Cancer Awareness and Empowerment

Cancer is undoubtedly a terrifying topic, one we’d rather not dwell on constantly, and that’s completely understandable. At FCF, we recognize the apprehension surrounding cancer and want to help alleviate the burden of FA families constantly thinking about it. We, in collaboration with the FA research and medical community, dedicate ourselves to addressing this issue relentlessly so we can find solutions as swiftly as possible. While researchers and others are tirelessly tackling the challenges of cancer, we encourage you to take a few steps to stay informed—without becoming overwhelmed—and to maintain a sense of empowerment.

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Two Ways to Take Charge

In Your Hands

Download the FAexam App

Step up your proactive approach to health by incorporating self-screenings for your mouth. Alongside regular dental and ENT check-ups, you can easily perform these screenings using the FAexam app. Available for free download on the App Store or through the link below.

See the Experts

Join the Cancer Study at the NIH

Empower prevention and early detection efforts by enrolling in the cancer screening study at the NIH, funded by FCF. This is the best comprehensive cancer screening initiative out there for individuals with FA. We urge all individuals with FA to register today, with eligibility starting from ages 12 and above, or even from age 8 under specific circumstances such as prolonged lesions.

What to Know: 8 FA Cancer Facts to Remember

Fanconi anemia is a DNA repair disorder and cancer pre-disposition disease.

Even though the disease is called “Fanconi anemia”, FA is a cancer-predisposition or cancer-susceptibility disease caused by mutations in genes involved in DNA repair.

People with FA have an increased risk for certain types of cancers.
  • If cancers develop in a person with FA, they are particularly prevalent in the following areas:
    • Blood-related cancers such as leukemia (thanks to research, outcomes are much better than even 20 years ago)
    • The mouth and throat region (tongue, oral mucosa, larynx, esophagus)
    • The genitalia and the anal area
  • Some individuals with FA also develop tumors in the skin, breast, and liver.
  • Some people with variants in FA genes such as FANCD1/BRCA2, FANCN/PALB2, and FANCS/BRCA1, may need additional screening for tumors that can also develop in the brain, kidney, or blood.
Standard cancer treatment in people with FA is very complicated.
  • Surgery remains the most effective treatment for cancer in FA. The earlier cancer is detected, the less invasive the surgery will be, and the better the quality of life. Regular screenings are the best way to detect changes early.
  • Chemotherapy and radiation have typically not been used due to potential toxicities associated with these therapies. We now know, however, that in some cases, a specially designed treatment protocol for people with FA can involve these types of treatments safely.
Educating yourself and being proactive are key. This means regular check-ups and at-home screenings.
  • Though there are no specific FA studies on the impact of lifestyle factors, we can apply what we know about the general population as healthy preventative measures, especially: don’t smoke and exercise regularly.
  • Regular check-ups (every six months) at the dentist, ENT doctor, and gynecologist are very important for people with FA.
  • Cancer doesn’t develop overnight, but usually over the course of years. Sometimes it can develop more rapidly, which is why regular check-ups and at-home screenings are so helpful at intercepting it.
You’ll need to help educate your doctors about FA and cancer risk.

You need to be checked by doctors more thoroughly and earlier than people without FA. Many doctors not affiliated with FA centers will be unfamiliar with the increased risk of cancer that happens at an earlier age in people with FA. Educating your local treatment team about your increased risk, by using educational materials provided by FCF, may be needed. This will ensure their diligence with monitoring your health closely and implementing the appropriate early detection screening protocols.

If you’ve had a bone marrow transplant and experienced graft-versus-host disease (GvHD), early detection for cancer becomes even more important.

If you have had a bone marrow transplant (BMT), your risk of developing tumors may increase, especially if you’ve have had significant acute and/or chronic GvHD disease and/or very severe mucositis (inflammation of the lining of the mouth). In this case, it is even more important to regularly attend cancer screening appointments.

If you see a spot in your mouth that you’re worried about, try to stay calm.

Most spots are harmless. If it’s still there after three weeks, there are several options for next steps:

  • Reach out to your primary care (FA specialist), ear nose and throat physician, or any other specialist taking care of your oral cavity, such as an oral surgeon.
  • If you are located in the United States, you can reach out to Dr. Neelam Giri at the National Institutes of Health to enroll in the FA cancer screening study.
  • If you are outside of the United States, you can contact the FA Cancer Awareness Team, Christine Krieg and Eunike Velleuer-Carlberg, who will help direct you to the appropriate professional.
If you are diagnosed with cancer, you are not alone. We are here to help.

We know your doctor may not be an FA expert, especially when it comes to cancer. That’s why we formed the FA Virtual Tumor Board, so that your doctor can meet with FA experts to help decide the best treatment plan for you. You can reach out to FCF and we can help connect your doctor to the tumor board.

There are many support services specific to cancer. We can help you access resources you may benefit from, including support groups, navigating insurance and disability, connecting with others affected by FA, locating FA expertise, and more.

The Latest

News & Events

Breaking Ground in Cancer Research: Introducing the Fanconi Cancer Foundation-AACR NextGen Grant

That's why we're thrilled to announce the launch of the Fanconi Cancer Foundation-AACR NextGen Grant for Transformative Cancer Research, a flagship funding opportunity in partnership with the American Association for Cancer Research (AACR).

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Introducing the Fanconi Cancer Foundation: A New Era in FA Research & Impact

In 1989, Lynn and David Frohnmayer founded the Fanconi Anemia Research Fund (FARF), determined and desperate to find a cure for their three daughters diagnosed with Fanconi anemia (FA). Since then, their vision has grown into a vibrant community of FA families, researchers, clinicians, donors, fundraisers, staff, and volunteers, all dedicated to improving outcomes for people with FA.

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DNA strands

2024 Research Updates

Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.

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