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Follow-up care after treatment of non-Hodgkin lymphoma

Follow-up examinations

All follow-up visits should include anamnesis and clinical examination with special attention to lymph node status and examination of the heart, lungs, and abdomen. Involved areas and irradiated organs/areas should be focused on for recurrence and side effects after treatment. Blood tests should be performed at each follow-up visit and should include hematological tests with differential counts of leukocytes, SR, LDH, TSH, and free T4 in patients who have been irradiated to the neck and/or upper mediastinum, liver and kidney function tests (especially after irradiation to the kidney regions or other nephrotoxic therapy).

Follow-up with chest imaging should be done with X-ray or CT, but MRI should be considered if frequent follow-up is necessary, especially in children and adolescents to reduce radiation exposure.

Follow-up of the abdomen and pelvis for slim patients should be done with imaging using ultrasound of the liver, spleen, and retroperitoneum instead of CT. Multiple CT scans give a significant amount of radiation over time, therefore MRI as an alternative to CT should be considered. MRI should be considered routine fore children and adolescents.

The follow-up schedules given below are only guidelines and apply as long as the patient is in remission. For curative treatment of Hodgkin and non-Hodgkin's lymphoma, response is evaluated at least once during chemotherapy as well as after chemotherapy and conditional radiation therapy. For palliative chemotherapy, the follow-up schedule is customized, likewise for untreated patients under observation.

Aggressive non-Hodgkin lymphoma

The goal of treatment is to cure the disease by first-line treatment and also by the first treatment for recurrence for most patients less than 65 years. Blood tests are taken at all follow-up visits and include tests mentioned above. A clinical examination is performed at all follow-up visits.  

  • The first visit is after 1-2 months. The purpose of this visit is to determine if the patient is in complete remission. The examination will include imaging and bone marrow examinations if involved before treatment.
  • The first year will involve follow-up visits every 3 months. A chest X-ray and imaging (CT or ultrasound) of the abdomen/pelvis (see above) will be done after 6 and 12 months. A chest X-ray can be exchanged with chest CT after 6 months in special cases where considered necessary.
  • Second year, there will be a follow-up visit every 4 months. A chest X-ray is performed after 2 years. 
  • Third-fifth year, follow-up visits every 6 months.
  • Further annual checks should be carried out with the patient's primary care doctor with guidelines for what the visits should include, for example, thyroid function tests (TSH and free T4) in patients who have received radiation therapy to the neck/upper mediastinum. 
  • For certain patients, especially those who have completed radiation therapy, it is recommended the patient is informed to have a low threshold to contact their general practitioner for symptoms which can be related to cardiovascular diseases. Women who have been irradiated with a radiation field including parts of the breasts before the age of 35 should undergo yearly mammography from 10 years after irradiation.

For aggressive non-Hodgkin lymphomas, follow-up visits may be transferred to a local hospital or general practitioner (GP) with guidelines from the specialist, but expertise and continuity of the doctor at follow-up is very important. 

Indolent non-Hodgkin lymphoma

The goal of treatment is to cure the disease by radiation therapy only for disease in stage I or II of confined spreading. These patients should complete a thorough clinical examination, possibly with imaging at the first visit to confirm complete remission. For the other 75% of patients, the schedule given below applies. Blood tests are taken at each visit including tests mentioned above. A clinical examination is done at all visits. 

  • The first visit will be 1–2 months after completed therapy and should include imaging and bone marrow examination where necessary to confirm remission status. This may be of significance for later symptoms and findings. 
  • The first year there will be a clinical examination every 3-4 months. A chest X-ray and ultrasound or CT of the abdomen/pelvis are taken possibly after one year based on clinical assessment.
  • Years 2-5, clinical follow-up will be biannually.
  • Further follow-up is done with the patient's GP. The patient is referred back to the hospitalin case of any suspicious symptoms. 

All follow-up visits can be transferred to the patient's local hospital or primary care doctor for indolent lymphomas. 

Follow-up after high-dose treatment with autologous stem cell support (HDT with SCS) 

For recurrence after HDT with SCS, there is rarely a curative treatment option except for rare localized recurrences which can be controlled by radiotherapy. Many patients with recurrence after such treatment for indolent lymphomas, transformed lymphomas, and Hodgkin's lymphoma can, however, live long (many years) with good quality of life after the recurrence is confirmed. Disease progression is more rapid from recurrence of aggressive non-Hodgkins lymphoma. 

Complications and side effects after completed treatments must be confirmed and registered. Physiotherapy for symptoms from muscle and bone is often of help. Psychological problems can occur long after treatment is finished. Some patients must be rehabilitated to less heavy or demanding jobs.

Upon discharge after HDT with SCS, the patient is informed of the applicable vaccination program. Full reimmunization (three doses) of tetatnus, diphtheria, and whooping cough are recommened after 12 months. The pneumococcus vaccine is recommended after one year, then about every 5 years for antibody titer. Influenza immunization may be of benefit, but is given more on an individual basis. Live and oral vaccines should be avoided for 2 years after HDT with SCS.  

What patients often struggle with

  • Fatigue. This patient group may struggle with fatigue long after treatment is over. This may last for months, maybe years. Many Hodgkin's patients are relatively young and are in their education when they receive the diagnosis. It has been shown that many struggle with resuming their studies later due to difficulties in concentrating and memory problems. Some needs to restart their education. It is importantto evaluate the degree of fatigue in patients treated for lymphoma. Many patients have experienced that there is too little discussion and not enough knowledge shared. It is also important to exclude depression since treatment is very different.
  • Fertility, which is an increasing problem with age and amount/type of treatment. For those who have utilized sperm banking, assisted fertilization may be necessary.
  • Psychological and socioeconomic problems. Many patients benefit from counseling with a social worker or psychiatric nurse.
  • Dry mouth, tooth decay, and gum diseases are often present after irradiation to the oral cavity. With sufficient documentation from a dentist stating dental care is required as a result of irradiation, the patient can apply for reimbursement from the National Health Service.
  • Hypothyroidism after irradiation to the neck is observed in > 50% of patients long after follow-up.
  • Myalgias and strain injuries are sometimes observed after irradiation to the muscles. These patients often benefit from physical therapy in the form of heat, massage, and exercises. 

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