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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 Pathology Report |
Life Style and
Alternative Medicine? |
Choosing a Doctor |
Prepare for Consults ...
Mainly we keep saying: Try your best to
be uninteresting - a dull case!
This topic is for individuals or
loved ones who have just been diagnosed - or just prior to the
A lymphoma can be a serious
disease, but treatment can range from curative to highly effective at
managing it as needed- depending on the type and its aggressiveness.
The rarer subtypes requires
more attention than most diseases since expertise is less common, so you
may need to get more involved with your diagnosis and treatment and seek
also an expert to advise 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.
Many patients and caregivers report that the uncertainty
before the diagnosis was more stressful
than receiving the actual diagnosis.
"Tell your story.
Studies have shown that more than 80% of diagnoses can be made based
on history alone. Unfortunately, doctors sometimes seem to want to
steer you toward a cookbook "chief complaint" or a series of
Learn to tell a brief, effective story. Prepare and rehearse it."
Opinion: When doctors don't listen listen
By Dr. Leana Wen and Dr. Joshua Kosowsky,
That said, in most cases, there is
good reason to be hopeful that the symptoms that concern you are
NOT caused by a lymphoma:
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 lymphomas do
occur -- rarely do they present as a medical emergency -
in most cases ample time to
get the diagnosis right.
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
noncontiguous (separate) areas of the body (more suspicious)
if only one area is involved." (less suspicious)
adenopathy should prompt further clinical
Don't rush to judgment!
"Although the finding of lymphadenopathy
(generalized or localized)
sometimes raises fears
serious illness, it is, in patients
seen in primary care settings,
usually a result of benign (not cancer)
"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.
"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
Fine-Needle Aspiration Cytology in the Diagnosis of Lymphoma The
Linda M. Sandhaus, MD
* Mayo Clinic
Swollen lymph nodes Symptoms -
Frequently asked question:
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 Symptoms of lymphoma
The biopsy - is the taking of a sample of
the cells for evaluation. It 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, which is needed in order to guide therapy.
Also, if feasible: go to a center that can
a portion of the tissue
for advanced diagnostics and participation in research,
which is vital to making progress against lymphomas. The key to
progress being understanding
the disease biology, including gene expression at a molecular level.
We recommend that you ask for and
receive a copy of this report.
The diagnosis is usually correct, but mistakes are not rare.
a second evaluation of the tissue sample seems prudent.
Getting a Second Pathology
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.
The pathology report
The diagnosis of lymphoma
is a blow, but it can and usually does get better with information
Statistics about outcomes should not be confused with
an individual's prognosis.
The purpose of statistics is to find the median (similar to average) outcomes and
trends in ... LARGE groups,
Prognosis is based on
individualized clinical factors, such as your age, type of lymphoma,
where it is in the body, the underlying biology, and response to
therapy. See for more
Can will power and
positive thinking help?
While being optimistic
and avoiding unproductive worry helps to improve our quality of life
and perhaps our general health, the question has been studied
(see ACA.org item below) and the evidence shows no link between
positive attitude and outcomes.
This is good news in a way ... as we don't have to worry about worrying,
ourselves for having lymphoma or if the condition gets worse. It is
the differences in the biology of the condition that determines the behavior -
including the response to therapy.
Fortunately, for lymphoma a different class of therapy can be
effective when the first does not work optimally.
For more information on the limits of positive thinking we
On the danger of comparing outcomes
Our advice is not to get caught up chasing
stories about the successes of others, or becoming
distraught when reading about bad outcomes.
This media item describes why 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."
The scientific jargon for the variation in the
biology and behavior found in same type of lymphoma
is disease heterogeneity.
Not recognizing the limitations of personal
observations and the facto of disease heterogeneity
can lead to
promotions by patients for an approach that seemed
to help them.
The misguided reasoning goes something like this:
worked for me ... so now I must convert others to
the survival strategy I used so they can be helped
too. Indeed with almost any internet search we
will find such testimonials for a broad range of
alternative approaches. In this PDF
paper we describe the many significant problems with
- why they are not reliable.
Can life style changes be helpful?
YES! Exercise and improving our fitness appears to benefit lymphoma
patients - even during treatment. It can improve not only our
performance level but our state of mind. Being fit is also strongly
associated with better survival.
YES! Adopting a healthful diet can decrease the risks of secondary
conditions, and improve our fitness. Poor diet and associated
health problems can limit our ability to tolerate and recover from
Limitations: Unfortunately there is no clinical evidence to support the use of
diets, specific herbs or vitamins as a treatment for lymphoma.
(It would be very big new if such evidence existed) Typically,
such claims are based on testimonials and ads from vitamin
suppliers, which cite cell culture experiments -- very poor models
for the effects on tumor cells that arise in the body.
Encouragement and support
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.
One of the best first steps you can take is to locate a doctor you can
partner with and who can advise you about standard and investigational
You can and should also consult with outside experts,
especially prior to treatment.
Choosing a physician and consulting outside experts
Prepare for consults
Preparation for consults can make all the difference. We
provide detailed guidance on how to prepare for consults and how to
develop a productive and mutually respectful relationship with your
Tips: Questions for Doctors PDF
We will consolidate the above soon
Before treatment, consult your doctor about
fertility if becoming a parent is in your plans. You may be able to store sperm or eggs
prior to treatment, for example.
This topic describes how to
preserve fertility prior to therapy:
This topic shows how often standard treatment can be effective and
This page provide information to help with shared decision making -
understanding your options; agreeing with the plan:
These topics provide general
guidelines based on frequently asked questions on how lymphoma is
monitored and considerations at relapse:
Learning about lymphoma
What you can do to get the most from treatment and protect
from side effects?
Encouragement & Support
Probably nothing in life is more stressful than the diagnosis of a cancer, and it makes you wonder if we were meant to know (wired to know) too much about dangerous medical conditions - considering that during the majority of human evolution there were no diagnostic tests.
What I think needs to be conveyed to the newly diagnosed (and their caregivers) is that blood cancers are generally more treatable/curable than other cancers, ... reversible even at advanced stages.
Depending on the type and grade, a lymphoma may be cured or it may be managed well - treated minimally as needed.
There are about 30 or 40 types of lymphomas, but the two main categories are indolent (slow growing) and aggressive. The aggressive type (DLBCL, Burkitt's, etc.) is treated
promptly with intent to cure. For the indolent type (follicular, MALT, etc.) the approach to treatment varies considerably - sometimes, but not commonly, treatment is never required.
Lymphomas are systemic conditions ... the cell of origin being a lymphocytes, an immune cells, which by design can migrate anywhere in the body to fight infection.
Normal lymphocytes react to an infection by increasing in number in order to disable a pathogen (bacteria, virus, fungus, etc). When the job is done, these cells self destruct or differentiate into other forms of lymphocytes. Indeed, when evaluating enlarged lymph glands it can be challenging for the pathologist to distinguish between benign reactive conditions and a lymphoma.
Lymphoma cells are abnormal lymphocytes that act similarly but have lost growth and survival controls. These cells (all clones of one cell) either grow too fast, or fail to self-destruct - the growth and survival is independent of immune function, or at least partially.
See for more detail:
The good news is that lymphocytes, normal and abnormal, are generally highly sensitive to systemic therapies and radiotherapy. Consider how quickly normal blood counts drop in response to chemotherapy, even at low doses. Also, unlike solid cancers, there is a reserve of stem cells which will replenish the supply of blood cells after treatment, and these cells are less sensitive to standard therapies for lymphomas.
See for treatment types:
I hope this little overview helps to relieve anxiety a bit. This is not to say that lymphomas are not life-threatening conditions ... they most certainly are, or can be. And the risk varies by type, and within types - sometimes, for example, follicular NHL never needs treatment, but for most it does. But unlike other cancers, current therapies can be very effective, sometimes curative, and the outlook for additional clinical advances is genuinely bright. More
See the Encouragement page.
Seek out real live folks in your community
(see Support Groups)
who have lymphoma and are in remission and/or are doing well. They will give you hope,
information, and encouragement.
Judy writes: "I needed lots of time to read and integrate the fact that
I had cancer."
Talk to your doctor about your anxiety if it
is persistent. There are very good new medications that have
helped many lymphoma patients to enjoy life and to live well with lymphoma.
Anxiety and Depression.
Find sources of
HUMOR on a daily basis.
Judy writes: "Living with Lymphoma is like a roller coaster, and I
needed to learn to ride it rather than be terrified and constantly focused on it.
Humor helps a lot."
Find ways to reduce anxiety and enjoy life. Meditation, prayer, exercise can
all help in this regard. Anxiety, while natural, can harm your
quality of life, and perhaps interfere with your ability to make good
Judy writes: "There is a positive
aspect to anxiety if it motivates you to learn and seek the best help possible."
Get involved in supporting others and/or in advocacy projects.
activities will help you to become a part of a larger community and give purpose to your
situation. Advocacy will help to increase funding and direct the
enormous talents of our scientists to work for us to create cures and management protocols
that are safer and improve quality of life.
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.
Review the information about life style
provided here. There is some scientific data
suggesting that some complementary approaches might be useful to improve
quality of life and general health. Also
the literature indicates that good
health and performance is associated with improved survival.
For guidance on insurance matters, drug
payment help, or travel for treatment, visit our Support
Biopsy and Staging - The way that lymphoma is diagnosed
It's vital to have a biopsy to obtain an
This is true at the first diagnosis, and
when a relapse is suspected.
Most experts hold that a fine needle
aspiration does *not* provide adequate tissue for an accurate
An accurate biopsy requires the
surgical resection (removal) of an enlarged lymph node.
See also Biopsy and
Bone Marrow Biopsy
Ask to have a
portion of the tissue snap-frozen?
can have this done at a later time as well, but the ideal time is when
tissue is being taken to make a diagnosis.
Potential clinical uses:
1) for advanced diagnostics (present and future) which can be
used to determine eligibility for clinical trials testing targeted drugs ... to see if our tumor contains the molecular
pathways the agents target.
2) for creating therapeutics from the cells, such as cancer vaccines.
Locate CLIA accredited laboratories by state:
Be sure to request a CLIA
Certified Laboratory "defined as clinical
diagnostic laboratories certified by the DHHS Health Care
Financing Administration ... as revised by the Clinical Laboratory
Improvement Amendments (CLIA)".
See also our resource on Snap Freeze
The diagnosis of lymphoma can take
many weeks to complete.
This is typically a very difficult and anxious time for the patient and family.
Anxiety and Depression support page
Confirm the diagnosis?
Receiving an accurate diagnosis is critical to getting the best
Have the diagnosis confirmed by a second pathologist who specializes in
lymphoma, especially if there is any uncertainty in the pathology report
or when the evaluation was not done by an expert in a major medical
The slides of your biopsy
can be sent to a second pathologist for confirmation of the diagnosis.
in initial diagnosis are more common than you might think.
Return to top
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.)
The Pathology report - you must ask for a
It's essential to receive a copy of your pathology report.
Without it you cannot seek the advice of lymphoma experts. We
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.
An accurate diagnosis is a
key to receiving the the best treatment as each lymphoma type can be
treated very differently. Unfortunately an incorrect diagnosis is more common than we would like to
- Getting a second evaluation
Choosing a Physician and Consulting Outside Experts
Choosing a knowledgeable oncologist, and having trust in his or
her recommendations is very important. Does your oncologist
have experience in the treatment of your specific cancer?
conduct clinical trials, or is open to considering clinical
actively participate in professional organizations
dedicated to continuing education and professional development in
have compassion and the ability to communicate and partner
NOTE: 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 an investigational
therapy they are testing. A community doctor might have a bias
in favor of what is easiest 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.
Patients expressing their 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 good 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.
Locate an outside cancer expert
with whom you can consult.
David writes: "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."
a specialist - LLS for outstanding guidance on this subject.
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.
Modifying Your Life Style and
YES, we encourage changes to
your lifestyle practices in ways that supports general health and
Exercise that is appropriate to your
Adopting a healthful diet
Minimizing and better managing sources
of chronic stress
Setting goals that are a good fit with
your interests and values
medicine doctors who promise they will cure
you, and those who
patently dismiss conventional therapies.
See Complementary and Alternative Medicine
See Evaluating Medical Claims and Data
for tips about bias and conflict of interest, and what makes data strong
See When Lay Persons Give Medical Advice,
for background on why it's important to rely on the guidance of medical
professions, and not patient stories, when making treatment decisions.
Prepare for Consults
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
NCCN Guidelines based on Lymphoma Type
(requires free registration)
NCI Evidence-based Best Practices Cancer.gov
For Aggressive lymphomas:
Aggressive combination treatments are
often recommended and the goal of treatment is often 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.
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
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