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.

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Learn about common side effects and health issues that many patients experience as well as information on treatment options, where to learn more and how to get additional support.

Many side effects from cancer therapy will occur during treatment and resolve in the weeks and months after therapy. Some side effects will not go away, however, and others can show up years later. There are treatments available for many of these problems. Below we have listed helpful information and resources.

For many side effects, we have specialized clinical services that combine expert care and research to improve our understanding of and provide the most up-to-date treatments. Specialized services that are either provided within or are affiliated with the Mass General Cancer Center are described here.

Below you will find information on the following topics:

 

Cancer as Chronic Disease

Some cancers are not curable, but that does not mean there are no treatment options or hope. In some cases, cancer that is not curable can be treated for many years, meaning the cancer is similar to chronic (ongoing) illnesses 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 monitoring for possible recurrence.

Living with cancer in this way brings unique challenges. Some 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.”

No 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.

Susan Gubar
Living with Cancer: Chronic, Not Cured (NYT 6/5/2014)

The concept of a cancer that is treatable but not curable is relatively new. If you have this kind of chronic cancer, you may feel alone or like the people around you do not understand the challenges you are facing. 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 to be struggling emotionally or physically and your team is here to help.

Q: Where do I start?
A: The first step can 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, a mental health professional, a friend or family member, a support group, or it might be a combination 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.

Q: What can I do on my own?
A: 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 before 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 that address this topic:

 

Emotional Distress

Most people experience emotional distress at some point after a cancer diagnosis. For some, this happens in the survivorship period (sometime after they finish their initial cancer treatment). This is a very normal reaction, and you are not alone if you are feeling distressed. Please alert your oncologist or primary care doctor if you are having symptoms of anxiety and/or depression. They can help guide you toward lifestyle changes like diet, activity, and sleep changes, refer you for counseling, or consider medications to help you manage your emotions.

If you ever feel in danger of hurting yourself, or are having thoughts of suicide, call 988 for the Suicide and Crisis Lifeline. Available at all times with English and Spanish speaking staff.

Several programs are available for you at Mass General Cancer Center:

Mind Body Program for Cancer Survivors
Mass General Cancer Center offers the Benson-Henry Institute for Mind Body Medicine’s resiliency training program specifically tailored to address the needs of patients with cancer. This 9-session skills-based program is designed to help patients manage the physical, social, and emotional changes they may experience after cancer treatment. Our goal is to teach patients critical tools to help optimize their quality of life and overall resiliency.

Specifically, this program helps patients:

  • Cope with general life stress
  • Manage the physical, social and emotional aftereffects of cancer treatment
  • Learn self-care techniques, through relaxation, mindful awareness and adaptive thought patterns
  • Increase their sense of control, optimism, acceptance and overall well-being

Learn more here, by emailing mghsurvivorship@partners.org or ask your cancer team to refer you to this program.

Adolescent and Young Adult (AYA) Cancer Care
This clinical care program is designed to provide a multidisciplinary approach to the care our AYA patients receive. Our team provides resources for fertility and sexual health, emotional well being, education, physical health and rehabilitation, nutrition, social support, and spirituality. Learn more here or email ayacancer@mgh.harvard.edu.

Online Therapy & Psychiatry Provider Search Services:

  • Psychology Today is an online therapy and psychiatry directory. Users can filter by insurance, geography, and specialty. Please visit Psychology Today here.
  • Zoc Doc is an online medical booking services that allows people to find and book medical care for free. Please visit Zoc Doc here.
  • InnoPsych is an online therapy directory for patients seeking resources specific to their identity as BIPOC. InnoPsych strives to make therapists of color more visible in the community by creating a path to make it faster for people of color to match with a therapist of color and to create a major shift in how communities of color view therapy. Please visit InnoPsych here.
  • Zen Care is an online therapy matcher that allows you to filter by insurance and provider specialty, view introductory videos to find a therapist who matches your criteria, and book a call to ensure your therapist is a match. Please visit Zen Care here.
  • Therapy Matcher provides free, personalized, and confidential referrals to licensed social workers across Massachusetts. If you're in need of a qualified therapist, call 800-242-9794 or email at info@therapymatcher.org. For more information, please visit Therapy Matcher here.
  • BetterHelp offers access to licensed and accredited psychologists, marriage and family therapists, clinical social workers, and board licensed professional counselors. Please visit BetterHelp here.
  • Mass General Brigham Resource Specialist If you need additional help identifying resources, please call 844-933-2273 to speak with a MGB Resource Specialist. You may also fill out an online form here to request resources. A resource specialist will contact you in 1-2 weeks.
  • NAMI Peer Support Warmline Warmlines are numbers that people call for support when feeling lonely, anxious, sad, or simply need someone to talk to. They can also provide resources to callers. To find the contact info. for your geographic area, please visit the website here.

 

Exercise

Exercise can have many benefits after treatment for cancer:

  • Improve mental health by reducing anxiety and depression symptoms
  • Improve physical health by improving physical function, bone health, and sleep
  • Reduce fatigue both during and after treatment for cancer
  • Reduce risk of other cancers and chronic diseases
  • In some setting exercise is proven to reduce the risk of cancer recurrence
  • Help manage weight with a healthy diet

Q: How much should I exercise?
A: Any physical activity is better than none!

  • Start by moving more and sitting less.
  • Take it one day at a time by setting realistic goals for yourself, tracking them, and noting your progress over time.
  • Start with low time and intensity goals then gradually add minutes over several weeks.
  • To improve overall health, aim to achieve the current ACSM (American College of Sports Medicine) physical activity guidelines: 150 minutes a week (30 min x 5 days a week) of aerobic exercise, include strengthening exercises twice a week.
  • Walking is a simple way to start being more active.

Q: Is exercise safe for me?
A: If you are new to exercise, talk with your treatment team before beginning an exercise program.

  • It may help to meet with a physical therapist or exercise trainer to help get you started, especially if you are new to strengthening exercises.
  • Does not cause or exacerbate lymphedema.
  • Exercise videos specifically designed for patients with cancer are available on the Lifestyle Medicine site.

The following resources can provide more information:

Resources
For those seeking one-on-one counseling regarding exercise, call 617-724-4000, ask for a referral from your cancer care team, or visit our Lifestyle Medicine Program (group visits are also available).

Fatigue

One of the most common side effects of cancer and treatment is fatigue: extreme tiredness, inability to function normally, and lack of energy. Related symptoms often include insomnia, depression, shortness of breath, generalized weakness.

Fatigue can be an effect of 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 stress or depression or 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 so they can evaluate your situation to determine the cause.

Q: Where do I start?
A:

  • 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: Counseling with a social worker or psychologist may be helpful for those with emotional distress contributing to fatigue. 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.

 

Financial Counseling

It is not uncommon for patients to have trouble with finances due to the costs of cancer care, 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 Mass General’s financial counseling group 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. If you are not taking your medication as prescribed, or avoiding visits or tests due to cost it is very important for you to discuss this with your oncology team so they can help address financial concerns and make sure you get the care you need.

There are many groups dedicated to helping patients get the care they need despite potential costs, including Family Reach with information provided on their website.

 

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.

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.

Non-Hormonal 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.
  • Oxybutinin: a twice daily pill shown to help reduce hot flashes among patients with breast cancer.
  • Fezolinetant: A drug recently approved for hot flashes related to female menopause, reduces frequency and severity of symptoms.

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.

 

Memory Loss and Trouble Thinking

Cognitive impairment, also called “chemo brain” can be a side effect of cancer and its treatment. It can also occur as a result of stress and depression following a cancer diagnosis, or from other treatable medical conditions. Patients may experience forgetfulness, problems with organization, mental fogginess, trouble concentrating and multi-tasking, as well as name and word finding problems. Help is available to assess, diagnose and treat these problems, so please talk to your care team if you have cognitive concerns.

What can I do to try to make my memory better?

When trying to learn new information:

  • Write down the information or say it out loud
  • Repeat back medication changes, during medical visits or on the telephone
  • Repeat back important information you need to remember in conversations Find a central location to make lists and take notes on important information
  • A notebook with sub-sections may be helpful to record information on different medical problems
  • In the same notebook find a place for one to-do list, you remain organized and as items are completed your accomplishments are reinforced
  • Consider using technology to organize notes and to-do list, this can also be shared easily

Establish a Routine at home:

  • Place keys, phone and wallet or purse in the same place always
  • Find a common place for your watch, glasses, shoes, and jackets
  • Park your car in the same place at the store or at appointments
  • Use reminders (daily alarm set for 10 am and 10 pm) to take meds or to complete a daily task

You should also:

  • Exercise regularly
  • Get plenty of sleep
  • Remain active with family and friends
  • Read or play games
  • Eat healthy foods and do not drink alcohol

Resources

  • Physical Therapy: Available as one-time consult or recurring visit 617-726-2961
  • Lifestyle Medicine Clinic for Cancer Patients: Individualized exercise and lifestyle interventions to improve quality of life 617-724-4000
  • Neurotoxicity Clinic: If you feel that you are having difficulty with memory or thinking, discuss this with your oncology team and they may enter a referral for you.

 

Nutrition

Good nutrition is essential for good health and attention to what you are eating and drinking is an important part of recovery from or living with cancer. Specific tips for components of your diet include plant based, protein, grains, oils and fats, and spices are described below. The cancer center can provide you with a copy of the National Cancer Institut’s guide to healthy eating or you can download it here. In addition, you can ask your care team for a referral to meet with our nutrition specialists or lifestyle medicine specialists to learn more.

Fight with Phytonutrients

  • Plant-based foods contain phytonutrients which are the disease-fighting compounds in plants
  • Aim for 5-10 servings of fruits and vegetables per day
  • The more colorful the fruit or vegetable, the higher the phytonutrient content – add a variety of colorful foods to every meal
  • Wash all produce well and buy organic when possible (especially the dirty dozen)

The Protein Punch

  • Consume a serving of protein with every meal and snack to meet your protein needs for healing
  • Protein can help maintain muscle mass during treatment and provide longer lasting energy throughout the day
  • Good choices include wild caught fish, eggs, nuts and seeds, beans, soy, cheese, organic milk, yogurt, and free-range poultry
  • Limit processed meats (hot dogs, deli meat, bacon, sausage, salami, pepperoni)
  • Keep red meat to no more than 18 oz per week and choose grass-fed when possible

Whole Grain Goodness

  • Grains contain phytonutrients and B-vitamins
  • Whole grains are high in fiber and aid in bowel regularity
  • In the ingredient list, look for “whole grain” or “whole wheat” as the first ingredient
  • Stay well hydrated when consuming high fiber foods to avoid constipation
  • Try a variety of grains such as quinoa, barley, farro, oats, millet and buckwheat

Oil Mania
Omega-3 fats

  • Aim for 4 oz oily fish 2-3x/wk – salmon, mackerel, halibut, sea bass, herring, blue fish, sardines, anchovies
  • Omega-3 oils are also found in soy, walnuts, pecans, pumpkin seeds, flax seeds and chia seeds

Other healthy fats include plant oils, avocado, nuts and seeds

  • Aim for low intake of animal fats (saturated fats) and foods that contain “hydrogenated” fats in the ingredient list

Super Powered Spices

  • Herbs and spices are a great way to enhance flavor and are also packed with phytonutrients that can help fight cancer
  • Try seasoning foods with curry, cinnamon, garlic, pepper, oregano, basil, dill, turmeric, and mint
  • Marinate meat/poultry/fish for added flavors by using spice rubs, hot sauce, salsa, fresh fruit marinades, garlic, or jalapeno

Tips for Survivorship

  • Limit intake of sodium and processed foods (especially processed meats)
  • Practice proper food safety
  • Reduce stress and get plenty of sleep. Try yoga or meditation.
  • Stay active. Aim for at least 150 minutes of moderate activity or 75 minutes of vigorous activity each week.
  • Maintain a healthy weight
  • Limit alcohol intake (1 drink or less per day for women, 2 or less drinks per day for men).

Resources
If interested in more information or personal consultation, please ask your care team to consider a referral to nutrition or lifestyle medicine. There are also reliable sources of information on nutrition for patients with cancer on cancer.net and cancer.org.

 

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

 

Sexual Health

Cancer and its treatment can affect your sex life in many ways, both physical and emotional. Some patients struggle with body image after cancer treatment. Issues adjusting to hair loss and surgical scars are common. It is also common to feel depressed or anxious following a cancer diagnosis and treatment. Talking with a member of your treatment team can help. You do not have to cope alone. Your sexual health is an important part of your overall health, and it is important for your medical team to know if you are struggling.

Ways to Enhance Sexuality

  • Boost Your Self-Esteem:
    • Changes in diet and exercise are often helpful.
    • The Images Boutique, located in Yawkey 9B, sells special products to help you look and feel your best.
  • Change Up Your Routine:
    • Some sexual activities that used to be enjoyable may no longer be possible or pleasurable. Talk with your partner about sex and when it hurts or feels good. Emphasize the power of intimacy, and the importance of touching, stroking and cuddling. Intimacy and pleasure can be possible, even if penetration is difficult.
    • Male patients can experience erectile dysfunction during and after cancer treatment. Help is available through your oncology team, your primary care team, or by referral to a urology specialist.
  • Increase Vaginal Moisture:
    • Water and silicone-based lubricants help to make penetration more comfortable. They are available over the counter and can increase sexual pleasure. Apply lubricant to both partners’ genitals before sex.
    • Vaginal moisturizer is absorbed into the skin and acts like natural vaginal secretions by maintaining moisture. Nightly use, with an applicator to get the moisturizer high into the vagina, is usually recommended. Do not use petroleum jelly (Vaseline®) or other skin lotions for vaginal lubrication. These products may cause itchy vaginal yeast infections and may also break down latex in condoms, making them tear or break. Organic coconut oil is one good option for vaginal moisturizing.
    • Prescription vaginal hormones are an option for some female patients. Talk with your doctor about this option.

Resources
The Mass General Cancer Center Sexual Health Clinic (Yawkey 9E) team can help to create a treatment plan that fits your needs and situation. Contact: call 617-724-4800 or ask your provider for a referral.

 

Sleep

About 30% of 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, and treatment of these issues can improve sleep. Some medications, such as hormone therapies may contribute to sleep problems. Stress may also contribute to insomnia, and poor sleep can increase stress!

By working to reduce stress and engaging in other good sleep habits, you can improve sleep, maximize health, and increase resiliency to the day-to-day stresses we all encounter.

Good “sleep hygiene” is essential to improving the quality of sleep. If you have trouble sleeping you should make sure you are following these guidelines, easy to remember using the SLEEP rules.

S: Schedule Try to go to bed and wake up on a consistent schedule
L: Light Expose yourself to bright light during the day, keep the bedroom dark, and avoid lights from cell phones, TVs and other electronics before bed and during the night
E: Environment Keep the bedroom cool, comfortable, dark, and relaxing
E: Exposures Avoid alcohol, nicotine, caffeine, and large meals close to bedtime
P: Physical activity Exercise during the day or late afternoon and avoid vigorous exercise immediately before sleep

(From Kwak A, Jacobs J, Haggett D, Jimenez R, Peppercorn J. Evaluation and management of insomnia in women with breast cancer. Breast Cancer Res Treat. 2020 Jun;181(2):269-277.)

Non-Pharmacologic Approaches: These are far safer and more effective than medications and are strongly preferred.

  • Cognitive Behavioral Therapy for Insomnia (CBT-I): Treatment with a psychologist. This is recommended as first line treatment for insomnia by experts. CBT-I teaches skills for sleep hygiene, stimulus control, modifying sleep schedules, reframing unhelpful beliefs about sleep, and promoting relaxation. CBT-I typically lasts 4-19 sessions. At MGH we have a CBT-I protocol developed specifically for cancer survivors published in the journal Cancer (Hall et al., 2022)
  • Lifestyle: Avoid stimulants like caffeine after noon each day. Regular exercise can improve sleep quality. Avoid screens in the hours before bed.
  • Mind-Body: Relaxation practice, yoga, tai chi, guided or mindfulness meditation and hypnosis have been shown to help sleep quality.
  • Diet: 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.

Resources

Talk with your primary care provider or oncology care team to determine the best treatment for you.

Supportive Care Services

Our support programs can help patients and their families cope with the challenges of a cancer diagnosis.

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Patient Stories

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