Hearing that you or a loved one has been diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma (a form of blood cancer primarily in the lymph nodes) 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. So far, no treatments,” shared one member. “My doctor wants to watch and wait,” wrote another member diagnosed with CLL.
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.
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 more than 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 involve T cells. This form of CLL is now referred to as T-cell prolymphocytic leukemia.)
The decision to treat or to watch and wait is made by your doctor on the basis of prognostic features, such as genetic mutations in the cancer cells and overall prognosis (outlook). 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. They avoid any side effects, and their quality of life may be better.
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 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. 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.
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.
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 is staged, 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.
If you have not yet undergone genetic testing (also called cytogenetic testing) for your cancer cells, the watchful waiting period 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 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’s 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:
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.
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 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:
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 they start 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.”
Treatment options can be confusing. The National Comprehensive Cancer Network offers guidelines that describe treatment options for different circumstances. Treatments 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.
|First-Line Treatment Options for CLL/SLL|
|Genetic Mutation in Cancer Cells, Other Factors||Treatment Options|
|17p and/or TP53 mutations are present||
|No 17p or TP53 mutations, older age, poorer health|
|No 17p or TP53 mutations,
|IGHV mutation is present||
CLL: Chemotherapy and Drug Therapy. Leukemia & Lymphoma Society. Accessed June 14, 2022 from https://www.lls.org/leukemia/chronic-lymphocytic-leukemia/treatment/chemotherapy-and-drug-therapy
Chemotherapy is no longer the only treatment for CLL/SLL. Newer treatments include oral medications that may be good options for some people.
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 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: “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:
If you find stress, anxiety, or depression affect 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!”
MyLeukemiaTeam is the social network for people living with leukemia, including CLL/SLL. Here, 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 MyLeukemiaTeam.