Pushing for an Accurate Diagnosis
- Jace, a Florida-based marketing entrepreneur, 25, started experiencing fatigue in 2023, and after worsening symptoms and multiple doctor visits. He eventually found out that he had lymphoma, a cancer of the lymphatic system, which is part of your immune system.
- The young survivor is now sharing his story to stress the importance of advocating for your health when you feel that something is off with your body. You know your body better than anyone else.
- When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward.
The Florida-based marketing exec, who has chosen not to disclose his last name, is now sharing his story to stress the importance of advocating for your health.
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Jace first noticed his low energy level while on a run in Central Park during a business trip in New York City.
“I could not catch my breath,” he recounted. “It was alarming. I had to stop multiple times to catch my breath. My heart was pounding incredibly hard. It felt like it was beating out of my chest.”
Jace suddenly felt “horrible” back pain in his upper back toward his shoulder blades. “I had shooting pains all the way through my arm.”
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He went to urgent care to try to scope out the source of his pain, and was put on steroids and a muscle relaxer. Following up with another doctor, he was prescribed treatment for acid reflux. A third doctor recommended a sports injury specialist.
Not knowing where to turn, he started feeling even worse with night sweats and in the meantime, had lost 20 pounds. Jace finally saw an oncologist, who diagnosed him with non-Hodgkin lymphoma.
Per MD Anderson Cancer Center, non-Hodgkin lymphoma is more common that Hodgkin lymphoma, which usually starts in the B lymphocytes, a type of white blood cell, and both are slightly more common in men. Ironically, Hodgkin lymphoma is more common in young adults, and Jace’s type is more common in men over 60.
Sharing his journey on Instagram, JaceBeatsCancer, the health advocate has documented all of his doctor visits, chemotherapy sessions and all the side effects that have come from his therapies.
“I decided to start posting content not just to document the journey for myself but to document, really, the journey for my loved ones and my friends so that they could see how I was doing and what I was going through. I had no idea that people would be drawn this content.”
Additionally, he has learned vulnerability at a very young age and now knows firsthand just how fragile life can be.
“The most compelling lesson that I’ve learned through this is to understand what’s truly important in life, and for me, what’s truly important is helping other people and spending time with those you love. If you can do those two things, you will have a very, very fulfilled life.”
Advocating for Your Health
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward.
From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
As a patient, if you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.
Learning About Non-Hodgkin Lymphoma
When doctors diagnose people with non-Hodgkin lymphoma, they’re not talking about a single cancer, but many.
“Non-Hodgkin lymphoma is a big category,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, tells SurvivorNet.
According to the American Cancer Society, all non-Hodgkin lymphomas start in white blood cells called lymphocytes, which are part of your body’s immune system. From there, doctors separate these cancers into types based on the specific kind of lymphocytes they grow from: B cells or T cells. Knowing whether you have a B-cell or a T-cell lymphoma is important, because it will determine what kind of treatment you get.
Non-Hodgkin Lymphoma: It’s More Than Just One Type
If you live in the United States and are diagnosed with non-Hodgkin lymphoma, there’s a good chance it’s the B-cell variety. About 85% of all lymphomas diagnosed in North America are B-cell lymphomas. And in the United States, these cancers affect white people more often than African Americans or Asian people.
T-cell lymphomas are more common in other parts of the world, such as Asia. That may have to do with causes that are unique to those regions, Dr. Vose says.
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Doctors further divide B-cell lymphomas into a few subtypes:
Diffuse large B-cell lymphoma is the most common type. One out of every three people diagnosed with lymphoma in the United States has this type. If you have diffuse large B-cell lymphoma, the first sign might have been a swollen gland in your neck, armpit, or belly. This is a fast-growing cancer, but it is treatable. In many people, it’s curable.
A Common Type of Non-Hodgkin Lymphoma
Follicular lymphoma is the second most common type of lymphoma, and it usually starts later in life. Although it’s not as curable as diffuse large B-cell lymphoma, it grows slowly. “Patients often have symptoms for months or years before they’re diagnosed,” Dr. Vose says. Some people with this cancer don’t need to start treatment right away. People who do go on treatment have a good likelihood of going into remission.
Chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) are variations on the same type of cancer. They both affect a cell called a small lymphocyte. The difference is, CLL cells are in the blood and bone marrow, while SLL cells are in the lymph nodes and spleen. Both cancers grow so slowly that many people live for decades with them.
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Mantle cell lymphoma is a relatively rare cancer. It can be challenging to treat, because it grows quickly and it doesn’t respond as well to cancer drugs as some of the other lymphomas. But researchers are working on new therapies that will hopefully improve survival for people who are diagnosed with this cancer.
Marginal zone lymphomas start in cells that look small under the microscope. This is a group of cancers that tend to grow slowly.
There are other types of B-cell lymphomas, including Burkitt lymphoma and hairy cell leukemia, but they are rare.
Risk Factors of Non-Hodgkin Lymphoma
Currently, there’s no test to screen for lymphoma. Most lymphomas that are caught in the early stages are detected because a person sought medical treatment for some other issue.
Until an effective screening test does become available, you can increase your odds of finding lymphoma early by knowing whether you’re at risk, and staying alert for symptoms.
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You might be at higher risk for this cancer if you:
- Have been infected with the HIV or Epstein-Barr virus
- Had an organ transplant
- Have a family history of lymphoma
- Have been treated with radiation or chemotherapy drugs for cancer in the past
- Have an autoimmune disease
Treatment for Non-Hodgkin Lymphoma
If your cancer is more aggressive, whether it’s T-cell or B-cell, you can expect to get chemotherapy. Chemo may be part of a cocktail of drugs doctors call R-CHOP. That’s short for:
R rituximab, an antibody drug that targets cancer cells
C cyclophosphamide, a chemotherapy drug
H doxorubicin hydrochloride, a chemotherapy drug
O vincristine sulfate (Oncovin), a chemotherapy drug
P prednisone, a steroid
These drugs work synergistically, going after your cancer in different ways to treat it more effectively. You’ll get them once every three weeks. All of the drugs are given through a vein in your arm, except for prednisone, which comes as a pill.
Non-Hodgkin Lymphoma Treatment: Finding the Right Fit for You
Radiation can also be used at several different stages for people who have non-Hodgkin lymphoma. For patients with slow-growing disease, radiation may be the only treatment your doctor recommends. For patients with larger or more aggressive disease, radiation may be recommended after chemotherapy.
Radiation can also be used in patients who have relapsed to ease symptoms or target specific areas.
About 60% of patients who get the R-CHOP chemo combination will be cured. For the other 40% who need additional treatment, your doctor may recommend a different kind of chemotherapy than you had the first time.
Doctors follow up that second round of chemo with a stem cell transplant, which uses a patient’s own stem cells, taken before treatment and given back afterwards.
Contributing by SurvivorNet Staff
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