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The treatments are over; your lymphoma is in remission. Your medical appointments are getting fewer and farther between. You’re ready to start life as a survivor of diffuse large B-cell lymphoma (DLBCL).
However, you — and your body — have been through a lot during the past few months. You may have lingering side effects, fears and questions.
“I always tell patients: Once we take care of your lymphoma, you should try to live whatever life that you’re willing to live,” says Jithma P. Abeykoon, M.D., a Mayo Clinic cancer specialist and an assistant professor in oncology at Mayo Clinic College of Medicine and Science.
Although your lymphoma is in remission, there are several things you should be prepared for in the months and years ahead.
You still need to pay attention to your health
“People who have completed treatment for DLBCL see us every 3 to 6 months, at least for the first five years,” Dr. Abeykoon explains. “It’s typically every three months for the first two years and then every six months to a year for the next three years.”
During these follow-ups, your healthcare team will typically perform lab tests, physical exams and symptom assessments. If you feel unwell or you notice anything that’s different than usual, always bring this to the attention of your healthcare team, says Dr. Abeykoon.
If your care team doesn’t find anything concerning in your labs, health and physical exams, you may not need to have frequent imaging like PET or CT scans to monitor for returning cancer. A Mayo Clinic study found that regular imaging is not useful for detecting relapses and improving survival, as most people experience symptoms of relapse.
In addition to prioritizing your follow-up appointments, it’s also important to take care of yourself with proper nutrition and exercise, get all your recommended preventive screenings like colonoscopies and mammograms, and stay up to date on your vaccinations, he says.
“Healthy eating habits include vegetables, healthy proteins, a multivitamin — everything recommended for the general population in the American Heart Association guidelines,” he says. “Like everyone, people with DLBCL also need to strive to have a healthy weight.”
Other good practices include:
- Exercising regularly.
- Keeping up with medical appointments.
- Avoiding tobacco products.
- Prioritizing a good night’s sleep.
- Reducing stress through practices like meditation, counseling, support group participation and loving relationships.
- Drinking alcohol in moderation, if at all.
You may have lingering issues from your DLBCL treatments
“You need to keep in mind that you most likely have been exposed to multiagent chemotherapy,” Dr. Abeykoon says. “Some people will have numbness and tingling. Others have mild cardiac problems. Some may have a prolonged decreased white blood cell count. These people may not be severely immunodeficient but may be at a slightly increased risk of acquiring some opportunistic infections such as upper respiratory tract infections.”
“Many times, the effects go away with time. In some cases, patients will not 100% recover to the state before they started treatment,” he says. “In most cases, patients can still have a good quality of life — don’t worry.”
The Leukemia & Lymphoma Society Survivorship Workbook provides a list of potential treatment side effects, including:
- Cognitive effects, like chemo brain. After chemotherapy and other cancer treatments, some people experience problems with memory and thinking. This is a common problem that’s likely to improve with time.
- Physical effects. People who had DLBCL treatments may experience fatigue, nerve damage, heart disease, osteoporosis and organ damage.
- Late effects. Some treatment side effects don’t appear for years — or even decades. Possible late effects include secondary cancers such as leukemia.
- Fertility problems. Some cancer treatments come with a risk of infertility. If this is a concern for you, discuss this with your healthcare team before treatment in order to make the best decision for your situation.
“If we select an aggressive treatment strategy based on the risk stratification of the cancer, we will definitely discuss fertility preservation before exposing that person to toxic chemotherapy,” Dr. Abeykoon says. “We make sure that we do due diligence to give them the best possible quality of life.”
Fertility preservation may include options such as egg freezing (oocyte cryopreservation), embryo freezing or sperm freezing.
You may feel anxious or depressed
Remission is something to celebrate. But being diagnosed with cancer and going through cancer treatments can be traumatic and hard to move past.
Common mental health challenges after DLBCL
It’s common to experience emotions such as:
- Anxiety that the cancer might return, especially at screenings and checkups.
- “Survivor’s guilt” because you survived cancer while many others don’t.
- Grief for the life you had before your DLBCL diagnosis.
- Frustration that other people can’t understand what you’ve been through.
- Stress from feeling like you have to catch up on projects and tasks that were on hold during cancer treatment.
Don’t feel like you must face these emotions alone. It may help to talk to a trusted loved one or join a support group. Consider getting help from a mental health professional. Some people experience depression, anxiety disorders or even post-traumatic stress disorder (PTSD) after cancer treatment. If needed, you can be referred to someone who can help you through talk therapy, medication or both.
Some symptoms of these mental health conditions can include:
- Persistent feelings of sadness, emptiness or hopelessness.
- Loss of interest or pleasure in activities you once enjoyed.
- Intrusive thoughts or memories.
- Excessive and persistent worry and fear.
To address any worry or anxiety about cancer returning, it can help to get the facts. Your healthcare team can help you understand relapse symptoms and estimate how likely a relapse is for you. Ask your healthcare team questions about any symptoms that worry you.
Live life to the fullest
Dr. Abeykoon says, “I always tell my patients in remission to live to the fullest, because you know initial treatment for diffuse large B-cell lymphoma is likely curative.”
Mayo Clinic does not endorse companies or products. Advertising revenue supports our not-for-profit mission.
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