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Support for People With DLBCL

Finding out that you have DLBCL, or that your disease has returned or has not responded to treatment, can be overwhelming. It’s important to remember that you are not alone.

Communicating with your healthcare team

Be sure to keep an open line of communication with your healthcare team. Your healthcare team knows your unique situation and is the best source of information for your health and well-being. Don’t be afraid to ask your healthcare team any questions you may have. When it comes to DLBCL, your treatment plan, and your overall health, there is no such thing as a bad question. You may even want to write down questions as you think of them in between visits so you won’t forget to ask them. In addition, you can use this shared decision-making toolkit for DLBCL that has been designed to help you take an active role in the decision-making process.

Be sure to let your healthcare team know about:

Any changes in your overall health or the way you are feeling

Any symptoms or side effects you may experience, even if you are not sure if they are associated with DLBCL or its treatment

Any other health conditions you may have or medications you may be taking—both prescription and over-the-counter

Not an actual patient
or healthcare provider.

Not an actual patient
or healthcare provider.

Looking to become a part of the decision-making process in your DLBCL journey? This toolkit can help.

Navigating healthcare and treatment decisions after a diffuse large B-cell lymphoma diagnosis can be overwhelming. This toolkit provides key questions and resources to have open and honest conversations about your care in partnership with your healthcare team.

Download the toolkit

Communicating with others about DLBCL

Ultimately, who you decide to tell or not tell about your diagnosis is your own choice. Here are some tips from The Leukemia & Lymphoma Society that may be helpful.

Not an actual patient
or caregiver.

Communicating with family and friends

  • Many people find it helpful to be honest with family and friends about the diagnosis. By communicating with loved ones, you give them the opportunity to offer their support

  • If you feel overwhelmed doing this yourself, you may want to consider appointing a willing family member to speak on your behalf while you focus on your own needs

Not an actual patient
or caregiver.

Communicating with your employer and coworkers

  • In addition to talking with family and friends, another concern people may have is talking with their employers

  • Some reasons you may choose to tell your employer include:

    • You need time off from work for treatment
    • You’re eligible to take family or medical leave
    • You’re applying for a new position
  • If you are unsure whether or not you want to tell your employer about your diagnosis, consider talking with a professional counselor who has experience with employment issues

Not an actual patient
or caregiver.

Not an actual patient.

Communicating with others

  • It may also be helpful to find support outside your immediate circle of family and friends

  • Organizations such as The Leukemia & Lymphoma Society provide web-based communities where you can connect with others who have had similar experiences

  • This may be a good way to find information and support without being overwhelmed by questions or phone calls

Maintaining your overall health

It’s important to do your best to maintain your overall heath during your DLBCL journey. This can be challenging during treatment, so be sure to talk with your healthcare team before making any changes to your diet or exercise routine.

Nutrition

  • Overall, eating a healthy diet and staying hydrated during and after cancer treatment may help you feel better and stay stronger
  • Be sure to discuss any dietary restrictions that may be required with your healthcare team

Physical activity

  • Doing your best to stay physically active and maintain a healthy body weight are important considerations
  • Diet and exercise can be challenging during treatment, so you should talk to your healthcare team before starting any diet or exercise program

Keep health appointments

  • It’s also important to do your best to keep all your appointments with your healthcare team
  • This will help them understand how your DLBCL is responding to treatment and give you a chance to ask questions

Stay organized

  • You may want to consider keeping all of your medical records and documents together in one place
  • Some of the documents you may want to include are those related to your DLBCL diagnosis, lab tests, instructions and recommendations from your healthcare team, and DLBCL treatment dates and locations

Not an actual patient.

Finding additional sources of support

In addition to family and friends, you may want to reach out to local or online support groups where you may have the opportunity to speak with others with DLBCL who have had similar experiences.

You can also find helpful information and support online through a variety of disease-focused associations.

Visit our DLBCL Support and Resources page for a list of associations and organizations that may be able to help.

Get additional resources

Not an actual patient or caregiver.

Support for Caregivers

As a caregiver, you play a vital role in the life and care of your loved one living with DLBCL. However, caring for someone with DLBCL may feel overwhelming at times. You may become so focused on the needs of your loved one, it may be easy to neglect your own needs.

Communicating with your loved one about DLBCL

It can be hard knowing what to say to someone with cancer. If you have trouble talking to your loved one about their cancer, you are not alone.

The most important thing is to listen

Try to put your own feelings and fears aside

It’s important to try to hear and understand how your loved one feels without judging

Let them know that you are open to talking whenever they are ready, even if they don’t feel like it at the moment

Not an actual patient
or caregiver.

Caring for yourself

It’s important to remember to take the time to care for yourself—both physically and emotionally—so that you can better care for your loved one.

Remember, you are not alone. It’s OK to ask for help. Family and friends may be willing to take on certain tasks to help ease your burden, so don’t be afraid to ask.

Your physical health is important

Here are a few tips to help you better care for yourself physically:

Be sure to get enough exercise. In addition to helping you improve your health, exercise may also help reduce stress and anxiety.

Eat well-balanced meals to get the nutrition your body needs.

Try to get enough sleep at night, and take time to rest during the day.

Seek proper medical care for yourself by seeing your own physician(s).

Remember to always ask your physician or healthcare provider before starting any new exercise or diet program.

Remember to take a break

It’s important to remember to take time for yourself. However, depending on your loved one’s situation, it may not always be possible to take a full day off. But even taking 30 minutes a day for yourself can be a big help.

Take a few minutes here and there to try deep breathing techniques or listen to relaxing music.

Take a short walk around the block.

Participate in a favorite hobby or activity.

Don’t be afraid to ask for help. Take family and friends up on offers to help.

Tips for talking with others about your own needs

According to the American Cancer Society, the following tips may be helpful when communicating with others about your own needs and feelings.

Respect your own feelings, needs, and desires in addition to those of your loved one

Speak out about your feelings while being sensitive to the feelings of others

Try to use “I” statements instead of “you” statements. For example, try saying, “I could use a break” instead of “you never help out”

Focus on the present rather than bringing up old hurts

Not an actual caregiver.

Finding support online

Local or online caregiver support groups may also be a source of support. Talking with other caregivers who can relate to your situation can help ease loneliness, and may even be a source of additional helpful ideas. To help you cope as a caregiver, be sure to discuss any medical or disease-related information with your loved one’s healthcare team. Remember that each patient’s DLBCL journey may be different.

The Cancer Support Community and The Leukemia & Lymphoma Society offer online resources to help support caregivers.

Visit the Cancer Support Community Visit The Leukemia &
Lymphoma Society

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RC-US-TAF-01865

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