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Post 4 Prevention
FAQ 2018-10-17T18:38:01+00:00

Frequently Asked Questions

Inherited cancer, also known as family cancer syndrome, is a disorder in which gene mutations that may predispose individuals to certain aggressive types of cancers early in life are passed down through families. These may include:

  • Breast cancer
  • Colorectal cancer
  • Kidney cancer
  • Melanoma
  • Ovarian cancer
  • Pancreatic cancer
  • Prostate cancer
  • Thyroid cancer
BRCA1 and BRCA2 are human genes that produce tumor-suppressing proteins. These proteins help repair damaged DNA and play a role in ensuring the stability of the cell’s genetic material.

A defective BRCA gene is unable to do its normal job: protect people from cancer. People who inherit a defective BRCA gene do not have enough protection from cancer development. They face a seemingly inevitable cancer risk: up to 87 percent. Both men and women can inherit a BRCA gene mutation and pass it on to their children. Both men and women face increased cancer risk. These cancers are often aggressive and develop at a young age. They include breast cancer, ovarian cancer (females only), prostate cancer (males only), pancreatic cancer, and melanoma.

Unlike other cancers, we already know the earliest step in BRCA cancer development: the inherited BRCA gene mutation. Therefore, we can identify BRCA mutation carriers through genetic testing, apply cutting-edge science and technology to target this pathway and create medical interventions that stop cancer before it starts.
We can make the seemingly impossible, possible because:

  • The HeritX team has a unique combination of experience and motivation.
  • HeritX has brought together a team with the experience of developing more than 100 therapies in cancer and orphan diseases.
  • HeritX’s leaders have the highest determination and sense of urgency because their own families are affected by inherited BRCA cancer.
  • HeritX has achieved critical milestones to prevention at a high pace, including several “firsts”:
    • HeritX held the first conference ever focused on preventing inherited BRCA cancer.
    • HeritX created the first research & development roadmap to a preventive therapy for inherited BRCA cancer.
    • HeritX launched the first research network focused on inherited BRCA cancer.
    • HeritX presented the first and only congress abstract on non-surgical prevention on inherited BRCA cancer across the four major cancer congresses in 2016 (14,000 presentations and posters);
    • After connecting with more than 200 research groups worldwide, HeritX identified seven different ways to prevent inherited BRCA cancer and is now pushing these projects forward.
  • HeritX has no other interest than achieving a prevention ASAP, and as a nonprofit organization, can resist the pressure of corporate shareholders, institutional administrations or desire for academic notoriety.
  • Most importantly, we do not think we have all the answers. No single person or institution does. We, therefore, collaborate with top scientists beyond traditional boundaries to find the best solutions and to implement them in the fastest way.
Millions of families with inherited BRCA gene mutations would be relieved from the trauma and fear of these cancers and the related treatments.

Women would be spared the trauma of invasive breast and ovary removal, including the short- and long-term health consequences.

Unlocking the key to inherited BRCA cancer would lead the way to biomedical advances that are transferable to other inherited and non-inherited cancers.

In short, preventing inherited cancer goes beyond curing cancer.

Approximately 1 in 300 people in the general population have a BRCA mutation, which means that about 1 million people in the US alone carry a BRCA mutation and face its related cancer risk.

Generally, multiple cancers and cancer diagnosed under the age of 50 may indicate an underlying genetic factor. Specific factors that favor genetic testing are:

  •  Breast, ovarian or fallopian tube cancer under age 50.
  •  Multiple close relatives with breast, ovarian, prostate or pancreatic cancer.  (Note: melanoma is also a BRCA-related cancer even though the biggest risk for melanoma is sun damage.)
  •  Multiple BRCA-related cancers in the same person: breast, ovarian, pancreatic, prostate and melanoma.
  •  Male breast cancer at any age.
  •  Ashkenazi Jewish ancestry.
  •  The frequency of BRCA mutations is significantly higher in some populations such as the Ashkenazi Jewish community, where the likelihood of having a BRCA mutation is 1 in 40. Population-based testing in the Jewish community has revealed as many as 50 percent of BRCA carriers would not have been identified based on family cancer history alone. Therefore, many experts recommend considering BRCA testing for all members of the Jewish community. Community wide screening programs are being offered in some Jewish communities in the US and Israel.
  •       Start by talking with a medical genetics expert or genetic counselor. If you need help finding a genetic counselor near you visit the National Society of Genetic Counselors.

Protecting your health begins with learning if you are at risk. Current estimates are that only about 20 percent of BRCA mutation carriers have been identified through genetic testing so far. Therefore, most people with BRCA mutations don’t know that they have them and do not have opportunity to reduce their risk of inherited BRCA cancer through the currently available options.

The first thing you should do is let your family doctor or health care team know that you have tested positive for a BRCA mutation. Both women and men can have BRCA mutations that increase their cancer risk. However, the approach managing that increased risk differs between men and women and varies for each organ as risk.

  • Become an advocate for your own health. Not all health care providers are experts in caring for BRCA patients so your best approach is to learn as much as you can and to advocate for your own health.  One excellent resource is Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer  by Joi Morris and Dr. Ora Karp Gordon.  It combines the perspectives of a BRCA mutation carrier and a medical genetics professional, and provides guidance for the critical questions and situations that are relevant for you – male or female –  and your family.
  • Proactively screen for cancer. Cancer is most treatable and curable when it is caught early.  Therefore, the first place to start in protecting your health is the be sure you are in the right screening programs for your increased cancer risk.
  • Consider preventive surgery: The current most effective way to avoid breast and ovarian cancer is to consider preventive surgery to remove breasts and ovaries. There are no reasonable preventive measures for the other types of inherited BRCA cancer (prostate, pancreas, melanoma).
  • Mastectomies: While effective at reducing the risk of breast cancer by 95%, women who have mastectomies lose the ability to breastfeed children as well as losing sensation and sexual stimulation response in their breasts.
  • Risk Reducing Salpingo-oophorectomies (RRSO): Preventive surgery to remove the ovaries and the fallopian tubes is 90% effective in reducing ovarian cancer risk (a small risk of primary peritoneal cancer remains).  RRSO is recommended after the completion of childbearing and by age 40 for BRCA1 mutation carriers and no later than about age 45-50 for BRCA2 mutation carriers. Unfortunately, RRSO at these ages results in immediate surgical menopause with many women experiencing mild to severe menopausal side effects including hot flashes, vaginal dryness, low libido, and bone loss.
  • Become an Advocate for Prevention: The research community needs to know that preventing BRCA cancers (without surgery) is important to you. You can be an advocate for prevention and influence the future course of research in two ways:
    • 1 – Share the importance of this message with your friends through #Post4Prevention.
    • 2 – Sign up to participate in prevention research. 
  • Accelerate prevention research through HeritX and help develop a non-invasive, safe preventive therapy as fast as possible.
  • For the 2018-2019 funding cycle, we will accept applications representing innovative approaches to prevent any BRCA1/2mutation-related cancer (breast, ovary, prostate, pancreas or melanoma) with a preference for projects that are directed at preventing more than one type of BRCA1/2mutant cancer.  All proposed projects must be aligned with the HeritX Research Roadmap. Funding priority will be given to proposals focused on the following:
  1. Proposals for research to define new approaches to enhance immunologic surveillance and destruction of cells that have lost the wild type BRCA1/2gene or gene activity in patients who carry an inherited a BRCA1/2mutation in one chromosome.
  2. Proposals for research to define new agents that demonstrate cytotoxicity specifically to cells that have lost the corresponding wild type BRCA1/2gene in patients heterozygous for an inherited a BRCA1/2 These agents should have a benign safety profile in cells that retain at least one functional BRCAgene.
  3. Proposals for diagnostic tests / biomarkers that identify BRCA1/2mutation carriers at the earliest transition from normal cellular function to pre-malignancy.Ideally a biomarker would predict transformation to a detectable malignant tumor within two (2) years (or another short-term period).
  •  Please contact us at Grants@HeritX.org to discuss any idea that you may have.  We are happy to talk with you about your idea and assess how it may advance our prevention mission. We sincerely appreciate your interest and work in this field.   
  • Grant applications are accepted through proposalCENTRAL.

View our Grant Program Guidelines.

Some inherited cancer syndromes result in individuals facing as much as a 70% to 90% chance of developing cancer, such as with inherited breast cancer and inherited gastric cancer.

A gene defect (genetic mutation) in genes called BRCA1 or BRCA2 can result in a single person––a carrier of a mutation––having a greater than 90% risk of developing one or more cancers including, but not limited to, breast cancer, ovarian cancer, pancreatic cancer, prostate cancer or malignant melanoma.

The National Cancer Institute (NCI) projects that by 2020, the cost of cancer treatment in the United States will exceed $158 billion per year.