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Watchful waiting has been
described as "careful observation without initiation of therapy."
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We
receive many questions from patients with indolent lymphomas who are
trying to understand why their oncologist has recommended deferring
treatment - what is often called watchful waiting - and
related questions on monitoring indolent lymphomas.
The following are lay perspectives on watchful waiting and monitoring indolent lymphomas.
It's our best effort to summarize the rationales, based on a review
of the literature and our experiences. We invite experts to comment
as well.
Please - as always - do not consider
this information to be a substitute for the medical advice of your
physician.
About Watchful Waiting
When you have an indolent (slow growing)
lymphoma that is not causing symptoms or does not present an
immediate medical danger, watchful waiting is commonly prescribed, even
when the disease is diagnosed at an advanced stage.
Note that the comfort level varies
among patients with this approach. Some patients refer to it
as "watch and worry"; other find it comforting that
you can live well and long with indolent lymphoma as a "chronic" disease.
Indolent lymphomas are typically
sensitive to treatment, but at this time they are not considered
reliably curable* with combination therapies. So the approach that is
often recommended is to monitor the disease, and to treat only when
the condition causes symptoms or develops to a degree that increases
risk.
Also see PubMed articles on deferring
treatment - PubMed
* Note: Indolent lymphomas are very sensitive to many types of treatments, but in the past
advanced stage (III and IV) were rarely cured. While still controversial (requiring more study and longer follow up), some investigators believe that combination
chemotherapy with immunotherapy (rituxan, bexxar, zevalin) may cure a
significant % of patients with indolent lymphomas. (See Cabinillas'
presentation http://clinicaloptions.com/Oncology/Resources/CME%20Options/NHL.aspx
)
Hopefully, the indolent lymphoma
you face will prove to be "well-behaved" and you won't need to make a decision
for many years, and that when the time to treat is at hand there
will be even better therapies and knowledge about how to use
existing treatments.
In summary:
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Indolent lymphomas can remain
stable for long periods of time, and sometimes regress
spontaneously.
There have been case reports of indolent lymphomas remaining
stable for as long as twenty years,
but it should be noted that most patients will receive first
treatment within one to two years after diagnosis.
For all 44 "deferred" patients, the median time
before requiring treatment was 31 months,
and there have been 19 patients who have not yet required
therapy for periods of 3 to 104 months. 1
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Better treatment protocols may
become available when it is time to treat.
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| Your doctor can use this time to
judge the clinical tempo of your lymphoma to help
guide the choice of treatment when it is needed. The
clinical tempo is estimated by comparing
the baseline images with subsequent tests to see the rate of
growth or stability.
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NOTE: There is no standard approach to treating indolent lymphomas,
but new agents have improved the management of the disease, which is
typically sensitive to many kinds of treatments. For a detailed discussion on treatment decisions, see
treatment-decisions
About Monitoring Indolent Lymphomas
How often will I see my oncologist
during watch and wait?
Monitoring might include:
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A direct examination -
palpation (feeling) of lymph nodes; questions about symptoms;
review of blood tests
and imaging reports; discussion of treatment goals and
priorities ...
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Blood
tests - CBC, LDH, Liver panel
in order to monitor for problems and indications of response,
progression, treatment toxicity ...
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Imaging
- Sonograms, CT scans, MRI, PET
in order to stage the lymphoma or
examine areas of interest.
NOTE: Since fluctuations of lymphatic lesions are expected for
indolent lymphomas, there may be no
need to image the entire body in short intervals. Instead the
timing might be based on symptom reporting,
the need to provide a baseline or to determine response to
treatment (staging), and so on.
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Your honest and timely
reporting of symptoms such
as fatigue, bowel and kidney function, fevers,
sweats.
Ask your doctor how he or she wishes to be notified. By
phone, fax, email?
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NOTE: Sometimes your performance level can
change gradually and it will be difficult to notice. Therefore, a
regular exercise program that *measures* performance can be a good
way to both improve your general health and monitor for changes.
As always, get approval from your doctor before starting an exercise
program that might exceed your ability or put you at risk.
Once the clinical tempo of your
lymphoma is estimated, the interval of examinations or tests can increase or decrease. Some patients
report seeing their oncologists every 6 months; others report remote
system: The doctor faxing a lab script and if the lab report shows
red flags" (such as a significant increase in LDH,
the next direct exam might be put back for an additional month or more ....
In a nutshell, the monitoring interval varies, and can depend on
the behavior of the lymphoma, test results, and reported
symptoms. For example, it's prudent to report the
appearance of new enlarged lymph nodes, especially if in multiple
locations; and to report fever or frequent and drenching night
sweats.
NOTE: The variable clinical course and long survival of patients with indolent lymphomas is both a blessing and a problem. It's a problem because it takes more time and larger
numbers of patients to evaluate new treatments. (Was it the treatment or chance? Does the treatment influence survival?) Similarly, it also makes it easy for patients to wrongly associate cause and effect: "I ate almonds and my tumors regressed. I took this supplement and it progressed" ...
This is not to say that some life style practices cannot provide benefits or risks; but just that anecdotes of this kind are not reliable, particularly for indolent lymphomas.
See for details: Evaluating Medical
Claims and Data
Some possible reasons for the variable
clinical course of indolent lymphomas are explained in Lymphoma Simplified;
possible reasons for spontaneous regressions are posted here.
Related Articles:
Stage I and II Follicular Non-Hodgkin’s Lymphoma: Long-Term
Follow-Up of No Initial Therapy
Ranjana Advani, Saul A. Rosenberg, Sandra J. Horning
http://www.jco.org/cgi/content/full/22/8/1454
==
Ann Intern Med. 1979 Jan;90(1):10-3.
1) No initial therapy for stage III and IV non-Hodgkin's lymphomas of favorable
histologic types.
Portlock CS, Rosenberg SA.
The question of whether initial treatment is necessary in relatively
asymptomatic patients with stage III and IV non-Hodgkin's lymphomas of
favorable histologic types was studied by retrospective analysis.
Two groups of patients were studied: [1] 44
non-protocol patients, followed since 1963, in whom initial treatment was withheld until required to evaluate the pace
of disease and the necessity of treatment; and [2] 112 previously untreated
patients who have participated in prospectively randomized clinical trials
since 1971.
For all 44 "deferred" patients, the median time before requiring
treatment was 31 months, and there have been 19 patients who have not yet
required therapy for periods of 3 to 104 months.
The median actuarial survival for all 44 patients was 121 months. At 4 years, the actuarial
survival of the 44 patients with deferred treatment is 77.3%, compared with
83.2% for the 112 protocol patients (P = 0.60).
Careful observation without initiation of therapy is an appropriate option in the management of patients
with relatively asymptomatic advanced non-Hodgkin's lymphomas of favorable
histologic types.
PMID: PMID:
369420
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