Understanding Indolent Non-Hodgkin Lymphoma
The broader category of lymphoma a ects approximately 8,000 new patients every year in Canada. It is broken down into Hodgkin lymphoma and non-Hodgkin lymphoma, with non-Hodgkin lymphoma being far more common. Non-Hodgkin Lymphoma (NHL) is further divided into aggressive and indolent varieties, which again have very di erent treatment approaches.
Lymphoma is a cancer of the lymphatic system. While most Canadians have an understanding of cancer, few understand the lymphatic system.
“Many people aren’t aware that lymphoma is a cancer,” says Robin Markowitz, Chief Executive O cer of Lymphoma Canada. “It’s not uncommon that we receive a call from someone saying ‘I’ve just been diagnosed with lymphoma and I’m really upset, but at least it’s not a cancer.”
The lymphatic system is a vital component of the circulatory system which provides important immune functions. The system includes the tonsils, adenoids, spleen, thymus, and six to seven hundred lymph nodes throughout the body. Lymphoma is a form of cancer that a ects the immune system, specifically lymphocytes that are found in the blood. Indolent non-Hodgkin lymphomas are characterized by low-grade tumours in the lymphatic system that grow slowly, with patients often being completely without symptoms.
Treating cancer by waiting patiently
With indolent NHL, patients must understand that the disease is usually incurable. That does not, however, mean that the prognosis is poor, given how slowly the disease can sometimes progress and the wealth of treatments available. “The average time that a patient can be observed before they begin to develop even minor symptoms that might lead to treatment is two and half years,” says Dr. Kuruvilla. “This means that, on average, for the first two and half years I’m looking after a patient, they won’t need anything done. They’ll feel perfectly well. They’ll just come in every few months for a monitoring visit. Up to 10 percent of patients won’t require treatment for about ten years. That’s a very powerful message to give to patients.”
This observation period is called watchful waiting, and it can sometimes be a difficult one for patients to understand or accept. With many other cancers, the earlier treatment begins, the better the outcomes, but with indolent NHL, the opposite is often true. Chemotherapy, for example, is a significant treatment that can have serious side e ects, and research has shown quite clearly that providing chemotherapy treatment when there are no symptoms has no e ect on overall survival.
Instead, doctors will wait until the disease begins to progress and cause symptoms, at which point they will provide the best treat- ment – one that balances toxicity and side effects with effectiveness in treating the cancer. If the cancer returns (and the probability is high), they will advance up the treatment ladder one step at a time. In Canada, this treatment path is now formalized in an evidence-based guideline published by a team of doctors, of which Dr. Kuruvilla was an author. The objectives of these new guidelines were to provide a standard for patients and clinicians across Canada to highlight the common approach in treating follicular lymphoma, the most common form of indolent non-Hodgkins Lymphoma. The guideline recommendations are the best treatments as identified by Canadian experts in the field and are not restricted to recommendations based on provincial funding of drugs.
Remission periods growing longer and longer
As new treatments have become available, and the treatment path got refined, the overall results have been dramatic. “Not even ten years ago, the standard remission duration after a first treatment was only in the range of 12 to 18 months,” says Dr. Kuruvilla. “Now, with the treatments we are giving today, it is very likely a patient will be in remission for five to seven years after first treatment .Average survival is now also much longer, because of all this great new therapy that has been developed in the last five to ten years and is now standard, let alone the newer therapies that we are continuing to work on.”
Though the disease remains incurable, an ever increasing number of patients are living long and happy lives with the disease. “We have a lot of great stories of people who didn’t think they would have any future,” says Markowitz. “And now, they have children and great jobs and they’re living their lives to the fullest. And that’s our goal. We really want patients to live their fullest lives, with lymphoma.” Markowitz adds though, that while treatments for non-Hodgkin lymphoma have improved significantly, not all patients in Canada have access to the best available care. One key role for Lymphoma Canada is to support and speak out on behalf of patients across Canada. She encourages all patients and their families to access Lymphoma Canada’s website for more information.