| YOUR HEALTH MATTERS |
| Malaria Parasite's Brutal Blood Cell Invasion Finally Caught on Video |
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The Prince Efere Foundation
Improving and Saving Lives through
Education
Understanding and
Preventing HIV/AIDS
Published by the
Prince Efere Foundation © 2003 |
|
1.
Introduction
The word "AIDS" brings horror and fear in many
communities throughout the world as the disease ravages developing countries in
Africa, Asia, and South America. But how much do people know about this terrible
disease? This booklet is not intended for experts, but for ordinary people with
little or no knowledge about HIV/AIDS. It is intended to educate and create
awareness on how to prevent catching the disease. Public health information has
to be presented in simple language (without jargon) for it to be meaningful and
effective. This is exactly what this booklet seeks to achieve.
It could
therefore be used for educating people about these diseases at:
a)
Schools
b) Colleges
c) Work
d) Hospitals and Clinics
e) Towns and
Villages
f) Advice/Counselling Centres
g) Parties and Ceremonies
h)
Religious Occasions etc
You should also use it to educate children,
parents, relatives, friends and everyone who is likely to benefit from it so
that no body dies in ignorance.
2. What is
HIV?
Belonging to a family of viruses
known as Retro-Viruses, HIV stands for Human Immuno-deficiency Virus. This is the virus
(micro-organism) that causes the disease AIDS. The human body has a natural
in-built immune system (the body's defence mechanism) that attacks and kills
germs and viruses when they try to take hold of it. Without this immune system
to protect us, humans could very easily be killed even by the normal
cold.
What the HIV virus does is to gradually damage this all-important
body's immune system so that an infected person is attacked by all sorts of
diseases and illnesses which may eventually kill the person.
These
illnesses are generally known as opportunistic
infections as they take advantage of the opportunity created by the
weakened immune system.
A person who is found to have the virus in his
body is referred to as being HIV positive. The
phrase HIV negative is used if the person is not
infected by the virus.
3. What is
AIDS?
AIDS stands for Acquired
Immune-Deficiency Syndrome. As the virus gradually damages the human body
over a period, a point is reached when the entire immune system collapses,
making the person completely exposed to various opportunistic infections. It is
at this point that a person is said to be suffering from AIDS. It is the
opportunistic infections (as a result of AIDS) that kills the person.
It
is now known that there are some people who are HIV positive, but their
condition will never lead to full blown AIDS. These are known as HIV carriers. This may be because they have an un-usually
strong immune system, or it may be that they are regularly taking HIV treatment
drugs (known as Anti-Retroviral Drugs) so that the disease may never progress to
AIDS. However, these drugs are very expensive so are beyond the reach of many
poor people.
4. Symptoms of
AIDS
You cannot tell who is infected with HIV by just looking
at a person, as it is possible to be infected for many years without knowing his
(or her) HIV positive status. In the meantime, this person could be transmitting
the disease to others. Therefore, a person could be infected for 1 to 10 years
without any symptoms.
However, where there are symptoms (opportunistic
infections), they may include one or more of the following:-
a) Severe
weight loss
b) Persistent cough
c) Patches on the body, face and
mouth
d) Persistent pain in the joints
e) Constant diarrhoea
f)
Tuberculosis
g) Night sweats
h) Constant fatigue
i) Constant fever,
nausea and vomiting
j) Swollen glands
k) Anaemia
l) Mental confusion
and illness
m) Pneumonia; and
n) many other unexplained
illnesses
It is worth pointing out, however, that not every one who has
one or more of these symptoms is suffering from HIV/AIDS. Only an HIV test can
reveal the true state of affairs. In some communities in Africa, HIV/AIDS is now
called the SLIM DISEASE as a result of the severe
weight loss that many infected persons experience. Sadly, there is still no cure for HIV/AIDS.
5. How HIV is Transmitted
The platform for the rapid
spread of HIV is:
a) Poverty
b) Illiteracy
c) Ignorance
d)
Promiscuity
e) Instability, wars and conflicts
f) Easily mobile
population
HIV can only be transmitted by
having direct contact with infected body fluids such as blood, semen (the fluid
that carries the sperm) and vaginal fluids. The virus has also been found in
saliva, tears and faeces.
Thus, these are some of the most common methods
of transmitting HIV.
a) By sexual intercourse - (vaginal, oral or anal
sex)
b) By blood transfusion
c) By sharing syringes and needles
d) By
an infected pregnant woman passing the virus to an unborn child or transmitting
it to the child at birth.
e) By an infected mother breast-feeding a
child
f) By an infected doctor, dentist or nurse to his patient during
treatment.
g) By an infected patient to the doctor, dentist or nurse during
treatment.
h) By human organ or tissue transplantation
i) By sharing
circumcision razors or other instruments if they are contaminated.
6. How HIV is NOT Transmitted
HIV
is not an airborne disease, as the virus is so fragile it cannot live outside
the body fluid environment for more than 2-5 seconds. Therefore, it is not
transmitted in the following ways:
a) By coughing or sneezing
b) By
shaking hands with an infected person
c) By hugging or cuddling an infected
person
d) By sharing cups, plates, spoons or cooking utensils with an
infected person
e) By sharing toilet seats
f) By sharing sofas, benches
and other seats
g) By talking to an infected person
h) By sleeping in the
same room with an infected person
i) By having contact with clothes of an
infected person
j) By swimming in the same pool with an infected person
k)
By mosquitoes or insects
l) By kissing - though HIV has also been found in
saliva, kissing is not a conventional mode of transmission. However, people have
to be careful during kissing if one partner has a deep cut in the mouth, which
could be an entry point of HIV.
7. The
Global Epidemic of HIV/AIDS
HIV/AIDS have become diseases of
global proportions, with huge and disastrous consequences. Since it was first
diagnosed in New York and San Francisco in June 1981, 71
million people have been infected in the world. 29 million people have already
died of AIDS. 42 million people still live with HIV and over 70% of these live
in Africa.
Each day 17,000 people are
infected with HIV worldwide and 15,000 people die
from AIDS. HIV has also created 13 million orphans as their parents died of
AIDS. This orphans figure is expected to rise to 20 million by 2010. You really
do not want to be part of these terrible statistics.
In Nigeria,
about 4 million people are living with HIV and over
1 million children have lost their parents to AIDS.
It is projected that 10 to 15 million people will be infected with HIV in
Nigeria by 2010, a terrible and frightening prospect indeed.
The problem
of HIV/AIDS has become so bad that entire villages have been wiped out by the
disease in some parts of southern and eastern Africa. The disease is killing the
most sexually active in the population to the extent that some African towns and
villages are only left with children and elderly people. This in turn, is
causing famine in some African communities as the children were too young to
learn the farming, fishing and trading skills from their parents before they
became orphans. HIV/AIDS have indeed graduated from been an epidemic to a
pandemic. AIDS has been declared the worst disease that has afflicted humanity
for 600 years, even worse than the Bubonic Plague (the "Black Death") which
killed over 25 million people in Europe in 1665.
8. How to Prevent HIV Infection
As there
is no cure for HIV/AIDS, the best remedy is to make sure that you never catch
the disease at all in the first place.
The following are ways that HIV
infection can be prevented.
a) Education and
Awareness
One of the best ways of preventing HIV is to educate as
many people as possible so that they know about the existence of the disease,
its devastating effects and ways to avoid it. This is where education and
awareness campaigns become extremely important. Therefore, it is everyone's
responsibility to inform their relatives, friends, neighbours and community on
how to prevent the disease.
b) Sexual
Abstinence
As you have seen above, there are many ways to
contracting HIV. However, for sexually transmitted HIV, the surest way of not
being infected is to abstain from sexual intercourse. This is particularly
important for younger teenagers who may not fully appreciate some of the
consequences of sexual intercourse, as they are not yet emotionally and
psychologically ready for sex. Some only have sex for money or as a result of
peer pressure.
c) Avoid Promiscuity
For
those who are already married or have sexual partners, the best way to avoid
sexually transmitted HIV is to be faithful to one partner and avoid promiscuous
behaviour. This is because the more sexual partners you have, the more likely it
is that you will be infected by the virus.
d) Practice Safer Sex
Statistics show that there are
always people who will not abstain from sex and people who will continue to be
promiscuous. For such persons, the best known way to prevent HIV is to use a
condom every single time they have sexual intercourse. Remember that you cannot
tell just by looking at a person whether or not he/she is
infected.
However, it is worth remembering that a condom does not provide
100% protection, as it can break if not used properly. Nevertheless, it is the
best protection available for those who choose to be sexually active. The United
Nations Office "UNAIDS" states that the proper way to use a condom is as
follows:
· Only open the package containing the condom when you are ready
to use it. Otherwise, the condom will dry out. Be careful not to tear or damage
the condom when you open the package. If it does get torn, throw it away and
open a new package.
· Condoms come rolled up into a flat circle. They can
only be unrolled onto an erect penis.
· Before the penis touches the
other person, place the rolled-up condom, right side up, on the end of the
penis.
· Hold the tip of the condom between your thumb and first finger
to squeeze the air out of the tip. This leaves room for the semen to collect
after ejaculation.
· Keep holding the top of the condom with one hand.
With the other hand (or your partner's hand), unroll the condom all the way down
the length of the erect penis to the pubic hair. If the man is uncircumcised, he
should first pull back the foreskin before unrolling the condom.
· Always
put the condom on before entering the partner.
· If the condom is not
lubricated enough for you, you may choose to add a "water-based" lubricant, such
as silicone, glycerine, or K-Y jelly. Even saliva works well for this.
Lubricants made from oil (cooking oil or shortening, mineral or baby oil,
petroleum jellies such as Vaseline, most lotions) should never be used because
they can damage the condom.
· If you feel the condom slipping off during
sex, hold it at the base to keep it in place during the rest of the sexual act.
It would be safest for the man to pull his penis out and put on a new condom,
following all the steps again.
After sex, you need to take the condom off
the right way.
· Right after the ejaculates, while still inside his
partner, he must hold onto the condom at the base, near the pubic hair, to be
sure the condom does not slip off.
· Now, the man must pull out while the
penis is still erect. If you wait too long, the penis will get smaller in size,
and the ejaculate will spill out of the condom.
· When the penis is
completely out, take off the condom and throw it away.
If you are going
to have sex again, use a new condom and start the whole process over
again!
e) Behaviour Change
People have
to have a complete change in sexual behaviour, if they want to be protected from
HIV infection. They cannot afford to continue to behave in the same way and take
unnecessary sexual and health risks.
f) Avoid sharing
syringes and medical needles with others
This applies to everyone,
even with family members.
g) Avoid sharing razor
blades in shaving
Also make sure that scissors or other equipment
used in shaving and hair cutting is sterilized before each use, to avoid
transfer of blood from one person to the other.
h) Blood Screening
Any blood that is to be used for
transfusions must be screened for HIV and other diseases before use. HIV
screening requires special equipment and specifically trained personnel, as
normal screening will not reveal HIV. It is worth mentioning that blood
screening is not 100% accurate.
i) Human Organ and
Tissue Screening
Organ and tissue transplantation may not be a
common practice in developing countries. However, where it is to be, those human
organs or tissues should be screened for HIV and other diseases before use, to
avoid transmission.
j) Effective Treatment of other
STD's
There is a direct corrolation between HIV and other STD
infection. Therefore, preventing the transmission of other STDs is essential for
the prevention of HIV infection. People who are already infected with other
sexually transmitted diseases (STD's) should be treated promptly and properly
and cured of them. The reason this is important, is that sores created by
untreated or improperly treated STD's can be the entry points for
HIV.
STD's are also now known as sexually transmitted infections
(STI's).
k) Avoid Breast Feeding if
infected
The fact that the virus can be transmitted by
breast-feeding means that an infected woman should avoid this mode of feeding a
child.
l) Treatment During Pregnancy
A
pregnant woman who is HIV positive can now reduce the chance of transmitting the
virus to the unborn child by taking certain anti-retroviral drugs on a regular
basis.
m) Prevention during
Circumcision
Razors or other instruments used for circumcision on
one person should never be used on another person under any circumstances, to
avoid possible transmission of HIV.
Female circumcision as a practice
should be completely discouraged as it has no known medical benefit at all. The
reverse is the case.
n) Improvements in Personal
Hygiene
It is widely accepted that people's general health gets
better if they improve their personal hygiene. This is something everyone should
aspire to achieve.
o) Do not Share
Toothbrushes
Do not share with anyone, even if they are relatives
or friends.
9.
Helping those already Infected
Sadly tens of millions of
people are already infected and continue to be infected. Since there is no cure
for HIV/AIDS, prevention has to be the key.
However, for those who are
already infected, the best option is proper management of the disease, so that
they can have a better quality of life and live so much longer, if possible,
contributing to the prevention of the disease. This will require help and
assistance from the entire community, not just relatives and friends. Such
assistance will help infected persons to come to terms with their illness, which
will enable them to change their sexual behaviour in order not to infect
others.
Regular and sensible eating is extremely important for people
already infected with HIV. Eating energy giving foods on a regular basis, is one
of the most important aspects of living with HIV, as the disease reduces the
energy level of the victim. Energy giving food would include: meat, fish, beans,
milk, bread, rice, cereals, potatoes, corn and butter. Also drink a lot of water
and other non-alcoholic drinks on a regular basis.
Do not drink alcoholic drinks at all.
Also, HIV
gradually weakens and destroys the muscles of the infected person. Therefore,
regular exercise is very important so they can build new muscles.
It is
wrong to stigmatise and discriminate against a person because of his HIV
positive status. The danger is that the fear of discrimination may make infected
persons not reveal their HIV positive status and may continue to infect others.
However, deliberately infecting another person with HIV is a criminal offence
which could lead to a long jail sentence.
10. A Stable Community
The best atmosphere for
the effective prevention of HIV/AIDS is a stable community environment, where
there is no war, conflict, fighting and constant fear, all of which contribute
to the rapid spread of HIV/AIDS.
On the other hand, HIV is better
prevented in a loving and caring environment, where the fundamental human rights
of others are respected, even if you disagree with them, so that people attain
freedom from fear, as indicated in the preamble of United Nation's Universal
Declaration of Human Rights. Basically, violence is a product of fear and human
rights abuses.
A loving, caring and accountable community that respects
human rights will be free in their minds and will become much more innovative,
which will lead to better economic and social development of the area.
It
is every single person's responsibility to educate others and prevent HIV/AIDS
in their community, town, village, neighbourhood, family and
work.
Written by:
Dr Prince Efere
Produced and
Printed by: The Prince Efere Foundation, London
This booklet is the
copyright of the Prince Efere Foundation
©2003 |
|
Important Information
This information is
provided by an independent source. Merck & Co., Inc., does not endorse and
is not responsible for the accuracy, content, practices, or standards of any
non-Merck sources.
VOLUME 2 ISSUE 8
April 15, 2005 |
|
Welcome to the Harvard Health Publications
e-Newsletter.
This e-Newsletter is one in a series of monthly e-Newsletters.
Each issue will bring you valuable information on various topics — news you can
use to live a healthier, happier, and more fulfilling life. We hope you enjoy
this and all of the issues to come.
|
|
In this issue:
+ The new dietary dos and
don’ts
+ Testosterone,
prostate cancer, and balding: Is there a link?
+ When a breast cancer expert gets
breast cancer
+ Another
reason to hate Mondays |
|
The new dietary dos and don’ts
Every five years the federal government issues new dietary guidelines that
are supposed to put the country on the road to healthier eating. Apparently
Americans have been taking some wrong turns because two-thirds of us are now
overweight and nearly a third are obese (a body mass index of 30 or
greater).
Weight control and exercise have been mentioned in the guidelines before, but
the new set released in January 2005 puts them front and center where they
belong. They give better advice about grains and cereals: At least three of the
six daily servings are supposed to be whole grains. They also make a stronger
statement about the difference between the “good” and “bad” fats.
The dietary guidelines have trickle-down effects on school lunch and other
government programs, even if many Americans aren’t aware of the particulars. The
new guidelines are especially important because they will be used to update the
familiar Food Guide Pyramid.
Dr. Walter Willett, a member of the Harvard Health Letter’s
editorial board and chair of the Harvard School of Public Health’s nutrition
department, is happy about the emphasis on weight control and the approach to
dietary fats. He says, though, that the carbohydrate recommendations could have
been stronger, noting that they still allow three servings a day of
nutritionally empty refined starches. And Dr. Willett says the recommendation
that we have three servings of fat-free or low-fat dairy products a day is a
mistake — and a big win for the dairy industry: “In reality, large studies have
consistently shown no reduction in fracture risk with high dairy intake, but
many studies have shown a higher risk for prostate cancer.”
Here are some highlights of the guidelines:
Weight management. Prevention is the best policy.
Many of us could avoid weight gain in the first place by shaving 50–100 calories
from our diets. The guidelines note that although the 2,000-calorie-a-day diet
remains the reference diet, it’s not the recommended one. Many Americans should
be eating far fewer calories than that. They say the best way to cut calories is
to reduce the so-called discretionary ones that come from added sugars (in soft
drinks and candy, for example), added fats, and alcohol.
Physical activity. Why do dietary guidelines
include recommendations about physical activity? Because regular physical
activity, as much as anything we eat, is essential to maintaining a healthy body
weight.
Past guidelines have said that 30 minutes of exercise a day will reduce
chronic disease risk and have other health benefits. The new ones say that most
of us need an additional 30 minutes of moderate-to-vigorous physical activity to
avoid gaining weight.
An hour of exercise a day — that sets the bar pretty high. But you don’t have
to work out in a gym: Examples of moderate-level physical activity include
gardening, dancing, and walking at a 3 1/2-mile-per-hour pace. And short,
10-minute bouts of activity have benefits similar to longer stretches so long as
you reach the same daily total. So give yourself credit for the brisk walk from
where you parked your car and similar activities.
Dietary fat. Most of the fat you eat should be the
“good” polyunsaturated and monounsaturated fats found in fish, nuts, and
vegetable oils (corn, olive, soybean, etc.). Less than 10% of your daily
calories should come from saturated fat, found primarily in meat and dairy
products.
For the first time, the guidelines take a strong stand against the trans fats
created by partially hydrogenating vegetable oils, saying you should eat as
little trans fat as possible. Some experts were hoping they’d set a definite
daily limit (1–2 grams), but Dr. Willett says the guidelines got it right. Trans
fats are used to make baked goods and snack foods so they stay fresh longer.
Other major sources include French fries and many stick margarines.
Carbohydrates. Fruit, vegetables, all grain-based
foods, dairy products — they all contain carbohydrates, which in the good old
days we called sugars and starch. The trick isn’t to boycott carbohydrates, but
to make sure they arrive on our plates in packages — such as whole grains and in
fruits and vegetables.
The guidelines aren’t very bold on the extra, empty carbohydrates from added
sugars (the “more research is needed” refrain is sounded). The advice is to
limit intake as part of the general limit on discretionary calories.
Potassium. Potassium offsets sodium’s effect on
blood pressure and has other health benefits. Your daily diet should include
4,700 milligrams of the mineral. Potassium-rich foods include bananas, leafy
green vegetables, and potatoes. Meat, milk, and some cereal products contain
potassium but in a form that is difficult to absorb.
Fruit and vegetables. One of the first principles
of healthy eating is to choose nutrient-dense foods that pack,
calorie-for-calorie, the most amount of fiber, vitamins, and other nutrients.
That’s why the guidelines say that the 2,000-calorie-a-day reference diet should
include nine (!) servings of fruit and vegetables. For the average American,
that’s over double the usual number of servings.
Dairy. At least the guidelines recommend the
fat-free and low-fat dairy products, so people aren’t misled into eating
cholesterol-boosting saturated fat. Dr. Willett notes, though, that dairy
products are fairly high in calories. Three glasses of low-fat milk contain over
300 calories that the American diet doesn’t need.
Although the guidelines are written mainly for nutrition experts, they aren’t
hard to understand. You can read the full, 84-page document at www.healthierus.gov/dietaryguidelines.
All rights reserved.
Harvard Health Letter
www.health.harvard.edu/health
Volume
30 - Number 05 - March 2005
|
Correction: An alert reader spotted an
error in our March 2005 issue. The correct formula for estimating a man’s daily
protein requirement is 0.36 grams of protein per pound of body weight. That’s 54
grams for a 150-pound man, or about 2 ounces. We regret any confusion we may
have caused, and appreciate having the error called to our attention.
Testosterone, prostate cancer, and balding: Is there a link?
We can thank the Greeks for the name doctors apply to male hormones.
Androgen comes from the words meaning “man-maker,” and it’s a
well-chosen term. Testosterone is the most potent androgen, and it does make the
man. It’s responsible for the deep voice, increased muscle mass, and strong
bones that characterize the gender, and it also stimulates the production of red
blood cells by the bone marrow. In addition, testosterone has crucial, if
incompletely understood, effects on male behavior. It contributes to aggression,
and it’s essential for the libido or sex drive, as well as for normal erections
and sexual performance. Testosterone stimulates the growth of the genitals at
puberty, and it is one of the factors required for sperm production throughout
adult life. Finally, testosterone also acts on the liver. Normal amounts are
harmless, but high doses can cause liver disease and boost the production of LDL
(“bad”) cholesterol while lowering the amount of HDL (“good”) cholesterol.
Although testosterone acts directly on many tissues, some of its least
desirable effects do not occur until it is converted into another androgen,
dihydrotestosterone (DHT). DHT acts on the skin, sometimes producing
acne, and on the hair follicles, putting hair on the chest but often taking it
off the scalp. Male-pattern baldness (androgenic alopecia) is one
thing, prostate disease quite another — but DHT also stimulates the growth of
prostate cells, producing normal growth in adolescence but contributing to
benign prostatic hyperplasia (BPH) in many older men.
Scientists have taken advantage of the link between male pattern baldness and
BPH to develop a single medication for both conditions. Finasteride
blocks the conversion of testosterone to DHT; when taken in a 5-mg dose
(Proscar), it helps some men with BPH, and in a 1-mg dose (Propecia), it helps
some men with androgenic alopecia. A newer drug, dutasteride (Avodart),
has a similar effect on BPH but is not yet approved for baldness.
Is there another dark side to the DHT connection? Since DHT drives both hair
loss and the growth of prostate cells, do men with androgenic alopecia have an
increased risk for prostate cancer? Perhaps, according to scientists in
Australia. They evaluated 1,446 men who were diagnosed with moderate to
high-grade prostate cancer before age 70 and compared them with 1,390 men of the
same age who were free of the disease. Even in the era of molecular biology, the
research tool was simplicity itself. The researchers looked at each man’s scalp,
then used sophisticated statistical methods to see if there was a link between
hair loss and prostate cancer. They found that men with bald spots at the top of
their heads (vertex baldness) were one-and-a-half times more likely to
have prostate cancer than those without bald spots. The association was
particularly strong for men who were diagnosed with high-grade prostate cancer
at 60–69 years of age. In contrast, there was no link between a receding
hairline (frontal baldness) and cancer.
Levels of baldness
- Frontal recession
- Bald at the vertex
- Near-total baldness
|
Although it may seem far-fetched if not hair-brained, there are precedents
for an association between vertex baldness and disease in men. Harvard’s
Physicians’ Health Study found that men with bald spots were more likely to
develop coronary artery disease than men with full heads of hair. Mild vertex
baldness was linked to a 23% increase, moderate baldness to a 32% rise, and
severe baldness to a 36% increase in risk. As in the Australian study of
prostate cancer, frontal baldness was not associated with risk.
Although testosterone and DHT are the leading suspects, doctors don’t know
what accounts for the apparent associations between vertex baldness and prostate
cancer and heart disease. Although explanations are on the thin side, there is
no reason to think that hair loss itself is harmful to the prostate or heart —
though it may take a toll on some men’s self-image. More research is needed to
explore the connection between hair loss and disease in men — but whatever the
results, men who want to know their risk for illness will never have the luxury
of replacing blood tests with a peek in the mirror.
All rights reserved.
Harvard Men’s Health Watch
www.health.harvard.edu/men
Volume
9 - Number 02 - September 2004
|
When a breast cancer expert gets breast cancer
An interview with Harvard breast cancer surgeon Dr. Carolyn
Kaelin
Breast cancer is unique for every woman who experiences it. But every
survivor’s story offers hard-won knowledge that may help others grappling with a
breast cancer diagnosis, treatment, and recovery.
Harvard Medical School’s Carolyn Kaelin, M.D., M.P.H., is a breast cancer
surgeon and director of the Brigham and Women’s Hospital Comprehensive Breast
Health Center in Boston. A wife and mother of two children, Dr. Kaelin was
diagnosed with breast cancer in July 2003 at age 42. Below, she shares her
unique perspective as both breast cancer expert and patient.
How did you find your breast cancer?
After cycling one Sunday, I removed my jersey and noticed a very tiny change
in my breast, where the skin pulled inward ever so slightly. At first, I thought
it was just a warp in the mirror, but no matter where I moved, it was still
there. I absolutely could not feel anything. I had a history of harmless breast
cysts, so I thought it might be a little cyst pulling on one of the supporting
ligaments between the skin and the chest wall.
On Monday, I was scheduled to perform several surgeries. Between procedures,
I went to our radiology department for a mammogram. Although the mammogram
looked completely normal, they did an ultrasound — standard procedure if a lump
or other change in the breast is found during a physical exam. During the
ultrasound, I noticed many, many cysts in my breast. After a bit, I saw the
expression on my colleague’s face change. Clearly, she was seeing something that
looked different from all the other cysts.
Later that day, I had a core needle biopsy, and the next day, the chief of
breast pathology came to my office with slides in her hand to tell me that I had
breast cancer.
What went through your head at the time?
Initially, denial. I thought, “No, this couldn’t possibly be breast cancer.
I’ll go for breast imaging tomorrow and find out it’s a cyst.”
The most difficult time was between my diagnosis and learning the full extent
of the disease, which was far greater than anyone anticipated. I had three
breast-conserving surgeries as we tried to get clean margins. Every result that
came back caught us off guard and spun us around. One cancer became three
cancers. What had seemed to be a small cancer extended to over half of the
affected breast. Breast-conserving lumpectomy evolved into a mastectomy. And
hormonal treatment with tamoxifen changed to chemotherapy and tamoxifen.
Once I knew that I would need a mastectomy and chemotherapy, I wasn’t happy.
But having that knowledge shifted my mental framework dramatically, just on a
dime. I knew I’d just roll up my sleeves, march ahead, and do it.
Some question the value of breast self-exams, which haven’t been
shown to lengthen survival time in women with breast cancer. What’s your
view?
Possibly the right research study has yet to be done: 10%–15% of breast
cancers elude mammography and are found through exams by women or their
clinicians. Generally, I recommend breast self-exams along with mammography and
clinical breast exams, which have been shown to make a difference to survival,
especially in women over 50. Women under 40, of course, do not have annual
mammograms unless they have a family history of breast cancer, so a self-exam
can find a cancer that would otherwise go undetected. I also have cared for
patients who noticed a suspicious change that appeared between mammograms.
Most of the breast changes that women notice don’t turn out to be cancer, but
among those that do, a lump or thickening is a common sign. Less common is a
dimpled spot where the skin pulls in, or a persistent reddened spot on the skin.
Other possible signs are changes in the nipple, such as a newly inverted nipple,
scaliness, or discharge.
To make informed treatment choices, a woman needs to know the full
extent of the disease. What can she do during the diagnostic phase?
I think it’s a good idea to gather second opinions, particularly on the
pathology and breast imaging, which can change the course of treatment. Have the
pathology slides reviewed by somebody who specializes in breast pathology at the
hospital where you’re being treated. Or the slides can be sent to another
hospital to be evaluated. Subtle — and not so subtle — interpretations of the
slides by an experienced eye may affect treatment. For example, is another
surgery needed to clean up margins? Should chemotherapy be part of
treatment?
Pathology information usually appears in several reports as different
procedures are done. Typically, if you saw a breast surgeon for the initial
biopsy, she would go over the report with you. A radiologist who performs a core
needle biopsy may discuss the results with you or may send them to your ob-gyn
or internist, depending on what you and your doctors prefer. You should feel
free to request a copy of the pathology reports and any other part of your
medical records.
Strongly consider having a radiologist who specializes in breast imaging look
at the imaging studies — someone with a fresh set of eyes who looks at
mammograms, breast ultrasounds, and breast MRIs every single day. Not
infrequently, everybody is so focused on the obvious cancer that a tiny cancer
elsewhere in that breast or on the other side is overlooked.
Breast cancer care involves a lot of specialists. How do you find the
right ones for you?
It helps to speak with others who have gone through this to see if certain
names come up over and over again. Other good sources of referrals are your
primary care physician, breast imager, and breast surgeon. A cancer center or
academic hospital affiliated with a medical school is an excellent place to
check. Some hospitals have multidisciplinary teams — radiologists, surgeons,
medical and radiation oncologists, pathologists, and possibly plastic surgeons —
who work with you from diagnosis through treatment and recovery.
Breast cancer isn’t like appendicitis: You get your appendix out, have one
postoperative check with your surgeon, and never see her again. With breast
cancer, the members of your team are members for life. They see you year after
year for checkups. Even if you’re discharged to the care of your primary care
physician, you’ll return to see them if something arises in the future. You want
people you can trust and talk to and who listen. You should be confident that
they keep up with the ever-evolving scientific literature on breast cancer and
will take time to discuss how it applies to your situation.
It’s a good idea to meet with several doctors. Even among a group of
outstanding physicians, some may be better matches for you than others.
Fortunately, while you may feel as if all of your treatment urgently needs to be
completed, most breast cancers are very slow-growing. You have time to seek
multiple opinions and assemble a team of clinicians that you feel comfortable
with before moving ahead.
Cancer centers offer a comprehensive approach to breast cancer,
access to skilled professionals, and possibly the latest treatments. But a local
hospital may be more convenient. Is there a way to balance this?
Sometimes it’s not practical to have all your care at a cancer center. But
during certain windows, it may be worth traveling a considerable distance to
obtain a second opinion. One such window is immediately after the initial
diagnosis: It’s important to have a trained set of pathology eyes and
breast-imaging eyes look at all the data — and to have a comprehensive treatment
team evaluate your situation and make recommendations. There may also be
clinical trials that apply to your situation.
A second window is after you know the full extent of the tumor and your lymph
node status. At that point, a second opinion can help you decide which oncology
treatment options are right for you. Again, are you a candidate for any specific
clinical trials?
Sometimes recommendations from outside experts differ from those of the local
hospital; sometimes they’re the same. Either way, the plan may be able to be
implemented at the local hospital.
Who coordinates all the information and keeps the files?
Every doctor you see will keep a file recording your visits and medical
information, but the physician leading the case often changes as you go along.
For example, a breast surgeon might refer you to a medical oncologist to discuss
neoadjuvant therapy — that is, chemotherapy to shrink the tumor before surgery.
If that’s appropriate in your case, the medical oncologist will coordinate your
initial care; if not, your breast surgeon will. You can sign a form allowing
your records to be copied and released when a new physician needs to see them.
Some of my patients keep copies of all their medical records in a binder.
What else should a woman think about as she begins
treatment?
Topping the list are things you can control that might affect longevity.
Research suggests that women who gain more than 13 pounds during chemotherapy
may not live as long as those who are able to maintain their weight. Make
nutritious, balanced food choices. Clear out less healthful foods and stock up
on healthier items.
Chemotherapy can make the ovaries peter out temporarily or permanently. Women
who go through a premature menopause during chemotherapy have an increased risk
of bone loss in the hips and spine. Daily calcium supplements paired with
vitamin D can help keep bones strong, although sometimes medication is
necessary.
Physical activity and exercise can help offset both weight gain and bone
loss. Ideally, maintain your current exercise program, or commit yourself to
starting one as soon as possible. Some days, fatigue may keep you glued to the
couch. Just try to be active whenever you can and build up your routine on days
when you feel better.
If you’ve had surgery involving the underarm lymph nodes, a mastectomy, or
reconstructive surgery, regaining full range of motion in your shoulder should
be one of your recovery goals. Otherwise, you may find it hard to reach up, for
example, to get something on a top shelf or to close a car trunk — anything
requiring the outward extension of your affected arm. You can begin a program of
progressive stretches recommended by your surgeon when you are told it’s safe to
start range-of-motion exercises.
You knew a great deal about breast cancer before you were diagnosed.
What about your own situation surprised you most?
Well, it surprised me that I had breast cancer. I eat well, I exercise, and,
for most of my life, I’ve maintained a healthy weight. I did not have any
notable family history or risk factors. And I think by being in the field and
caring for women with breast cancer, maybe deep down I hoped that this would
confer some kind of protection. So I was pretty floored when it became clear
that breast cancer was going to be part of my personal life.
A week after chemotherapy began, I asked my oncologist whether I was having
some kind of reaction. My mouth tasted like I was chewing on tinfoil. If I ate
constantly, the taste would settle down, but within a minute of not having
something in my mouth, it would be right there again. He reassured me that this
is a common side effect of chemotherapy. With each cycle it started sooner and
lasted longer. I found that sugarless gum, sugarless candy, and spicy foods
helped. It was a joy when my taste buds came back.
During chemotherapy, I expected to feel a little pooped or to have to go to
bed an hour earlier. I didn’t expect to feel so fatigued that I simply didn’t
have the energy to participate in many parts of my life. During my five-year
surgical residency, there were times when I was on call every other night, so I
was used to being able to function well despite chronic low-grade sleep
deprivation. In contrast, my fatigue during chemotherapy just leveled me. Even
after sleeping for 14 hours straight and sleeping deeply, I would wake up
feeling fuzzy-headed, lethargic, and not refreshed. With each cycle, it got
worse. It took months before I started feeling like myself and didn’t need to
sleep for long periods at night and take naps every day.
Finally, it was a surprise to have my hair, which had always been as straight
as can be, grow back curly after chemotherapy, looking like Little Orphan
Annie!
Dr. Kaelin is the author of Living Through Breast Cancer: What a
Harvard Doctor and Survivor Wants You to Know About Getting the Best Care While
Preserving Your Self-Image, with Francesca Coltrera (McGraw-Hill, 2005). She
has also produced a DVD, “Breast Cancer Survivor’s Guide to Fitness,” with Josie
Gardiner and Joy Prouty.
All rights reserved.
Harvard Women’s Health Watch
www.health.harvard.edu/women
Volume
12 - Number 08 - April 2004
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