Living with follicular lymphoma (FL) can often feel overwhelming. As a slowly growing, typically incurable blood cancer, FL causes common symptoms such as swollen lymph nodes in the neck, armpits, chest, abdomen, and groin / pelvis, as well as fatigue, weight loss, and shortness of breath. In some cases, people with FL may not have any obvious symptoms when diagnosed.
Despite its slowly growing nature, FL should be monitored after diagnosis, during and after treatment. People with FL can often experience long periods of remission before their disease returns (relapses), and they can become resistant to previous treatments they received (called refractory FL) because their disease is more aggressive and / or difficult to treat. It is therefore important that they continue to be monitored regularly during remission periods.
Connie Lee Batlevi, MD, Ph.D., a lymphoma specialist at Memorial Sloan Kettering Cancer Center in New York, emphasizes the importance of patients working closely with their physicians to develop a long-term treatment plan. That plan, she said, should take into account the pace of the person’s lymphoma, any concurrent medical conditions, and individual lifestyle needs.
“I’ve seen firsthand how difficult it can be for my patients to live with follicular lymphoma, especially now that we continue to be affected by the COVID-19 pandemic,” said Batlevi, who treats many patients living with FL .
“Given that the pandemic can continue to be a part of our lives, we as doctors always focus on protecting and caring for our patients,” she said. “I often see my patients as part of my extended family and often encourage them to remember their routine follow-up appointments to make sure we are providing the best possible care and monitoring possible progression of the disease.
“While some patients enjoy the convenience of telemedicine, others really need and miss the physical connection that comes with in-person visits. Telemedicine has proven to be an important option for patients to have a dialogue with their doctor at this point however, it is critically important to continue routine personal check-ins to ensure that any relapse or disease progression is monitored. “
Here are Batlevis recommendations for questions people with FL can ask their health care providers – and why they matter.
What signs or symptoms should I look out for between appointments? What should i do if they develop?
Why this question is important: Developing certain symptoms can act as a warning that the cancer may be progressing or that a more urgent assessment is needed than just waiting for the next appointment. Symptoms can vary and often include fatigue, fever, chills, weight loss or enlargement, and persistent lumps. More often, however, symptoms are based on the location of the lymph node in question. For example, if a lymph node compresses the gastrointestinal system, it can lead to abdominal symptoms. When lymphoma compresses a nerve, it can cause pain. A good guide is to call your doctor if an atypical symptom lasts for weeks or months. It is important that you have ongoing open and honest discussions with your doctor about your symptoms so that both of you can determine when a symptom is a cause for concern.
How do I know my FL has relapsed when the symptoms are usually so subtle?
Why this question is important: Given the sometimes subtle symptoms associated with FL, relapse can be difficult to spot without a routine check-in with a doctor. It is important for people with incurable cancers like FL to continue making routine appointments with their doctors and not forego treatment, especially during COVID-19 (strict safety precautions apply in all hospitals and clinics). Because FL is a slowly growing cancer with a high chance of recurrence, it is critical that patients continue their regularly scheduled visits and discuss whether routine surveillance imaging is appropriate. Telemedicine appointments can be an option, but telemedicine visits should not entirely replace in-person appointments.
What does it mean if my cancer returns (relapses) or becomes resistant to treatment (refractory)?
Why this question is important: Since FL is typically an incurable disease, the reality is that most patients can relapse at some point in their lives. For this reason, continuing follow-up appointments with your doctor are important. Routine screens and check-ins allow you to discuss any relevant updates and / or changes you may have experienced. Given that patients may become resistant (refractory) to previous treatments, it is important to work with your doctor to develop a long-term treatment plan that takes into account the severity of your FL and the treatment options available that will best support your lifestyle.
What options do I have if my FL relapses or I become resistant to my previous treatment?
Why this question is important: The past few years have proven to be a revolutionary time for lymphoma treatments as scientists and clinicians have worked to develop new treatments that will benefit most FL patients. Some of these treatments are oral medications that can be taken at home that can be helpful in the COVID-19 pandemic.
Other new forms of treatment are immunotherapies, which help your own immune system fight the lymphoma. Conceptually, in the next few years there may be combinations of established, targeted and immune-based treatments that are intended to attack the lymphoma in different ways at the same time.
Are there any resources that you can recommend to learn more about FL?
Why this question is important: Some patients and their families may immediately seek all the information they can about the disease. However, it is important to remember that not all information is created equal, especially on the internet. Your doctor should be able to provide you with a list of reliable, up-to-date resources. You can find more here too.
As a patient or caregiver, once you’ve done your own research, you should never be afraid to ask your doctor questions or discuss all options. Ultimately, your needs and preferences are an important part of your treatment plan.
“I encourage patients not to get overwhelmed by follicular lymphoma,” Batlevi said. “I always remind them that with the proper management plan developed by a lymphoma specialist, they can still live long and fulfilling lives.”
The Lymphoma Research Foundation provides lymphoma-specialist emotional, physical, and financial support for people with cancer.
CancerCare provides resources for cancer patients in general.
This resource was created with the assistance of Epizyme.