication you need or staying on medication due to costs, talk to your oncology care team. This information is important for your care and they can help connect you with appropriate resources.
Genetic Counseling
Some cancers are related to genes that we share with our parents, children or siblings. Genetic counselors are available to help patients determine if genetic testing will be useful to see if the risk of cancer is inherited. For some cancers, this can affect treatment and prevention of additional cancers and it can affect healthcare recommendations for family members. In particular, patients with a strong family history of cancer, family members affected by cancer at an early age, rare cancer types, and patients who have more than one type of cancer should consider genetic counseling. Your doctor may refer you to genetic counseling or you can call the number below to arrange to speak with a genetic counselor.
Resources
Call Mass General Genetic Counseling at 877-789-6100 or visit our Cancer Genetics site.
Hot Flashes
Hot flashes are sensations of warmth, sweating, or flushing, often on the face or chest that can occur suddenly and without any relationship to exercise or room temperature. These symptoms could also include being warm and uncomfortable, having a red face, sweating, dry mouth, irritability, waking at night, headache, and dizziness. This is often a side effect of hormone based treatment and can occur in men or women. They can also be due to thyroid issues, diabetes, and panic attacks.
Treatment options:
- Venlafaxine: A once daily pill, also used as an antidepressant, which helped more than 50% of patients with hot flashes in clinical trials.
- Gabapentin: A pill that can be taken from 1 to 3 times/day, helps with hot flashes and can cause drowsiness which helps some patients sleep at night.
- Citalopram: A once daily pill, also used as an antidepressant, which helped more than 50% of patients with hot flashes in clinical trials.
Non-drug treatment options:
- Yoga has been proven to help some patients with hot flashes in clinical trials.
- Acupuncture has been proven to help some patients with hot flashes in clinical trials.
- Cognitive Behavioral Therapy is treatment with a psychologist.
What is NOT proven to help:
- Clonidine (side effects outweigh benefits)
- Black Cohosh
- Vitamin E
- For patients on anti-estrogen therapy it is important to avoid over the counter treatments for hot flashes which may contain estrogen.
Resources
Please talk with your primary care physician or oncology care team to determine the best treatment for you.
- Integrative Medicine for Acupuncture
- Mass General Cognitive Behavioral Therapy
- Mass General Sleep Center
Memory Loss and Trouble Thinking
Cognitive impairment, also called “chemo brain” can be a side effect of chemotherapy, radiation therapy to the brain, and hormonal therapy. It can also occur as a result of stress and depression following a cancer diagnosis. Patients may experience memory loss, trouble with finding words, difficulty concentrating and trouble thinking. Help is available to assess, diagnose and treat these problems.
Resources
If you feel that you are having difficulty with memory or thinking, you should discuss this with your oncology team and they may refer you to the Neurotoxicity Clinic at 617-724-8770.
Returning to Work
Returning to your regular routine and work can be a challenge for cancer patients after finishing active treatment. You may have emotional, social and physical concerns returning to a regular work schedule. Talk with your primary care physician or oncology care team to access resources that might help with the adjustment.
Resources
- Cancer.net article on Returning to Work After Cancer
- You may also contact our oncology social work department to arrange for a meeting to discuss your options and any concerns you may have.
Sleep
Many cancer survivors have trouble sleeping including frequently having trouble falling asleep or staying asleep, or both. Related symptoms include fatigue, depression, hot flashes, breathing problems, and pain.
Sleep issues can be due to depression, thyroid problems, sleep apnea, hot flashes, or pain. Some medications, such as hormone therapies may contribute to sleep problems. Stress from the diagnosis or treatment for cancer may also contribute to insomnia. Treatment of pain, nausea, depression, and hot flashes may improve insomnia.
Treatment Options:
- Diphenhydramine (Benadryl, Unisom, Sominex): The lowest effective dose 30 minutes prior to sleep can provide relief without long term side effects.
- Benzodiazepines (lorazepam, triazolam, temazepam): These can be effective but can lead to dependence. They should not be used regularly and only be used on a short term basis, (7 to 10) days.
- Non-benzodiazepine Hypnotics: Should only be used short term.
- Ambien (zolpidem), Lunesta (eszopiclone), Sonata (zaleplon): Take the lowest effective dose. For help falling asleep or staying asleep.
Non-Pharmacologic Approaches:
- Diet: Avoid stimulants. Eat tryptophan rich foods (ex: Turkey) at night, as well as complex carbohydrates, calcium, magnesium, and B-complex vitamins.
- Acupuncture: Studies are mixed, but may be helpful.
- Phototherapy: Getting sunlight upon wakening in the morning can be effective.
- Cognitive Behavioral Therapy (CBT): Treatment with a psychologist.
Resources
Talk with your primary care provider or oncology care team to determine the best treatment for you.
- Mass General Sleep Division: 617-724-7426
- Mass General Cognitive Behavioral Therapy: 617-724-7792
Supportive Care Services
Our support programs can help patients and their families cope with the challenges of a cancer diagnosis.
The Story Project
The Story Project is our effort to capture the stories from the people in our Mass General Cancer Center community.