 Encouragement
. . . see also menu
below
 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: 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.
Karl Schwartz (President,
Patients Against Lymphoma)
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| Carol Lee on
adjusting to the diagnosis |
From
Despair to Peace |
| Most I stay
positive? |
Barbara
Held (A Positive Outlook is
Overrated) |
| Lana on positive thinking |
Positive
Thinking
Also read: THE TYRANNY OF POSITIVE THINKING - PDF |
| Andrew J M ...
poetic allegory |
the
resolving of fear stemming from the diagnosis of MALT lymphoma |
| Paul Klein ...
sage advice & humor |
Who
gets cancer? Why me!
10 Commandments for Cancer Survival |
| LovesToRead |
What
Cancer Can't Do and My
Journey with Lymphoma |
| Support groups & Patient
stories & Help |
Support
Groups Make a Difference | Subscribing
to Groups Page
Patient Stories
| Anxiety & Depression - Psychosocial
support | Living with the "beast"
- Tips, Patients Helping Patients
Ken: having this type of cancer isn't "THE END"
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| Encouraging
Treatment Developments |
Lymphomas
versus solid cancers
Incurable but treatable indolent lymphomas?
Research
has and is continuing to making a difference
Tarzan - Another vine waiting
for me
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Essential reading |
Dr. Jerome Groopman, author of ‘The Anatomy of
Hope,’
discusses "True hope" and it's importance to survival -
"When a patient finds true hope, it's very different than
optimism."
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The Shock of Diagnosis:
The diagnosis of cancer and setbacks
in treatment can sometimes trigger the following strong feelings
and emotions:
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Shock, and disbelief |
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Paralyzing fear and anxiety of the
future |
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A preoccupation with the word
"cancer" |
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A heightened awareness to
any physical aches and pains |
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Grief for
what is thought to be the loss of your life goals and plans. |
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Concern
about the unspoken and yet obvious reactions of others who know of
your diagnosis |
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Becoming
overwhelmed by the enormity of decisions to be made, some of which
must be made very quickly |
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Feelings
that this is unfair to yourself and to your loved ones |
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Confusion and lack of
control and feelings of uncertainty
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Must
I keep a positive outlook? |
I believe
that there is no one right way to cope with all of the pain of
living.
As an academic psychologist, I know that people have different
temperaments,
and if we are prevented from coping in our own way, be it
"positive" or "negative," we function less well.
Barbara Held (A
Positive Outlook is Overrated)
I hate when people try to blame the
patient so it's good to know we don't
have to stay positive all the time or risk dooming ourselves to an
earlier demise.
That being said, I believe there are lots of pluses to trying to stay
positive as much as possible.
I figure that cancer may eventually take me (notice the word may, I'm
still not willing to
treat it as inevitable, still hoping to die in my sleep when I'm
an old lady).
If I waste today worrying about that future then I'm wasting the time
I know I do have--now.
At the end of my life I don't want to look back and see that I let
cancer steal the time that I did have.
That doesn't mean that I don't have the occasional melt-down pity
party.
So it's good to know that those moments aren't going to hasten my
departure.
--------------------
Sylvia
But Shock and Disbelief often Subsides ...
The
diagnosis of cancer is impossible to describe to others ... who have not experienced
it.
It takes your
breath away, and you may feel that you are drifting away from the world.
Events,
sounds, and the day-to-day preoccupations of life may lose
meaning.
The
sadness and
confusion you feel can be overwhelming ...
as you grieve the loss of your dreams and expectations.
Please know that
these
feelings are normal and that they will
subside
when
you
learn about your disease ...
and begin to realize
that life can be rewarding, full, and enriching
after the diagnosis.
Indeed,
many patients report finding themselves through the experience.
But this ‘good news’ will take some time.
-
Karl Schwartz (caregiver) & Carol Lee (survivor)
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How do I get support without feeling like I’m a failure at
handling this?
Support Groups Make a Difference:
If you
look, you will find a community of individuals who have been where you
are now and who are willing to help you understand the many choices
that you will face.
See the
Support Groups page
for a list of online support groups to which you can easily subscribe
or unsubscribe with one click. The wisdom of many of those
who have traveled this same road has been gained one step at a time,
and these fellow-travelers will help you as you take those steps for
yourself.
Do
I have to be a ‘joiner’ or reveal everything about myself if I
join an online support group?
You
don’t have to be ‘a joiner’ to do this, because, while you can
post questions by e-mail, it is perfectly fine to remain anonymous and
just read what others are sharing (this is sometimes called
‘lurking’). Most members do not post, or do not post often.
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Lymphomas versus "solid" cancers
It's
common to be diagnosed with lymphoma at an advanced stage (III or IV)
and with bone marrow involvement. While this might seem alarming, you should know that advanced stages
of lymphoma can be treated successfully, and that lymphoma in the bone
marrow is as reversible as lymphoma anywhere in the body.
One way to understand this is to compare lymphoma with a so-called
solid tumor, such as a prostate cancer. Here the cell of origin
does not normally exist anywhere but in the prostate. So when
you find malignant prostate cells in the lymph nodes, or in the bone
marrow, you have a big problem. Compare with blood cells that we
expect to move anywhere in the lymphatic or circulatory system,
including the nursery for these cells, the bone marrow.
Another favorable aspect of blood cancers is that they are generally
much more sensitive to treatment than "solid" tumors,
probably because blood cells are more poised to self-destruct, and
they can also regenerate more readily from stem cells in the marrow.
Consider that the main side effect of chemotherapies is a drop in
blood counts, but not the destruction of normal prostate or breast
cells ...
We're
not suggesting that lymphoma is not a life-threatening disease.
It is. But we know that many types of lymphomas can be managed
well, other types can be cured, and the potential to make additional
progress against this family of diseases is real.
Incurable but treatable indolent lymphomas?
Carol Lee
(a lay person with MALT lymphoma) explained:
In the case of low-grade lymphomas, the word 'incurable' does not mean what
we would commonly believe. I think 'incurable' is usually associated with
'fatal', perhaps...can't be fixed, it's going to get you, etc. What 'incurable but treatable' means is that low-grade lymphomas can be
treated along the way, with most people experiencing remissions during which
the lymphoma is not at all active or causing any harm.
It is my understanding that (for now) it cannot be said that a low-grade
lymphoma will be totally cured, because the cells divide so slowly that
treatments can't get every last one of the little buggers, as they may with
aggressive, rapidly dividing, cancer cells. But that does not mean that it
can't be cured so you will die from it--as is true in other cancers, like
metastatic cancers, for example, that can be treated but not finally cured
and which are terminal.
I hope that makes sense. I also know when we first knew 'incurable' that was
very frightening--mostly because of what that word means when applied to the
other cancers.
Treatments are Getting Better, and the Best is Yet to Come
Please realize that very
talented professionals and institutions are working to solve the
problem of lymphoma, and that the experts are optimistic are truly
optimistic that we will cure many more cancers and better manage
others in the near future.
Aggressive lymphomas
can be treated effectively and is often cured with standard therapies
that have been improved, and will continue to improve.
Indolent
(slow-growing) lymphomas—while generally not curable with
standard therapies, there is much we can do to manage this form of the
disease. Better therapies with lower toxicity are in development.
New treatment agents like Rituxan
that target specific receptors on malignant cells are available now. And
many experts believe that we will be able to cure indolent lymphomas
if not control it - as we would a chronic condition such as diabetes -
now and even better in the near future.
NOTE: The five-year relative survival rate for
non-Hodgkin's lymphoma patients has
risen from 31% in 1960 to
52% in 2001. - LLS
Improved survival of follicular lymphoma patients in the surveillance,
epidemiology, and end-results (SEER) program. ASCO 2004 ~ Abstract No: 6578
More New treatments
Aggressive combination
treatments, such as CHOP and Rituxan, are producing durable disease
free remissions and a hope for a cure in some patients with indolent
lymphomas.
New treatments such as
Bexxar and Zevalin can work as well as chemotherapy, without many of
the wide-spread side effects associated with chemotherapy.
New agents and
investigational immune-based therapies, such as Idiotype
vaccines, are available to patients who participate in clinical
trials. Additionally, research into identifying molecular
targets in lymphoma give more reason to be hopeful.
Daily we read of advances
in the science of understanding and treating lymphoma, which have
already led to a growing list of promising
therapies and targets for treatment and the National
Biospecimen Network is sure to accelerate the rapid progress we
have seen in just the last eight years: Rituxan, Zevalin,
Bexxar approved, and many dozens of new and exciting treatment
candidates under development and FDA assessment.
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Is there anything else I can do to
help myself?
Life-Style Changes?
Many patients make
life-style changes after diagnosis to help them tolerate treatments,
improve their general health, to possibly slow progression or enhance
treatment efficacy and safety, and to improve quality of life.
To help with these goals,
we've created a Life style
page, which includes information on natural medicine and diet. We
include links to supporting studies so that you and your doctor can
decide if a particular supplement or life-style change is safe and
appropriate for you.
Resources:
“You have cancer,” says the doctor, and your
life is turned upside down.
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For a free magazine subscription--go to
www.curetoday.com
"I have found the magazine CURE to be a wonderful source of information and inspiration. I found mine in my oncologist's waiting room and quickly filled out the mailer for my free subscription to start. Since receiving it, I have shared it with others who were equally surprised at the wide coverage of new discoveries, coping skills we can develop, nutrition tips and just general cancer related information."
June, nhl survivor
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