Mayo Clinic does not endorse companies or products. Advertising revenue supports our not-for-profit mission.
Finding out that your diffuse large B-cell lymphoma (DLBCL) has returned can be heartbreaking and stressful — plunging you back into the world of worry, medical appointments and treatments.
Unfortunately, this experience is relatively common. And “when the disease comes back, most of the time it’s more aggressive than it used to be,” says Jithma P. Abeykoon, M.D., a Mayo Clinic cancer specialist and an assistant professor of oncology at Mayo Clinic College of Medicine and Science.
When cancer comes back after a period of remission, it’s considered a recurrence, also known as a relapse. Relapse happens because some cancer cells stayed in your body after treatment. These cells can grow and cause symptoms. Your cancer cells might show up in the same place where the cancer started, or they might be in a new location in your body.
“It’s hard for patients, because our goal with initial treatments is to cure the disease,” he explains. “When DLBCL comes back, patients go through all of the mental agony of imagining outcomes and treatments again.”
However, there is reason for hope. Your healthcare team can help you sort through your next steps and guide you through any potential treatments.
A cure for your DLBCL is still possible
“The first question people with a relapse ask is, ‘Is there still a chance for a cure?'” Dr. Abeykoon says. The answer is yes.
“We can deploy the second line of treatment, which is either a stem cell transplant or CAR-T,” he says.
CAR-T cell therapy
With chimeric antigen receptor (CAR)-T cell therapy, your healthcare team takes some of your body’s infection-fighting T cells through a blood draw. Then your team will genetically engineer those cells to fight cancer, before infusing them back into your body. CAR-T cell therapy is most often used for people with DLBCL when relapse happens during the first 12 months after receiving the initial treatment.
Stem cell transplant
Stem cell transplants use healthy stem cells from your body to rejuvenate the bone marrow after receiving high doses of chemotherapy to kill the cancer cells.
Similar to CAR-T cell therapy, your medical team will get your stem cells from a blood draw or sometimes via a bone marrow biopsy. Then, you’ll undergo chemotherapy that kills cancer cells in your body. After chemotherapy, your own stem cells are returned to your body to help your body heal. For patients with DLBCL, stem cell transplants are used more often if the relapse happens after the first 12 months.
Additional treatment options
Although CAR-T cell therapy and stem cell transplants are the most common treatments for an initial DLBCL relapse, some people may not qualify for these options for different reasons, most often poor underlying health. For these people, there are many other potential treatments that act against lymphoma but have less chance of a cure.
If your DLBCL relapses again, you can potentially try other treatments and participate in available clinical trials.
“Participating in clinical trials is very important,” says Dr. Abeykoon. “If you have relapsed multiple times, you may benefit from participating in a trial conducted by a bigger academic center — such as Mayo Clinic.”
He continues, “These centers often have clinical trials with cutting-edge treatments — next-generation, new treatments that typically will lead to best responses and produce the best quality of life compared to standard-of-care treatments.”
Moreover, treatments offered through clinical trials are unlikely to produce worse outcomes than standard-of-care treatment. So when given the choice, it’s often advantageous to participate in clinical trials. You can search for clinical trials online or ask your healthcare team for information about available clinical trials.
Choosing the treatment that’s right for you depends on factors such as your goals for treatment and what side effects you’re willing to accept. Your healthcare team also will consider how your body responded to your past treatments.
Managing emotions around relapse
A relapse is often a very stressful situation. For some people, a relapse can be even more traumatic than their original diagnosis. Many people feel some combination of anger, anxiety, grief, depression, loneliness, hopelessness and fear.
You might have questions such as:
- Why did this happen to me again?
- Did I do something wrong during my first treatment?
- Was this relapse preventable?
- Did my medical team provide the right treatment plan the first time around?
If emotions and questions are taking up a significant amount of your headspace, rally your troops. Look for support from:
- Friends and family.
- Your healthcare team.
- Mental health professionals.
- Church or religious groups.
- Support groups.
- Online communities.
If you’re struggling with a cancer recurrence, talking to mental health professionals or people who have been in — or are in — a similar situation can help you process your feelings and fears.
Always remember that having a lymphoma diagnosis is not your fault, Dr. Abeykoon says. Try not to blame yourself or your loved ones.
Your medical team can help you cope
The people on your medical team are experts in DLBCL. They can ease your mind and help you know what to expect. You can ask your healthcare team questions such as:
- What can I expect during a relapse?
- What are my chances for a good outcome?
- What tests are necessary? Are they painful?
- What treatments are available? How will we choose a treatment?
- What are the goals and side effects of treatment? What happens if I don’t get treatment?
- How can I get support to address my anxiety and fears?
- Can I speak to other people who have gone through this process?
- Who do I call to talk about what my insurance will cover?
- If insurance won’t pay for my treatment, are there programs that can help?
- Are there clinical trials I should be thinking about?
You’re prepared for the next step in your DLBCL journey
When you had DLBCL the first time, everything was new — from medical lingo to dealing with treatment side effects. So although you have to endure a whole new batch of tests and treatments, some things may be easier the second time around.
Consider how much you knew about DLBCL when you were first diagnosed and compare it with what you know today. You are likely much more prepared for what comes next.
Additionally, you’ve likely built relationships with members of your health care team, and you know your way around the hospital or clinic. And based on your first experience with cancer, you know what’s best for you during this time. Whether you needed some time alone or preferred having someone nearby, you can draw on your experience to plan ahead.
Another reason for hope: Treatments for DLBCL are improving at a fast pace, so it’s best to keep an eye on new treatment strategies, Dr. Abeykoon says. The best treatment for you today may not be the best treatment for you next year.
Mayo Clinic does not endorse companies or products. Advertising revenue supports our not-for-profit mission.
Relevant reading
Mayo Clinic First-Aid Guide for Outdoor Adventures
The first-ever first-aid book from medical experts at Mayo Clinic, the most trusted name in medicine. Welcome to the jungle! Or the mountains! Or the high seas! Wherever your travels take you, Mayo Clinic First Aid Guide for the Outdoor Adventures is here to help you survive your next trek…
