Explaining Your Diffuse Large B-Cell Lymphoma Diagnosis

How treatment works and how to share your diagnosis with loved ones
diffuse large b-cell lymphoma, lymphoma, cancer care, cancer

Understanding and processing your cancer diagnosis can be challenging and scary. This is especially difficult when you’ve been diagnosed with a more aggressive type of cancer like diffuse large B-cell lymphoma.

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Although diffuse large B-cell lymphoma is the most common form of lymphoma, being diagnosed can still raise a lot of questions, especially from loved ones who want to offer you support during treatment. Oncologist Robert Dean, MD, answers some of those questions and provides advice for anyone dealing with this diagnosis.

What is diffuse large B-cell lymphoma?

Lymphomas are blood cancers that develop from a type of white blood cell called a lymphocyte. These white blood cells are part of your lymphatic system, which helps protect your immune system against infection.

“Think of the lymphatic system like a series of gutters that collect excess fluid that drains out of our tissues and funnels it back into our bloodstream,” says Dr. Dean.

Along these drainage channels, you have lymph nodes that function like guard stations. These lymph nodes produce a specific type of white blood cell called B-cells. B-cells make antibodies that attach themselves to viruses, bacteria and fungi, and these antibodies prevent them from infecting other cells.

Sometimes, these B-cells can transform into cancerous cells that can spread from the tissues of your lymphatic system, such as your lymph nodes and spleen, to other areas of your body, including your bone marrow and other organs. The most common fast-growing form of lymphoma is known as diffuse large B-cell lymphoma because it forms random or “diffuse” growth patterns, and consists of cancerous B-cells that are larger than a fully mature, normal B-cell.

If you have diffuse large B-cell lymphoma, you might have a hard, enlarged lymph node that appears suddenly and grows over a relatively short amount of time. The lymph nodes that are affected by diffuse large B-cell lymphoma usually aren’t painful, but you can also experience sudden tumor growth in other organs that can cause a moderate amount of discomfort.

“With lymphoma, you’re dealing with a form of white blood cell that normally travels to different places in the body as part of its regular everyday work,” explains Dr. Dean. “Because of that, we think about lymphomas similarly to how we think about leukemia as being a system-wide form of cancer from the get-go.”

As it’s such a mobile, fast-growing cancer, surgical treatment isn’t usually the first or only line of defense.

“If you try to do that, you end up playing a game of ‘Whac-a-Mole,’ where you think you’ve taken out everything that you could see, but then it pops up somewhere else,” says Dr. Dean.

Instead, doctors will often rely on a combination of chemotherapy and immunotherapy drugs to attack and kill lymphoma cells and reduce tumor growth. Everyone responds to treatment differently, but in many cases, it can involve up to six rounds over 4 1/2 months.

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Common questions about diffuse large B-cell lymphoma

The days and weeks after receiving a diagnosis for diffuse large B-cell lymphoma can be a scary time for everyone. With so much sudden change, you and your family will likely have several questions about how to navigate treatment, and your need for self-care will be paramount. Here’s how to address some of those important questions you and your loved ones may be asking.

What are the chances of survival?

Overall, about 70% of people with this form of lymphoma are cured with standard treatment. But researchers continue to identify new forms of treatment. Polatuzumab vedotin, which more specifically targets lymphoma cells, is Food and Drug Administration (FDA)-approved for people who’ve relapsed. This form of treatment is expected to be approved soon as part of first line of treatment because it’s been shown to improve survival. Other important treatments for people who’ve relapsed include:

  • CAR T-cell therapy: This form of therapy cures some cases where initial treatment wasn’t effective by turning your own T-cells into more efficient cancer-fighting machines.
  • Tafasitamab: Given in combination with lenalidomide, this has been fast-tracked by the FDA as a treatment that works for people who relapse with diffuse large B-cell lymphoma.

Surprisingly (and somewhat ironically), diffuse large B-cell lymphoma is more easily cured than indolent (slow-growing or low-grade) versions of B-cell lymphoma.

“Diffuse large B-cell lymphoma tends to become noticeable more quickly than slow-growing, low-grade types of lymphoma, which can fly below the radar for a long, long time,” notes Dr. Dean. “Low-grade lymphomas also almost always come back again. But in aggressive large B-cell lymphomas, if someone stays in remission through a couple years, most of the time, they won’t experience relapse.”

How will you feel during treatment?

If you’ve chosen to move forward with treatment, it’s important to be informed and prepared about how it will affect your body. As with most forms of chemotherapy, side effects that can occur during treatment include:

There are ways of managing these side effects, so it’s important to maintain communication with your doctor as you undergo treatment.

The good news: If you’ve experienced sudden growth in your lymph nodes, this growth may decrease significantly very early on in treatment.

“Large lumps begin to get better within literally days of the very first treatment,” says Dr. Dean. “It’s a fast-responding cancer, so if people are feeling sick from the cancer itself, they usually start to feel better in a hurry and then deal with some level of ups and downs, but generally pretty manageable side effects as they’re going through treatment.”

How can your loved ones help?

Your family and friends can be an important support system you rely on during this difficult time. As you communicate your needs and wants during treatment, it’s important to recognize where you’re at mentally and emotionally.

“The first thing I would say is to not make assumptions about how they’re going to feel and what they’re going to be able to do until they’ve gotten through their first treatment,” advises Dr. Dean.

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Everyone responds to treatment differently. While some may be able to carry on normal activity, others may have a tougher time from the outset — especially if they’ve experienced rapid cancerous growth across multiple areas.

“The second thing I would say is on the flip side, you shouldn’t assume they can’t do anything,” says Dr. Dean. “One of the things that really rocks people mentally as they’re dealing with a diagnosis like this is the uncertainty about what the future is going to hold and what it takes away from them.”

Sometimes, in the interest of being protective, family members take a lockdown mentality and that can be hard for people mentally and emotionally as they’re trying to get through treatment.

Dr. Dean suggests paying attention to what your body is telling you: If you’re feeling up to normal activities, like going to work or playing outside with your kids, you should maintain that sense of normalcy whenever possible. But if you’re feeling tired and unwell, it’s OK to take things slow.

“I encourage people to stay engaged and involved in the things that are helpful for them and help keep them mentally resilient as they’re going through treatment while still being sensible,” says Dr. Dean.

Resources for patients and caregivers

This goes without saying, but it’s certainly worth a reminder: Your No. 1 resource is your oncologist. There are several questions you can ask during the course of your treatment if you ever need clarity, explanation or just additional support.

“They can really be your copilot as you’re going down this road of treatment and recovery,” says Dr. Dean.

Other important resources include:

  • Chemo Care: This online reference provides explainer sheets for chemotherapy drugs and other treatments, as well as helpful tips for managing side effects.
  • The Leukemia & Lymphoma Society: This nonprofit provides outreach, education and support for patients and caregivers dealing with blood cancers.
  • 4th Angel Mentoring Program: This interactive approach to cancer support pairs up patients with volunteer mentors who can share their lived experiences with cancer.

“The process of cancer treatment is complicated in a lot of ways,” says Dr. Dean. “But there’s a lot that lies behind why we do what we do. If something isn’t making sense, you should feel empowered to ask for more information.”

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