Lymphoma Survivors Report Burdensome Late Effects & Follow-Up Care After Multimodality Treatment

By Mia Garchitorena
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Patients with Hodgkin (HL) and non-Hodgkin lymphoma (NHL) often achieve excellent disease outcomes, but a new study presented at the 2018 American Society of Clinical Oncology (ASCO) Cancer Survivorship Symposium found that they are at risk for developing a number of late- and long-term effects (LLTEs) after chemotherapy and radiation therapy. The patients also reported “suboptimal” survivorship care practices.

Researchers from the University of Pennsylvania (UPenn) in Philadelphia used a public Internet-based survivorship care plan (SCP) tool to analyze the care received and side effects experienced by 964 survivors of HL and NHL between 2011 and 2016.

Lymphoma. (Source: Flickr)

Out of all the patients, 67% were female and 84% were Caucasian. The median age for patients with HL was 28 years old and 49 years old for patients with NHL. The median follow-up for HL patients was five years while NHL patients were followed up with at two years. Eighty-eight percent of the survivors were cancer-free while 9% had a recurrent or secondary malignancy and 3% had metastatic disease.

Eighty-nine percent of HL survivors and 94% of NHL survivors received chemotherapy and radiation therapy (64% of HL, 28% of NHL, respectively). Ninety-six percent of HL patients and 61% of NHL patients received chest/mantle radiation therapy (RT).

The survivors reported a series of late- and long-term effects. According to the study, patients who received chest RT reported hyper- or hypothyroidism (35%), issues with speaking or swallowing (20%), heart disease (14%), pulmonary fibrosis/pneumonitis (12%), skin cancers (9%), and thyroid nodules (8%). Two percent of patients who received chest RT reported secondary breast cancers, while none of the patients who did not receive chest RT.

Following chemotherapy, patients reported having chronic fatigue (56%), changes in cognition (56%), peripheral neuropathy (35%), sexual changes (15% of males and 35% of females), and heart disease (10%).

The researchers also found a significant shift from management from an oncologist to a primary care provider in a majority of patients five to 10 years after treatment.

“Recognizing that this transition from oncologic management to primary care is a critical transitional period in where communication is vital between providers,” Melissa Frick, lead author and fourth-year medical student at UPenn, told

The researchers concluded that survivors of HL and NHL experience a substantial amount of LLTEs, “suboptimal delivery of survivorship information, and transitions of care in follow-up”. They recommended that clinicians improve their awareness of survivorship and LLTEs in this patient population and to communicate follow-up care plans between survivors and treatment teams.