Learning that you or a loved one has chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) can be a shock. It may be confusing to hear that your cancer doesn’t need to be treated yet. While early treatment improves outcomes for many types of cancer, this isn’t true for CLL/SLL.

Since most of us associate cancer with serious illness and death, the idea of just sitting and waiting might seem dangerous. Gaining a better understanding of watchful waiting can help you remain positive and stay involved in your health care during this period.

You can also start learning about treatment options for CLL/SLL. This may help you decide — in partnership with your doctor — when, if at all, to begin treatment.

What Is Watchful Waiting?

Watchful waiting, sometimes referred to as “watch and wait” or “active surveillance,” is a common initial approach for CLL/SLL and some other types of cancer. 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 CLL/SLL, blood cells in the bone marrow undergo genetic mutations that cause white blood cells to develop abnormally. Which type of white blood cell becomes cancerous determines the type of leukemia you have. In more than 95 percent of people with CLL/SLL, the cell that becomes cancerous is the B lymphocyte or B cell.

The decision to treat or to watch and wait is made by your doctor based on prognostic features, such as genetic mutations (changes) in the cancer cells and overall prognosis (outlook). In fact, many people with CLL/SLL go without noticeable symptoms for years.

In some cases, the prognosis is no different in people with CLL/SLL who undergo watchful waiting than for those who start early treatment. They avoid any side effects, and their quality of life may be better.

Monitor Your Condition and Stay Connected

Watchful waiting doesn’t just mean sitting around and hoping nothing goes wrong. It’s important to be proactive and closely monitor your condition. Regular blood counts and doctors’ 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. Discuss these with your doctor, even if you’re unsure whether they’re connected with CLL/SLL. Communication with your doctor is vital. They 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.

CLL watch-and-wait fatigue is real. Watchful waiting can sometimes be a worrying experience for those living with CLL/SLL. 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 watch-and-wait period is also an opportunity to improve your understanding of your condition. A great deal of information is available about chronic lymphocytic leukemia and small lymphocytic lymphoma, including how it’s staged, treatment options, and clinical trials. Ask your doctor what sources they recommend for information about CLL/SLL.

Ask About Genetic Testing for Cancer Cells

If your cancer cells haven’t been tested for genetic mutations, the watchful waiting period is a perfect time to ask your doctor about this important step. This kind of genetic testing isn’t about examining the genetic code you inherited from your parents. The goal 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. Genetic testing for CLL cells is performed using a blood or bone marrow sample.

The results of genetic testing for cancer cells can help determine which treatment will be most effective for your CLL/SLL, in case you need it. It can also help doctors know when to recommend starting treatment. Certain genetic markers are associated with a higher risk of cancer progression and may lead the doctor to recommend starting treatment earlier. ​

When Does Watchful Waiting End?

There are several potential points when watchful waiting may end and cancer treatment begins. If a follow-up visit to the doctor shows swelling in the lymph nodes or an enlarged 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 tests that show a drop in the levels of certain blood cells may indicate progression. These include:

• Lymphocyte count doubling within six months or low white blood cells that don't respond to steroids
• Anemia (low red blood cell count)
• Thrombocytopenia (low platelet count)

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

The watch-and-wait timeline can vary. “l was diagnosed in my 50s. I was on watch and wait for nine years,” said one MyLeukemiaTeam member.

Members often discuss when their oncology specialist recommended starting treatment. One member said, “I would have blood work every month. Every time, my 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 are recommended based on factors including your age and health and which genetic biomarkers are found in your cancer cells. Your doctor may recommend medications or combinations not listed here, based on the details of your condition. It’s important to keep in mind that treatment is not a cure for CLL, but it can slow the progression of cancer growth.

Chemotherapy is no longer the only treatment for CLL/SLL. Newer treatments include oral drugs that may be good options for some people. ​Read more about specific medications in this list of treatments for leukemia.

Coping With Watchful Waiting

While some MyLeukemiaTeam members refer to watchful waiting 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 I was diagnosed. 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.

Stress is common for people living with cancer, and high anxiety 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: “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 affects your quality of life, talk to your doctor. They can help you find ways to manage the psychological challenges of living with CLL/SLL. Read more about ways to live better with CLL.

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!”​

Find Your Support Team

MyLeukemiaTeam is the social network for people living with leukemia, including CLL/SLL. On MyLeukemiaTeam, more than 17,000 members come together to offer advice, lend support, and share their stories.

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