Strategies for Living With Hodgkin's Lymphoma

Health Writer
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When Kimberly Lackey was diagnosed with Hodgkin’s lymphoma at age 25, it sent shock waves through her family and friends — not just because she was so young, but also because her health habits had always seemed spot on.

“Even as a teenager, going to a health food or vitamin store was like a candy shop to me,” she recalls. “I was the person who was out there exercising all the time, and eating the right foods. For me to get cancer, especially at that age, was unreal.”

As she went through chemotherapy and dealt with the effects of immediately going into menopause, it felt like her life got put on hold. Even after she went into remission — she’s now 39, and considered well out of range for recurrence — the feeling of holding her breath continued.

“Having cancer changes your life, obviously,” she says. “A great deal of good things came of it, like my decision to pursue a career dedicated to helping others get healthy. But to live through treatment and potential recurrence, you need to be tough, and surround yourself with good people. You have to stand in your power and know you can deal with a disease like this.”

For those who have just been diagnosed or have a loved one living with this cancer, here are some key points to keep in mind:

You may feel like your life just stopped

Hodgkin’s has a higher survival rate than non-Hodgkin’s lymphoma, but that doesn’t mean it’s easier to navigate emotionally, especially since most people are like Lackey and are diagnosed in their teens or 20s, according to Catherine Diefenbach MD, assistant professor of medicine in the division of hematology at NYU Langone’s Perlmutter Cancer Center.

“One very difficult aspect for many patients is to feel out of step with their peers,” she says. “All around you, people are going to college, starting careers, getting married, all the normal things that happen in your 20s. And you’re fighting cancer. It’s okay to feel like that’s not fair. Because it’s not.”

The longer you go without recurrence, the more your risk drops

The majority of patients are treated with chemotherapy, and Dr. Diefenbach says the treatment is often highly successful. She considers Hodgkin’s to be potentially curable for most patients, which means that, as in Lackey's case, the cancer won’t recur.

Once a patient passes the two-year mark without recurrence, the chances of the cancer returning drop significantly. By five years, patients no longer even need to check in annually, since the risk of recurrence is so low at that point.

“We like to celebrate these milestones, because it helps people to worry less about the cancer coming back,” she says. “Of course, it might happen, but focusing on how far you’ve come, rather than what could be ahead, can be helpful psychologically.”

The hardest moment may be right after treatment

As difficult as chemotherapy and radiation might be, at least you feel like you’re doing something to fight the cancer, says Dr. Diefenbach. You also tend to have the most support when you’re in treatment. But once you’re done, the relief can fade quickly.

“I get more calls from patients in the two months after they finish chemo than when they’re in treatment,” she says. “They might get a cold, or a mosquito bite, or a rash, and their anxiety zooms upward, wondering if the cancer is back. That’s completely normal, and I just tell them this will wane. Talk to your doctor, so you know what’s going on.”

Lackey knows the feeling well — her lymphoma was diagnosed when she went to the doctor for what she thought was a spider bite. So seeing skin irritations after treatment could often prompt a freakout episode.

“Time is huge,” she says. “You need to wait it out, talk to your doctor when you’re concerned, and just take some deep breaths and get through it.”

You may need to think about fertility

Because treatment can affect your chances of having children in the future — for example, Lackey’s shift into menopause — you may want to think about strategies now that can lead to kids later, advises Sean Fischer, MD, medical oncologist and hematologist at Providence Saint John’s Health Center in Santa Monica, California.

“Many of our Hodgkin’s patients have fertility concerns because they’re so young, and they haven’t had kids yet,” he says. Some opt for proactive measures before treatment, such as freezing eggs and embryos or banking sperm.

“These are not guarantees that you’ll have children from these measures in the future, because these aren’t yet 100 percent effective,” he says. “But for many people with Hodgkin’s, this could be a good option if their fertility is impacted by treatment.”

Getting back to a routine can help

During and after treatment, it’s natural to occasionally feel consumed by fear, because you’ve been through a major life change, Lackey notes. But she found it useful to buckle down to a routine — not just in terms of everyday actions, but also a regular gratitude practice.

For example, that might mean keeping a gratitude journal with a running list of people and things that make you feel happy and thankful, or simply sitting in meditation for a few minutes every morning with an appreciation of being present in the moment.

“When you can turn to gratitude, it makes it easier for the fear to become smaller,” she says. “I’m not saying to ignore the anxiety or worry, but it’s possible to make sure it doesn’t have a front-row seat in your life.”

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