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:
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Palpate (feel) for changes
in lymph nodes; |
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Ask questions about how you
feel and if you're experiencing new symptoms (see Patient-reported symptoms below)
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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
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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 ...
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Diagnostic tests
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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.
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Imaging Tests
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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:
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Initial staging:
Diagnostic tests, CT imaging, sometimes PET, Bone
marrow biopsy, Lab tests
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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.
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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.
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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.
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Mid-treatment
to assess response to therapy.
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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.
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While in Remission:
Imaging at
regularly scheduled intervals,
onset of patient-reported symptoms, or
suspicious lab results.
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Restaging at relapse:
Diagnostic tests, CT imaging, sometimes PET, Bone
marrow biopsy, Lab tests
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