Getting a Confirmed Follicular Lymphoma Diagnosis – What Can I Expect?

When you received your follicular lymphoma (FL) diagnosis, you probably had many questions running through your head, perhaps along the lines of – What exactly do I have? What type of biopsy is needed to determine the diagnosis? What can I expect in the future? What does this mean for me and my loved ones?

Check out our webinar, titled “An Overview of Follicular Lymphoma: What You Need to Know,” where we looked at the process of getting a confirmed lymphoma diagnosis and what you can expect next in the process of diagnosis.

Patient scenario

Imagine a generally active and healthy man in his mid-sixties, who remains employed and takes only a statin for high cholesterol and perhaps a daily aspirin. Recently, he noticed that his shirt collar felt a bit tight, and upon further investigation, he discovered an enlarged lymph node in his neck. Concerned, he visited his doctor, who found a couple of small nodes roughly a few centimetres (or an inch) in size. A biopsy was taken, and blood work was conducted to uncover the root cause of the swelling.

This scenario is quite typical of patients newly diagnosed with FL, with men in their sixties being the most commonly affected demographic.

Testing for unrelated conditions

Many patients are diagnosed with FL after undergoing tests for unrelated conditions, such as mammograms, MRIs, CT scans, or X-rays. In these instances, when an abnormality is detected, a tissue sample (biopsy) is routinely taken to establish a definitive diagnosis, as there are many causes of enlarged lymph nodes other than lymphoma.

Diagnosis confirmation and evaluation

A biopsy may be done by a surgeon, or by an interventional radiologist under guidance of a scan. In some cases, the initial step is a fine needle aspiration biopsy taken from the lymph node to investigate the cause of enlargement. However, a conclusive diagnosis for FL typically requires a more substantial tissue sampling, such as a core needle biopsy or an incisional/excisional biopsy conducted in the operating room to retrieve a larger piece of tissue for more definitive results.

Staging

When a biopsy confirms a diagnosis of FL, the next crucial step is to assess where the lymphoma is in the body. Since lymphoma comes from a type of blood cell, it is often found in multiple areas around the body. This process is known as staging, and it involves a series of tests, including blood work, scans, and sometimes a bone marrow evaluation.

Blood work can check liver and kidney blood tests to routinely assess if there is any organ damage, or to see any signs the bone marrow is affected.

Imaging

Traditional CT scans are used to capture images of the patient from the neck down to the pelvis to check for enlarged nodes, liver, or spleen. More recently, PET-CT scans have gained popularity due to their ability to provide functional imaging, giving insights into the activity as well as the size of the lymphoma. While the UK commonly uses PET scans, other regions may still opt for CT scans. Regardless, these two imaging modalities are the primary approaches used.

What are the signs in a patient that the bone marrow could be affected by the lymphoma?

A complete blood count (CBC) checks for low red cells (a sign of anaemia), which may cause symptoms of feeling weak, breathless, or lightheaded. CBC also looks at platelets (cells which help blood clot) and white blood cells (cells which fight infection), which are all made in the bone marrow. If the CBC results are not normal, the doctor may wish to investigate further and carry out a bone marrow aspiration and biopsy to see if FL is in the marrow. Bone marrow aspirations and biopsies are performed by placing a needle into the hip or pelvic bone and drawing a sample of fluid and extracting a little bit of bone. The bone marrow is affected by the lymphoma in 50% to 60% of patients. Bone marrow biopsies used to be routine, however PET scans now are highly sensitive and able to show us if the bone marrow is affected, therefore saving the patient from having to go through the bone marrow procedure.

Empowering patients with knowledge

Understanding the biopsy process and obtaining a confirmed diagnosis marks the starting point for patients diagnosed with FL. Armed with this knowledge, they can proceed with confidence on their journey towards managing and treating the condition.
Patients being well-informed about their condition empowers them to actively participate in their treatment decisions and advocate for their health. It is always recommended for patients to consult their healthcare team and rely on their expertise to guide them through this journey.

If you have found this blog useful, you may also be interested in our blogs on:

Staying Positive with Follicular Lymphoma
What Are the Emotional Stages of a Cancer Diagnosis?

 

Disclaimer: The information provided in this blog post is for educational purposes only and should not be considered a substitute for professional medical advice. Always consult with your healthcare provider for personalised guidance and treatment options.