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Watchful Waiting With CLL/SLL

Updated on May 21, 2021
Medically reviewed by
Mark Levin, M.D.
Article written by
Annie Keller

  • For many people diagnosed with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL), it’s recommended to “watch and wait” rather than start treatment right away.
  • People can take an active role during watch and wait by monitoring symptoms, undergoing genetic testing, and learning more about CLL/SLL and treatment options.
  • Managing stress and connecting with others living with leukemia can help those with CLL/SLL better cope with the challenges of watchful waiting.

It’s one of the most feared words in the human language: cancer. Hearing that you or a loved one has been diagnosed with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) can be devastating. Naturally, one of your first questions will be what you can do to treat it. But the answer might be nothing, at least for now. Since most of us associate cancer with serious illness and death, the idea of just sitting and waiting might seem dangerous.

Many MyLeukemiaTeam members diagnosed with CLL/SLL have reported that they are not yet under treatment. “I have CLL, diagnosed in November 2019. So far, no treatments,” shared one member. “I have T-cell CLL, diagnosed December 2017. My doctor wants to ‘watch and wait,’” wrote another.

Watchful waiting can sometimes be a worrying experience for those living with CLL/SLL. Gaining a better understanding of watchful waiting can help you remain positive and stay involved in your health care during this period.

What Is Watchful Waiting?

Watchful waiting, sometimes referred to as “watch and wait” or “active surveillance,” is a common initial approach for CLL/SLL. Early treatment or aggressive chemotherapy, when it’s not indicated, doesn’t mean you’ll have a better outcome. To understand why doctors sometimes advise waiting to treat, it’s important to understand how CLL/SLL progresses.

In 95 percent of people with CLL/SLL, blood stem cells in the bone marrow undergo genetic mutations that cause a particular type of white blood cell — called a B lymphocyte or B cell — to develop abnormally. (Only about 1 percent of cases of CLL/SLL involve T cells rather than B cells.) In chronic forms of leukemia, abnormal cells grow more slowly and generally do not interfere with the production of healthy white blood cells, red blood cells, and platelets. A blood cell count may reveal there are fewer of these cells than normal, but since they are still functioning, the symptoms will be minimal. In fact, many people with CLL/SLL go without noticeable symptoms for years.

In most cases, prognosis is no different in people with CLL/SLL who undergo watchful waiting than for those who start early treatment, and their quality of life may be better. Your doctor will advise you to begin treatment or to watch and wait based on the genetic features of your cancer and your prognosis.

Monitor Your Condition and Stay Connected

Watchful waiting doesn’t just mean sitting around and hoping nothing goes wrong. It is important to be proactive. One of the most important things to do is to closely monitor your condition. Regular blood counts and doctor visits will help make sure that if your condition starts to progress, it will be quickly noticed and assessed.

On your own, be sure to keep track of any new or worsening symptoms you experience. Bring these up with your doctor, even if you’re unsure whether they’re connected with CLL/SLL. Communication with your doctor is vital. Your doctor should be able to answer your questions about CLL/SLL in a way you can understand. If they aren’t willing or able to do so, you have the right to seek a second opinion from another doctor.

Staying connected socially with others is also important, whether it’s with family members, friends, or even members of a community such as MyLeukemiaTeam. A support group of people who have already been through the same thing can ease your worries. They can also share experiences that help you anticipate what might come up later.

Learn More About CLL/SLL

The watchful waiting period is also an opportunity to improve your understanding of your condition. There is a great deal of information available about chronic lymphocytic leukemia and small lymphocytic lymphoma, including treatment options and clinical trials. Not all sources online are reliable, so choose wisely.

Trustworthy sources for information about leukemia include:

You can also ask your doctor what sources they recommend for information about CLL/SLL.

Get Genetic Testing for Cancer Cells

If you have not yet undergone genetic testing for your cancer cells, watchful waiting is a perfect time to ask your doctor about this important step. This kind of testing isn’t about examining the genetic code you inherited from your parents. The goal of genetic testing (also called cytogenetic testing) in CLL/SLL is to examine the genetic code of the cancer cells for specific mutations. Different mutations are considered markers for higher or lower risk of CLL/SLL progression. Cytogenetic testing is performed using a blood or bone marrow sample.

The results of cytogenetic testing can help determine which treatment will be most effective for your CLL/SLL. Cytogenetic testing can also help doctors recommend when it is best to start treatment. Certain genetic markers are associated with a higher risk for cancer progression and may lead the doctor to recommend starting treatment earlier.

Genetic markers are often described in terms of a deletion — meaning part of a gene is missing. Here are some examples of genetic markers and how they are associated with risk in CLL/SLL:

  • Partial deletion of chromosome 11 or 17 (sometimes called 11p or 17p) can indicate treatment should be undertaken more quickly than with a partial deletion of chromosome 13 (13p).
  • Mutation of IGHV (immunoglobulin heavy chain variable region) in CLL cells suggests a better prognosis, and treatment may not need to be started as quickly.
  • TP53 mutation, especially when combined with the partial deletion of chromosome 17, indicates treatment may need to be more aggressive.
  • Trisomy 12, when cells have three copies of chromosome 12 instead of two, can be associated with the need for more aggressive treatment.

The National Comprehensive Cancer Network, an alliance of 30 leading cancer centers, recommends the fluorescence in situ hybridization (FISH) test to detect the potential deletion and trisomy of chromosomes, molecular analysis to check for IGHV mutation, and DNA sequencing to examine the TP53 gene. Recommendations also include getting checked for both TP53 and 17p deletion — some clinics may only check for one of these genetic markers, but not the other.

When Does Watchful Waiting End?

There are several potential points when watchful waiting may end and treatment for CLL/SLL begins. If a follow-up visit to the doctor shows swelling in the lymph nodes or spleen, your condition may be progressing. CLL/SLL symptoms such as night sweats, fatigue, weight loss, and fever may also indicate it’s time to begin treatment. Blood test results can also show that cancer is progressing and treatment is needed.

Blood test results that may indicate progression include:

  • Lymphocyte count doubling within six months
  • Anemia (low red blood cell count)
  • Thrombocytopenia (low platelet count)

Regardless of other signs or symptoms, if your genetic biomarkers suggest it is likely your CLL/SLL will progress, your doctor may recommend starting treatment earlier.

The timeline for watchful waiting can vary. “l was diagnosed in my 50s. Watch and wait for nine years,” said one MyLeukemiaTeam member. Members often discuss when their doctor recommended they start treatment. One member said, “I would have blood work [every month]. Every time, my WBC [white blood cells] would be higher. When it hit 190 and my spleen got very enlarged, it was time for options.”

Treatments for CLL/SLL

Treatment options for CLL/SLL can be confusing. Treatments are recommended based on factors including your age and health and which genetic biomarkers are found in your cancer cells.

Chemotherapy is no longer the only treatment for CLL/SLL. Newer treatments include oral medications that may be good options for some people. View our discussion guide for help talking to your doctor about treatment options.

Coping With Watchful Waiting

While some MyLeukemiaTeam members refer to active surveillance as “watch and worry,” many members are quick to say they are happy to watch and wait for a very long time. “I've been in ‘watch and wait’ since 2007. Hope to live the rest of my life watching and waiting,” one member reassured another. “We must encourage and pray for [new members who are on watch and wait]!” said another member, who has been in watch and wait since 2002.

Stress is common for people living with cancer, and high stress levels can lead to depression and worsening symptoms. “Stress is not good for your condition. My hematologist often asks about the stresses in my life,” shared one MyLeukemiaTeam member. Another member mentioned stress about the future becoming stress for the future. “Trying not to worry about tomorrow, but I spent my whole life planning for tomorrow.”

Staying connected to others and finding effective coping mechanisms can reduce stress and help improve quality of life. Stress management techniques that may help include:

  • Meditation or prayer
  • Exercise
  • Counseling, such as talk therapy
  • Support groups for people with cancer
  • Medications, such as antidepressants or antianxiety drugs​​

If you find stress, anxiety, or depression are impacting your quality of life, talk to your doctor. They can help you find ways to manage the psychological challenges of living with CLL/SLL.

As one MyLeukemiaTeam member put it, “Continue seeing your oncologist and having blood work done. Just try to keep a positive attitude. Believe me, it helps!”

Are you in watchful waiting for CLL/SLL yourself? Do you have any tips for those dealing with stress or uncertainty? Comment below or start a conversation on MyLeukemiaTeam.

Mark Levin, M.D. is a hematology and oncology specialist with over 37 years of experience in internal medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Annie Keller specializes in writing about medicine, medical devices, and biotech. Learn more about her here.

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