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U.N.: HIV Infections Hit Record High in '03

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AIDS: Africa on Death Watch

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Tuberculosis: Understand It

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.


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 ó 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 doníts
+ 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 doníts

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 ďgoodĒ and ďbadĒ fats.

The dietary guidelines have trickle-down effects on school lunch and other government programs, even if many Americans arenít 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 Letterís editorial board and chair of the Harvard School of Public Healthís 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 ó and a big win for the dairy industry: ďIn 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.Ē

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 50Ė100 calories from our diets. The guidelines note that although the 2,000-calorie-a-day diet remains the reference diet, itís 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 ó that sets the bar pretty high. But you donít 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 ďgoodĒ 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 theyíd set a definite daily limit (1Ė2 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 ó they all contain carbohydrates, which in the good old days we called sugars and starch. The trick isnít to boycott carbohydrates, but to make sure they arrive on our plates in packages ó such as whole grains and in fruits and vegetables.

The guidelines arenít very bold on the extra, empty carbohydrates from added sugars (the ďmore research is neededĒ refrain is sounded). The advice is to limit intake as part of the general limit on discretionary calories.

Potassium. Potassium offsets sodiumís 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. Thatís 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, thatís over double the usual number of servings.

Dairy. At least the guidelines recommend the fat-free and low-fat dairy products, so people arenít 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 doesnít need.

Although the guidelines are written mainly for nutrition experts, they arenít hard to understand. You can read the full, 84-page document at www.healthierus.gov/dietaryguidelines.

All rights reserved.
Harvard Health Letter
Volume 30 - Number 05 - March 2005

Correction: An alert reader spotted an error in our March 2005 issue. The correct formula for estimating a manís daily protein requirement is 0.36 grams of protein per pound of body weight. Thatís 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 ďman-maker,Ē and itís a well-chosen term. Testosterone is the most potent androgen, and it does make the man. Itís 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 itís 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 (ďbadĒ) cholesterol while lowering the amount of HDL (ďgoodĒ) 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 ó 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 manís 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 60Ė69 years of age. In contrast, there was no link between a receding hairline (frontal baldness) and cancer.

Levels of baldness

  1. Frontal recession
  2. Bald at the vertex
  3. 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. Harvardís Physiciansí 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 donít 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 ó though it may take a toll on some menís self-image. More research is needed to explore the connection between hair loss and disease in men ó 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 Menís Health Watch
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 survivorís story offers hard-won knowledge that may help others grappling with a breast cancer diagnosis, treatment, and recovery.

Harvard Medical Schoolís Carolyn Kaelin, M.D., M.P.H., is a breast cancer surgeon and director of the Brigham and Womenís 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 ó 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 colleagueís 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, ďNo, this couldnít possibly be breast cancer. Iíll go for breast imaging tomorrow and find out itís a cyst.Ē

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 wasnít happy. But having that knowledge shifted my mental framework dramatically, just on a dime. I knew Iíd just roll up my sleeves, march ahead, and do it.

Some question the value of breast self-exams, which havenít been shown to lengthen survival time in women with breast cancer. Whatís your view?

Possibly the right research study has yet to be done: 10%Ė15% 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 donít 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 itís 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 youíre being treated. Or the slides can be sent to another hospital to be evaluated. Subtle ó and not so subtle ó 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 ó 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 ó radiologists, surgeons, medical and radiation oncologists, pathologists, and possibly plastic surgeons ó who work with you from diagnosis through treatment and recovery.

Breast cancer isnít 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 youíre discharged to the care of your primary care physician, youíll 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.

Itís 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 itís 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: Itís important to have a trained set of pathology eyes and breast-imaging eyes look at all the data ó 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 theyíre 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 ó that is, chemotherapy to shrink the tumor before surgery. If thatís 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 youíve 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 ó 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 itís 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, Iíve 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 didnít expect to feel so fatigued that I simply didnít 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 didnít 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, ďBreast Cancer Survivorís Guide to Fitness,Ē with Josie Gardiner and Joy Prouty.

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Harvard Womenís Health Watch
Volume 12 - Number 08 - April 2004

Harvard Health Publications eNewsletter is published monthly by the Harvard Health Publications division of the Harvard Medical School. Copyright © 2005 by the President and Fellows of Harvard College. All rights reserved.

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