When Prudence (Prudie) Withel was diagnosed with follicular lymphoma a decade ago, she was cautiously optimistic. This blood cancer, a form of non-Hodgkin's lymphoma, usually grows slowly.
After one chemotherapy cycle, Withel's follicular lymphoma went into "complete remission," which means all signs of cancer disappeared. But 6 months later, Withel got news that put her in emotional turmoil. Her CT scans showed that her cancer returned as a more aggressive type, which means it was growing quickly. Her medical team put her on intensive chemotherapy for 3 weeks, followed by a bone marrow transplant.
Withel, though a natural optimist, was anxious. "I'd have moments where I'd wake up in the middle of the night terrified," she says. "Part of me wanted to wake my husband up, or pick up the phone and call one of my children, but I was scared to do that, too. That would just make it seem even more real."
Withel's treatment was effective. Her lymphoma went into remission and has not returned. And Withel's experience -- and those of others with follicular lymphoma -- holds lessons for anyone trying to manage the stress and anxiety that may start when you learn about your relapse.
Steps to Take
You can help manage the emotional impact of a relapse with these steps:
Find a medical team you trust. It's important to feel comfortable about having open conversations with your cancer care team, and that they are there for you.
Withel's doctor is Francisco Hernandez-Ilizaliturri, MD, chief of lymphoma at Roswell Park Cancer Center in Buffalo, NY. It's been a successful partnership.
"Dr. Hernandez-Ilizaliturri has called me back from a remote island while he was on vacation to help me get into a clinical trial," Withel says. "I have complete faith in him and his treatment advice, which allows me to feel more comfortable just going back out there and living my life."
Focus on what you can control. "When you're in remission for follicular lymphoma, you always feel somewhat like you're living on eggshells," says Brian Blum, 60, an American writer who now lives in Israel. Blum was diagnosed with follicular lymphoma in 2018 and relapsed about 6 months later.
His tumor has remained small, so right now he's just under careful observation by his doctor, with no active treatment.
"While I was devastated, in some ways I also felt empowered because I at least knew my health status," he says. "There are constantly new treatments for this disease being developed and in clinical trials. That reassures me because I know that when it's time for me to undergo treatment again, I'll have plenty of options to choose from."
Establish boundaries. People with a relapse of follicular lymphoma sometimes feel pressure to be a shoulder to lean on for family members and friends who may also be frightened and overwhelmed by the diagnosis, says Lindsey Weaver, a social work counselor at MD Anderson Cancer Center in Houston. It's important not to fall into a pattern where you are constantly reassuring them at the expense of your own well-being.
"I felt like I spent the first few months of my recurrence trying to manage other people's anxiety," Blum says. "People would constantly ask me if I was OK, and then I finally realized that they really didn't want to hear anything other than the word 'yes.'"
In these cases, Weaver says, you should keep your distance as much as possible and only confide in your close circle. "The people who were there for you the first time around are the ones you should lean on now," she says.
Join a support group. When you take part in a support group session, you'll meet other people with cancer who know what you're going through. You can share and learn tips about how to face challenges of a relapse. Some support groups meet in person, while others gather online. Ask your doctor about how to connect with one.
Get help from mental health professionals. The day after his initial diagnosis, Blum started psychotherapy. "I found it very helpful when I would mentally get stuck on worst-case scenarios -- it's so easy to spiral out of control," he says.
A form of psychotherapy called cognitive behavioral therapy (CBT) may help ease anxiety and depression for people with cancer, Weaver says. The goal is to identify and change self-destructive thought patterns with positive ones.
Some mental health professionals that you can turn to for counseling include psychologists, psychiatrists, and social workers.
Set small goals. You may feel depressed that you have to undergo treatment again, or worry about the disease. You can help take your mind off of your cancer with small goals that you achieve every day, whether it's exercise, lunch with a friend, or reading a chapter of a book. You can also set longer-term goals, like your child's wedding or a vacation.
When Withel was hospitalized for her bone marrow transplant after her lymphoma recurrence, she kept herself busy by walking laps around the hospital floor until she'd done a mile each day. "It helped pass the time and allowed me to get stronger," she says. "I'd also stop to talk to nurses and other patients, which lifted my spirits."
Carry on with living. In order not to dwell on her cancer, Withel tries to keep herself as busy as possible with activities such as gardening, baking, cooking, and spending time with her three kids, nine grandchildren, and five great-grandchildren.
"I never want to miss something that my family is doing, whether it's learning how to drive and attending a high school graduation," Withel says. "You have to take the attitude that you won't let this cancer rule your life."