Cancer Survivorship

What is cancer survivorship?

Having cancer may feel like running a hard race toward a finish line. People with cancer may keep the line in mind as they do their best to power through cancer’s challenges. Finishing treatment, however, may not always mean they’ve crossed it.

Some people are cancer-free after their initial treatment but don’t feel free from cancer. Other people still see the finish line, but they keep running into cancer. For others, the finish line they reach is very different from the one they expected.

That’s where cancer survivorship comes in. Cancer survivorship programs carry people through cancer, helping them to live as long as they can and with the best possible quality of life.

Who is a cancer survivor?

Thanks to early detection and newer treatments, more people are living longer with cancer. They’re also living with a range of issues that surface at different times. As a result, cancer survivorship experts have different ideas about what survivorship means.

Some think it has to do with where you are in your treatments, while others approach it based on the stage of cancer you have. According to the National Cancer Institute (NCI), survivorship starts the day someone receives a cancer diagnosis. It continues during and after treatment and on through the end of life.

Some experts see survivorship in three phases:

• Acute survivorship starts with diagnosis and ends when cancer treatment ends.
• Extended survivorship may include the months after treatment ends.
• Permanent survivors are people who are cancer-free for several years.

Other experts tie survivorship phases to cancer stages and recommend different support for each stage. In that scenario, there are three phases:

• Phase one includes people being treated for early-stage cancer who are likely to be cured.
• Phase two includes people with cancer that’s spread (metastasized).
• Phase three includes people with advanced cancer.

There’s no debate about the growing need for cancer survivorship support. According to the NCI, as of 2022, just over 18 million people in the United States are cancer survivors, meaning they have or had cancer. An estimated 8 million people are living 10 or more years after diagnosis. Over the next 10 years, experts anticipate a 24% increase in the number of people living with cancer.

What kinds of cancers do most cancer survivors have?

Women and people assigned female at birth (AFAB) who have breast cancer represent the largest group of cancer survivors. Men and people assigned male at birth (AMAB) who have prostate cancer represent the next largest group. People with these types of cancer also represent the highest survival rates 10 years after diagnosis. More than 98% of men and people AMAB and more than 84% of women and people AFAB are alive 10 years after diagnosis.

Ten-year survival rates for other cancer types range from more than 50% for people with colorectal cancer and gynecologic cancers to more than 70% for people with melanoma.

What are the most common issues facing people who are cancer survivors?

Most of the time, people are relieved to complete cancer treatment. Some people, though, got used to planning their days around treatment sessions and having regular contact with their healthcare providers. They’re thrilled to hear the “all-clear” but at a loss without their routine.

Many people — including people with cancer and their friends and family — assume the end of cancer treatment means the end of cancer-related concerns. Understandably, they and their families want to move on from cancer. More than anything, they want to get back to the lives they had before cancer.

But studies show people with cancer often can’t leave it behind. In general, people who are cancer survivors cope with a range of physical, emotional or psychological issues and social issues. Some people even develop cancer-related post-traumatic stress disorder.

Common physical issues

People with cancer may have chronic issues or issues that crop up months or years after treatment is completed. These are late effects. Examples may include:

• Second cancer: A second cancer is a new cancer. People who have second cancers may have cancer in the same organ or area of their body as their first cancer, but it’s a different type from what they had before. They may also have cancer in different areas of their bodies. Second cancers are different from cancer that comes back (recurrent cancer). Second cancers are more common as more people live longer with cancer.
• Pain: This can be from cancer or cancer treatments. One study found that 39% of people who completed cancer treatment had chronic pain.
• Cancer fatigue: People may have extreme fatigue from treatment that continues once treatment is completed.
• Cognitive dysfunction (chemo brain fog): People who receive cancer treatment may have trouble making decisions, multitasking or memory issues.
• Lymphedema (swelling of arms or legs): Breast cancer treatment may cause lymphedema.
• Changes in sexual function: People treated for breast or prostate cancer may have trouble having sex as they did before cancer treatment.
• Peripheral neuropathy: Some cancer treatments cause nerve issues such as numbness and tingling.
• Bone loss: Chemotherapy, radiation therapy and other cancer treatments may affect bone density.
• Skin changes: Some cancer treatments cause persistent skin rashes.

Common emotional/psychological issues

• Fear of cancer recurrence (FCR): Studies show the most common and persistent post-treatment stress is worrying that cancer will come back.
• Anxiety: It’s understandable and common to feel anxious about cancer. Anxiety happens when people can’t stop worrying about their situation. Some people develop “scanxiety”. This is an overwhelming pre-test sense of dread. Some people may feel stuck in an emotional limbo where they live from one set of test results to the next, never feeling completely confident that they’re cancer-free.
• Depression: Depression in cancer survivors may include feeling hopeless despite having completed cancer treatment or feeling as if they’re a burden to family and friends.
• Issues with body image or appearance: Cancer and cancer treatment often change your appearance. Maybe you’ve lost a lot of weight or you’re very pale from chemotherapy. Looking different from how you did before may make you feel self-conscious and anxious.

Social issues

• Family relationships: Cancer diagnosis and treatment typically put pressure on family relationships. Many times, family members are first in line to help when someone in the family has cancer. While they were glad to help, some family members may not understand that completing cancer treatment doesn’t mean cancer is “over” and that their family member still needs their help.
• Work relationships: Cancer survivors typically want to return to work but are concerned their new normal won’t fit into workplace routines and relationships.
• Stigma:Some people wonder if being a cancer survivor marks them as someone still at high risk of cancer.
• Cancer costs: Many cancer survivors worry about paying for follow-up appointments and treatments or for new housing or transportation needs.

Cancer Survivorship Support

What healthcare providers help with cancer survivorship?

Like cancer treatment, cancer survivorship support is a team effort. Your cancer survivorship team may include:

• Oncologists: These doctors managed your cancer treatment. People with recurring or advanced forms of cancer typically see their oncologists more frequently than people treated for early-stage cancer do.
• Primary care providers: If treatment eliminated cancer signs and symptoms, you may work with your primary care provider more frequently than your oncology team.
• Psychologists: People with cancer often have depression and anxiety. Psychologists with specific experience in helping people with cancer may offer counseling and other therapies.
• Oncology social workers: Social workers help people cope with cancer survivorship issues such as adjusting to lifestyle changes. They may also refer people to national and regional resources for cancer survivorship.
• Oncology-certified dietitians: Some people with cancer have trouble eating even after completing treatment. These healthcare providers help you establish a healthy diet.

Many healthcare organizations offer integrated cancer survivorship programs that coordinate resources such as occupational or exercise therapy. Sometimes, healthcare providers offer cancer survivorship programs tailored to specific cancers and issues.

What can I expect from life after cancer?

In general, cancer survivorship centers on your care plan. Your care plan typically includes information about the type of kind of cancer for which you’re treated, your cancer treatments and recommendations for checkups and follow-up tests. Survivorship care plans vary based on the type of cancer someone has or had, but in general, survivorship care plans include:

• Checkup schedule: This will be different based on your situation. Many people see their healthcare team every three to four months for the first two or three years after completing treatment and less frequently after that. That said, you should contact your healthcare provider anytime you notice changes in your body.
• Tests to expect: You may have blood tests and imaging tests.
• Potential late effects: Like your checkup schedule, any potential late effects will be different based on your situation. Not every cancer type and/or treatment has late effects.
• Reminders: Just like diagnosis and treatment, you’ll want to remember all the information you need to share with your healthcare provider. For example, your healthcare provider should know about any changes in your biological family medical history or new supplements you’re taking.
• Healthy living suggestions: These may be details on healthy food choices and exercise.
• Resource recommendations: Your cancer survivorship care plan may include information about national and regional support groups where you can connect with people living with cancer.

Living With

Will I always need cancer survivor support?

That depends on your situation. Some people complete cancer treatment and, after time, may not need regular checkups and follow-up tests. They may be flourishing in their post-treatment life. People with ongoing cancer, second cancers or advanced cancers need continuous medical follow-up and different survivorship support.

I’m a cancer survivor. What can I do to help myself?

You can make lifestyle changes that may reduce your risk of developing a recurring or second cancer. Those changes include:

Avoiding risk factors

Risk factors are activities and lifestyle choices that increase your cancer risk. Some examples include:

• Using tobacco: If you smoke, try to stop. You can improve your overall health by giving up tobacco and by avoiding second-hand smoke.
• Drinking alcohol: Alcohol increases your risk of developing several types of cancer. Consider limiting how much alcohol you drink or giving up alcohol.
• Getting too much sun: Everyone should try to avoid sun exposure that could cause skin cancer. You may take medication that makes you more sensitive to sun exposure. Ask your healthcare provider about the right sunscreen for your situation and other ways to protect your skin.

Establishing a healthy diet

It’s important to eat well after cancer treatment, including practicing food safety. Some cancer treatments affect people’s immune systems and increase their risk of food poisoning. Some people have trouble eating after treatment. If that’s your situation, ask to speak with a dietitian. They’ll discuss your issues and come up with alternate foods for you to try.

Develop an exercise routine

There are many benefits to regular exercise. Exercise can help with:

• Depression and anxiety.
• Rebuilding strength and endurance.
• Boosting self-confidence and self-esteem.

Talk to your healthcare provider before tackling a new exercise routine. They may have recommendations based on your situation that help you get moving without putting yourself at risk of injury.

How does cancer survivorship planning help me?

You can shape your cancer survivorship to be whatever you need it to be. For example, your cancer survivorship plan could emphasize healthy living after cancer treatment. You could get guidance on sharing information about your condition so people understand that you appreciate their concern and help as you move into your life after cancer.

Cancer survivorship is about your well-being during your cancer journey, particularly if you’re at the end of your journey.

If you have advanced cancer, cancer survivorship plans and conversations may emphasize managing your symptoms. Cancer survivorship conversations may shift to the kind of care you’d like toward the end of your life. For example, you may want to ask about palliative care or hospice. In palliative care, you receive care that complements your cancer treatment to improve your quality of life. Hospice is end-of-life care that helps you live your final days as you choose.

A note from Cleveland Clinic

Cancer changes the lives of the people it touches. Cancer survivorship helps people learn to live with those life changes. By emphasizing health and wellness from diagnosis through end-of-life, cancer survivorship helps people with cancer preserve a good quality of life. Your healthcare providers understand how cancer can change your life. If you’re receiving cancer treatment or have completed treatment, your healthcare provider will create a cancer survivorship plan tailored to the changes you may encounter. They’ll also support you throughout those changes.