Receiving a diagnosis of non-Hodgkin lymphoma for yourself or a loved one can be frightening. Many people immediately start wondering about treatment options. However, for some people, a doctor may choose a watch-and-wait approach instead of starting treatment right away. Whether someone with NHL needs immediate treatment or not depends on which type of NHL they have.
There are more than 60 types of non-Hodgkin lymphoma. About 60 percent of lymphoma cases are classified as aggressive. These are usually treated immediately and will progress quickly without treatment. Most of the other 40 percent of NHL cases are classified as indolent or low-grade lymphomas, which typically grow much more slowly and may not require treatment right away.
There are several types of indolent lymphomas, including:
Follicular lymphoma is the most common type of indolent NHL, making up between 20 percent and 30 percent of all NHL cases. Follicular lymphoma is a slow-growing cancer that forms in a type of white blood cell called B lymphocytes (also known as B cells). While it can cause swollen or enlarged lymph nodes, many people don’t have any symptoms at the time of diagnosis. Due to its slow growth, people may live many years with the disease.
Chronic lymphocytic leukemia/small lymphocytic lymphoma, also called CLL/SLL, makes up around 6 percent of NHL cases. In 95 percent of people with CLL/SLL, blood stem cells in the bone marrow undergo genetic mutations that cause B cells to develop abnormally. A small percentage of CLL/SLL cases involve T cells, another type of white blood cell, 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. Many people with CLL/SLL go without noticeable symptoms for years.
Mantle cell lymphoma also makes up about 6 percent of NHL cases and is caused by cancerous B cells invading part of the lymph node called the mantle zone. While the cancer is typically slow-growing, it is often not discovered until the advanced stages.
Waldenström’s macroglobulinemia, also called lymphoplasmacytic lymphoma, also arises from abnormal B cells. Cancer cells can be found in both the blood plasma and the lymph nodes. These cells make a protein called macroglobulin, an antibody that builds up in both the organs and lymph nodes. It is believed that certain DNA changes in lymphocytes lead to Waldenstrom’s macroglobulinemia.
Marginal zone lymphomas are a group of low-grade lymphomas, making up about 8 percent of all NHL cases. There are three subtypes of marginal zone lymphomas, all of which involve abnormal B cells, but they develop in different locations.
The most common type of marginal zone lymphoma is mucosa associated lymphoid tissue (MALT) lymphoma. It begins in the mucosa, a soft, moist tissue that lines many organs and some body parts, like the nose and mouth. MALT lymphoma usually begins in the stomach (gastric) area. However, it can also start in other areas, which is called nongastric MALT lymphoma.
Nodal marginal zone lymphoma makes up about 10 percent of marginal zone lymphoma cases. It affects the lymph nodes directly, usually in the head or neck.
Splenic marginal zone lymphoma makes up 20 percent of marginal zone lymphoma cases. The spleen, bone marrow, and blood are all places where abnormal B cells build up in this type of lymphoma.
Doctors often recommend people with indolent lymphomas delay treatment and enter a period of watchful waiting. Watch and wait, also called active surveillance or active monitoring, may be recommended in cases of indolent non-Hodgkin lymphoma when:
During watchful waiting, your condition will be regularly monitored to see if symptoms begin.
Waiting may sound scary — if you know that you or someone close to you has a potentially fatal condition, the last thing you may want to do is wait. In reality however, for many cases of indolent NHL there is no benefit to beginning treatment earlier. It is often preferable to keep a close eye on disease progression instead of going through unnecessary therapies and side effects.
Some MyLymphomaTeam members acknowledge that watchful waiting may cause feelings of unease, even when it’s the best choice. “I understand the philosophy of ‘Why treat something when there’s nothing to treat?’ but that doesn’t lessen the apprehension!” wrote one member.
“I'm doing watch and wait. It just doesn't feel right. I feel like I should be doing something,” another member said. Connecting with a support group, either online or in person, may help ease those worries.
While you may not be undergoing active treatment for NHL, there are ways to be proactive while watching and waiting.
Learning more about the type of lymphoma you or your loved one has can be empowering. There are many trustworthy sources of information about the different types of NHL and their potential symptoms and treatment options. The resources below can provide you with accurate and valuable information:
Your doctor may also be able to recommend other sources of information. If your doctor doesn’t seem to be taking your concerns seriously or cannot answer your questions, you’re always free to get a second opinion.
Cancer cells carry specific genetic mutations, or biomarkers, that are indicators of disease. Knowing which genetic biomarkers your lymphoma cells have can tell doctors a lot about how quickly your lymphoma is likely to progress and which treatment options are likely to be effective. Genetic testing can look at gene mutations or abnormal chromosomes, and may be done using blood or bone marrow samples.
For people with CLL/SLL, genetic analysis should screen for the following biomarkers:
For those diagnosed with mantle cell lymphoma, one genetic mutation has been noted in most cases. It is a translocation, or rearrangement, of chromosomes 11 and 14. If this translocation is detected, mantle cell lymphoma is easier to diagnose. The TP53 mutation mentioned above as a CLL/SLL marker may also be present in mantle cell lymphoma. As in cases of CLL/SLL, the presence of the TP53 mutation may indicate potential treatment resistance.
For those people with marginal zone lymphoma, there are several genetic biomarkers to test for. These include:
Most people with Waldenström’s macroglobulinemia have a particular mutation of a gene called MYD88. About 30 percent of people will have another mutation of the CXCR4 gene.
The “watching” will be partially your responsibility, as you will need to track any potential symptoms of NHL and report them to your doctor. Symptoms to take note of include enlarged lymph nodes, chills, fatigue, shortness of breath, a swollen belly, frequent infections, and easy bruising.
One particular set of symptoms known as “B symptoms” is important to look out for. B symptoms include:
It may help to keep a journal detailing any potential symptoms you notice over time. Any changes or new symptoms should be communicated to your doctor. Your doctor will also monitor clinical signs of progression, which vary for each type of NHL, with blood tests.
Many potential symptoms of NHL can also be associated with many other conditions and may not be a sign of lymphoma progression. Your doctor will be able to interpret the source of any symptoms you experience.
There are many points when your doctor may recommend beginning treatment. Experiencing the symptoms described above may indicate to your doctor that your non-Hodgkin lymphoma is progressing. The results of blood tests may also tell your doctor that it’s time to start active treatment.
Apart from symptoms and specific genetic biomarkers, there may be other indicators of progression for each type of indolent NHL. These include:
When your doctor recommends you start treatment for NHL, you will begin a conversation about your treatment options. This doctor discussion guide can help you talk to your doctor about your personal values, priorities, and goals for lymphoma treatment.
Read more about oral therapies versus chemotherapy for indolent types of NHL.
If your condition progresses beyond the watch and wait stage, clinical trials may be an option for treating your non-Hodgkin lymphoma. Clinical trials contribute to medical knowledge about NHL and may provide access to new, effective treatments. Participants in clinical trials are protected by the process of informed consent and can withdraw from a trial at any time.
Ask your doctor for information about clinical trials or visit ClinicalTrials.gov.
Many MyLymphomaTeam members have described watchful waiting as being stressful. One member was quick to reassure others, “Watch and wait is not necessarily a bad thing! It's different than other types of cancer where you have to do something immediately depending on the staging.” Another added, “It's stressful before scans, but way better than going through treatment.”
Some members have mentioned the support of other MyLymphomaTeam members is a comfort. “This team has helped me so much,” one said.
MyLymphomaTeam is the social network for people with lymphoma and their loved ones. On MyLymphomaTeam, more than 10,000 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.
Are you currently going through watchful waiting? Do you need support? Share your experiences in the comments below, or start a conversation by posting on MyLymphomaTeam.