How To Prepare for Life With Lymphoma

A cancer diagnosis can be a scary thing, seemingly upending the lives of you and your family. It can be an emotional time of stress, anxiety and fear as you face the unknown. But once the shock of the diagnosis subsides, there are ways you can prepare for the road ahead.

Being prepared can help you and your support network handle the ups and downs associated with treatment. This is especially true of lymphoma, which is classified by two different groups:

• Hodgkin lymphoma. This type of blood cancer is categorized by the presence of abnormal cells called Reed-Sternberg cells.
• Non-Hodgkin lymphoma. If Reed-Sternberg cells aren’t detected, the lymphoma is considered this. This includes diffuse large B-cell lymphoma (DLBCL), mantle cell lymphoma (MCL) and follicular lymphoma (FL).

To get a better understanding of how you can prepare for life with lymphoma, we spoke with oncology social worker Ilana Spaulding, MSW, LISW.

What is lymphoma?

Lymphoma is a cancer that forms in your lymphatic system. Your lymphatic system aids your immune system in protecting your body from infection and disease.

Symptoms can include:

• Painless swelling in your lymph nodes.
• Loss of appetite.
• Persistent fatigue.
• Drenching night sweats.
• Shortness of breath.

Lymphoma life expectancy

Thanks to an emphasis on early diagnosis and effective treatments, more people are living with lymphoma five years after their diagnosis. Treatments can include chemotherapy, radiation therapy and immunotherapy.

What should you do after a diagnosis?

The days after receiving a diagnosis of lymphoma are typically the most anxiety-provoking time, says Spaulding. But there are things you can do as you learn more about your treatment options and form a plan that can alleviate some of that stress and anxiety.

Lean on your care team

Find a medical team you feel comfortable with and that you feel cares for you.

“Journeying through a cancer diagnosis is a vulnerable experience and you should feel comfortable with your medical team,” advises Spaulding. “You will spend a great deal of time with your oncologist and deserve to feel fully heard and understood by them.”

You should always feel comfortable asking questions or even getting a second opinion.

“It’s so hard to absorb all of the information you’re provided in that first visit after receiving a new diagnosis,” she continues. “You’ll likely think of questions later on. Always feel comfortable with setting up a phone call or a follow-up visit to have the opportunity to ask anything that may come to mind later about your condition.”

Spaulding recommends keeping a journal so you can write down questions as they come to you, so you don’t forget them before your next appointment, and taking notes on what your care team tells you.

“If you can come prepared with questions, that can help alleviate concerns,” she says. “We want to ensure you feel knowledgeable about your cancer diagnosis.”

Make a plan and figure out logistics

A cancer diagnosis can turn your world upside down. Besides the medical challenges you face, the diagnosis and treatment can impact many other parts of your life, including employment, finances, family life and even your daily routine.

“It’s important to make a plan, even if it’s pretty simple to start with,” says Spaulding. “So much can feel out of control and unknown when you receive a diagnosis. It’s important to focus on what you can control and to feel some aspects of your life are taken care of.”

Some things to consider as you formulate a plan include:

• Plan for who will drive and accompany you to and from appointments.
• Talk to your employer to figure out what they can offer you while you go through treatment. Ask about work accommodations like remote work. Inquire about short-term disability and the Family Medical Leave Act (FMLA).
• If you have children, create a childcare plan for days you’ll be at treatment or appointments.
• Give some thought to what would be most helpful to you when others ask what they can do. Perhaps this is a meal train or loads of laundry being done. Ask a loved one to be in charge of organizing this to take the responsibility off of you.

Even just squaring away some of these tasks can help you feel more in control of the situation and more prepared for what’s ahead.

Don’t forget about your basic needs

Because a cancer diagnosis can be so overwhelming in the early days, it’s important to also stay focused on meeting your own basic needs.

“Make sure you’re getting a good night’s sleep, staying hydrated and exercising or moving your body when you can,” Spaulding encourages. “It’s good for your physical health, but is incredibly important for your emotional health, too.”

And as you go through treatment, you may experience some side effects. Lymphoma treatment side effects can include:

• Fatigue.
• Hair loss.
• Nausea and vomiting.
• Sleep issues.
• Digestive issues.

Different treatments come with different sets of side effects, so it’s important to talk to your care team and ask questions about what to expect after lymphoma treatment. And it becomes even more important to listen to your body and rest when you’re tired or take it easy if you’re feeling sick.

Be emotionally prepared

Taking care of your emotional well-being is also important, and it takes some preparation of its own.

“I always encourage people after diagnosis to recognize that there will be ups and downs and that it’s OK to have a bad day,” Spaulding notes.

It’s about giving yourself what she calls “emotional grace” during this time.

“Practice self-compassion. It’s unrealistic to expect yourself to feel upbeat at all times. Having a bad day is normal and it’s human nature,” she adds. “Give yourself the time and emotional space to move through that process.”

Many hospitals and cancer-related community organizations can connect you with others who’ve been through the same diagnosis and treatment regimen as you.

“They have walked the path before you,” Spaulding says. “It can give you an idea of what to expect and it can be comforting to hear from someone who’s on the other side of it.”

How to talk to family and friends

Another big component is informing family and friends about your diagnosis and creating a support system that can help you through the treatment process. From helping you with the logistics mentioned earlier to just being there for emotional support, a support system is a crucial part of the experience.

Talking to young children

How you break the news to children is another important step and one that has to be handled with care. Because children of different age groups absorb things differently, it’s important to keep that in mind when talking to your children.

Being honest and answering their questions can help younger children feel more at ease because they feel like they know what’s happening.

“Kids are so much wiser than we give them credit for,” says Spaulding, “and if they feel like something is going on and they don’t know what it is, that can provoke anxiety.”

It’s helpful to focus on preparing them for what may change. For example, explaining that mom or dad will receive a medication to treat their cancer that’ll probably make them feel sick and cause their hair to fall out, but their doctor is taking good care of them.

When talking to children of elementary school age about your diagnosis, Spaulding suggests talking through what their daily routine will look like.

“Maintaining a routine is helpful for children in this age group. Prepare them for what to expect,” she says. “For example, perhaps you will be at treatment, so grandparents may get them off the bus and spend the afternoon with them until you get home from your appointment.”

Talking to teens

When talking to teens about your diagnosis, there’s a little bit more room for more detail, but Spaulding again encourages being honest, open and reinforcing that the cancer is treatable.

“Teenagers may be more likely to jump to a worst-case scenario,” she says. “Being honest and clear about what’s happening while also providing reassurance about treatability can be very helpful.”

Other ways to help adolescents feel more involved include taking them to an oncologist appointment with you so they can ask questions or letting them see what the treatment facility looks like. Having another trusted adult check in with them, such as a grandparent, adds another layer of support. Teens may also feel more comfortable asking a trusted adult who’s not their parent cancer-related questions.

“It’s also important to keep their routine going just like with younger children,” stresses Spaulding. “Maintaining that sense of normalcy — attending extracurricular activities, hanging out with friends, playing sports — is important. It shows them that you don’t want them to stop doing the things they enjoy because you have cancer. It allows them to still be a kid.”

What if I have a small support system?

For some people who are diagnosed with lymphoma, there are challenges in finding a dependable support system.

“If you find yourself with a limited support system, lean into getting help and support from your medical team,” says Spaulding. “Your social worker or medical team can connect you with resources to help with transportation, home-delivered meals and other helpful community services.”

Additionally, joining a support group is one more way to increase that support system with external resources.

“Support groups can assist you in feeling cared for during a very emotionally trying time,” Spaulding says. “That support can mean the world to someone as they progress through treatment. Connecting with others who understand can provide hope when you need it most.”