Finding the Right Time to Share Your Diagnosis
- Blink 182 co-lead singer Mark Hoppus, 53, is in remission after beating an aggressive form of lymphoma – a type of blood cancer impacting the immune system. After his diagnosis, he accidentally shared his cancer on social media before he was ready.
- Some people battling a disease or cancer are open to sharing their experiences as much as they can, while others prefer to keep it to themselves. SurvivorNet experts say both approaches and everything in between are valid.
- Lymphoma is a cancer of the immune system that affects infection-fighting cells called lymphocytes. Non-Hodgkin lymphoma is much more common than Hodgkin lymphoma, and it typically starts later in life.
- About 1 in 5 people with non-Hodgkin lymphoma have the diffuse large B-cell variety, making it the most common type of non-Hodgkin lymphoma in the United States. This is a fast-growing cancer, but when caught early, treatment success rates are high.
- R-CHOP is an effective treatment for aggressive non-Hodgkin lymphoma. It stands for Rituximab (Rituxan), a monoclonal antibody, Cyclophosphamide (a type of chemotherapy drug), Doxorubicin hydrochloride (hydroxydaunomycin—a kind of chemotherapy drug), Vincristine sulfate (Oncovin—a sort of chemotherapy drug), and Prednisone (a steroid).
For many facing a diagnosis, the decision to go public is deeply personal. Some openly document their struggles, while others keep their fight private. As Hoppus’ story highlights, revealing a diagnosis should be done on one’s own terms—when the time feels right.
Some people battling a disease or cancer are open to sharing their experiences as much as they can, while others prefer to keep it to themselves. SurvivorNet experts say both approaches and everything in between are valid.
Expert Resources on non-Hodgkin Lymphoma
Figuring Out If You’re Ready to Share Your Diagnosis
Some people battling a disease or cancer are open to sharing their experiences as much as they can, while others prefer to keep it to themselves or close loved ones. SurvivorNet experts say both approaches, and everything in between, are valid.
WATCH: Sharing a Diagnosis
“Patients who have just been diagnosed with cancer sometimes wonder how they are going to handle the diagnosis of the cancer in social situations,” psychiatrist Dr. Lori Plutchik explains.
Plutchik says patients consider questions like “How much information should they share and with whom should they share the information?”
Dr. Plutchik explains, “There is no one right way to handle this diagnosis. People should do what feels right to them.”
A cancer journey can last months to years, which means cancer warriors may be experiencing a lot of uncertainty until they fully understand where their health stands. This uncertainty can influence when a cancer patient is ready to share their diagnosis, Dr. Plutchik further explained.
Dr. Plutchik stresses that those close to a person going through cancer should be respectful of their wishes when it comes to disclosing their diagnosis and seeking support.
Understanding Hoppus’ Lymphoma Diagnosis
Hoppus was diagnosed with stage 4 diffuse large B-cell lymphoma in June 2021 after seeing his doctor about a lump on his shoulder.
He received chemotherapy for treatment, which helped him reach remission. After being declared “cancer-free,” the famous rock singer added that he “still has to get screened every six months” in an Instagram post.
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B-cell lymphomas are by far the most common type of lymphoma. They have various subtypes based on how aggressive the cancer is and how quickly you’ll need treatment if you’re diagnosed.
About one out of every three people with lymphoma in the United States has this B-cell lymphoma. It usually starts in a lymph node — either in an area where you can feel it, such as your neck or armpit, or deeper in your body, in your chest or stomach. Although diffuse large B-cell lymphoma grows quickly, it responds well to chemotherapy and other treatments. About three in four people have no signs of disease after their first treatment, and many will be cured.
Treating Diffuse Large B-Cell Lymphoma
The standard treatment for diffuse large B-cell lymphoma is a combination of four drugs that doctors nickname RCHOP.
Here’s how the acronym breaks down:
- R: Rituximab (Rituxan) is a monoclonal antibody that attaches to a specific protein called CD20, which sits on the surface of the lymphoma cell.
- B cells. It targets the cancerous cells and destroys them.
- C: Cyclophosphamide is a type of chemotherapy drug
- D: Doxorubicin hydrochloride (hydroxydaunomycin) is a type of chemotherapy drug
- V: Vincristine sulfate (Oncovin) is a type of chemotherapy drug
- P: Prednisone is a steroid which lowers inflammation
WATCH: Better Understanding R-CHOP treatment regimen
Combining drugs allows the treatment to attack the cancer in different ways.
In people with stage I or stage II diffuse large B-cell lymphoma, where the areas of cancer are following one another, doctors can also use radiation. Radiation uses high-energy X-rays to kill cancer cells.
The success rate with this treatment is about 80% in people with stage I or II cancers. “So you’re getting two potentially curative approaches to your disease to get very high success rates,” Dr. Schuster says.
Patients receiving R-CHOP receive the drug in six cycles that are three weeks apart.
R-CHOP side effects can include:
- Tiredness and weakness
- Hair loss
- Mouth sores
- Bruising and bleeding
- Increased risk of infection
- Appetite loss and weight loss
- Changes in bowel movements
More on Non-Hodgkin Lymphoma
“Non-Hodgkin lymphoma is a big category,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, previously told SurvivorNet.
All non-Hodgkin lymphomas begin in white blood cells known as lymphocytes, which are part of your body’s immune system. From there, doctors categorize these cancers into types based on the specific type of lymphocytes they originate from: B cells or T cells.
Knowing which of these you have can help steer you to the most appropriate treatment.
WATCH: Non-Hodgkin lymphoma Treatment
One way doctors categorize these cancers is based on how quickly they’re likely to grow and spread. “The two main classifications I think of in terms of non-Hodgkin lymphoma are lymphomas that are more indolent and those that are more aggressive because those are treated very differently,” Dr. Jennifer Crombie, medical oncologist at Dana-Farber Cancer Institute, tells SurvivorNet.
About 85% of non-Hodgkin lymphomas affect B cells. These cells produce antibodies and proteins that react to foreign substances in your body, like viruses or bacteria. The antibodies bind to another protein on the surface of the invading cells, known as an antigen, to target and destroy them.
Questions for Your Doctor
If you have been diagnosed with lymphoma, it’s important to ask your doctor a series of questions to get an idea of your next steps. To help you during this difficult time, SurvivorNet has some questions to kickstart your conversation with your physician.
- What type of lymphoma do I have?
- What does my pathology report say about my diagnosis?
- Should I get a second opinion before I explore possible treatment options?
- Based on my diagnosis, what do you anticipate my treatment path?
- What common side effects should I expect when I begin treatment?
- Will I be able to continue working and normal daily activities during treatment?
- Where can I get help working with the insurance company regarding treatment costs?
- Who do you recommend I get mental health help during my treatment?
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