No parent wants to see their child sick, but it can and does happen. While cancer is a diagnosis that no one wants, we do know that with an early diagnosis — and the many effective therapies available — recovery can be possible.
If your child was recently diagnosed with non-Hodgkin’s lymphoma (NHL), you may have questions about not just the disease, but the types of treatments usually prescribed and how well they work.
What are the symptoms of non-Hodgkin’s lymphoma in children?
Pediatric non-Hodgkin’s lymphoma (NHL) is a condition that impacts your child’s lymph nodes. While symptoms can appear gradually, the disease can also spread quickly. Keep in mind that symptoms can vary depending on where the cancer first begins to develop.
For example, if the cancer begins in the spine, you might also notice that your child has difficulty walking, weakness in their legs, or may even struggle with incontinence.
Symptoms in babies
appetite or weight loss
difficulty breathing and coughing
swelling in the belly
Symptoms in children & teens
swollen lymph nodes — usually beginning in the neck, chest, underarms, or groin
cough and shortness of breath — if swollen nodes are in the neck and chest
paler skin — this symptom may not be apparent depending on the child’s skin tone
stomach pain — if NHL begins in the abdomen
change in bowel movements — also if NHL starts in the abdomen
Diagnosis process in children
One of the best ways to detect NHL early is to be aware symptoms and to take action if you suspect something is wrong with your child. Because it’s not a common childhood cancer, there aren’t widely recommended screening tests to detect NHL.
However, the diagnosis will usually begin with a medical history and physical exam. Sometimes, NHL is diagnosed through a process of elimination. While swollen lymph nodes are the biggest contributing symptom of NHL, several curable diseases or illnesses like a simple infection can also cause this symptom to appear.
It’s not uncommon for doctors to begin by trying to treat the swollen nodes with antibiotics. This is because infection is usually the most common reason for swollen lymph nodes in children. But if the lymph nodes don’t respond to the treatment, more tests may be recommended, including a biopsy to determine the cause of the swollen nodes.
The speed of diagnosis will also depend on how quickly the nodes are growing. Similarly, if a child’s health seems to be getting worse, doctors will move through the diagnosis process faster. Also, the type of biopsy performed will depend on where the swollen lymph nodes are located. But the most common methods are surgical biopsy and bone marrow biopsy.
While biopsies are an essential part of the diagnosis process, other tests may be performed. This can include several tests to find potential hidden areas of abnormal growth, such as:
Additionally, your child might undergo an EKG-Echo (electrocardiogram and echocardiogram) and a pulmonary function test to determine heart and lung function before starting treatment.
How common is non-Hodgkin’s lymphoma in children?
NHL isn’t a common cancer in children or teens. However, some risk factors might increase a child’s chances of being diagnosed with it, such as:
prior cancer treatment
undergoing an organ transplant procedure
having an inherited immune deficiency
Types and stages of NHL found in children
Determining the right course of treatment is dependent upon the type of NHL that a child has. This is why biopsies are important so that the type can be accurately identified. The type of NHL depends on the type of lymphocyte (white blood cell) where the cancer first begins to grow.
Childhood NHL is usually quite different from adult NHL. However, childhood lymphoma is considered more aggressive because of how quickly the cancer can grow and spread.
There are four main types of childhood NHL:
lymphoblastic lymphoma (LBL)
Burkitt’s lymphoma (small non-cleaved cell lymphoma)
anaplastic large cell lymphoma (ALCL)
diffuse large B-cell lymphoma (DLBCL)
With cancer, the stage refers to how advanced or how much cancer growths are detected when the disease was first diagnosed. NHL is divided into four stages with one being the lowest and four being the most advanced. Stage one and two lymphomas are referred to as limited-stage while three and four are considered advanced-stage.
Stage I: The lymphoma is only in one place such as either one tumor, or located within one part of the body, and isn’t present in the chest or abdomen.
Stage II: The lymphoma is in one area outside the lymph nodes and in nearby lymph nodes, or it can be in two or more areas above or below the diaphragm along with spreading to nearby lymph nodes. Additionally, there might be a tumor in the digestive tract that can be removed with surgery.
Stage III: The lymphoma may have started in the chest. The tumor may have started in the abdomen but spread too much to be easily removed through surgery. The tumor may be near the spine or there may be more than one tumor present outside of the lymph nodes. Additionally, the tumor may have spread widely to groups of lymph nodes both above and below the diaphragm. Or, the tumor is present in the bone and potentially a nearby area.
Stage IV: The lymphoma has spread to the central nervous system — either in the brain or spinal cord — or the bone marrow.
How is NHL treated in children?
Keep in mind that treatment can vary based on the type and stage of NHL that your child has.
However, chemotherapy is usually the main treatment. Some children may also be prescribed a combination of not only chemotherapy but also drugs and steroids. If drugs or steroids are recommended, the prescription will depend on the type and stage of cancer that your child has.
Sometimes surgery may also be used to remove tumors, and in some rare cases, a child might undergo radiotherapy. Additionally, if a child has recurrent lymphoma, they may require more intensive chemotherapy and even have a stem cell transplant.
Treatment timelines vary widely depending on the type and stage of the cancer. Sometimes, clinical trials are also recommended when treating recurrent NHL, to allow your child to benefit from the most cutting-edge treatments available.
Prognosis and outlook for NHL in children
While the thought of childhood cancer is scary, know that NHL has a high prognosis rate for children. Oncologists usually don’t speak in terms of general success rates but rather the 5-year survival rate. This means that a child has survived 5 years after completing treatment.
Although individual prognoses will depend on the type and stage of cancer your child has, the success rates for treatment are roughly 80 to 90 percent across all types. Stage I and II NHL have the highest success rates at greater than 90 percent, while stage III and IV NHL range from 80 to 90 percent.
Cancer is a traumatic experience both for the patient and their family. But for parents, having a child with cancer can be especially difficult — especially if they’re young. Along with trying to keep them informed in an age-appropriate way, parents must also manage the emotional rollercoaster associated with the entire process from diagnosis to treatment.
Along with remembering that children take their cues from their parents, it’s important to have a strong support group. Check out some of these organizations for more resources:
Americal Society of Clinical Oncology — keeps a database of resources for childhood cancer
Blood Cancers Patient Support Group — is run by Cancercare
Child Life — is run by the University of Chicago and helps kids feel like kids in the hospital
Lymphoma Action — organizes support groups across the UK
The Leukemia & Lymphoma Society — hosts support groups for people with cancer and their caregivers
The Lymphoma Research Foundation — runs a variety of support groups
Momcology® — gives valuable support to mothers of children with cancer
Be prepared that your child might experience side effects from the treatment. This can range from hair loss to weight loss, pain or discomfort from medications, and loss of appetite. Take time to talk with your child about these side effects before they happen, so you can have a plan ready if they do.
Don’t forget to take time to have fun — both for you and your child(ren). Taking a moment to relax can help to provide a mental reset as well as distract from cancer treatment. And don’t be afraid to seek therapy for your child and yourself.
Ongoing clinical trials
Treatments provided by clinical trials are a common option when treating childhood NHL.
The National Cancer Institute offers an active database for ongoing clinical trials with filters that allow you to adjust for the specific type of NHL your child has and their age.
Discuss any trial you’re interested in with your child’s doctor or oncology team before adding that treatment to your child’s plan.