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Lifestyles, Research, and Survivors

Risks of first and subsequent cancers among TP53 mutation carriers in the National Cancer Institute (NCI) Li-Fraumeni syndrome cohort:   the NCI recently published the statistics of cancer incidence of the 107 families followed in their Li-Fraumeni Syndrome Study.  Though we’ve known that the cancer risks are very high in LFS, the researchers’ observations delineate the variations by sex, age, and cancer type in their study group.  (Cancer 2016; 122:3673-81, American Cancer Society)

For our friends in Australia – know that the Peter MacCallum Cancer Centre in Victoria is sponsoring a study on young Australians living with LFS in order to best address their psychosocial needs.  Please click here for more information on participating in their research.


Harvard Gazette:   Researchers have come across an interesting development with regenerative stem cells – apparently, they have been able to determine that these cells can acquire, not inherit, but actually acquire mutations in the p53 gene, such as those seen in Li-Fraumeni syndrome, in the petri dish!  (04/2/2017)






Congratulations to LFS Association Medical Advisory Board Member and leading LiFE researcher Dr. Judy Garber!!  Dr. Garber, Dana-Farber Cancer Institute, is being honored by the American Association of Cancer Research (AACR) for outstanding achievement in clinical cancer research.  She will be giving a lecture at the AACR Annual Meeting next week entitled, “Cancer Genetics Comes of Age.”


Telomere length matters – a mixed “salad.”  Simply put, telomeres are the ends of DNA that protect the chromosome.  This article briefly discusses research that suggests that longer telomeres can increase the risk for several cancers but reduce risk for other diseases, including cardiovascular diseases.   The authors single out gliomas’ association with longer telomeres which is interesting in that “currently,” the best recognized risk factors include radiotherapy and rare cancer genetic syndromes such as LFS.  (JAMA Oncology 02/2017)


Take charge!  Empowered by choice:  How being proactive can save your life.  Read how Lize De Jonge saved hers in Dubai where she still thrives in spite of having LFS and of having breast cancer twice!  (UAE Gulf News:   03/13/2017)


Family matters:  In the fall 2016 issue of Brown Medicine, LFS Association Medical Advisory Board member Dr. Joshua Schiffman is a featured alumn in an article on his groundbreaking research with elephants and their potential to help fight human cancer.



AACR’s Cancer Epidemiology, Biomarkers and Prevention:  Estimating TP53 Mutation Carrier Probability in Families with Li-Fraumeni Syndrome Using LFSPRO.  Algorithms that assess a patient’s risk of inherited cancer predisposition such as Li-Fraumeni syndrome are often used in clinical counseling, but the current LFS criteria have limitations.  LFSPRO, however, has proven enhanced performance in the prediction of TP53 mutations.  This can result in improved clinical management for individuals and families with LFS.   (01/20/2016)



Here’s is another inspiring story published on Richard Caisey in Bermuda.  He’s still “kicking” cancer and living life to the fullest!  (The Royal Gazette:  02/03/2016) (Photograph by Blaire Simmons)

LFS research in Australia:  Psychosocial morbidity in TP53 mutation carriers – is whole-body cancer screening beneficial?  Australian researchers assessed the psychosocial impact on 17 participants living with LFS who underwent their first 12 months of whole body MRI screening as delineated in their Surveillance in Multi-Organ Cancer protocol.  This abstract delineates some of the basic psychosocial burdens associated living with LFS and screening, as well as some of the benefits with comprehensive care.  (Fam Cancer. 2017 Jan 25. doi: 10.1007/s10689-016-9964-7)

Risks of first and subsequent cancers among TP53 mutation carriers in the National Cancer Institute (NCI) Li-Fraumeni syndrome cohort:   the NCI recently published the statistics of cancer incidence of the 107 families followed in their Li-Fraumeni Syndrome Study.  Though we’ve known that the cancer risks are very high in LFS, the researchers’ observations delineate the variations by sex, age, and cancer type in their study group.  (Cancer 2016; 122:3673-81, American Cancer Society)


The groundbreaking work of Dr. Joshua Schiffman at the Huntsman Cancer Institute really is a “big deal” because of its potential to kill cancer cells in humans.  Based on the successes of synthesized elephant p53s against cancer cells, Dr. Schiffman will first try and treat dogs that have cancer with the concept, with the hopes of conducting human trails within 3-5 years.    Once cancer can be “cured,” the most desirable goal would be to actually prevent cancer – Dr. Schiffman explains how that could be possible with the help of elephants.  Watch Bob Evan’s interview of Dr. Schiffman here. (01/29/2017)

KWQC:  Petri matters:  Dr. Joshua Schiffman is that much closer to closing in on killing cancer.  In recent studies, Dr. Schiffman has been able to destroy cancer cells using elephant p53 proteins.  Research continues with partners in Israel to develop a vehicle for inserting elephant p53s into animals.  Potentially, we could see studies with humans and cancer within three years!!  (01/18/2017)  Read the original publication on this groundbreaking research here:  Potential Mechanisms for Cancer Resistance in Elephants and Comparative Cellular Response to DNA Damage in Humans  (JAMA, November 2015)


Wonderful news in chemoprevention!  This pilot study indicates that metformin, a drug commonly used to treat diabetes, may actually be able to delay cancer development in LFS! (Journal of Clinical Investigation:   11/21/2016)


Stanford Medicine:  “And yet, you try.”  Genetic testing can answer many questions for a family with a history of cancers.  Additionally, having a specific diagnosis, such as Li-Fraumeni syndrome, can help guide early detection methods and treatment options.  But cancer can also motivate research and inspire creativity.  Read about the Gambhir family as they share their unique story of battling cancers in the lab, and at home, and about the scientific legacy that their impressive young son, Milan, leaves behind.  (Fall 2016)



mariaSince our international conference in June 2016, the key LFS researcher from our Brazilian contingency has brought her experience, skills and talents to the National Cancer Institute, Division of Cancer Epidemiology and Genetics (DCEG) –  Dr. Maria Isabel Achatz  is now a tenure-track investigator in the Clinical Genetics Branch.  Read the latest DCEG’s Linkage newsletter to learn more about Dr. Achatz’s fascinating observations that she will be applying towards future international LFS research in the Fall 2016 Linkage Newsletter.



How a ticking time bomb disease could unlock the mysteries of cancer:   “Chiquita Hessels’ uncle died of prostate cancer. Her sister had thyroid cancer and died at age 32. Her mother, grandmother and great-grandmother passed away of breast cancer. An aunt survived bone and colon cancer, only to die of liver cancer…” (June 2016)


The Globe and Mail:  Brazil’s cancer mystery – what a rare genetic mutation can teach us about the disease.  LiFE consortium researcher, Dr. Maria Isabel Achatz of the A.C. Camargo Cancer Center in Sao Paolo, Brazil, will be a speaker at the 2016 International LFS Conference and 3rd Annual LiFE Consortium and LFS Association Conference coming to Columbus, Ohio, this June.  If you are not familiar with Dr. Achatz’s work and the prevalence of LFS in Brazil, you will be intrigued with this introduction.  (December 2015)









Journal of Genetic Counseling:  Easing the Burden – Describing the Role of Social, Emotional and Spiritual Support in Research Families with Li-Fraumeni Syndrome.  Here is another fine research product from our friends at the National Cancer Institute of Health (NCI), Division of Cancer Epidemiology and Genetics (DCEG).  The research, extracted from within the NCI’s ongoing LFS study, “sheds preliminary light on how some people in families with LFS cope in the face of tremendous medical, social and emotional challenges.”  The study recognizes the unique challenges that LFS families suffer with the loss close relatives who would otherwise be a primary source of such family support.  New advances in risk management options could be just one explanation for the strengths that patient families have exhibited, which is one strong statement about the advances in research!!  (November 2015)


MD Anderson:  Li Fraumeni syndrome survivor: ‘Don’t let cancer define you.’  Five separate cancers later (adrenal, breast, melanoma, thyroid, and sarcoma), Lanie Jones explains how she found her diagnosis of LFS empowering, rather than defining.  (March 14, 2016)



For the summer season of 2015, the LFS Association donated multiple camper and patient family camp sponsorships to both Special Love’s Camp Fantastic (Virginia) and Paul Newman’s Hole in the Wall Gang Camp (Connecticut). LFS survivor Amanda Garbatini’s inspirational story of hope epitomizes why the youth camp experience is so important – for life.  (Hartford Courant, December 2, 2015)



If you missed it earlier this year, know that three scientists shared the 2015 Nobel Prize in Chemistry for their work in “the mechanistic studies for DNA repair.” In the this article, Karsten Rippe from the German Cancer Research Center in Heidelberg used Li-Fraumeni Syndrome as an example of a hereditary disease relevant to their work. Read more from the about it here.



Sabrina Fuoco has been relentless with her fight against multiple cancers for the past 30 years. She shares her story of LFS, her love of life, and her love of food. Read how Ms. Fuoco has incorporated healthy eating into her very busy and productive life. (Toronto Star, October 2015)

keith beaty


DFCI’s Insight: How one father is helping his college-aged son cope with his cancer diagnosis and treatment. (11/19/2015)

Huntsman Cancer Institute: Twice a Survivor. Thirty-six year old Mary Chamberlain talks about her diagnosis with melanoma and breast cancer, two cancers typically associated with LFS and young adults. (10/30/2015)

DFCI’s Insight: LiFE Consortium’s Dr. Judy Garber “chats” about the latest research in genetics and women’s cancers. (October 2015)

Idaho Press Tribune: Nurse urges women to be advocates for their health.  Amber Macy was aware that she had Li-Fraumeni syndrome four years prior to her breast cancer diagnosis at age 31. She encourages people to be mindful of their bodies, see your doctor if something doesn’t feel right, and learn all you can to make the best choices for you, if you are diagnosed with cancer. (10/06/2015)

Cure magazine: What Do 120 Cancer Survivors Have in Common? For starters, a sense of gratitude and an opportunity to make the most of life through making changes, and for some, a sense of living life for those they had known who had died. Read what else this cancer surviving photographer found through others’ “journeys of affirmation.” (09/02/2015)

MD Anderson’s Cancer Wise: Since her initial sarcoma diagnosis 12 years ago, Bethany Brown has had nine recurrences. Bethany’s motto? “Don’t Wait to Live.” Bethany continues to make the most of her life. (7/09/2015) Wise advice for anyone!

ACS: Sitting Too Much Increases Cancer Risk in Women. The author of “Leisure-time spent sitting and site-specific cancer incidence in a large US cohort” recommends that people make small changes that reduce their sitting time such as standing up while folding laundry and watching TV. At work, try park farther away from where you’re going so that you walk more, stand during conference calls, make shorter meetings “standing” meetings, if you’re the organizer, and take a 1-2 minute standing or walking break every hour. (original study published June 2015)

AACR: Obesity and Your Cancer Risk: being overweight or obese substantially increases your risk for certain cancers, including postmenopausal breast cancer, colorectal cancer, esophageal cancer, and prostate cancer. (November 2014)

Cure magazine: (Don’t slouch!) Overcoming Osteoporosis After Cancer Treatment. Along with other factors such aging, low body weight, and just being female, it has been shown that certain cancer treatments and post-cancer medications can negatively affect bone density. However, “healthy stresses” achieved through lifestyle strategies and physical activity can improve bone density for everyone. Good posture can help protect the bones of the spine from micro fractures and resistance strength training builds strong muscles and builds new bone mineral density. So start exercising and sit up straight! Try yoga, walking, lift weights, and dance!! (07/22/2015)

AACR: Can Fasting Affect Your Cancer Risk? Researchers have found that decreasing the number of hours spent eating during the day and increasing the length of time of fasting overnight may improve metabolic parameters and reduce the risk of developing a number of chronic diseases, including cancer. More study to come! (April 2015)

AACR: Breast Cancer Survivors Gain More Weight than Cancer-free Women. Beware and pay attention, for weight gain has been associated with the increased risks of other chronic diseases and complications. (7/15/2015)

AACR: Cancer is caused by inheritance, “bad luck,” and the environment. Minimize risks with healthier choices. (July 2015)

MD Anderson’s Cancer Wise: Since her initial sarcoma diagnosis 12 years ago, Bethany Brown has had nine recurrences. Bethany’s motto?  “Don’t Wait to Live.”  Bethany continues to make the most of her life. (7/09/2015) Wise advice for anyone!

Juiced TV: Nice! Johnny Depp, as Captain Jack Sparrow, visits with children in Australia undergoing cancer treatment! Courtesy of Juiced Enterprises 2015, in partnership with Children’s Hospital Foundation (published July 8, 2015). (Know that “Juiced TV” is a tv show “made by kids in hospital, for kids in hospital!” Kudos to Juiced!)

DFCI: Ten ways to lower your cancer risk – a simple and clear slide presentation to share that even addresses family history.

MD Anderson’s CancerWise: Anna Masten Jackson, diagnosed with stage 4 thymoma in 2013 talks about how isolating having a rare cancer can be, and provides practical tips for coping. (06/24/2015) (Note: Though rare, of course, thymoma has been reported in LFS.)

DFCI’s Insight: Yes, childhood cancer survivors have a higher risk of developing cancer later in life. This is especially true for those who are genetically predisposed to cancers, such as those with Li-Fraumeni Syndrome. Research has come far to help identify treatments that can actually cause cancer in LFS patients, but other key factors include maximizing risk reduction with a healthy lifestyle and screening for early detection.

DCFI: Tips to mitigate neuropathy pain and numbness from chemotherapy, and some safety tips to avoid injury. (06/11/2015)

DCFI’s Insight: If you missed Dr. Jennifer Lin’s webchat on melanoma, you can now view online here. “The bottom line is that UV radiation causes mutations in our genes, which can lead to cancer… We have to live with the sun, so it’s important that we learn to limit exposure and minimize a lifetime risk of accumulating genetic mutations. ” (06/11/2015)

DCFI’s Insight: Young Adult Shares Tips for Coping with Cancer – twice diagnosed, and better prepared. (06/08/2015)

Country singer Wade Hayes is a colon cancer survivor. He was first diagnosed with stage 4 cancer, at age 42. Read his inspiring story of recovery in Cure magazine, and watch the music video of a song he wrote after his treatment about living life. In it, he has incorporated photographs submitted by his fans that have faced cancer, as well.

MD Anderson’s Cancer Wise: What to say to someone with cancer. Here’s some great advice for people who may feel awkward when they talk to someone with cancer. (2014)

Triple Crown update!! American Pharoah’s jockey, Victor Espinoza, will be donating ALL of his winnings to the pediatric cancer center at the City of Hope!

WMUR (Manchester, NH): Cancer can bring the best out of others. This New Hampshire high school principal’s lessons have taught her students to give-back, and from their hearts. (May 27, 2015)

The nonprofit, Consumer Reports, did the homework for you on sunscreen effectiveness. (May 14, 2015)

In war, the first casualty is truth. In cancer, the first casualty is certainty. Debbie Woodbury, a six-year breast cancer survivor, writes about letting go of certainty. (April 2015)

It’s baseball season! And it’s a good time to discuss the dangers of smokeless tobacco with your teens.

Don’t be fooled – smokeless tobacco has harmful health effects to include cancers of LFS. Read about some of the factors that lead to the use of it by youths.

MD Anderson: Play safe at home by lowering exposure to potential toxins.

National Public Radio (04/11/2015): Getting a “leg up” on health in the “blue zones” of longevity – lifestyles of 5 clusters of centenarians around the world. They move naturally, they wake up with purpose, they eat until they are 80% full, they eat plants and plenty beans, and they have faith. Here are 15 of their eating habits. (Time 05/23/2015)

American Cancer Society Story of Hope: colon cancer and living life well with a colostomy. (March 2015)

American Cancer Society: When considering treatment for melanoma, or any other cancer, consider volunteering for a clinical trial as an option to get state-of-the-art treatments. Sometimes, clinical trials can be the only way to access newer treatments. Ask your doctor if your facility is participating in any trials, and/or check with the National Cancer Institute. (March 2015)

DFCI’s Insight: Dr. Ann Partridge, MD, PhD, director of the Dana-Farber Cancer Institute’s Adult Survivorship Program, recently discussed the emerging field of cancer survivorship in a presentation called a Science, Innovation, and Discovery Talk.  See Living Life to the Fullest.

NCI Cancer Topic: Adjusting to the stress and distress of living with a cancer (January 2015)

Cure’s Tori Tomalia on coping with “Scanxiety” (February 2015). Ms. Tomalia first had childhood osteogenic sarcoma and is now living with stage 4 metastatic adenocarcinoma lung cancer as a busy wife and mother of three.

“HOPE LIVES…” LFS and the Hereditary Cancer Predisposition Program at The Children’s Hospital of Philadelphia. See Courtney’s inspiring story.

DCFI’s Insight: “Living Well with Chronic Breast Cancer.” (06/04/2015)

MD Anderson’s Cancer Wise: What to say to someone with cancer. Here’s some great advice for people who may feel awkward when they talk to someone with cancer. (2014)

DCFI’s Insight. Young Adult Shares Tips for Coping with Cancer – twice diagnosed, and better prepared. (06/08/2015)

DCFI’s Insight: “Living Well with Chronic Breast Cancer.” (06/04/2015)

U of Utah Health Care: Can gel manicures cause melanoma?  Here’s a warning for LFS patients who enjoy manicures. LFS is a risk factor of melanoma, enough – consider factoring in the risk of ultraviolet lights that are used to quick-dry gel nail polish. If you must “gel,” choose salons that use LED lights for drying, instead. (06/04/2015)

Every day sun exposure counts! Protect your skin and incorporate sunscreen into your daily routine, all year long, to best minimize your risk of skin cancer.

Pediatric melanoma – it’s never too early to check your child, or even infant, for unusual moles, growths, and red or dark spots. Know that melanoma can present itself in children differently than in adults – of the signs to watch, an “evolving” irregularity, may be the only indication.

Cure Magazine: With more and more people moving on to cancer survivorship, the concept of cancer rehabilitation has been emerging and a key component in recovery. (May 20, 2015)

Cure magazine: Sleep – an unmet need in patients, survivors, and caregivers. (May 2015)
DFCI’s Insight: In 2007, researchers told Steven Keating that they found a small, but common, abnormality near the smell center in his brain. In 2010, scans showed no changes, but in 2014, he started smelling a strange vinegar scent for about 30 seconds each day. Steven had a glioma brain tumor. Read about how he was involved in his care.

Need help explaining cancer? Here is a well done presentation on the basics of cancer by the American Association of Cancer Research – What Is Cancer?

Centers for Disease Control and Prevention with “The Truth About Tanning.”

Cure magazine: Read Barbaro Tako’s take on thriving after both breast cancer and melanoma. “It is wise to be educated in what to watch for. It is good to be observant… As a cancer survivor, my uncertainty, ironically, gives me a greater sense of gratitude and appreciation for many things, large and small, in my life…” (April 2015)

DFCI’s Insight: Integrative Therapy – using meditation to relieve stress through “mindfulness.” (April 2015)

MD Anderson’s CancerWise: Coping with lymphedema after sarcoma – one young adult’s experience. (April 2015)

NCI Cancer Topic: Lymphedema – swelling in soft body tissues caused by damage to the lymph system. It is a common problem caused by cancer and cancer treatment that usually affects a limb, but can occur in other parts of the body.

NCI Cancer Topic: Managing Lymphedema – steps can be taken to prevent lymphedema from getting worse.

MD Anderson Cancer Center offers more tips on coping with chemobrain.

Cure on chemobrain: Dr. Serena Wong Discusses Cognitive Dysfunction After Cancer (April 2015). Be patient with yourself, take extra time for tasks, stay active and exercise, and other coping tips are offered.

Cure: Survivor’s guilt is multifaceted and can come wrapped in different packages. Take the gift, take some action, and shake the shame:  Grappling with Guilt. 

MD Anderson’s CancerWise: Coping with insomnia during cancer treatment. Try these tips before other health issues arise. (March 2015)

Listen now! AACR’s podcast on balancing life with cancer, and the workplace: know your legal rights and communicate your needs to your employer – it can make the balancing act a little easier. (7:50 minutes)

Magnolia is a meal delivery program provides nourishing meals to households affected by breast cancer for up to two months. Check eligibility, and see if you, or a loved one, lives in area where Magnolia is available (currently available in some areas of New Jersey, New York, New Hampshire, Massachusetts, etc.)

Huntsman Cancer Institute on how to “survive” after cancer treatment.

DCFI’s Insight: For Elizabeth Cahn, participating in a clinical trial was her way of “paying it forward.” (March 2015)

Losing your hair to chemotherapy doesn’t mean you need to lose your style. Head scarves are terrific alternatives to wigs, if you don’t want to go bare. They can help you look coordinated in the workplace, or look sharp, just out and about. Available for purchase are “pre-tied” head scarves, which are easy to wear, or you can learn some tips on tying the scarves you already have. Consider stocking up with them at thrift stores to expand your wardrobe with inexpensive options.

NPR: MaryAnn Anselmo has been benefiting from the advances in cancer genetics and precision medicine targeted at her glioblastoma. Listen to her story.

AACR: Have the conversation – a missed clinical trial could be a missed opportunity. (March 25, 2015)

MD Anderson Cancer Center’s OncoLog: Telling Your Child About Your Cancer. “Learning that you have cancer is extremely challenging; however, telling your child about it may be even more difficult.” (January 2015)

The Children’s Inn at the National Institutes of Health is a home away from home – a place where families can stay together while their children receive groundbreaking medical treatments at the NIH. While NIH tends to child’s medical needs, The Inn tends to the child’s heart, soul and spirit.

Though numerous factors can contribute to “chemobrain,” researchers are beginning to learn that certain cancer therapies can cause an inflammatory response that affects the central nervous system. The Kessler Foundation is seeking early stage breast cancer patients to participate in a clinical study that will examine the side effects of certain chemotherapies and hormone therapies on the brain.

“Depression does occur commonly with cancer and its treatment, so don’t just dismiss the symptoms as a part of cancer.” (December 2014)

DFCI’s Insight: Dr. Ann Partridge, MD, PhD, director of the Dana-Farber Cancer Institute’s Adult Survivorship Program, recently discussed the emerging field of cancer survivorship in a presentation called a Science, Innovation, and Discovery Talk.

NCI Cancer Topic: Adjusting to the stress and distress of living with a cancer (January 2015)

Create an online community to share local support and caregiving opportunities with CancerCare’s “My Cancer Circle.” Check it out:

Deb Smith’s story: benefiting from precision medicine – targeted, gene-specific therapy – and a clinical trial.

Cure magazine: social media and online support – consider the pros and the cons (February 2015)

Summer camp can be a terrific experience for any child, even one affected by childhood cancer. Read about the benefits such an experience could offer your child. While this winter lingers, consider a camp that can meet you and your child’s needs – locate one here.

Cure Today magazine: Being Social – resources for caregivers seeking online social support. (02/18/2015)

NCI’s Patient Education: Pain Control – Support for People with Cancer (May 2014). Download the PDF to your computer, or download the publication to your Kindle!

DCFI’s exercise physiologist Nancy Campbell and nutritionist Stacy Kennedy provide exercise and nutrition tips for brain tumor patients and survivors.




























LFS Association

We are families, like you who have been devastated by the effects of Li-Fraumeni Syndrome, a hereditary cancer predisposition syndrome. Our hopes are to educate, raise awareness and find better screening programs and treatments for LFS.


Medical Resources

We've compiled a list of doctors available to
answer your questions, LFS support and
treatment. They specialize in many different
areas, which have been listed with their


LFS News

WETB’s Gayle Ong was one of several reporters covering the event and story of LFS and Mo Songs for Kerry.

Read More…

Community Events

Carly Grant – Mohawk Hudson River Marathon 2017
Support Carly and the Li-Fraumeni Syndrome Association as she raises money and trains for the Mohawk Hudson River Marathon on October 8th!


LFS Webinars

Check out our library to watch past LFS
webinars, and to find out about
upcoming webinars!

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LFS Awareness Brochure

Myriad Genetics is proud to partner with LFSA to launch the global LFS Education and Awareness Campaign!