Surviving cancer: What to expect after the diagnosis

By Nicole Brudos Ferrara

Everyone who has ever heard a health care professional say "you have cancer," experiences the diagnosis differently. Even the definition of what constitutes surviving cancer varies from person to person.

"Some people think of survivorship as starting after cancer treatment, but I tend to think of it as starting at diagnosis of cancer and going on through the rest of life," says Kathryn Ruddy, M.D., a Mayo Clinic medical oncologist.

Nearly 17 million cancer survivors are in the U.S., according to the National Cancer Institute. How you experience life after a cancer diagnosis depends on the symptoms and side effects that come with the more than 100 types of cancer and their treatments. But these various cancers have some things in common:

Getting a cancer diagnosis, being treated for cancer and living beyond cancer are stressful situations, but there are ways to cope.

Being diagnosed with cancer can be life-changing, so it's no surprise that anxiety and emotional distress are common issues for people with cancer.

"Dealing with the diagnosis and ongoing therapies and physical side effects can cause anxiety and emotional distress. Even transitioning out of treatment can be a distressing experience. There can also be stress related to finances, including loss of work and significant medical costs," says Dr. Ruddy.

If you've been diagnosed with cancer, these ideas may help you cope:

• Learn about your cancer.
  Ask your doctor about your cancer and your treatment options. The more you learn, the more confident you'll be in making treatment decisions.
• Reach out to friends and family.
  In addition to supporting you emotionally when you feel overwhelmed, friends and family can provide practical support, such as helping take care of your home and pets if you're in the hospital.
• Talk to someone.
  Find a good listener who is willing to listen to you talk about your hopes and fears. This may be a friend or family member. The concern and understanding of a counselor, medical social worker, clergy member or cancer support group may be helpful. Ask your doctor about support groups in your area or virtual options.

"Our social workers and psychologists provide a really important type of care for our patients," says Dr. Ruddy. "Cancer is such a stressful experience that we try to engage our social workers and psychologists often and offer that to all patients. That's a key piece of care for a lot of people."

If you're struggling to cope, talk to your health care professional. Many cancer centers offer resources to support people with cancer and their families during diagnosis, treatment and life after treatment. They often provide classes and support groups, and help people locate financial assistance, lodging, transportation and other support services.

Cancer treatment comes with physical side effects, but those side effects may have treatments, too.

Cancer and cancer treatment can cause a long list of physical side effects that vary significantly, even among people receiving the same type of cancer treatment. They can include appetite loss, diarrhea, fertility issues, hair loss, nausea, nerve problems, sexual health issues, sleep problems and more. "It is so different from person to person," says Dr. Ruddy.

In her work as a breast oncologist, Dr. Ruddy sees many patients who have gone into menopause early due to cancer treatment. "One of the symptoms my patients often deal with is hot flashes. Going into menopause at age 30 comes with some pretty severe side effects: vaginal dryness, sexual dysfunction, things that come on more gradually if you go into menopause at 50 or 55."

Two of the most common side effects of cancer treatment include fatigue and pain.

"Many cancer treatments can cause fatigue," says Dr. Ruddy. "And pain is a very common side effect of chemotherapy and other parts of cancer treatment, including surgeries and radiation."

If you have side effects of any kind, ask your health care professional about them. There may be a solution. "It's really important to talk to your provider about any symptoms you're having. There are things that can be done," says Dr. Ruddy.

A number of treatments are available for cancer pain. Your options may depend on what's causing your pain and the intensity of the pain you're feeling. You may need a combination of pain treatments to find the most relief.

Cancer rehabilitation also can help people maintain and restore physical and emotional well-being during and after cancer treatment. Cancer rehabilitation specialists can help you improve endurance, strength and mobility; reduce fatigue, pain and other lingering side effects; and help you cope with anxiety, distress and other emotional issues.

Pain management and cancer rehabilitation can help people with cancer recover more quickly and more fully from cancer treatment.

Integrative oncology, which combines complementary and alternative treatments that have been researched and proven safe and effective in healing with standard cancer care, also can help people with cancer feel better. It can reduce fatigue, nausea, pain, anxiety and other symptoms that can come with cancer and cancer treatment.

Some cancer survivors experience side effects years after treatment.

Side effects of cancer treatment that become apparent after your treatment has ended are called late effects. You might experience late effects of cancer treatment years later. These late effects can come from any of the main types of cancer treatment: chemotherapy, hormone therapy, radiation, surgery, targeted therapy and immunotherapy.

Late effects vary based on treatment type and by person. Some people might not experience them at all.

If you underwent cancer treatment as a child, you may be at risk of additional late side effects. That's because children's bones, tissues and organs are growing rapidly during treatment, so cancer treatment can interfere during this critical time of growth. "Cancers that afflict children are quite distinct from those that are common in adults. So, treatments and expected long-term symptoms are not the same," says Dr. Ruddy.

As with late side effects in adult cancer survivors, late side effects in childhood cancer survivors can vary depending on the type of cancer and type of treatment. Also, the age when you were treated may determine what late side effects, if any, might be of risk to you. Review a list of possible late effects experienced by survivors of childhood cancer.

Talk to your health care professional about the late effects of your particular treatment, and report to your health care professional any signs or symptoms that concern you — even if you were treated for cancer many years ago.

Having a plan for cancer survivorship will ease the transition from active treatment to follow-up care.

As you discuss your diagnosis and treatment with your health care professional, it's important to talk about follow-up care.Dr. Ruddy suggests asking your care team these questions about life after cancer treatment:

• What kind of care will I need?
• When do I need to come back to see a health care professional?
• Which health care professional do I need to see?
• What kind of testing will I need, if any?
• From a lifestyle perspective, what can I do between those visits to recover more quickly and improve my overall health?

"These are the conversations we should have from the time of diagnosis and throughout the cancer journey, but the end of treatment is a nice time to have those conversations again to help with the transition out of a schedule of frequent visits into less frequent follow-up care," says Dr. Ruddy.

Many cancer centers are working to provide additional resources to cancer survivors, and this may include a cancer survivorship visit to develop a survivorship care plan. "Survivorship care plans summarize the care that cancer patients need following treatment. There's real value in talking through the care plan," says Dr. Ruddy.

A survivorship care plan is a complete record of your cancer history. In addition to your diagnosis and details about your treatment, it will include information on possible late- and long-term effects of treatment, recommendations on how to live a healthy lifestyle and maintain overall well-being, and information on support services, contact information for providers, and a list of recommended cancer screenings, testing and follow-up appointments.

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Sometimes cancer survivorship means a cure. Sometimes it means living with the cancer. In other cases, survivorship involves a new normal that requires adapting to the permanent side effects of cancer treatment.

Dr. Ruddy says help is available no matter what cancer survivorship means for you. "People should feel free to reach out again to clinicians. We're here for you. If you have questions, please talk to your caregivers."

Learn more

Watch this "Mayo Clinic Q&A" podcast video to hear Dr. Ruddy discuss cancer survivorship:

Also see these articles:

• "7 steps to better nutrition habits for cancer survivors."
• "Cancer and mental health: Coping with the burden of your diagnosis."
• "Cancer survivors: Care for your body after treatment."
• "Cancer survivors: Late effects of cancer treatment."
• "Cancer survivors: Managing your emotions after cancer treatment."
• "Integrative oncology: Lifestyle medicine for people with cancer."
• "Regaining sexual health after cancer treatment."
• "The importance of a cancer survivorship care plan."