Life After CLL or Lymphoma: Survivorship Tips for Better Health

In a recent HealthTree webinar, survivorship expert Dr. Ellen Mullen explained how follow-up care can help people with chronic lymphocytic leukemia (CLL) or lymphoma stay healthy, manage long-term side effects, and improve their quality of life. 

Survivorship starts at diagnosis

Many people think survivorship begins after treatment ends. It actually starts the day you are diagnosed.

"An individual is considered a survivor from the time of diagnosis through the balance of life. Survivors include those living with cancer and those free of cancer," said Dr. Mullen during the webinar.

This includes people who are in watch-and-wait, receiving treatment, or in remission after treatment. As more people live longer with cancer, survivorship care becomes an important part of overall health. 

It is normal to have questions after treatment

Many people feel nervous when they stop treatment or begin having fewer follow-up visits.

"Patients are so used to coming to the clinic once a week, twice a week, once a month, every three months. Now they're being told they only need to come once a year, and this kind of gives them anxiety. It's kind of like a separation anxiety from their oncologist," said Dr. Mullen.

You may wonder:

• How will I know if the cancer comes back?
• Why don't I need as many scans?
• Who should I call if I notice new symptoms?
• Who will manage my other health problems?

These questions are common. Your healthcare team can explain what follow-up care is right for you and when to report new symptoms.

Follow-up care helps protect your long-term health

Follow-up visits do more than look for signs that cancer has returned. They also help your healthcare team check for health problems that may appear months or years after treatment.

Depending on the treatment you received, your care team may watch for:

• Heart problems
• Lung problems
• Thyroid problems
• Bone loss
• Early menopause
• Low blood counts
• Low immunoglobulin levels, also called antibodies, which help fight infection
• Secondary cancers 

Not everyone needs the same tests. Your healthcare team will recommend the screenings that fit your treatment history.

Ask for a survivorship care plan

One of the most helpful tools discussed during the webinar was a survivorship care plan. This document often includes:

• Your diagnosis
• The treatments you received
• Treatment dates
• Possible long-term side effects
• Recommended screening tests
• Your follow-up schedule

Keep a copy for yourself. Share one with your primary care provider so everyone involved in your care understands your treatment history.

Small healthy habits can make a difference

Healthy habits cannot prevent every health problem, but they can support your overall well-being after treatment.

Simple steps include:

• Stay active, even if you begin with short walks.
• Eat a balanced diet with enough protein.
• Drink plenty of water.
• Do not smoke or use tobacco.
• Limit alcohol.
• Stay up to date on routine cancer screenings and non-live versions of vaccines.

If eating is difficult or you are losing weight, ask your healthcare team if meeting with a registered dietitian would help. 

Recovery takes time

Recovery is different for everyone. "It's not going to happen right away. It's going to take time. It's going to take weeks, sometimes even months, sometimes even a year," said Dr. Mullen.

It is normal for your energy to return slowly. But if fatigue continues, tell your healthcare team. Problems such as anemia, thyroid disorders, vitamin deficiencies, or sleep apnea may also cause low energy and can often be treated.

Your emotional health is also important. If worry, sadness, or stress makes it hard to work, care for yourself, or enjoy daily life, ask about counseling or other support services. 

Key takeaways

Survivorship care is an important part of living with CLL or lymphoma. Regular follow-up visits, healthy habits, and knowing your treatment history can help you manage your long-term health. Ask questions, stay connected with your healthcare team, and let them know if you notice new symptoms or concerns.