"I thought breast health was important to all women, no matter what their age, race, breast size, and ability. Yet all the information pamphlets I've read don't say anything about women who have difficulty doing their own breast self examinations. I feel invisible."

"I know it's important to try to examine your breasts regularly if you can do it on your own. But I'm really not sure what I'm looking for. What does a lump feel like? What if I find something?"

"I am a small-breasted woman who uses a wheelchair. I don't think they would be able to get enough breast tissue on the tray to get a good mammogram. But I don't know an alternative."

What this booklet is about

This booklet may help you separate fact from fiction and take better control of your own body and your health. For example, can women with disabilities protect themselves from breast cancer through regular breast self-examinations? Do regular self-examinations increase your chances of surviving breast cancer?

The risk of breast cancer for women with disabilities is just as great as it is for non-disabled women. The challenges we face for detecting, controlling, and treating it are often greater than those of non-disabled women. We often need to overcome the view of health professionals who assume our medical problems relate only to our disability. Breast cancer is not supposed to concern us. In the face of such attitudes, we certainly need to educate ourselves.

The Facts about Breast Cancer

During the last few years we have read and heard a lot about breast cancer. The facts are scary:

• breast cancer is the leading cause of premature cancer death in Canadian women aged 35 to 55
  
  
• 1 in 9 Canadian women are expected to develop breast cancer
  
  
• 1 in 25 women will die from breast cancer.

Studies show you are at increased risk of breast cancer if:

• you are over the age of 50
  
  
• you have already had breast cancer
  
  
• you have had ovarian cancer
  
  
• you have been exposed to radiation. For example, you may have had many X-rays to monitor scoliosis, or radiation for an enlarged thymus, or for Hodgkin's Disease
  
  
• your mother, sister or daughter has had breast or ovarian cancer before menopause
  
  
• two or more relatives, such as your aunt or grandmother, had breast cancer after
  menopause
  
  
• your breast density, as shown on a mammogram, is 75% or greater
  
  
• you never had a child
  
  
• you were over 30 when you had your first child
  
  
• your periods began before the age of twelve, or you began menopause after the age of fifty.

However, almost 80% of breast cancer occurs in women over 50, so your risk of breast
cancer rises as you age. Seventy percent of the women diagnosed have none of the above risk factors except age.

Why Practice Breast Self Examination?

Breast self-examinations (BSEs) are a simple, private, quick way of taking control over your own breast health. The more familiar you are with your breasts, the more likely you will notice when something has changed. You will learn what is normal for you, and may need to rely less on medical procedures such as biopsies or ultrasound. A biopsy is a procedure which removes a lump or part of a lump to find out whether it is serious or not. An ultrasound is a test to look at the inside of your breast.

Breast examinations are more critical for women with disabilities who may not be able to
get a mammogram for a variety of reasons. If you have severe muscle spasms or chronic
pain, you may be unable to benefit from a mammogram regardless of your age.

Reasons Why We Don't Do Breast Self-Examination

According to recent research, 70% of women do not practise BSE regularly.

Here are some reasons why:

• BSEs may be physically difficult for you, depending upon your disability.
  
  
• You may think, "It will never happen to me," "Enough has happened to me already, I couldn't have cancer too," "If I look for a lump, I will cause one to form."
  
  
• You may feel uncomfortable touching your breasts or having someone else touch your breasts.
  
  
• Your mammogram was negative, so you feel safe.
  
  
• You may feel the odds are already out of your control. "What's the use?"
  
  
• You may feel BSE is unpleasant, because you're checking your very own body for something dangerous.
  
  
• You may not even want to know if a tumour is growing inside you.
  
  
• Because of your disability you may be checked by health professionals more than many other women and may resent having to pay attention to "one more thing." As women with disabilities, we need to discuss these reasons in order to become more comfortable with the concept of regular BSEs.

To Treat Cancer you must First Find it

If breast tumours caused symptoms early in their growth, they would be easier to detect. But tumours can grow for years without symptoms. Mammograms, breast self-
examinations and clinical breast examinations (examinations done by a health
professional) are three ways to detect a tumour.

If you are over 50 or at high risk, doctors recommend regular mammograms. A
mammogram is a special X-ray that can detect lumps too small to notice by hand. Many of the mammography machines and examination tables used for the Ontario Breast Screening Program can be adjusted for wheelchair users, short women, and women with mobility problems.

You should call the Breast Screening Program in your area in advance to find out whether they have this equipment, should you need it. It is also a very good idea to call the Clinic in advance to ask for a longer appointment. If you are younger than 50 or not what is considered at "high risk", you will be referred to a hospital or lab rather than the Ontario Breast Screening Program. At a hospital, it is less likely the machine or examining table will be adjustable.

The younger you are, the denser your breast tissue is. This makes it more difficult for a
mammogram to detect a tumour. This is why some health professionals stress the
importance of regular BSEs for women under 50 and for women who are not at high risk.

By examining your own breasts, you may notice changes that may indicate the presence of a lump. It only takes a minute or two every month. Once a month, examine your breasts before you go to sleep or just as you're waking up. If you are of menstruating age, how thick (or dense) the tissue of your breast is may change throughout your cycle, so we suggest doing BSE just after your period ends each month.

1. Stand or sit in front of a mirror. Look for rashes or wrinkling changes in the colour, shape or texture of your breasts and nipples, or discharge from the nipples. For women who are blind or have low vision, you may rely more on changes to the shape or texture. A small lump feels like a pea.
   
   
2. Now lie down with a pillow under your left shoulder and place your left hand under your head with your elbow lying flat. By lying flat or in a semi-prone position, you are best able to feel the lower part of your breast, behind your nipple, and near your armpits. For some of us, this may be difficult to do because of limited upper arm mobility, pain or difficulty lying flat. Try to select a comfortable position. It is possible to do the examination in a semi-sitting position, with pillows behind you.
   
   
3. Hold together the fingers of your right hand. Feel your left breast by moving your hand in small circles or with a slight back-and-forth motion over a small area. Do this all the way from the nipple to under the arm.
   
   
4. Switch over and repeat the examination for your right breast. Lumpy breasts are healthy and normal Lumpy breasts do not lead to cancer. Many women have "lumpy" breasts naturally, and this is not connected to a higher risk of cancer. For women who menstruate, these lumps may change shape or texture throughout your cycle. Some women bothered by lumpy breasts are able to reduce lumpiness by cutting back on caffeine or cutting back on fat in their diets.
   
   These things don't work for everyone, but may help. You may have a growth which is full of fluid. These are cysts, and they are not cancerous. You may get cysts, especially in the last two weeks of your cycle or as you approach menopause. They can be treated by a medical procedure: a doctor draws the fluid out using a needle, until the cyst collapses. It is not necessary to have this done, but check with your doctor.

If you become familiar with certain lumps in your breasts each month, and you notice no
changes, there's little room for concern.Cancerous lumps are usually hard and fixed. If
you find a hard lump that doesn't move around, see your doctor. However, keep in mind
that 8 of 10breast lumps are discovered to be harmless when doctors check them.

The important thing is to get to know your breasts. Breat cancer does not alays show up as a lump. It may show up as a rash, discharge from the nipple, or as puckering. You are looking for any unusual change.

Other Alternatives to BSE

If you have limited arm and hand moment, or limited sensation in your fingers, you may need someone to help you examine your breasts. Make sure it's someone with whom you feel safe and comfortable. Since you want to notice changes, it's best to have the same person do it every time. This could be your partner, attendant or friend. Ask this person to describe what they are noticing as they go through the process and to write it down.

If you don't feel comfortable with anyone else, we recommend you ask your doctor to do
it at least once a year. Take full control of the situation and the procedure. This is your
body!

For Information or support

Talk to your doctor and get the information you need, and contact:

Toll free: 1-888-778-3100
Within Toronto: 416-778-5000
Website: www.willow.org

Ontario Breast Screening Program
Toll free: 1-800-668-9304

DisAbled Women's Network Ontario
About Mammograms: A Women's Guide
E-mail: dawn@thot.net

Here is a link to the BHAWD website at at http://www.bhawd.org
BHAWD: Breast Health Access for Women with Disabilities
The idea for BHAWD began with Judi Rogers, a breast cancer survivor and ambulatory woman with cerebral palsy.

Produced by DAWN Ontario
Researched and authored by Beth Mairs.

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