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Index for this page
ON THE PAIN OF DIAGNOSIS and
are some doctors who think that after they tell you "you have
cancer" you are supposed to be calm and completely rational and not
about crying. The first oncologist I went to described me as hysterical and
I should take immediate treatment "if only to calm yourself and let
believe you are doing something."
I think he was hysterical. Not me. I reacted like any person
diagnosis would. Sad, angry and confused.
The period immediately after diagnosis is the exact wrong time to make
decision [can be - for the indolent lymphomas].
Fortunately, with low grade NHL you have the luxury of
some time to
I took some time, saw two other oncologists and they both told me to do
nothing, that the survival statistics showed that early intervention did
improve survival. I left the first oncologist.
That was five years
ago. I need treatment
now, but am happy that I didn't panic and let the first oncologist dictate what
would have been an awful choice for me."
- Ronnie - (NHL-follic)
ON HOW EASILY MISTAKES CAN HAPPEN - THE
IMPORTANCE OF HAVING SOMEONE WITH YOU, AND NOT ASSUMING:
Yesterday I went for a biopsy on my
mesentery (an abdominal sheath), and as I was having my b/p etc checked
one nurse said to the trainee, she is having a liver biopsy.....I said no,
not me....she went and checked, came back and said they were wrong, it was
When a second nurse came to give me
something for pain etc, she said, oh, a liver biopsy! I said NO, that is
the other lady in the next
bed....so this nurse checked, and then wrote mesentery on my file, which
had said liver.... How easily mistakes can occur...its
Before Diagnosis |
The Biopsy |
The Pathology Report |
Life Style Changes |
Choosing a Doctor &
Second opinions |
Preparing for Consults ...
This topic is for
anyone who has just been diagnosed - or just prior to the
A lymphoma can be a serious
disease, but it is also treatable even at a very advanced stage.
Some types of lymphoma are readily cured, other types can be managed
well as needed.
The rarer subtypes require
more attention than most diseases since experience and therefore expertise is less common, so you
may need to get more involved with your diagnosis (seeking a second
evaluation) and treatment (considering clinical trials) and also seek
an expert at a major academic institution to work with your treating physician.
For the indolent lymphomas it
can be more likely that you will die with the lymphoma than from it. So
let's get started on your new study project. Here are the steps we
recommend you take as soon as possible.
See also Encouragement for genuine
science- and evidence-based reasons to be hopeful.
and Worry Before
stress and worry prior to a diagnosis can be overwhelming.
Enlarged lymph nodes can raise concerns about cancer and
lymphoma - despite the fact that in most cases enlarged lymph
glands are caused by infections that go away with time or with
treatment of the infection.
The Internet can make our anxiety worse, much worse, because the
quality and accuracy of the information it provides can be
uneven, or plain wrong.
... The website might not note that there are other and more
common causes for enlarged lymph nodes, or for a rash, or for
night sweats that concern you. The website resource may
not explain that lymphoma is rare in young persons - making an
alternate diagnosis much more likely.
There is no certainty in life. That said, prior to the
diagnostic test there is
good reason to be hopeful that the symptoms that concern you are
NOT caused by a lymphoma. Here are some of the key points to
keep in mind:
and signs of lymphoma are
common to many other medical conditions.
decreases the odds that you have a non-Hodgkins lymphoma
which affects mainly older persons - median age is about 65 years.
(Hodgkins occurs in young people, but the incidence is low
- "The age-adjusted
incidence rate was 2.8 per 100,000 men and women per year. These
rates are based on cases diagnosed in 2004-2008 from 17 SEER
When a lymphoma does
occur it rarely presents as a medical emergency -
in most cases ample time to
get the diagnosis right. Lymphoma is also treatable.
When discussing the
symptoms that you have with your doctor,
First write them down in a concise manner - in the order that the
Then prepare and rehearse your story
On this, see: Opinion: When doctors don't listen listen
Key Guidance from the American Family Physician:
"Lymphadenopathy refers to
lymph nodes that are abnormal in either size
(greater than 1 centimeter), consistency or number."
Generalized - if lymph nodes are enlarged in two or
more separate areas of the body
if only one area is involved." (less suspicious)
Enlarged lymph glands are common, so don't rush to judgment!
"Although the finding of lymphadenopathy sometimes raises fears
serious illness, it is, in patients seen in primary care settings,
usually a result of benign (not cancer) infectious causes."
"A three- to
four-week period of observation is prudent in patients with
localized nodes and a benign clinical picture."
Antibiotic therapy is
sometimes tried first, before a biopsy.
However, be aware,
only bacterial infections will respond to antibiotics.
Therefore, if the lymph nodes remain enlarged it may not be a
Increasing suspicion of
a cancer - the need for a biopsy:
"When a node biopsy
is indicated, an excisional biopsy (removing the
entire lymph node) of the most abnormal
node will best enable the pathologist to determine a
* Background on this from AJCP.ascpjournals.org:
Fine-Needle Aspiration Cytology in the Diagnosis of Lymphoma The
Linda M. Sandhaus, MD
* And from the Mayo Clinic
Swollen lymph nodes Symptoms -
on evaluating enlarged lymph nodes:
Frequently asked questions
before a diagnosis:
Can a blood test show evidence of lymphoma?
Rarely. In almost all cases a biopsy
In most cases, a full excisional
biopsy is preferred
when a biopsy is needed -
a fine-needle aspiration (FNA) can be
insufficient to get an accurate initial diagnosis.
also our topic on Symptoms of lymphoma
TIP Try to set
up the biopsy at a major research center. When setting up
your appointment or when requesting this of your oncologist, say
that you want the extra tissue to be donated for lymphoma
This may also lead to a priority appointment ... and it will
increase chance that the most advanced diagnostic tests will be
used on the sample -- helping to inform your care and
potentially helping to identify trials you can consider in
A biopsy is the taking of a sample of
the cells (from blood or most commonly from tissue) for diagnostic
or scientific evaluation. This can be done with a needle or by
surgical removal of a lymph node or lesion. A biopsy is
essential in order to exclude or diagnose a lymphoma. The
tests done on the sample are also needed to determine the type of
lymphoma and the grade, which is required in order to guide the
approach to therapy.
The gene rearrangements of the lymphoma cells can vary
from patient to patient. (Mary's
follicular lymphoma is not the same as Robert's). Increasingly, therapy will be tailored to the tumor biology of the
individual patient; the findings will guide what treatment agents to use or avoid, and what approach to
therapy is needed -- such as aggressive or conservative.
If it is feasible for you, we
recommend that you go to a research center that can
a portion of the tissue
for advanced diagnostics and research,
which is vital to making progress against lymphomas.
You can click here to find
NCI-Designated Cancer Centers - using a Map
See also our topic page on
The completed report provides detailed information about the diagnosis
or normalcy, such as
architecture, structure of the cells,
such as small or large, cleaved, diffuse or nodular
Cell markers found by
"staining," or immunohistochemistry tests:
such as cd20, cd22, cd30... helping with identifying the cell
(CD stands for clusters of differentiation)
Grade, the proportion of large
to small cells
Note: Grade is often confused by patients with
stage, which is done with imaging to
show how widespread the lesions are in the body. Stage is
not diagnostic. It shows areas of enlarged lymph nodes,
but not the cause, which can be from inflammation.
Gene rearrangements, such as bcl-2
or bcl-6, c-myc ...
A diagnosis summary: the section
where the pathologist gives a concise pathologic diagnosis. It
includes the tumor type and cell of origin, or findings of
normalcy (the sample is benign - not a cancer.
Other findings may be
reported, such as:
Clonality: Are the lymphoid cells all alike?- clonal
(monoclonal). Monoclonal supports the diagnosis of a lymphoid
neoplasm although it is not considered an absolute indicator.
Reactive hyperplasia: indicating that the increase in the
size of a lymph node is due to normal immune cells increasing in
number in reaction to a pathogen (bacteria, or virus).
See for other common diagnostic terms:
tissue types |
or Vague and
We urge you to ask for a
copy of the pathology report for your records
It can help you to identify support groups with
a focus on your type of lymphoma
You will know what research studies and report
related to your diagnosis.
You will need it
to seek advice from lymphoma experts.
believe it's important to consult with experts and to become informed
about your type of lymphoma, and all available treatments in order to
receive optimal care.
We recommend a second evaluation of the sample cells
to confirm that the diagnosis is correct.
A second evaluation can be particularly important for the uncommon
subtypes of lymphoma, or types that are inherently difficult to diagnose
Getting a second evaluation is a fairly routine
procedure. Studies show that a second review can sometimes
change or refine the diagnosis. The slides are sent from one institution
to another. The report on the second evaluation is sent to
your oncologist, who will discuss with you the findings.
An accurate diagnosis is
critical to receiving the most appropriate treatment, as each lymphoma type can be
treated very differently. Unfortunately an incorrect diagnosis,
while not typical, is more common than we would like to
Patient story: I want people to be aware of the importance of a
second opinion. For almost eight years I have been treated for Mantle
cell lymphoma. I was sent to a radiologist for evaluation of treatment
and he questioned my diagnosis as Mantle cell is very aggressive and if
I have had it for 8 years and I look so healthy, he said he has treated
many patients with mantle cell I did not fit the diagnosis. He had
previous biopsies sent to an entirely different hospital and have been
diagnosed with low grade indolent lymphoma.
- Getting a second evaluation
for persons with newly diagnosed or relapsed lymphoma
Information can ease your fear ... Lymphoma is treatable!
Your prognosis is not based on statistics
Some life style changes can help
Information can ease your
The diagnosis of lymphoma is a blow that can take your breath
away. We hear the words "advanced" and "cancer," and will absorb
little else our doctors say ... and fear the worst. The stress of the diagnosis can be acute
for the patient and for the caregivers.
Time is needed to adjust and to learn. Lymphoma can be
a serious disease, however it's important to appreciate that it's
typically very responsive to treatments even at advanced stages.
... Hodgkin lymphoma, for example, has a high cure rate. Many
of the aggressive lymphomas, such as DLBCL, are cured, and the
indolent types can be managed well as needed. Recently, it was
reported that the survival of patients with follicular lymphoma is
often equivalent to persons of the same age without the diagnosis -
the key milestone being event free survival (EFS) at 12 months after
diagnosis or initial treatment. (ASH
EFS means to be without any symptoms or medical issues related to
There can be, of course, no
100% certainty in life or in medicine. Outcomes will vary by the
type of lymphoma and the unique clinical circumstances of the
patient. That said, again and again, we observe that the anxiety
level of patients will lessen with time, with experience, and with
Here is background that we
trust will help you to feel more optimistic about how lymphoma is
treated today ... noting that investigational targeted treatments are bound to improve
substantially in the very near future!
Lymphoma is a treatable blood cell cancer that
can be effectively treated at an
advanced stage. Lymphoma in the marrow is also reversible
Lymphoma in the bone marrow
(the nursery for blood cells) is not especially concerning
because this is an expected place for normal lymphocytes to be
Many common aggressive types can be cured.
Treatment begins very soon after diagnosis with curative
intent. It can also be cured on relapse in many cases.
For the indolent types the approach
and timing of treatment varies. It is common to monitor or
observe (watch and wait) an
indolent lymphoma until there is a need to treat - when there
are symptoms or evidence of steady progression.
Dr. Bendandi notes: in this setting the likelihood of
destroying most of the tumor with subsequent treatments is
pretty much the same, irrespective of whether we treat right
away (that has some side effects and risks) or carefully
watch and wait (without side effects).
Sometimes (but not commonly), treatment
of indolent lymphoma is never required.
Treatments are improving rapidly with clinical research.
A reason we feel that clinical trials should be
A brief overview on the
standard approaches to treating lymphoma:
chemotherapy, Rituxan antibody, and radio-labeled antibodies
The newly diagnosed can be initially fearful of
chemotherapy, which are also called a cytotoxic agents. It’s
important to appreciate that blood cell cancers are especially
sensitive to this class of drug (and for similar reasons also to
radiotherapy). These agents work by damaging the DNA of rapidly
dividing cells – inducing the cells to self destruct -- similar to
how a too much sun exposure causes our skin cells to self-destruct
Blood cells are inherently born to die (compared to say heart or
lung cells). Thus, the doses of chemotherapy agents needed to have
this effect is lower for lymphoma than for other types of cancers.
… Lymphoma arises from defective lymphocytes – a type of immune
cell. Lymphocytes will expand in number in response to an infection
and then die off when the cells receive signals from other cells
that the task has been accomplished.
So lymphoma cells can be induced to die in different ways: by
damaging them, by altering the signals they receive, or by targeting
the defects that cause them to multiply too fast or persist too
The first types of cancer to be cured were the blood cell cancers
treated with chemotherapy agents. Investigators looking for ways to
treat childhood leukemias developed the concept by observing that
the blood cell counts of soldiers drop when exposed to mustard gas,
and that the counts would rebound later. They reasoned that at the
right dose this kind of drug could treat blood cell cancers.
Rituxan, a biologic agent, is a very different class of drug.
It’s an antibody (protein molecule) similar to the antibodies our
bodies make to respond to an infection. It’s given by vein and
circulates in the body where it sticks to cells that have a specific
molecule on the cell surface called cd20. CD20 only exists on mature
b-cells. The effect of this drug is to kill (or deplete) all mature
b-cells. Stem cells, however, from which the b-cells arise do not
have CD20. This allows the normal b-cells to come back after some
time (roughly 6 to 9 months later). Rituxan works directly by
changing the balance of signals inside the cell to favor cell-death
(self killing), and by flagging the cells it sticks to for
eradication by other types of immune cells (called effector cells.
Radioimmunotherapy (such as Zevalin) is also an antibody (or
biologic agent) that has been tagged with radiation. Rituxan is
given first to help clear the normal b-cells. The Zevalin antibody
is given on a subsequent day so that the radiation attached to it is
more focused on the abnormal b-cells (the lymphoma).
All treatments that are effective will have side effects, such as
lowered normal blood cell counts. Antibodies can sometimes cause
immune-mediated infusion reactions.
To be approved by the FDA as a therapy, the potential benefits of
the drug must outweigh the known risks. This risk/benefit profile
must be demonstrated in well controlled or large clinical trials
that prospectively define the number of patients in the study and
how the effects are measured. This provides a denominator, which is
needed to estimate the rate of good and bad effects … such as for
every 100 patients treated, 80 (80%) had a response that lasted … X
months / years.
Prognosis is not based
The purpose of statistics
is to find the average results and trends in
LARGE groups. These calculations are based on therapies used
in the past. Survival statistics should not be confused with an
individual's prognosis, which is based on unique clinical factors, such as your
age, type of lymphoma, where it is in the body, the underlying
biology, and the response to therapies.
Fortunately, for lymphoma a different class of therapy can be
effective when the first treatment does not work optimally.
Cure and or achieving a durable remission can remain feasible and a
realistic goal, even after multiple relapses. Initially
and sometimes at relapse the
indolent types of lymphoma may not require any therapy, because they can grow
without causing symptoms.
Misinformation ion the Internet.
If you are considering alternative practices
please first review our comments that follow - explaining why you should
be skeptical about such claims.
Life Style Changes can Help, but what about Alternative Medicine?
Life style changes can help
Testimonials (why they can't be trusted)
Limitations of Cell Culture and Animal studies
Alternative Medicine? |
The Power, or Tyranny, of Positive Thinking?
Life style changes can
improve your fitness, general health and quality of life. These
are sometime called complementary or integrative practices. Here are suggestions
with explanations further below.
Take part in enjoyable forms of regular exercise ...
to improve your fitness, to relieve stress, and to have fun
diet that is delicious and promotes good health ...
times of stress, consider
meditation, prayer, yoga, and aroma therapy
For chronic anxiety and depression, please consult a
professional. Professionals can offer effective interventions
to relieve chronic unproductive worry and depression.
Continue to live your life fully,
such as by setting
goals, doing self-actualizing work, and participating in
social, artistic, or career activities
that you find rewarding.
Lymphoma survivors can and do often achieve their goals and a good
quality of life. The diagnosis can sometimes increase our appreciation of what is important in life.
can life style changes help to improve outcomes?
is beneficial. It can be safe to do even during treatment.
Regular exercise activities can improve your
general health, fitness, reduce fatigue, and can improve your state of mind. Unless
done to excess, exercise has no major risks or side effects.
Maintaining and improving your fitness through exercise is also
strongly associated with better survival and a decreased recurrence
rate for some cancers.
Source: MacMillan Cancer Support: "Move More: Physical
activity the underrated 'wonder drug.'"
Exercise also appears to reduce the risk of neuropathy, a side
effect of some kinds of lymphoma treatments
healthful diet can also help to improve your fitness while decreasing the risks of
medical conditions. Conversely, a poor diet can lead to
health problems that can limit your ability to tolerate and recover from
Can diet, herbs, or vitamins be used to treat
It can be prudent to take vitamins (or
choose foods more wisely) if you have a deficiency, based on credentialed
tests. A healthful diet can make a positive difference in some types of medical conditions (such
as diabetes, heart disease, and high blood pressure) and it can
help to improve our general health.
Unfortunately, there is
no clinical evidence
at this time to support the use of
specific diets, herbs, or vitamins as a treatment for lymphoma
- or plausible science supporting the theory.
While deficiencies in vitamin D are associated with higher-risk
aggressive lymphoma, it's not
known if supplementation with this vitamin changes the prognosis.
Certainly, most people with low vitamin D levels never get lymphoma
... so it is not considered a causal risk factor. It may be, for example that a faster growing, higher-risk lymphoma sequesters
(uses up) this vitamin - in which case the deficiency is a
result of the lymphoma, not a cause of it. Scientists
just don't know.
A relatively new
understanding of the role of
epigenetics in cancer and
cancer prevention has led
to a wave of promotions of diet as treatments for cancer - or to
help manage the disease. Some foods may have
epigenetic effects, but at this time the potential seems limited
to cancer risk reduction for diets adopted over many years or
Observations and testimonials are not reliable
centuries doctors used leeches and lancets to relieve patients of
their blood. They KNEW bloodletting worked. EVERYBODY said it did.
When you had a fever and the doctor bled you, you got better.
EVERYONE knew of a friend or relative who had been at death’s door
until bloodletting cured him. Doctors could recount thousands of
Today we know that patients did well in spite of bloodletting, a
practice based on primitive notions about the nature of diseases -
attributed to bad elements in the blood. The lesson from history is
that observations are not reliable as evidence.
In any observation or case report, even when from a reputable
source, you can't tell what would have happened if something else –
or nothing was done; you can't predict if others are likely to be
helped or harmed by the same approach.
In modern clinical research the number of
participants in a study is pre-specified and assessments are made in
the same way. One approach is compared to another in late phase
testing – the patients assigned to study groups randomly. In all
clinical studies you have a predefined denominator (the
number of participants) that informs about the rate of good
and bad effects. These methods tell us what others (YOU) can expect
… and how it compares to another established treatment.
Testimonials have all of the limitations of
observations … with much less certainty about the facts:
Did the person really have the medical condition? Was
it a false diagnosis of a cancer?
don't know how the outcome was measured: Was it that the patient
felt better? What tests were used to measure it? Did the benefit
last a week or 2 months?
can’t know what other medical treatments were given shortly before
or after. Finally, people who provide testimonials and later die or
get very sick cannot provide updates.
See also our printable brochure on
culture experiments (are starting points only)
The theories promoted to
self-treat cancer are often borrowed from the literature... mainly from preclinical
sources: cell culture and animal experiments.
Cell culture or in-vitro
Cannot account for the
dose that's needed to have a similar effect in the body
Cannot not tell us if
the compound is absorbed into the blood ... or if it is
information about the side effects of the compound when given at
dose showing activity in the test tube. Is if
feasible or safe to take that much of it?
Will not tell us if the
herb you buy in a store (which is not regulated by the FDA) is
free of contaminants.
Giving an herb at low dose
could do harm if the compound is active.
Tumor cells adapt to low or subclinical doses of
treatment compounds of any kind. The
first step in the clinical development of a cancer treatment compound is
to get the dose right and to determine the safety of the agent
at the active dose (therapeutic window).
Cancer cells in a test
tube are like fish out
Taking lymphoma cells from the body and
putting the them into a cell culture is all that's needed to
kill these cells. Unlike bacteria, tumor cells are
typically very challenging to keep alive in any cell culture
experiments (better ... but also only a
Cannot account for the profound differences between the
mouse and human host environment. The mouse
immune system is different. The tumor cell line is
The toxicities and activity of the compound in the
mouse rarely predict activity in humans. See
A mouse is not a man or a women by Bill
So for complementary
medicine, we recommend caution and skepticism about practices that
have not been tested, unless, perhaps, when focused on activities to improve
quality of life and reduce stress,
such as meditation, yoga, and aroma therapy, exercise and maintaining a healthful
If a vitamin or herb (used like a drug) is found to improve sleep or
decrease fatigue in sufficiently powered and controlled clinical
studies, then this practice will become part of regular medicine.
In such cases your doctor will be aware of the potential risks and
benefits; the brand and dose will be understood and also
the side effects.
Amer J Translational Research 2014:
Lost in translation: animal models and clinical trials in cancer
"the average rate of successful translation from animal models to
clinical cancer trials is less than 8%. "
"Despite successful pre-clinical testing, 85% of early clinical
trials for novel drugs fail; of those that survive through to phase
III, only half become approved for clinical use . The largest
proportion of these failures occurs in trials for cancer drugs .
Furthermore, fewer than one in five cancer clinical trials find
their way to the peer-reviewed literature, generally due to negative
findings . Although logistical and study design issues are often
identified as the root cause of clinical trial failures, most
futilities in fact originate from molecular mechanisms of the drug(s)
can appear convincing, initially, to anyone with no formal background
in the disease - virtually all of us at diagnosis! The
stories appealing to what we want to be true ... such as if you
adopt our special diet, take certain herbs ... and the lymphoma will
go away or stay at bay.
theories are used to explain why our doctors don't recommend
alternative practices, which promotes mistrust of modern medicine -
that provides tested therapies for lymphoma.
that scientists and their loved
ones also get cancer, as do medical doctors and regulators.
There is NO conspiracy to keep cures from children and adults
affected by cancer.
If you ask those who
promote alternative medicine for clinical
evidence, you may be
chided for being closed minded. Being open-minded includes
being skeptical about medical claims. Theories are easy to
come by - anyone can make one up. Consider that even the most promising, scientifically plausible
theories about treatment need to be tested
in patients to see if they are truly effective and safe. And this is as it should be!
standards for evidence, as in the "Wild West," we'd have
many thousands of choices but NO
way to make an informed choice. Anyone, any group, can
make a claim. Fortunately, in our society you have to prove a
that your theory works ...
by running adequately sized and controlled trial in people ... not in
mice or test tubes. It is also not true that nature
compounds are not included in clinical trials. Indeed many
therapies for cancer are based on compounds derived from natural
sources (such as taxol, etoposide, vincristine to name a few).
So we urge you to avoid alternative
medicine doctors who may promise that they will cure
you, and groups that
patently dismiss conventional therapies.
alternative medicine means an intervention that has NOT been
tested or proven safe and effective for the medical condition.
"benign" alternative interventions (vitamins at moderately
high doses) can do harm if the belief leads you to postponing a tested and approved treatment. In some cases the
financial toxicity for alternative (fraudulent) practices can be high as well.
On the limitations of authentic personal stories
Positive stories provides
us with needed reassurance and hope.
It is natural and understandable to seek such stories - and
there are many for lymphoma. However, on the flip side we can
become distraught when reading about bad outcomes. So
it's important to appreciate that our prognosis is unique - by
support system, our age, fitness, immune status, treatment history
.. and also by the unique molecular biology of the disease, which is
also different from others even with the same diagnosis.
So we will find positive and negative stories on the Internet and
support groups. Neither predict what will happen to us or can
be used reliably to guide our treatment choices.
The following media item describes why this is so very nicely:
*Huff Post 2014;
Your Cancer Is Not My Cancer: The Danger of
"I remind myself that I cannot compare my
cancer to anyone else's cancer, even those who
appear to have the exact same diagnosis and staging
as mine. Their cancer is not my cancer. Their
outcome is not my outcome. And no good will come of
allowing myself to go down the mental rabbit hole of
projecting someone else's outcome onto my future."
There is science to back
this up. The jargon used by scientists to describe the variation in the
biology in the same type of lymphoma
is called disease heterogeneity.
Not recognizing the limitations of personal
observations and the fact of disease heterogeneity
can lead to
promotions by patients for an approach that seemed
to help them (and therefore is "certain" to help you
too!). The misguided reasoning goes something like this:
worked for me ... so now I must convert others to
the strategy I used so that you can be helped
Indeed with almost any Internet search we will find such
testimonials for a broad range of alternative approaches.
The power, or
tyranny, of positive
Can maintaining a
positive attitude help to keep the disease in check, or improve the
response to treatment?
The question has been
studied (see below) and the evidence shows no link between having a
positive attitude and outcomes. This is good news
in a way ... as we don't have to worry about worrying, or blame
ourselves for having the condition, or if the condition gets worse.
For lymphoma and other cancers it is the specific mutations in the
cell that causes resistance to treatment or more rapid growth of the
cells, not one's beliefs. The solution is not to blame
oneself or to try to be more positive ... it is to change the type
of treatment, which fortunately is usually possible for lymphoma due
to the wide range in types of treatments available to us.
more information on the limits of positive thinking we recommend:
Return to top
Choosing and Consulting
Physicians and Experts
Choosing a knowledgeable oncologist,
and having trust in his or her recommendations is very important.
Attributes of an excellent oncologist include:
Experience in the treatment of your
specific type of lymphoma
Participates as an investigator in
clinical trials, or is open to considering clinical trials
Actively participates in professional
organizations dedicated to continuing education and professional
development in the field?
Has empathy, compassion and the
ability to communicate and partner with you
Importance of Second Opinions
Do not be afraid that
seeking a second opinion will insult your doctor. Good doctors will
be open to the perspectives of other good doctors.
Why should patients consult
outside experts and become informed?
Even trained oncologists can have conflicts of interest, biases, or
gaps in knowledge - especially if he or she does not specialize
Investigators may have an intellectual bias about
a study drug that they are testing. A community doctor might have a bias
in favor of what is easiest to administer. A radiation
oncologist might have a bias to recommend what he or she is trained to
administer. An HMO physician may prescribe what is least expensive. Another
doctor might be influenced, unconsciously or not, by sales
promotions from the drug industry.
Our confidential survey is collecting
information on such questions:
LYMPHOMA TREATMENT SURVEY:
to learn about the treatments
you received, were offered,
and your role in decisions
Patients expressing a desire to continue working without
interruption may influence a busy physician to prescribe what meets
the immediate needs, without fully discussing possible negative
long-term implications of that treatment decision ...
Still another reason to seek a second opinion is that it sets up a
kind of peer review, which is likely to be an incentive for your
local community doctor to be more focused on your care and the
decision process. The conscientious community doctor will encourage a second
opinion by experts, and will be willing to carry out the
recommendations, when possible ... or send you elsewhere when not.
"Very few people in our trial were "offered" the trial
by their doctor . . . For me it was nearly instinctive NOT
to settle for what was available locally, but look for what the
options were anywhere in the US."
Sue writes: "If
possible, seek second and third opinions – even if your "Health Plan"
does not cover it.
Contact the pathology department
of the center in which the biopsy was done. Ask them for the
slides, or if they can send the slides to the center you are going to
for a second opinion. For second opinions at major cancer centers,
having the slides is considered essential."
NEW and important:
Trial Talk - experts to
consult for second opinions and to inquire about
Preparing for Consults
meeting with your oncologist is more important than you may realize. Preparation for consults can make all the difference. We
provide guidance on how to prepare for consults and how to
develop a productive and mutually respectful relationship with your
Write down a
concise description of your medical history and situation so the
experts you consult can get up to speed quickly. It should include the
BASIC - Your age, weight, height,
performance, child-bearing info etc.
DIAGNOSIS - cell type, grade,
stage, markers (cd20, bcl-2 etc.)
of Non-Hodgkin's Lymphomas: Cell
type | Histology | Grading
Call the pathology department in
advance and arrange to pick up your slides. Bring the slides
with you. This request is routinely asked of the pathology
TREATMENT HISTORY- including dates
and types of treatment, treatment response, and duration of
MAKE a WRITTEN LIST of all your
questions and give it to each expert you consult. This will ensure
that all of your questions are answered. There are no bad questions!
See and print out these resources
Before treatment, consult your doctor about if becoming a parent is in your plans. You may be able to store sperm or eggs
prior to treatment, for example.
also our topics on
PAL's web-based support forum
where you can ask questions,
and receive evidence-based information about lymphoma on a
searchable on web)
Never give up!
Lymphoma can usually be managed, sometimes cured, and ultimately,
many experts believe, all types will be curable. Remember that what's
safe and effective as therapy for someone else may not work for you, and vice versa.
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Monitoring tumor burden - imaging with CT, MRI and PET
Try not to get too anxious about modest
changes in the size of lymph nodes from one scan to another.
Many imaging tests cannot accurately distinguish between inflammation, tumor, and residual scar
tissue. Your doctor will evaluate the meaning in
the context of other indications.
Also, for indolent lymphoma, the disease can
wax and wane, and small changes can occur simply because of differences in
techniques and angles used.
See Tests and
Ask for a
of film at the time of the scans. There is
usually no additional charge if you tell them before they print them. When you are telling them where the report is to be send, also tell them,
"I need my own set of scans to take with me to the Univ. of Wherever". They have been most cordial about it. I have all my CT
and MRI scans in a closet. Yes, they are bulky and a pain to drag around, but mine are labeled PATIENT'S PERSONAL PROPERTY and I have them when needed.
(Tip from Jama Beasely.)
Best practice for the different types of lymphoma is
evolving rapidly. This fact increases the importance of seeking a second
opinion - especially prior to the start of treatment.
NCCN Guidelines based on Lymphoma Type
(requires free registration)
NCI Evidence-based Best Practices Cancer.gov
Choose when possible a center that has a group
practice that includes lymphoma specialists.
Seek a second opinion if at all feasible for you.
See Experts to consult for second opinions
Inquire at the closest major centers about
affiliated centers in your community.
For Aggressive lymphomas:
Aggressive combination treatments are
often recommended and the goal of initial and secondary treatment is
often to cure.
goals, types, outcomes and agents
diagnosis is Diffuse Large Cell, new tests may soon be available to
determine if you have a subtype that is sensitive or resistant to
Large Cell lymphoma - Prognosis
Diffuse Large Cell Resource Page
For indolent (slow growing)
Treatment is often deferred (watch & wait) until
you become symptomatic (with symptoms), unless it is localized. There is no standard treatment.
NCCN Guidelines based on Lymphoma Type
(requires free registration)
Watch & Wait
and Treatment Decisions.
CAUTION: Be sure to carefully review
the protocols with your doctor. Be certain to find out whether the use
of the therapy is likely to preclude the use of other important
treatments, should you need them.
Clinical Trials for me?
can be appropriate as treatment decisions when they can compare favorably to other studies and available standard therapies – be reasonable treatment
decisions for your clinical setting (first line, watch and wait,
Increasing participation in clinical trials is the only way to make progress
against lymphomas and this need is urgent. Referrals to appropriate clinical trials are needed and increasingly expected by the patient community.
from your doctor is not required in order to contact clinical investigators,
and you are not being disloyal by doing so. We believe that good doctors
will encourage such inquiries and will help you to select appropriate
We recommend that you also seek treatment advice from
independent lymphoma experts. This helps to ensure objectivity - some investigators may develop unintended biases, or have financial or professional
motivations for recommending a particular clinical trial they may be
recruiting patients for.
trial types you may consider, based on settings:
Alternatives to expectant management (watch & wait):
Agents and protocols with low / reversible / transient toxicity such as
immunotherapy, or select targeted agents.
First primary therapy:
Head-to-head studies comparing frequently prescribed protocols
where there’s genuine uncertainty about which is superior.
New uses, doses, scheduling of approved agents:
- following initial therapy with treatment
that enhances the first (example: augment immunity)
strategies following standard therapy
agent added to existing effective protocols
(not responsive to therapy):
Single agents with unique mechanisms.
New combinations of agents with unique mechanisms
Relapsed with poor bone marrow function / co morbidities
Targeted agents with low anticipated toxicity
Protocols with potential to stabilize progression
CAUTION: Carefully review the protocols with your doctor.
Clinical trials are by definition tests of agents or protocols that have not been
fully evaluated or compared to other protocols.
Learning about Lymphoma and Treatments
Become informed about your type of
It's easier to assess the prescribed course of action if you have a
basic understanding of the disease and the pros and cons of basic
Become informed about standard and experimental
so you can better participate in the treatment
to seek advice from a variety of reputable sources and consider
carefully the source and the integrity of the information provider.
Evaluating Medical Claims and Data
Our Experience with Alternative
When it's Time to Treat
A doctor's letter to a
patient with newly diagnosed cancer
Reader comment: "That
was a beautifully written, yet very difficult to read example of a
frank, but compassionate communication."
Lymphoma overview -
understanding the disease can help to relieve stress, because with
knowledge comes the power to make informed decisions.
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