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May 11, 2022

Eye on Health: Breast Cancer Prevention for the I/DD Community

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 Women's Health issues. Medical concept with Venus sign and stethoscope on pink background top-down

May is Women's Health Month

By Dr. Cindy Ripsin

People in our I/DD community have higher rates of many kinds of preventable or curable conditions because we often do not take screenings in this population as seriously as we should. On the other hand, blindly screening everyone without considering individual circumstances can also cause harm.

Facts about breast cancer:

  • Breast cancer is the second most common cancer in women.
  • Although White women and Black women have similar rates of breast cancer, Black women die of breast cancer at a much higher rate than all other women.
  • Like most cancers, older women have higher rates of breast cancer than younger women.
  • Women who have a mother or sister (first-degree relative) who have had breast cancer or ovarian cancer have a higher risk of having breast cancer BUT most cases of breast cancer are found in women who have no family members with breast cancer.
  • The earlier we detect breast cancer, the higher the chance of a cure.
  • Breast self-exam, and even breast exams done by physicians, are not sensitive enough to detect early breast cancer.
  • The best way to detect early breast cancer is a mammogram.

When should screening mammograms be done?

We used to perform mammograms on all women every year from age 40 years and older, but we learned that is often not necessary, and performing unnecessary mammograms can cause more harm than good. The mammogram itself is safe. However, especially in young women without a high risk of breast cancer, mammograms often detect lumps that are eventually found to be benign (not cancerous), but the biopsies done can scar the breast. This, combined with the worry it causes to go through that process, has been found to be more harmful than beneficial. Therefore, the US Preventive Services Task Force provides these recommendations:

  • If a first-degree relative has had breast or ovarian cancer there are genetic tests that can help determine risk. For people who have a gene (BRCA genes) that increases the risk of breast cancer the types and timing of breast screenings are different than those who do not have the gene, so it is important to work closely with your loved one’s primary care provider if they are in this risk category.
  • For women at average risk of breast cancer (no BRCA gene and no first degree relative with breast or ovarian cancer):
    • Age 40-49: There is no compelling evidence that yearly or even every other year mammograms are more helpful than harmful. Talk with your loved one’s primary care provider about the risks and benefits of mammograms for this age group AND what factors can increase the risk of having breast cancer. Once the individual risks are considered, this can help determine when and how often mammograms are needed.
    • These additional risks include:
      • Starting periods before age 12 and/or having periods after age 50.
      • Dense breasts: having dense breasts does not increase the risk of getting cancer, but it can make tiny cancers harder to see on the mammogram
      • Taking certain hormone replacement therapy (estrogen plus progesterone) for more than five years after menopause
      • Never being pregnant or having a first pregnancy when 30 or older.
      • Obesity
      • Lack of physical activity
      • Smoking
      • Excess beer, wine, or alcohol use
    • Age 50-74: a mammogram every two years is the recommendation of the Task Force.

How can a mammogram be less uncomfortable for our loved ones with I/DD?

If you have had a mammogram, you know the positioning and repositioning and squeezing can be uncomfortable if not downright painful! But it is usually finished pretty quickly, and the brief discomfort is outweighed by getting a normal result, or, if abnormal, getting a plan for managing it. For someone with a limited understanding of why this is being done, it can be a threatening exam. Here are a few tips:

  • As above, have a thorough conversation with your loved ones’ primary care provider to determine as close as possible her risk for breast cancer which will help determine when to begin mammograms and how often they should occur. There is no benefit to having mammograms done more often than necessary.
  • If you believe it will benefit your loved one for you to be present as the mammogram is taking place (and often this is the case) call ahead to assure this can happen. If you are told you cannot be present, talk with your primary care provider so they can advocate for this and/or find a place that will accommodate this request.
  • As you know already, creating a social story around what will happen in the mammography suite will be helpful.
  • Avoid scheduling the mammogram the week before and the week of the menstrual period. This is the time when the breasts are most tender and often swollen.
  • Schedule in the morning. Late day appointments for new or scary procedures are even more stressful because we come to the appointment carrying all the stress of the day.
  • Dress warmly to the appointment. Disrobing is necessary for the mammogram, but if we arrive already feeling cold from waiting in a chilly waiting room, we are even colder when we disrobe and this increases anxiety.

To learn more about breast cancer by visiting the CDC's page on breast cancer statistics.


Dr. Cindy Ripsin is a board-certified family physician with over twenty years of experience caring for patients of all ages. She is the medical director for Boundless Health. 

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