Study: Diagnosis and treatment delays in young women with breast cancer


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Young women who find a breast lump and young women newly-diagnosed with breast cancer

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Checked People with a genetic mutation linked to cancer risk

Checked Previvors

Checked Women under 45

Checked Special populations: Women who are pregnant or breast feeding


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Young women are more likely to have delays in a breast cancer diagnosis and treatment.  Factors that affect these delays include pregnancy, breastfeeding, financial concerns and having a family history of breast or ovarian cancer. (8/5/19)

Contents

At a glance                  Questions for your doctor
Findings               In-depth                
Clinical trials Limitations
Guidelines Resources and references


STUDY AT A GLANCE

This study is about:

Understanding why young women face delays in diagnosis and treatment of breast cancer.

Why is this study important?

Because most young women do not routinely have breast cancer screening, they are more likely to experience delays in diagnosis and treatment.

Study findings: 

The Young Women’s Breast Cancer Study enrolled women age 40 or under who were newly diagnosed with breast cancer. The women were asked to report their age, race, marital status, family and reproductive histories, how and when their breast cancer was detected, and time to treatment.  Researchers used medical records to confirm disease and treatment information.

  • Most women (74%) said that they found their breast cancers.
  • Most women (83%) did not report a delay from the time they found a symptom (e.g., feeling a lump) to when they saw a health care provider.  
    • Women were more likely to delay seeing a health care provider if they:
      • were pregnant at the time of diagnosis.
      • had concerns about the cost of care.
    • Most women (87%) did not report a delay from the time they saw a health care provider to the time they received a diagnosis of breast cancer.
      • Women were more likely to have a delay in diagnosis if they:
        • were breast feeding.
        • had a family history of breast or ovarian cancer.
  • Most women did not have a delay in treatment once they were diagnosed with cancer. 
    • Women who had a delay in treatment were more likely to be:
      • single
      • non-white
      • have stage 0 breast cancer

What does this mean for me?

If you have symptoms or found a lump

It is important to make an appointment with your health care provider if you have any of the signs or symptoms associated with breast cancer because delayed diagnosis or treatment may affect your outcome. In this study, women who breastfed were more likely to experience delayed care, possibly because nursing leads to changes in the breasts, which may hide breast cancer signs and symptoms.

If you have concerns about the cost of care

If financial concerns keep you from seeking care, several resources can help. If you are uninsured or underinsured, numerous organizations can help you get the care you need.

  • Susan G. Komen is a national nonprofit organization focused on breast cancer. Komen’s Treatment Assistance Program offers financial support to people who have been diagnosed with breast cancer.
     
  • The Patient Advocate Foundation is a national nonprofit organization that helps people access health insurance to pay for their treatment.
     
  • The U.S. Centers for Disease Control and Prevention (CDC) runs the National Breast and Cervical Cancer Early Detection Program. The program provides breast and cervical cancer screening and diagnostic services for low-income, uninsured, and underserved women in all 50 states, the District of Columbia, six U.S. territories, and to 13 Native American/Alaska Native tribal organizations.

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Expert Guidelines

Experts have created guidelines that include some signs of breast cancer:

  • a lump in the breast or underarm (armpit).
  • thickening or swelling of part of the breast.
  • irritation or dimpling of breast skin.
  • persistent redness or flaky skin in the nipple area or the breast.
  • pulling in of the nipple or pain in the nipple area.
  • nipple discharge other than breast milk, including blood.
  • any change in the size or the shape of the breast.
  • persistent pain in any area of the breast.

There are different screening guidelines which are dependent on risk. 

  • The American Cancer Society screening guidelines for average and high-risk women can be found here.
  • National Comprehensive Cancer Network (NCCN) screening guidelines for average risk women can be found here.
  • NCCN screening guidelines for high-risk patients can be found here.
  • NCCN treatment guidelines can be found here.

Questions To Ask Your Health Care Provider

  • I am at high risk for breast cancer, what screening should I have?
  • I am at high risk for breast cancer and want to get pregnant. Should I be concerned about breast cancer during pregnancy or while breastfeeding?
  • I found a lump in my breast and don’t have health insurance. Where can I go to get it checked?
  • I am pregnant and I found a lump. What tests are needed to rule out breast cancer?
  • I am nursing and I found a lump. What tests are needed to rule out breast cancer?

Open Clinical Trials

Below are two clinical trials that are recruiting young woman who are pregnant with breast cancer:

  • NCT NCT01503190. This clincal trial is recruiting young women recently diagnoses diagnosed with breast cancer to look at the level of immune suppression in different types of breast cancer. They are seeking both participants who are and are not pregnant who are willing to donate tissue samples including blood and uring samples.
  • NCT02308085: The POSITIVE trial is recruiting participants diagnosed with breast cancer who have had 18-30 months of endocrine therapy and who are seeking to become pregnant. The study researchers are asking if temporary interruption of endocrine therapy, with the goal to permit pregnancy, is associated with a higher risk of breast cancer recurrence. Participants will also contribute to a companion study about fertility concerns, psychological well-being and decision-making.

 

IN-DEPTH REVIEW OF RESEARCH

Study background:

Delays in diagnosis and treatment affect breast cancer outcomes. For young women who are not routinely screened for breast cancer, Identifying factors that contribute to delays may lead to improved diagnosis and treatment.

Breast cancer becomes more likely as a woman grows older. 

Researchers of this study wanted to know:

What factors are associated with delays in breast cancer diagnosis and treatment among young women?

Population(s) looked at in the study:

The Young Women’s Breast Cancer Study was a multicenter, prospective study between 2006 and 2016 that enrolled 1,302 women ages 40 or under with newly diagnosed breast cancer. Patients were enrolled from academic and community hospitals in Massachusetts, Colorado, Minnesota and Toronto, Canada.

Study design:

Women self-reported the method and timing of their cancer detection.

Outcomes were defined as:

  • Self-delay:  90 days or more from the time women noticed symptoms to when they saw a health care provider.
  • Care delay: 90 days or more from the time women saw a health care provider to when they were diagnosed.
  • Treatment delay: 60 days or more from when women were diagnosed to when they began treatment.

Among those reporting self-detected cancers, factors associated with self-delay and care delay were self-reported. Factors associated with treatment delay were determined from participants’ medical records.

Study findings:

The median age at diagnosis for the 1,071 eligible women was 37 years (ranging from 17-40 years), with 74% reporting self-detected cancers.

  • Self-delay or care delay of 90 days or more was reported by 17% and 13% of participants, respectively.
    • Women who were pregnant at the time of diagnosis or who were financially comfortable had less self-care delay.
    • Women diagnosed up to 1 year postpartum who breastfed and those with a family history of breast or ovarian cancer were more likely to have care delay.
    • Younger age was associated with care delays.
    • Treatment delay was reported by 10% of participants and was associated with being single, non-white and having stage 0 breast cancer. Women with stage III breast cancer were less likely to have treatment delay.

Limitations:

These findings were gathered from a limited number of academic and community hospitals and thus may not be applicable to other populations. Women over 40 years of age were not included in this study, so it is unclear whether these results would apply to them.

The finding that those with a family history of breast or ovarian cancer were more likely to have a delay in diagnosis is a surprising finding. The researchers offered a few explanations including whether patients with a family history develop symptoms so quickly that health care providers have them wait 1 or 2 menstrual cycles to see if their symptoms disappear.  It is also possible that patients with a first-degree relative with breast or ovarian cancer have more anxiety when they notice a symptom, which may also contribute to a delayed diagnosis. However, in this study, only 13 women with a family history reported a delay in diagnosis, so this finding may be false.

Conclusions:

In this study, most young women with breast cancer were diagnosed and began treatment in an appropriate timeframe.

When women delay having children, their chance of being diagnosed with breast cancer during pregnancy or in the few years after a pregnancy is higher. Currently in the U.S., breast cancer is estimated to affect 1 in 3,000 women who are pregnant.

In this study, women who were diagnosed while breastfeeding or up to 1-year postpartum were more likely to experience a care delay. This may be the result of changes in the breast during pregnancy and breastfeeding that mask breast cancer symptoms.

The relationships between financial status and self-delay, and being of non-white race with treatment delay emphasize the need for additional support for underserved populations. 

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Posted 8/5/19

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