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Cancer Monthly News and CancerWire
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Greetings!
In this issue of CancerWire we examine Doctor
Consultations, Cancer, and Common Sense -
tips to
consider when you or a loved
one is diagnosed with cancer. We also have a
fascinating article on Lung Cancer, Sunshine,
and
Vitamin D, and an update on My Cancer Place,
the popular website for cancer patients to
network with each other.
Disclaimer - Please Read: None of
the information in CancerWire is a
substitute for professional medical advice,
examination, diagnosis or treatment and you
should always seek the advice of your
physician or other qualified health
professional before starting any new
treatment or making any changes to an
existing treatment. No information contained
in Cancer Monthly or CancerWire including the
information below, should be used to
diagnose, treat, cure or prevent any disease
without the supervision of a medical
doctor.
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Doctor Consultations, Cancer, and Common Sense
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Here are some common sense tips to consider when
you or a loved one is diagnosed with cancer.
These
are just some suggestions and are no way
meant to
be a comprehensive or exhaustive list.
Being at Your Best When You Are at Your
Worst
Consultations with doctors and other
clinicians take
on critical importance as you gather your
facts to make
informed treatment decisions. But, there is a
problem. During these sessions people are
stressed
and emotional. Yet, it is at this very same
time that
you must be calm and decisive. You have to
be at
your best when you are feeling at your worst.
These
tips were designed to help.
Recording Consultations
When critical decisions are at stake,
conversations
with oncologists and other physicians take on
enormous importance. In addition, sometimes
these
conversations take place when the doctor is
very busy.
Given the hurried bedside manner of some
physicians and the emotional intensity for
the patient
and family, it can be very hard to listen,
understand,
and ask appropriate questions during these
critical
consultations. Tape recording important
conversations with your doctor(s) about
treatment
options is an excellent way to provide a
record so that
you can: 1) concentrate on listening; 2) do
not have to
worry about taking notes; 3) can focus on your
questions; 4) can share the conversation with
a family
member or friend who could not attend the
consultation; 5) and can replay and review the
conversation in a less stressful environment
such as
your own home to fully comprehend what was
communicated.
An added benefit is that recording the
conversation
can facilitate more time with the doctor.
When the
doctor knows that the conversation is being
taped they
may be more courteous, patient, and provide more
information and options. Furthermore, it
provides
an advantage to both you and your doctors if
there is
ever a question later about what was or was not
said.
You should not secretly tape record anyone.
In many
jurisdictions this is against the law. You
should
always obtain permission by asking everyone in
attendance at the consultation that
you want a tape recording of the meeting. In
fact, it is always a good idea
to use the first few seconds of the recording
to have all
the parties acknowledge on tape that the
meeting is
being recorded with their permission.
Questions During Treatment Consultations
Typically, during these consultations, the
doctors
control the conversation. They have
participated in
these meetings many times before. So, while
it may
only be the first or second time for you, it
may be the
thousandth time for the doctor. This means
that doctors
will typically share with you the information
that they
think, based on their experience, is
important. The
problem is that this may not be the
information you
want. Therefore, here are some basic
questions to
consider asking:
Pathology Second Opinions
The pathology
of your tumor cells tells
pathologists
whether you actually have cancer and what kind.
Having a second look/opinion by another
pathologist
from another hospital helps ensure that you have
been properly diagnosed. There have been
unfortunate situations when patients have been
treated inappropriately because the wrong
kind of
cancer was diagnosed. In many hospitals it is
standard practice to "send the slides out"
for a second
opinion. You may want to ask to ensure this
step was
taken in your case and find out who rendered the
second opinion and what they concluded. Or,
if this
step was
not taken, why the doctor thinks it is
unnecessary.
Treatment Track Record
With any treatment, even a clinical trial,
there is a track
record. The only exception would be if you
are the very
first patient to be placed on this therapy.
This is rarely
the case, so there are records, data, and often
published medical articles pertaining to the
performance of nearly every therapy. This is
information you may want to have and the
following
questions address this:
* How many patients have you treated with
my exact same cancer? Were they the same age and
in the same general state of health?
* Which treatments did you use?
* Did any patients have side-effects from the
treatment? What were they? What was the worse
side-effect? Did anyone die from the treatment,
not the
cancer? (Note: Some patients do not die from
their
cancer, but die from the treatment. You
should ask
questions to learn how toxic the therapy is.)
* What were the results for both survival and
quality of life?
* Can you show me where the survival
information comes from? Is it reported in the
peer-reviewed published medical literature? Can
you give me a copy of the article?
* Are any of the patients still alive? Can I
speak with them? (Note: Other patients (like
you) who
have been administered the same therapy by the
same oncologist(s) can provide valuable
insight into
what to expect.)
* Are these drugs FDA approved for treating
my cancer? (Note: Many cancer drugs are not FDA-
approved for the use for which they are
prescribed.
(This is called "off-label" use.) In fact,
some drugs that
are widely used for a particular cancer may
never have
been approved for safety or efficacy for that
use by the
FDA. It is valuable to know if any of the
drugs the
doctor intends to prescribe would be used
"off label"
and if so, why the doctor is comfortable with
that use.)
Treatment Conflicts of Interest
Drug companies sometimes pay doctors a certain
amount of money per patient for each patient
placed
on the drug company's clinical trial. In
addition, some
doctors are involved in oncology companies as
owners or consultants. Furthermore, the
chemotherapy
concession allows oncologists to
make profits on various chemo drugs they
prescribe.
For all of these reasons you may want to ask
your
doctor if they have any financial or research
interest in
the treatment they are recommending.
What is the Prognosis With No Treatment?
Comparisons are very seldom made between treated
and untreated patients. When survival and
quality of
life comparisons are made, they are usually made
between two or more treatments, not between
patients who received a treatment like
chemotherapy
and patients who received no treatment at
all. It is very
difficult, therefore, for a doctor to
objectively answer the
question how long did the treated patients
live and
what was their quality of life compared to
those who
received no therapy. Nonetheless, if you are
discussing a therapy that has serious side
effects, it
may be of interest to ask your doctor for a
reference/study that discusses this. Be
advised that
such studies may not be available. In fact,
we recently
asked an Associate Professor of Clinical
Epidemiology at Columbia University to suggest
articles on this very topic. So far she has
provided
only one.
In conclusion, it is your body and your life.
Don't be
intimidated by the doctors. Get the answers
you need
to make an informed treatment decision.
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Lung Cancer, Sunshine, and Vitamin D
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Sun Exposure Could Reduce Lung Cancer Risk Through Vitamin D
Those long, dreary January days might do more
than
give you a case of the winter blues. New
research
finds that staying indoors too much might
actually
affect your risk of developing lung cancer.
Although cigarette smoking is by far the
biggest cause
of lung cancer, accounting for more than 85
percent of
cases according to the National Cancer
Institute, a
lack of vitamin D might play a significant
role in most
of the remaining cases, says Cedric F.
Garland, DPH,
professor in the Department of Family and
Preventive
Medicine at the University of California, San
Diego.
Dr. Garland and his colleagues recently
looked at lung cancer incidence rates for 111 countries using a
global cancer database. After controlling for
cigarette
smoking, they found that lung cancer
incidence was
higher in northern latitudes, and exposure to
the sun's
ultraviolet B (UVB) rays was associated with
reduced
rates of lung cancer in both men and women.
Cellular Glue
The majority of vitamin D in the body is
produced
when the skin is exposed to sunlight. Vitamin D
affects cancer risk by regulating the
secretion of a
substance called e-cadherin, which is a sort
of glue
that causes cells to stick together, says Dr.
Garland. "When cells are stuck tightly to one
another,
they inhibit one another's growth. This is
called
contact inhibition," he says.
Without adequate vitamin D, the cells start to
separate, giving them room to reproduce. As they
reproduce, the cells have to compete for limited
resources. "Some cells divide faster than
others.
Those that divide fastest will eventually
predominate
as a crowded, disorganized mass of
rapidly-dividing
cells competing for nutrients and oxygen,"
Dr. Garland
says. "The most aggressive cells overwhelm
the more
normal cells. The mass develops a blood
supply and
becomes a malignancy [cancer]."
This isn't the first study to find a
connection between
vitamin D and cancer. Previous research by Dr.
Garland and his colleagues linked adequate
vitamin
D to reduced rates of colon, breast, kidney,
ovarian,
and endometrial cancers. Research also has found
that vitamin D intake can improve survival
rates in
people who already have lung cancer.
Get Outside
The best way to ensure that you're getting
enough
vitamin D is to get outside in the sun for 10-15
minutes every day between the peak sun hours
of 11
a.m. and 1 p.m., says Dr. Garland (African
American
people should stay out twice as long, because
they
only make one-fifth the amount of vitamin D as
Caucasians).
Sounds easy, but there are a couple of
catches: First,
at least 40% of your body must be exposed to
sunlight
in order for it to be absorbed appropriately.
That
means you'd have to wear shorts and a t-shirt
(or no
shirt for men), which is difficult to do if
it's 25 degrees
in the middle of January.
You also can't wear sunscreen, because it
will block
your skin's ability to absorb sunlight.
Considering that
prolonged sun exposure can lead to skin
cancer, Dr.
Garland recommends always wearing a wide-
brimmed hat when you're outside, and putting on
sunscreen and protective clothing as soon as
you've
gotten your 15 minutes of unprotected sun
exposure. "The sunscreen should have a
protection
factor of at least 15 in the ultraviolet A
(UVA) part of the
sun's spectrum, as well as the usual
protection in the
ultraviolet B spectrum," says Dr. Garland.
"UVA is
about 97% of solar ultraviolet, and blocking
it after the
short time spent making vitamin D daily is a
key to
preventing skin cancer. Clothing blocks UVA
better
than sunscreen."
If you live in a northern climate, or you
have a history of
skin cancer or sensitivity to the sun that would
preclude you from getting outside, ask your
doctor
about taking a vitamin D supplement. Although
research still needs to determine the optimal
dose,
2,000 IU daily should give you what you need.
Also
add food sources of vitamin D, such as milk and
yogurt, to your diet.
The best advice when it comes to lung cancer
is to
quit smoking. "But for non-smokers, vitamin D
is the
best thing they have. There isn't any other
practical
way to reduce risk of lung cancer in
nonsmokers," Dr.
Garland says.
Before embarking on any supplement, dietary,
or solar
health program you should consult with your
professional clinician.
Source
Mohr SB, Garland CF, Gorham ED, Grant WB,
Garland
FC. Could ultraviolet B irradiance and
vitamin D be
associated with lower incidence rates of lung cancer?
J Epidemiol Community Health, 2008;62:69-74.
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MyCancerPlace.com Has 6 Million Page Views
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The Popular Cancer Website - My Cancer Place Reaches a New Milestone
People with cancer have been joining
mycancerplace.com,
the free cancer networking
website, to begin friendships (some actually
meeting each other in "real life,"), exchange
treatment information, rally emotional
support, and provide financial relief to
those in need.
In fact, MyCancerPlace the "MySpace for
cancer," has recently hit several impressive
milestones. The site has had over 50,000
visitors from 46 different countries, over
200,000 visits, and over 6 million page views.
"It's a wonderful positive community where
anyone dealing with cancer is invited to
join," explains Michael Horwin, the manager
of Cancer Monthly the organization that
sponsors the site. "The website allows people
to share information and resources which can
be critical when making treatment decisions;
and it gives people the chance to create
friendships and network with others who are
facing the same challenges. You are not alone
anymore. Plus we don't accept advertising so
you are not bombarded with ads."
Unlike the better known MySpace and Facebook,
the members of MyCancerPlace are not just
teenagers or 20 somethings. Members range in
age from teenagers to adults over 70.
"Because cancer strikes anyone of any age, we
had to make sure our site was user friendly
to everyone, regardless of computer
experience. Most of our members are in their
40's to 60's, but we also have many over 70,"
Horwin explained.
Members of MyCancerPlace can do all of the
things that one expects from a site like this
- create a profile, write a blog, upload
pictures, participate in forums and groups,
post events, and invite others to join.
"Thanks to this technology, nobody should
feel they are alone with cancer," Horwin said.
If you are a cancer patient or a loved one of
a cancer patient you are invited to join My
Cancer Place. It's free. Just click
here.
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Your Message Seen by Thousands of Patients & Clinicians
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CancerWire reaches thousands of patients and
clinicians every month who care about alternative
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