By patients
for patients
Many find it beneficial to keep a Treatment
Diary that includes questions, a log of
your activities, and dates of tests and results.
Carrying out our Mission
depends
on Your Support
ON THE PAIN OF DIAGNOSIS and
RUSHED DECISIONS:
"Somehow there
are some doctors who think that after they tell you "you have
cancer" you are supposed to be calm and completely rational and not
even think
about crying. The first oncologist I went to described me as hysterical and
thought
I should take immediate treatment "if only to calm yourself and let
you
believe you are doing something."
I think he was hysterical. Not me. I reacted like any person
hearing that
diagnosis would. Sad, angry and confused.
The period immediately after diagnosis is the exact wrong time to make
a
decision. Fortunately, with low grade NHL you have the luxury of
some time to
think.
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
not
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:
HS on Cyberfamily wrote:
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
the mesentery.
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
scary....
|
CONTENTS
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Before
Diagnosis
 |
Most
enlarged lymph nodes are not lymphomas.
See Lymphadenopathy: Differential Diagnosis and Evaluation
American
Family Physician |
|
|
Biopsy
The biopsy is essential to making an accurate diagnosis.
Also, if feasible: go to a center that can snap-freeze
a portion of the tissue
for advanced diagnostics and for possible clinical uses, such as
vaccines
|
|
Encouragement
and support
The diagnosis of lymphoma is a blow, but it can and usually does get
better with information and time
|
|
Choosing a physician
and consulting outside experts
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 treatment options. You can and should also consult with
outside experts, especially prior to treatment.
|
|
Prepare for
consults
Preparation can make all the difference. |
| Preserving
fertility
Before treatment, consult your doctor about preserving
fertility if becoming a
parent is in your plans. You may be able to store sperm or eggs
prior to
treatment, for example. |
|
Treatment
decisions
Shared decision making: understanding your options; agreeing with the plan |
|
Clinical trials for
me
How to ask, and where to look |
| Learning about lymphoma
and treatments
Informed choice starts with understanding the disease
and the treatments |
|
When it's Time
to Treat
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 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: http://www.lymphomation.org/about-lay.htm
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: http://www.lymphomation.org/treatment-types.htm
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
on this
 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.
See
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
decisions.
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.
These
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
Section.
|
__________________________________________________________
Biopsy and Staging - The way that lymphoma is diagnosed
| It's vital to have a biopsy to obtain an
accurate diagnosis. This is true at the first diagnosis, and
when a relapse is suspected.
An accurate biopsy requires the
surgical resection (removal) of an enlarged lymph node.
See Biopsy and Bone Marrow Biopsy
|
| Ask to have a portion of the tissue
snap-frozen. You
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.
|
| Most experts hold that a fine needle
aspiration does *not* provide adequate tissue for an accurate
diagnosis.
|
|
The diagnosis of lymphoma can take many weeks to complete.
This is typically a very difficult and anxious time for the patient and family.
See Anxiety and Depression support page
|
Confirm the diagnosis:
Receiving an accurate diagnosis is critical to getting the best
care.
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
center. Also see Obtaining
an Accurate Diagnosis - LRF
The slides of your biopsy
can be sent to a second pathologist for confirmation of the diagnosis.
Mistakes
in initial diagnosis are more common than you might think!.
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
Imaging.
Ask for a second set
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
copy
|
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. We have received a good
number of reports from patients on the support lists of incorrect or missed
diagnosis. Unfortunately, it is more common than we would like to
think.
See Pathology
- Getting a second evaluation |
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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
trials?
|
|
actively participate in professional organizations
dedicated to continuing education and professional development in
the field?
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|
have compassion and the ability to communicate and partner
with you?
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
in lymphomas.
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."
See Choosing
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.
|
| Avoid alternative
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
or weak.
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
following:
| BASIC - Your age, weight, height,
performance, child-bearing info etc.
|
| DIAGNOSIS - cell type, grade,
stage, markers (cd20, bcl-2 etc.)
See Characteristics
of Non-Hodgkin's Lymphomas: Cell
type | Histology | Grading
| Staging
|
| 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
department.
|
| TREATMENT HISTORY- including dates
and types of treatment, treatment response, and duration of
response.
|
| 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
pages:
|
|
__________________________________________________________
Treatment Decisions
For indolent (slow growing)
lymphomas: Treatment is often deferred (watch & wait) until
you become symptomatic (with symptoms). There is no standard treatment.
See On Rushed
Decisions in the sidebar above.
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.
|
Do consider clinical
trials (see below).
|
|
Be prepared to change course. Prepare alternate plans before
the need to use them may occur. |
__________________________________________________________
Clinical Trials for Me?
|
Clinical trials
may be appropriate if your type of lymphoma
is not considered curable with standard treatments, or it becomes
resistant to treatments.
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|
We believe that you can
bring up the subject with your doctor, or consult with outside experts
to discuss all your treatment options, including clinical trials.
You
don't need your doctor's permission to contact clinical investigators,
and you are not being disloyal by doing so. We believe that good doctors
will respect you for making these inquiries.
We recommend that you also seek treatment advice from
non-treating 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.
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|
Do consider clinical trials of
therapies with safe toxicity profiles, even when not symptomatic and
treatment is not required. This could be the most appropriate
time to try novel targeted or immune-based protocols that may have
favorable safety profiles. Be certain to find out whether the use of
the trial therapy is likely to preclude the use of
standard treatments, should you need them later on.
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|
Standard treatments, such as
chemotherapy are often effective and appropriate. However, over time lymphoma cells can develop resistance to
chemotherapies and it is therefore the opinion of at least some experts that novel and more targeted treatments are
needed in order to better manage the disease in the long term.
CAUTION: Be sure to carefully review the protocols with your doctor.
Clinical trials are by definition tests of agents that have not been
fully evaluated, and they are not necessarily risk-free. Nor is it
guaranteed that a new treatment will be more effective than
existing treatments, or even effective ~ although we anticipate that
at least some will turn out to be beneficial.
|
|
To help ask questions of your
doctor,
Print out the brochure we
created called
Is a clinical
trial
appropriate for me?.PDF | PDF-help
|
|
Our
Clinical Trials page lets you
easily locate studies listed in the ClinicalTrials.gov database that
are specific to your lymphoma.
Search ClinicalTrials.gov for lymphoma trials by
Lymphoma
type | Treatment type | Other
| State
or Country
|
__________________________________________________________
Learning about Lymphoma and Treatments
| Become informed about your type of
lymphoma
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
treatment options.
|
| Become informed about standard and experimental
therapies so you can better participate in the treatment
decision process.
|
| Be sure
to seek advice from a variety of reputable sources and consider
carefully the source and the integrity of the information provider.
See
Evaluating Medical Claims and Data
and
Our Experience with Alternative
Medicine
|
__________________________________________________________
When it's Time to Treat
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Your donation is tax deductible |
