Ongoing medical and psychological support is essential for patients who have relapsed or refractory follicular lymphoma. It can often be difficult for patients to cope with their diagnosis and the changes in their lifestyle resulting from the disease. However, a strong support system can help to improve patient’s quality of life as they adjust to living with follicular lymphoma.
Patients with relapsing or refractory form of follicular lymphoma typically require regular follow-up medical appointments to assess the progression of the disease and make interventions, if needed. Medical tests are carried out on a routine basis to monitor the disease, including blood tests and computed axial tomography (CAT) scans. In general, the frequency of follow-up appointments continues to decrease the longer that a patient is in remission, if this stage can be reached (e.g. not for refractory follicular lymphoma).
These appointments are usually carried out by the same medical professional, who is familiar with the patient’s overall health and medical history. However, it is useful for patients to keep copies of treatment reports, medical records, and test results. This is particularly useful if there is a need to change the supporting health practitioner, such as if the patient or practitioner relocates.
Some therapies used in the treatment of follicular lymphoma may cause chronic or delayed side effects, such as pain and thyroid abnormalities, which affect the patient after the therapy has taken place. Factors that have an influence on the duration and frequency of these effects include age, gender, and general health of the patient. These factors and side effects should also be discussed in medical appointments.
Patients may have questions about specific issues related to their condition, usually linked to treatment methods. These may include:
- Premature menopause
- Infertility (both men and women)
- Cardiac health, due to radiation exposure
- Thyroid health
- Lung problems
- Secondary cancers
A diagnosis of follicular lymphoma, and particularly the relapsing or refractory form, can be very distressing for patients. This can make them feel more emotional than usual and they may react to certain situations in ways that are not normal for their personality.
Support groups can be beneficial in helping patients with RRFL to verbalize their struggles and discuss strategies to cope with the difficulties with like-minded individuals. There are specific groups for individuals affected by follicular lymphoma and many patients appreciated the opportunity to talk with others going through a similar process. There are also buddy programs for follicular lymphoma, which match lymphoma survivors with volunteers who have had a similar experience.
It can sometimes be difficult for patients to access such a support group due to geographical limitations; in this case, online messaging boards or chats may also prove useful.
Although friends and family usually make an effort, they may find it difficult to empathize with the needs of a patient with relapsed or refractory follicular lymphoma. In most cases, the best thing is for them to try to be as understanding as possible and help patients in whichever way they can, even with simple tasks such as household chores.
Reviewed by Susha Cheriyedath, MSc