Anxiety and fear are common among people with Hodgkin and non-Hodgkin lymphoma. In fact, anxiety and depression occur at a higher rate among people with blood cancers like lymphoma than in the general population. Approximately 25 percent of people with lymphoma may experience persistent mental health symptoms, even after diagnosis and treatment.
MyLymphomaTeam members often discuss the anxiety and fears they have experienced throughout the course of the disease. “I was just diagnosed with mantle cell lymphoma in my liver,” one member wrote. “I start chemo on Tuesday, and truthfully, I’m a little scared.” Another member said, “I’m in remission, but I notice I’m still stressed and tense.”
To understand more about anxiety and fear with lymphoma, MyLymphomaTeam spoke with Dr. Timothy Fenske, a hematologist and medical oncologist who specializes in lymphoma. Dr. Fenske is a clinician and researcher at Froedtert Hospital in Milwaukee, Wisconsin.
“I think anybody would be appropriately anxious about a new cancer diagnosis,” Dr. Fenske said. He believes a lack of familiarity with lymphoma may make a diagnosis that much more stressful. “It is the sixth most common type of cancer,” Dr. Fenske said. “When you talk to patients, a lot of times they'll say, ‘I had never even heard of lymphoma until I was diagnosed with it.’” The fear of not knowing what will happen is a big factor in the anxiety that comes with lymphoma, but coping strategies can help, he advised.
Treatment advances have considerably improved survival rates for people with lymphoma over the last 20 years. Nonetheless, fear and anxiety about the impact of the disease, effects of treatment, and what their lives will be like after diagnosis are common. Such anxiety may occur with diagnosis, treatment, monitoring, or even while in remission. Worries about prognosis, effects of treatment, pain, and long-term outcomes can lead to anxiety and fear.
One of the most stressful periods for people with lymphoma is when they are first diagnosed, Dr. Fenske said. But the period right after that is also difficult. “A lot of patients will say that one of the worst parts was the time between getting the phone call that said their biopsy showed lymphoma, and then meeting with their oncologist to discuss their prognosis and treatment options,” he said. “During that waiting time, there's a lot of unknown, and fear of the unknown really drives anxiety.”
Feeling overwhelmed by cancer treatment decisions is a common cause of anxiety among people with lymphoma, along with the stress of feeling like the condition has taken over their lives. Treatment can cause worrisome discomfort and interruptions in daily life. “My worst fear would definitely be chemotherapy and all the side effects it causes,” wrote one MyLymphomaTeam member. “The more stress, the worse the neuropathy and chemo brain,” said another member.
People are often afraid about their first treatment, Dr. Fenske said. “Then a lot of times after they've had one or two treatments, the anxiety seems to calm down,” he said. “People feel like, ‘OK, I've been through one or two of those. I can deal with this. I know what this looks like.’ And then it's just a matter of hunkering down and getting through the rest of it.”
With many cases of nonaggressive (indolent) lymphoma, treatment may not be indicated and a watch-and-wait approach will be taken instead. Watch and wait, sometimes called active monitoring, may also cause significant fear and anxiety in some people.
“I wake up every day with little aches and pains, and I always wonder if the cancer has spread,” one MyLymphomaTeam member said. “I’m on watch and wait, and I’m not dealing well,” the member added.
Dr. Fenske explained that indolent lymphomas, such as follicular lymphoma, can often be managed like a chronic illness in which treatment is not needed over long stretches of time. “It's hard for people to think about cancer like that,” he said. “‘I have cancer, but I'm OK. I'm living with it. I'm being monitored and we're going to manage this in the long haul.’ This concept is difficult for some patients to accept.”
Watch and wait requires periodic follow-up CT scans to monitor the condition. Studies have shown that scans during watch-and-wait periods, or during times of remission, provoke anxiety and fear of disease recurrence. But for some people with lymphoma, watch and wait is preferable to drug therapies and the risk of unpleasant side effects. “Watch and wait is good, if you can put off having treatments,” one MyLymphomaTeam member said. “It gets stressful when you're scheduled for another scan. My feeling is, the longer I can put it off, the better.”
For some people with lymphoma, fear and anxiety return after treatment, Dr. Fenske said. Part of that is due to ongoing monitoring that requires occasional scans, but other causes are at play as well. Treatment can be a very consuming process, he noted.
“Everyone's kind of rallying around you — family, friends, and health care providers,” he said.
“You're sort of in the midst of this battle, so to speak, and so you can just kind of focus on the day-to-day of all you need to do.” When treatment ends, however, some people may feel at a loss about life after cancer.
“Everybody who was rallying around them now kind of thinks things are back to normal, and it's not quite normal,” Dr. Fenske said. “It doesn't feel normal, and there's this anxiety. Maybe they're still dealing with some leftover side effects. Maybe getting back into the swing of things at work or with the family has just been a lot harder than they thought. Or maybe they are finally coming to grips with what they just went through and how their life may be altered in various ways.”
A fear of recurrence is also common among people with lymphoma while in remission. “Perhaps the only thing more earth-shattering than hearing you have cancer is to hear that your cancer has recurred,” a MyLymphomaTeam member said. “It’s been really hard, and I am always scared when I have pain,” another member shared. However, research has shown that fear of recurrence can be reduced when the medical team is able to give people statistics about curability.
When it comes to the fears associated with remission, Dr. Fenske urged people with lymphoma to prepare for the fact that fear and anxiety may occur after treatment is completed. “Sometimes it really sneaks up on people. I don't think they expect to get hit with that after they're done with treatment,” he said. It can also be helpful to let caregivers, spouses, partners, and other loved ones know that fear and anxiety might come up — not just during treatment, but after all treatment is completed.
“I think expectation management is a big part of [coping].” Dr. Fenske stressed. “Give yourself a break and set realistic expectations. The day after your last chemo, everything may not be 100 percent back to normal, even though it may get there eventually, or close to it.”
If fear and anxiety are overwhelming or impacting your quality of life, Dr. Fenske suggested getting outside help, such as psychotherapy or cognitive behavioral therapy. “Sometimes people need to see a counselor. In some cases, an antidepressant or antianxiety medication can really help some people get through,” he said. Talk to your health care team to see if antidepressants or antianxiety medications may be appropriate for you. Dr. Fenske also suggested meditation or some form of exercise to cope. “There are many different strategies people use,” he said.
Research indicates that exercise and relaxation techniques, such as meditation or mindfulness training for stress reduction, can help people with lymphoma cope with anxiety and fear. “I had a great day with aqua exercises, a quiet cup of coffee, then a walk outside at a local park,” said a MyLymphomaTeam member. “All peace and quiet, reflection, and gratitude for life today. Still in remission.”
Support groups can also help reduce fear and anxiety. One MyLymphomaTeam member wrote about the support she has gotten within the community and elsewhere. “Support like in this group has been great,” she said. “Talk to other people who have gone through this nightmare and have come out stronger than before.”
MyLymphomaTeam is the social network for people with lymphoma and their loved ones. On MyLymphomaTeam, nearly 7,000 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.
What has given you anxiety with lymphoma? How do you cope with fear? Share your experience in the comments below, or start a conversation by posting on your Activities page.