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Institute of Medicine report on state of ovarian cancer research and patient care underscores the need to know if you are at high risk for ovarian cancer


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Checked Women under 45

Checked Women over 45

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Checked Triple negative breast cancer

Checked Previvors

Checked BRCA mutation carriers

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Unhecked Her2+ breast cancer

Checked Other mutations: women with Lynch syndrome or mutations in other genes that increase ovarian cancer risk

Checked Special populations: Ovarian cancer survivors and relatives of women with ovarian cancer

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Young women with breast cancer meet national guidelines for genetic counseling and/or testing to determine if they have a mutation in BRCA and other genes that puts them at high risk for ovarian cancer. Recently, the Institute of Medicine brought together a committee of experts to evaluate the state of ovarian cancer research and care, because many things are still unknown about this disease. The committee published 11 recommendations to improve ovarian cancer risk prediction, prevention, early detection and care. (5/10/16)


STUDY AT A GLANCE

This study is about:

Assessing missing gaps in ovarian cancer knowledge, the current state of ovarian cancer research, and identifying opportunities for advancing ovarian cancer research.

Why is this study important?

The Institute of Medicine (IOM) of the National Academies of Sciences, Engineering, and Medicine brought together a committee of experts to evaluate the state of ovarian cancer research and care, because researchers still do not know or understand many things about ovarian cancer. This includes its biology (recent data suggests that many ovarian tumors do not technically start in the ovary!), risk factors, most effective methods of diagnosis, and best care for patients.

Study findings: 

The committee provided “recommendations to help reduce the incidence of and morbidity and mortality from ovarian cancers by focusing on promising research themes that could advance risk prediction, prevention, early detection, comprehensive care, and cure.” For each recommendation, the committee applied these overarching concepts:

  1. High-grade serous carcinoma is the most common and lethal subtype of ovarian cancer, so research about this subtype should be prioritized.
  2. Research should not be halted for other subtypes; more research is needed to understand differences between the subtypes.
  3. Researchers need to collaborate because ovarian cancer is rare, and differs so much from patient to patient.
  4. A method to disseminate new information on ovarian cancer is crucial.

What does this mean for me?

Young breast cancer survivors may be at risk for ovarian cancer if they have a mutation in BRCA, BRIP1, or one of the genes associated with Lynch syndrome. If you had/have breast cancer before age 45, triple negative breast cancer diagnosed before age 60, ovarian cancer at any age, or a strong family history of breast or ovarian cancer, you may want to ask your health care provider if genetic counseling and testing is right for you. Mutations in BRCA and other genes that increase cancer risk are passed from mothers and fathers to sons and daughters.  Finding out if you have a mutation in BRCA or other gene that increases breast and ovarian cancer risk can help your relatives discover if they are also at risk.

This report recognizes that much more research is needed to understand how to best diagnose and care for ovarian cancer patients. Still, a lot of progress has been made! According to the report, “Newly diagnosed ovarian cancers are more accurately and consistently staged, and a wider variety of treatment options exist. Women who receive care in accordance with national clinical practice guidelines have considerably better clinical outcomes…” Talk to your health care providers if you have questions regarding your ovarian cancer risk or to understand  your treatment options.

Questions to ask your health care provider:

  • What are risk factors for ovarian cancer?
  • I had breast cancer before age 45; should I consider genetic counseling and testing to see if I am at increased risk for ovarian cancer?
  • I tested negative for a mutation in BRCA after being diagnosed with breast cancer before age 45, but have not been tested for mutations in other genes.  Should I consider panel genetic testing to see if I am at increased risk of ovarian cancer?
  • I have a family history of ovarian cancer.  What are my options for managing risk?

IN DEPTH REVIEW OF RESEARCH

Study background:

Ovarian cancer is rare, but it is one of the deadliest cancers. Diagnosis is often made during late stage disease because symptoms (e.g. bloating and abdominal pain) are not specific, and current screening protocols do not detect ovarian cancer in its early stages.

Risk assessment, screening, and early detection:  

While it is clear that mutations in BRCA genes and the genes associated with Lynch syndrome greatly increase the risk of ovarian cancer, other risk factors are not well understood.  The IOM report notes that, “research is needed to determine the significance of known risk factors, and to identify potential new risk factors.”

Current ovarian cancer screening by transvaginal ultrasound and blood tests for the tumor marker CA125 has not been shown to detect ovarian cancer at early stages, and overall, the mortality rate due to ovarian cancer has not changed.

Diagnosis and treatment:

Even though ovarian cancers are more accurately and consistently staged, women still have a few options for drug therapy; although available drugs have a high rate of resistance. And although national clinical practice guidelines results in better outcomes for patients, less than half of women with ovarian cancer receive this care (including access to specialists, surgical management, chemotherapy, and genetic testing for mutations in BRCA or other genes that increase ovarian cancer risk). 

Supportive care along the survivorship trajectory:

More research needs to be done regarding survivorship management of patients; current research focuses on treatment of ovarian cancer.

Dissemination and implementation of knowledge:

Not all groups (patients, families, health care providers, industry, advocacy groups) receive all new or important ovarian cancer information.

Because of the unknown gaps in these areas, experts on the Institute of Medicine (IOM) of the National Academies of Sciences, Engineering, and Medicine committee made recommendations in their report, Ovarian Cancers: Evolving Paradigms in Research and Care that was released in March 2016.

Researchers of this study wanted to know:  

The current state of ovarian cancer research, missing gaps in ovarian cancer knowledge, and opportunities for advancing ovarian cancer research.

Population(s) looked at in the study:

This group based their assessment on a number of published research studies, and then used that analysis to make recommendations and assess what is unknown in the field.

IOM Recommendations:

The biology of ovarian cancer:

  • Researchers and funding organizations need to prioritize research that will further advance understanding of the different ovarian cancer subtypes.
  • Pathology organizations, oncology professional groups, and ovarian cancer researchers should reach a standardized consensus on the characteristics of each subtype.

Risk assessment, screening, and early detection:

  • Researchers and health care providers should develop new ways to increase genetic counseling and testing for BRCA and other mutations that increase ovarian cancer risk.
  • Current risk factors for ovarian cancer should be further studied, and researchers should still look for new risk factors.
  • More research should be done to determine the risk versus benefit of nonsurgical and surgical prevention strategies for different ovarian cancer subtypes and populations.
  • More funding and research should focus on developing methods to detect ovarian cancer at an earlier, more treatable stage

Diagnosis and treatment:

  • Researchers and health care providers should determine how to make sure that current standards of ovarian cancer patient care are consistently implemented.
  • Current treatment strategies should be improved.
  • More effective therapies and more targeted, specific combination therapies should be developed.

Supportive care along the survivorship trajectory:

  • Researchers should study the needs of ovarian cancer patients, from diagnosis to survivorship.

Dissemination and implementation of knowledge:

  • Researchers, health care providers, and advocacy groups should cooperate to develop a reliable system that will disseminate information to patients and their families.

Limitations:

This was not a research study, but a report that used published research and experts in the field to assess the state of ovarian research and care, as well as identify needs and make recommendations to improve ovarian cancer prevention, treatment, and survivorship in the future. 

Conclusions:  

These recommendations were made to close some of the gaps regarding ovarian cancer research and patient care. While a lot of research still needs to be done, progress has been made. Patients should talk to their health care providers to develop an appropriate plan of care, regardless of whether the patient has been newly diagnosed, is in treatment, or is an ovarian cancer survivor. 

All young women with breast cancer diagnosed before age 45 meet national guidelines for genetic counseling and testing. In addition, all ovarian cancer survivors, as well as people with triple-negative breast cancer before age 60, and people who have a family history of ovarian cancer, and/or have a known mutation in BRCA in their family should consult with a genetics expert to see if they are at increased risk of ovarian cancer.   

Posted 5/10/16

 

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References

National Academies of Sciences, Engineering, and Medicine. Ovarian Cancers: Evolving Paradigms in Research and Care. Washington, DC: The National Academies Press, 2016.

Levine, DA, Karlan, BY, and Strauss III, JF. “Evolving Approaches in Research and Care for Ovarian Cancers:  A Report From the National Academies of Sciences, Engineering, and Medicine,” Journal of the American Medical Association, published online March 2, 2016.

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