A Diagnosis of Follicular Lymphoma
Bob was first diagnosed with follicular lymphoma in the late 1990s at the age of 50. He spent most of his professional career with a leading telecommunications company working with their international business. During a 1-month around-the-world business tour, while staying at a hotel in Singapore, he noticed a small bump on his right temple. He didn’t think much about it, but when he got back to the United States, he brought it to the attention of his primary care doctor during a routine appointment.
His doctor recommended that he see a dermatologist, who referred him to a surgeon to remove what was thought to be a cyst. A biopsy and pathology report confirmed that Bob had non-Hodgkin lymphoma, also known as follicular lymphoma (FL).
Bob remembers, “Two weeks later, I got a call from the surgeon who said, ‘We got the pathology report back. There was an indication of non-Hodgkin lymphoma.’ I didn’t even know I needed a pathology report. I didn’t know a thing about lymphoma.”
Like many people who receive a cancer diagnosis, Bob felt confused and uncertain at first, and it wasn’t until the surgeon referred him to an oncologist in New Jersey that he realized he had been diagnosed with cancer.
His oncologist, who Bob continued to see for more than 15 years, confirmed with a bone marrow biopsy that he had FL – an indolent, slower growing cancer of the lymphatic system. In FL, certain white blood cells, called B lymphocytes, grow and multiply uncontrollably, making it difficult to detect and often diagnosed at an advanced stage. 1,2
Fortunately, Bob’s cancer had not spread, and his oncologist recommended prophylactic radiation to the area of his right temple where the tumor was first found, which proved successful. However, Bob knew that despite responding well to treatment, FL often returned.
Bob remained hopeful, visiting his oncologist every 6 months for a full workup, and he remained in remission for nearly 5 years before a biopsy confirmed that it had come back, this time in his abdominal area.
Finding Your Voice in the Face of Relapse
You may hear your health care team refer to cancer as being “relapsed” or “refractory.” Relapsed means the cancer came back after a period of improvement. Refractory means that the cancer did not respond to treatment and cancer cells continue to grow. Your health care team may decide to try a new treatment if you have relapsed or refractory FL, which can often lead to remission.3 Everyone’s body may respond differently to treatment so it’s important for you to discuss your own experience with your doctor.
When Bob was told the cancer relapsed in 2003, fear and concern about a lack of curative options flooded back into his mind. Bob knew he wanted to treat the cancer proactively and wasn’t comfortable waiting and watching. His oncologist agreed, and together, they “put everything on the table” – weighing the benefits and risks of his treatment options.
After asking about, and understanding various treatment considerations such as safety, efficacy, convenience and lifestyle choices, Bob and his doctor ultimately decided on a proactive approach followed by maintenance therapy.
This was a difficult time for Bob. He shared that while he initially kept his diagnosis private, everything changed when the FL relapsed, and he began treatment.
“I went through everything that you can think of,” Bob said, describing his experience with relapse and treatment, adding “it was important to lean into the support of my closest friends and family during this time while keeping it private from others.”
When he started losing his hair, his son and his friends helped him shave it off. They also sat with him during some of his infusion appointments and talked about sports. Another friend drove from Queens, New York to Morristown, New Jersey, just to keep him company for his 3-and-a-half-hour treatments.
Thankfully, the second course of the treatment regimen led to a durable remission. However, decades later, every 6 months Bob still visits an oncologist who specializes in lymphoma for a full workup to monitor his disease. Despite having had a treatment that worked, Bob knows that not every treatment works for everyone, every time. However, he remains hopeful about current research and how far the field has progressed.
“We are in a whole new era for treatments for lymphoma as well as other cancers,” remarked Bob. “We are moving toward options that are more beneficial, less toxic, and that offer more of a chance of extending the good life.”
Living Life to the Fullest
At 75 years old, Bob focuses on celebrating life’s joys. His journey shows that with proper treatment, support, and resilience, follicular lymphoma can be managed, and people with this cancer can continue having fulfilling life experiences.
“You’ve got to move forward. If you’re not moving forward, you’re losing the game,” he says. Bob is active in the community where he and his wife live in Florida, regularly playing golf and pickleball. He loves volunteering in the lymphoma community as well as with organizations like Big Brothers and Big Sisters of America.
“I have to admit that I still occasionally wonder if this cancer is going to come back again. Is there an indolent follicular cancer cell in my body that remains dormant? I don’t know,” Bob says. However, he refuses to let that fear dominate.
“You’ve got to live while going through this—don’t go hide in a corner. Don’t take a back seat. Understand what you’re dealing with, and do the best you possibly can to find out as much information as possible so you can take an active role in your treatment journey.”
Advice for Others Living with FL
Bob tells others who have been diagnosed with FL to seek out as much information as possible about their diagnosis, to talk to people who have been through this, and to use resources that are available through lymphoma organizations. He says it’s also important to make sure the diagnosis is accurate and to always seek out a second opinion.
“See a lymphoma specialist if you can,” Bob recommends, adding that “there’s no such thing as too many questions when it comes to making decisions about your physical and mental health.”
Although your health care team can provide support throughout your follicular lymphoma journey, there are other organizations and communities that may be able to help.
For more support information and resources, visit Lymphoma Research Foundation (LRF). You can also read and listen to stories from others who have been affected by follicular lymphoma like Debbie, who has been living with FL since 2011 and seeks to live every moment to the fullest – even in the face of uncertainty.
References
- What is non-Hodgkin lymphoma? American Cancer Society. Updated January 29, 2019. Accessed December 6, 2023. https://www.cancer.org/cancer/types/non-hodgkin-lymphoma/about/what-is-non-hodgkin-lymphoma.html
- Types of B-cell lymphoma. American Cancer Society. Updated August 1, 2018. Accessed December 6, 2023. https://www.cancer.org/cancer/types/non-hodgkin-lymphoma/about/b-cell-lymphoma.html
- Follicular Lymphoma: Relapsed/Refractory. Lymphoma Research Foundation. Accessed January 3, 2024. https://lymphoma.org/understanding-lymphoma/aboutlymphoma/nhl/follicular-lymphoma/relapsedfl/
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Some Questions You Might Want to Raise With Your Health Care Team
Treatment Questions
• Why do I need this treatment?
• How does this treatment work?
• How is this treatment taken and how often?
• How effective is this treatment?
• How long can I expect to be on this treatment?
• What are the possible side effects of this treatment?
• Are there any symptoms or side effects I should tell you about immediately?
• What can I do to manage side effects?
• How might I feel while I’m on this treatment?
• Will I be able to work?
• Can I care for my family?
• Will this treatment affect my lifestyle (social aspects, work, physical activity, travel, etc)?
• What should I avoid while on this treatment?
• Will I be taking this treatment in combination with other treatments?
• When might I expect to see a response?
• What happens if I don’t respond to this treatment?
• How will I know if this treatment is working?
• How will you monitor my progress and results?
• How will you decide when to stop this treatment?
• Are there any tests or scans I will need during this treatment?
• What should I do if I experience symptoms of cancer again?
• How will you monitor for that? Are there any special precautions I need to take?
• Will I still be monitored once my treatment is complete?
Support and Resources
• How often will I have appointments, and how long will they take?
• How do I prepare for my appointments?
• Can I bring someone with me to my appointments?
• What type of support is available if I need help paying for treatment?
• What questions should I ask my insurance company?
• For after-hours questions or emergencies, who should I contact, and how can I contact
them?
• Can I pick up my prescription(s) from my local pharmacy?
• Is there an organization I can contact if I have trouble getting a ride to my appointments?
Mental Wellness
• Who can I talk to about all the feelings I’m having?
• What are some ways I can manage my worry and stress?
• What resources are available that may help with my daily needs?
• Who can I talk to about managing my fears about cancer?
• Where can I find information on support groups?
• Will I ever feel like myself again?
• How can I talk to my employer about what I’m going through?
• How can I talk to my friends or family about my treatment?
