Chronic lymphocytic leukemia (CLL) has a high survival rate but isn’t fully curable. Instead, the goal of treatment is to stop cancer progression.

Once CLL is stable, doctors monitor your health so they can respond with new treatment if the cancer returns.

Leukemia can go into remission. Partial remission is usually defined as a measurable cancer reduction of at least 50%. Complete remission is when cancer is no longer detectable when tested.

However, even in complete remission, a few CLL cells may remain, which makes the cancer likely to recur.

It may be a while before that happens though since CLL can be slow-growing. Some people live for years after their CLL diagnosis before they need treatment. Others experience post-treatment remission that lasts for years.

If you live with CLL, it helps to prepare for life after cancer treatment.

A survivorship plan is usually the same document as the treatment plan, which you would get from your oncologist at the end of your treatment in the transition back to your primary care doctor. These plans often include a summary of your diagnosis, the treatment you received, and any major procedures.

A survivorship care plan can act as a roadmap for your post-treatment follow-up care. It tracks information such as:

  • how often you should schedule checkups
  • tests your doctor might order to monitor your recovery
  • possible long-term effects from your cancer treatment
  • suggestions for healthy lifestyle strategies

The American Society of Clinical Oncology (ASCO) has developed the ASCO Cancer Treatment Plan and the ASCO Survivorship Care Plan templates in collaboration with the American Cancer Society.

You can find these forms and instructions for their use here. It’s important to note that they’re not intended to be a complete medical record but rather an organizational tool.

Sometimes, cancer returns during remission. This means you need to resume treatment until your CLL is stabilized.

Signs of a possible CLL relapse include:

  • extreme fatigue
  • unintentional weight loss
  • fever without infection that lasts longer than 2 weeks
  • night sweats that last longer than one month
  • abnormal lab tests
  • enlarged liver
  • swollen lymph nodes
  • enlarged spleen, causing a feeling of fullness
  • bone pain

Your doctor can run tests to determine whether your new symptoms are connected to a CLL relapse and not from another cause.

Even if you don’t have symptoms, your healthcare team will monitor your condition. If tests indicate that your CLL is recurring, you can discuss further treatment options.

During your recovery, your doctor may perform regular:

  • physical examinations
  • blood tests
  • imaging tests

Your follow-up care may include help with managing long-term treatment side effects, which can include:

  • cognitive issues
  • soft tissue, joint, and bone problems
  • gastrointestinal issues
  • fatigue
  • emotional upset
  • cardiac issues
  • hormone changes
  • lung damage
  • lymphedema (abnormal soft tissue fluid buildup)
  • nerve damage

Side effects can vary between people and depend on the type of treatment you’ve had.

Your doctor will also monitor you for the occurrence of new types of cancers (like lung, skin, or colon cancer) that sometimes follow CLL.

Once you’ve completed your CLL treatment, you join the estimated 16.9 million (as of 2019) cancer survivors in the United States.

When you live with chronic cancer, remission doesn’t mean a return to your pre-cancer days. Instead, it’s a post-treatment chapter in your life.

Your new “normal” may include the desire to prioritize your health, a feeling shared by many cancer survivors. This can motivate beneficial lifestyle changes like smoking cessation, improved nutrition, and a revamped exercise routine.

As you adjust to no longer having frequent contact with your care team, you may experience a range of emotions ranging from a new appreciation for life to feelings of fear and vulnerability.

It helps to understand that having these emotions are normal. It can be helpful to consider different ways to get as much emotional support as possible.

The fear of recurrence is something that many CLL survivors share. Some people may even experience depression. For some, this fear of recurrence is constant. For others, it ebbs and flows, especially around the time of scans or tests to detect a recurrence.

Health anxiety often eases as time passes, and there are ways that you can make coping a little easier:

  • Some oncology clinics have survivorship clinics or groups. Ask your oncology team if those resources exist at your center.
  • Connect with your primary care physician or other clinical teams with whom they will have regular contact. Ask them questions and let everyone know of your concerns.
  • Acknowledge your emotions and share them with people you trust, like family and friends.
  • Attend counseling sessions with a mental health professional.
  • Prioritize self-care with nutrition, exercise, and restorative sleep.
  • Be proactive about reducing stress in your life.
  • Connect with people who share your experience, such as through support groups.

The American Cancer Society hosts the Cancer Survivors Network, which is a peer support community for people living with cancer.

ASCO has a free, downloadable booklet called Cancer Survivorship that offers more information about living with cancer.

CLL is treatable but not curable. Instead, you live through it with close monitoring from your care team.

CLL is slow growing, and some people stay in remission for years. However, it’s important to speak with your doctor if you notice any new symptoms in case you’re experiencing a cancer recurrence.

Along with monitoring for CLL recurrence, your follow-up care can include managing long-term side effects from the treatment you’ve had.

It’s understandable to experience anxiety and depression when you live with chronic cancer. Taking steps like prioritizing self-care and seeking mental health support can make coping easier.