Ask Question
Sign Guest book

 
About Lymphoma
| Advocacy | Art | CAM & Life Style | Clinical trials | Docs & Centers | Guidelines at Diagnosis | How to Help | Side Effects | Support | Symptoms  | Tests | Treatments | Types of Lymphoma


Experts

Patients Against Lymphoma

 

About Lymphoma > Monitoring lymphomas

Last update: 04/08/2010

Monitoring  Indolent Lymphomas
and Response to Treatment

How are Lymphoma Monitored | When Tests May be Scheduled

Also see Monitoring DLBCL

The timing of tests can depend on the type of lymphoma,  the clinical behavior, the results of laboratory tests, and patient-reported symptoms.

Monitoring of indolent lymphomas:

Follow-up of Follicular (indolent) Lymphoma for complete or partial response taken from NCCN guidelines:

"Clinical follow-up every 3 months for 1 year, then every 3 to 6 months. Follow-up includes repeat diagnostic tests, including imaging (based on site  of disease and clinical presentation) as clinically indicated."

See NCCN guidelines 2009  NCCN.org 

Comment:  We may suppose that the follow-up for partial and complete response (PR / CR) are grouped together in the NCCN guidance because relapse (historically) is assumed for indolent lymphomas. Also the guidance is sufficiently flexible to apply to each circumstance. 

The key word being "clinically indicated." which we take to mean that a need exists to examine, test, or image .... which will have clinically relevant benefits ... on the outcome in the long term, assess response to therapy, or to address a symptom or functional problem in the short term. 
 
Another key phrase in the guidance  being "based on site of disease and clinical presentation."  Each case can be unique and some areas of presentation are more concerning than others -  or deserve more careful attention.

We'd like to see this topic covered by experts giving case-based examples.  In particular, a good many patients remain concerned about CT imaging on a regular basis over 10 to 20 years. I think guidance on monitoring should set limits on such exposures, particularly for patients under 50 years of age, and provide alternative ways to monitor lymphomas that can reduce risks,  costs, and mitigate such concerns. 

 

How lymphomas are monitored?   

Direct examination | Patient-reported symptoms | Laboratory Tests | Diagnostic tests | Imaging 
 

Direct examination  

Your doctor will:

bullet

Palpate (feel) for changes in  lymph nodes;

bullet

Ask questions about how you feel and if you're experiencing new symptoms 
(see Patient-reported symptoms below)

bullet

Review results of blood tests, imaging reports and diagnostic results.

Be sure to receive copies so that you can help your doctor to identify trends.
 

Patient-reported symptoms

Patient reported symptoms (PRS) are an important part of managing lymphomas, but our accounts are admittedly subjective - can be magnified or downplayed, depending upon our temperaments ... can be related or unrelated to lymphoma ... so this is a problem and a common one at that. 

It should be noted, however, that it's rare when progressing lymphoma is a medical emergency. A lesion or lymph node increasing here or there is expected and treatment can be effective against advanced or minimal lymphoma. Your doctor probably wants to avoid over-testing and over- treating an indolent lymphoma. 

Your honest and timely reporting of symptoms  can be as important as any test. 
Be sure to record and describe pain, fatigue, bowel and kidney function, fevers, sweats ... any change that is unexplained and persistent.

NOTE:  Sometimes our performance changes gradually and is difficult to notice.  Therefore, a regular exercise program can be a good way to both improve our general health and monitor for changes. As always, get approval from your doctor before starting an exercise program that might exceed your ability. 

Two suggestions for consults:

* Have a friend or loved one participate - an observer will improve the quality of the consult.

* Provide your symptoms in writing, but concisely. Be as factual as possible.

For example:

   Night sweats
      Mar - twice, had to change clothing and sheets
      Apr - three times, significant

   Fatigue: 
      Mar  - low energy, difficult to do everyday tasks 
      Apr - increasing difficulty concentrating, getting out of bed.

   Performance: 
      Apr - cannot walk up stairs without stopping, as I could in Mar
(without the baseline note - how you could climb the stairs in March - the doctor will not know how to interpret your observations)

Fatigue can be caused by lymphoma or treatment-induced anemia, but also by stress, depression, anxiety or even our expectations. If you fear the condition is progressing, you might experience symptoms or be more alert to them, which can start a expectation-fulfilling cycle. 

See also Symptoms and our Symptoms checklist to help report symptoms to your doctor.

You might ask your primary care doctor to help you interpret symptoms as well. 
 

Laboratory Tests

bullet
Laboratory tests (labs) ... blood, urine, other

Blood tests such as CBC, LDH, Beta2 microglobulin, Liver panel ... may be ordered
to monitor for indications of response, progression, treatment toxicity ...
 

Diagnostic tests

bullet

Diagnostic tests are performed on tissue sample from  of a lymph node, the bone marrow, or other lesions.)

Generally, diagnostic tests are not used to monitor a  previously diagnosed lymphoma unless the clinical behavior changes or if there is a need to examine why bone marrow function is not what's expected.  
 

Imaging Tests

bullet
Imaging tests

Imaging tests such as Sonograms, CT scans, MRI, PET scans are used for different purposes, 
such as initial staging of the lymphoma, monitoring for progression during periods of observation, to evaluate response to treatment, or to examine an area that is causing pain.


When tests may be scheduled:

Depends on the type of lymphoma, patient and physician preferences, and the clinical circumstances. (Intervals for some tests may range from a few months to years.)

Clinical Circumstances:

bullet

Initial staging: 
 
Diagnostic tests, CT imaging, sometimes PET, Bone marrow biopsy, Lab tests
 

bullet

Follow-up:
 
CT imaging or PET? ... or MRI 
 
to monitor for progression (if observation - watchful waiting) or for relapse following treatment.
Depends on clinical behavior, patient and physician preferences, patient-reported symtoms.

bullet

Patient reported symptoms or suspicious lab results:
 
May warrant diagnostic tests, CT imaging, sometimes PET, Bone marrow biopsy
Depends on the nature of the changes and the significance.
 

bullet

Prior to Treatment:
 
to provide baseline imaging information, or to judge eligibility for certain types of treatment, 
such as a  bone marrow biopsy prior to Radioimmunotherapy
Clinical trials may require extensive pre-treatment assessment to judge results.
 

bullet

Mid-treatment to assess response to therapy.
 

bullet

End of Treatment:  
 
CT imaging and PET to determine response to treatment, particularly 
when the goal of treatment is a durable complete response (versus management).
PET is used here to determine if residual masses are active or scar tissue.
 

bullet

While in Remission: 
  
Imaging at regularly scheduled intervals, 
onset of patient-reported symptoms, or suspicious lab results.
 

bullet

Restaging at relapse: 
 
Diagnostic tests, CT imaging, sometimes PET, Bone marrow biopsy, Lab tests

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright © 2004,  All Rights Reserved.