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Although July isn’t (yet) officially recognized by the federal government as Sarcoma Awareness Month, it is very much recognized by those who are affected by it.  Also be aware that, though typically rare, sarcomas are a common cancer in Li-Fraumeni syndrome.  Of the many types of sarcomas, leiomyosarcoma (LMS) has been seen in LFS patients.  LMS is a cancerous tumor of smooth muscle cells or connective tissues that can arise almost anywhere in the body.  Learn more about LMS from our friends at the National LeioMyoSarcoma Foundation.


Cleveland Clinic:  Why Leukemia Happens:  Could it run in your family?  Short answer:  Yes.  (04/18/2017)


AACR:  Though we know having LFS greatly increases the risks of women developing breast cancer, Dr. Karin Michels’ recently published research discusses the diet (and chronic inflammation) and the increased risk of developing early onset breast cancer.


The Huntsman Cancer Institute’s Cancer Genetics Studies newsletter this winter highlights Dr. Joshua Schiffman’s groundbreaking research on how elephants and all their p53s may be able to help in our quest to conquer cancer!  See page 2!  the American Society of Clinical Oncology (ASCO) has a very user-friendly patient information website.  It includes clinical criteria for Li-Fraumeni syndrome (LFS), as well as Li-Fraumeni-like syndrome (LFL), risks, strategies, genetic counseling, and other useful information in an easy-to-read format.


Learning matters:  “Introduction to the Science of Cancer.” The Ohio State University’s Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute, in conjunction with the Ohio State Office of Distance Education and eLearning, offers this free, noncredit, online course, designed for those with a limited knowledge of science but who would like a better understanding of cancer.  All you need is a free Apple ID and the iTunes U app to view the course and materials.


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)


Nature: Genetic and functional analysis of a Li Fraumeni syndrome family in China.  This report suggests that Li-Fraumeni syndrome occurs “as frequently as one in 5,000-20,000 individuals,” and yet, China, a country that constitutes one fourth of the earth’s population, has had no reported LFS case  – until now.  (Hu, H. et al. Genetic and functional analysis of a Li Fraumeni syndrome family in China. Sci. Rep. 6, 20221; doi: 10.1038/srep20221 [2016]).



Nature –  Osteosarcoma: prognosis plateau warrants retinoblastoma pathway targeted therapy.  Though a common LFS cancer, osteosarcoma has presented challenges for researchers due to its rarity.  However, a particular avenue for molecular targeted therapy is showing promise through a retinoblastoma pathway.  This paper presents research, and hope, that tumor cells can be attacked with greater specificity and lower toxicity.  (03/25/2016)  It also shows that LFS research is good for cancer research.



Scientists find way to make leukemia cells kill each other.”  The Proceedings of the National Academy of Sciences published an interesting study  wherein scientist were able to change leukemia cells into leukemia killers. Imagine the potential!


Genetic regression” – a (relatively) new concept in the evolutionary tolerability of p53 mutations. Researchers studying genome sequencing in Malaysia are working on a hypothesis that those with LFS who develop cancer later in life may actually have a form of genetic resistance to early cancer. This has lead Professor Ariffin and her collaborators to further investigate the genetic evolution of primary and secondary cancers in patients with LFS to better understand cancer onset. (May 2015)  Read more on the work of Professor Dr. Hany Ariffin at the University of Malaya’s Cancer Research Institute – her study was published by the Proceedings of the National Academy of Sciences in 2014.

Brazil’s Cancer Curse” – Sue Armstrong credits geneticist Maria Isabel Achatz of São Paulo’s A C Camargo Cancer Center for recognizing the prevalence of the Li-Fraumeni Syndrome in Brazil. It is speculated that “south and south-eastern Brazil has an immense number of Li–Fraumeni carriers, probably more than 300,000,” according to Dr. Achatz. “People are just not aware of this, so probably many cancers that are occurring in the population in general are due to this mutation and people just don’t realise.” Ms. Armstrong reports that very recently, the same mutation in p53 has also been found in neighboring Paraguay, where geneticists randomly tested 10,000 samples of blood from newborn babies. The results suggest that here, too, several thousand people may be living with LFS. Sue Armstrong authored, p53: The Gene that Cracked the Cancer Code, published in February 2015.

DFCI’s Insight: What are the Most Common Symptoms of Childhood Cancer? “The symptoms of childhood cancer can be difficult to recognize because they often mimic those of typical childhood illnesses, such as the common cold.” Though childhood cancers, in general, are rare, be diligent if LFS is a factor. Read here for the most common symptoms to act upon. (09/07/2015)

AACR: A Family Affair – practical tips for women to minimize their risks of developing breast cancer in themselves,… and their daughters. Taking advantage of the unique mother / daughter relationships to guide young girls into making healthy lifestyle choices can result in sustained behaviors that will impact overall long-term health. Download the free ebook, “Together,” for more information on some of the risk factors of breast cancer and strategies on implementing tips for young daughters that are even customized by age group.

AACR’s Cancer Today:  There Goes the Neighborhood – how the microenvironment influences cancer initiation, progression and metastasis, and how cancer cells modify their surroundings. Help improve your “neighborhood” with an overall healthy diet. (June 2015)

NCI Cancer Topic: July is Sarcoma Awareness Month. View the signs, symptoms, and treatment options in NCI’s comprehensive overview on soft tissue sarcoma.

Washington Post: The Journal of American Medical Association (JAMA) has published (06/15/2015) that cigarette smoking has been linked to 12 different cancers – not just lung cancer.

NCI: Because cancer in young adults is rare, in itself, it is important to find an oncologist who specializes in treating the type of cancer you have. Research is finding that young adults may have better outcomes with certain cancers if treated with pediatric, rather than adult, treatment regimens – young adults who have a cancer that typically occurs in children and adolescents, such as brain tumors, leukemia, and osteosarcoma, may be treated by a pediatric oncologist. (May 2015)

Today, June 7, 2015, is National Cancer Survivors Day!! Enjoy today, and every other day!!

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

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)

NCBI: Newborns have been diagnosed with melanoma, and it even believed that melanoma cells can be passed in utero – early diagnosis and prompt treatment are key. (2009)

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.

View MD Anderson’s Cancer Information on Childhood Melanoma.

Seattle Times: “Tumor Paint” and pediatric brain cancer – Seattle Children’s Cancer and Blood Disorders Center has initiated a clinical trial using scorpion venom to visibly distinguish cancerous cells from healthy ones during surgery on children with brain tumors. (06/04/2015) Reference here for more information.

Cure Today: Less can mean more – “Good news for adult survivors of childhood cancers.”  Here are more details on the long-term survival for pediatric cancer patients, as presented by St. Jude Children’s Research Hospital at the American Society of Clinical Oncology (ASCO) meeting this month. (06/04/2015)

Here’s an interesting initiative by the National Cancer Institute: NCI-MATCH (Molecular Analysis for Therapy Choice). The trial, starting in July, will be a “precision medicine experiment.” Three thousand patients, whose other treatments have failed, will have their tumor genes sequenced to see what mutations, or pathways, fuel their cancers – the patients will be assigned drugs based on these genes, rather than the site of the tumor origin. Listen here for more details.

Cure: Great news with treating melanoma! Those with “micro” lymph node involvement may not need to undergo complete node removal, minimizing the risks of infection, nerve damage, and lymphedema! With micrometastases in melanoma, complete node removal may be unnecessary. (06/02/2015)

NCI: Scroll through 250 years of history outlining some of the key milestones of cancer research, to include the discovery of the p53 gene in 1979. (01/21/2015)

Associated Press: Scaling back treatment on children with cancer by avoiding certain drugs and changing the way chemo is given (as well as less, and better targeted radiation), may actually improve survival. (06/01/2015)

The National Cancer Institute has redesigned their website – check out what you may have missed previously!

AACR: Advancing Personalized Care Medicine. Dana-Farber’s Dr. Nikhil Wagle discusses how to truly have an informed decision regarding treatment utilizing detailed genomic analyses.

Webcast presentation, courtesy of the AACR: “Insights from cancer genomes into the mutational processes underlying cancer development,” presented by Dr. Michael R. Stratton of the Wellcome Trust Sanger Institute (April 2015)

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 – Bethlehem senior class gives their  trip money to principal battling cancer.   (May 27, 2015)

DFCI’s Insight: Can kids get melanoma? Yes. (May 27, 2015)  And although very rare, spitzoid melanoma has been reported in a child with LFS. (2014)

AACR’s Cancer Research Catalyst: Eric Winer, MD, chief of the Division of Women’s Cancers and director of the Breast Oncology Center at the Susan F. Smith Center for Women’s Cancers at Dana-Farber Cancer Institute in Boston, and professor in the Department of Medicine at Harvard Medical School, discusses the complexities of cancer – its origins, diversities, and influences on research and treatments. (May 26, 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)

NCI offers a useful summary on treatments, side effects, and questions to ask your doctor about what to expect with your cancer treatment. (April 19, 2015)

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)

DCFI’s Insight: New research brings better understanding of brain tumors, treatment advances. Researchers are focusing on tumor microenvironments, genomic landscapes, molecular alterations, a newly discovered protein (Eya1), and incredible advancements in treatment!

DFCI’s Insight: What are the differences between adult and childhood brain tumors? There are several developmental factors that influence symptoms and the differences even seem to affect tolerance and even response to chemotherapy.

DFCI’s Insight: Yes, elevation does increase the risk of skin cancer. Read more from Jennifer Lin, MD.

JAMA Oncology: Germline TP53 Mutations in Patients with Early-Onset Colorectal Cancer in the Colon Cancer Family Registry. Although recent data has indicated that the early onset of colon cancer is linked to the Li-Fraumeni syndrome, data reviewed from the Colon Cancer Family Registry indicates a low frequency of germline mutations of the TP53 gene with early-onset colorectal cancer in the population studied. And for those few who did have germline p53 mutations, researchers found none that met the clinical criteria for Li-Fraumeni syndrome. This will present challenges in interpreting multigene sequencing panels in hereditary cancer risk assessments and developing management strategies for those who have germline p53 mutations and yet don’t have LFS. (May 2015)

Radiological Society of North America: Continued research is supportive that radiation-free MRIs may provide important predictions of breast cancer in high-risk women, improving “personalized medicine.” (May 12, 2015)

At MD Anderson, Phil Bauman’s glioblastoma was treated with the common cold virus – three and a half years later, he remains cancer free. (My Fox Houston, May 7, 2015)

NCI Cancer Topic: What is Cancer? (February 2015)

Courtesy of the American Association of Cancer Research: The AACR has made available to the public the educational sessions or methods workshops held at their Annual Meeting last month in Philadelphia. View full text articles in the AACR Education Book, April 2015, Volume 2015, Issue 1.

DFCI’s Insight: The Most Common Sites for Melanoma

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

AACR: A study based out of Northern Ireland and published in “Cancer Epidemiology, Biomarkers & Prevention” indicates that some lung cancer patients may be benefiting from their use of statins.

NCI Cancer Topic: May is also Brain Tumor Awareness Month! Read about pediatric brain tumors. (March 2015)

NCI Cancer Topic: May is Skin Cancer Awareness Month and LFS patients are at increased risk to developing melanoma. Read more about melanoma.  (November 2014)

DFCI’s Insight: We now know that some viruses can cause some cancers, but here’s more on some viruses that may be able to kill cancer. (May 2015)

DFCI’s Insight: Lung cancer treatments have been greatly enhanced with targeted therapies – doubling, tripling, and sometimes quadrupling the response rates. Watch the webchat for the latest on being precise. (April 2015)

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)

Dr. Craig Thompson, Memorial Sloan Kettering Cancer in New York, on the Revolution in Cancer Care.

NCI’s Acting Director Doug Lowy recently spoke to researchers at the American Association of Cancer Research’s annual meeting. Read about his continued commitment to cancer research.

NCI Visuals Online: These are what metastatic melanoma cells look like. Their movement depends on actin-rich core structures such as the podosomes (yellow) shown here. You can also see the cell nuclei (blue), actin (red), and an actin regulator (green). (2015 NCI Cancer Close Up project)

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.

Sick Kids Hospital in Canada is discovering hopeful ways to treat childhood brain tumors without radiation. (April 2015)

NCI Cancer Topic: How to Find a Cancer Treatment Trial: A 10-Step Guide

NCI’s SEER report was released today. You can review cancer incidence, mortality, prevalence, and survival statistics from 1975 through 2012, and even generate custom reports.

Introduced at the 2015 AARC Annual Meeting: Researchers “are delighted to declare” that they found pembrolizumab to be superior to ipilimumab as a first-line therapy in treating advanced melanoma in their phase 3 clinical trial.

NCI Cancer Topic: Teratomas – Childhood Extracranial Germ Cell Tumors (April 2015)

NCI Cancer Topic: Neuroblastomas (March 2015)

DCFI’s Insight: Yes, babies can be born with cancer. The most common cancer in newborns is neuroblastoma. Another tumor called teratoma has also been seen in infants, and both have been seen in LFS. Sometimes they can be detected as early as in utero. The neuroblastomas and teratomas in newborns are typically very treatable, and most children are cured. (February 2015)

Cure Magazine’s Special Issue on Colorectal Cancer (April 2015)

NCI Cancer Topic: Precision Medicine and Targeted Therapy (August 2014)

ACS:  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.

Courtesy of AACR journal editors, are collections of selected, impactful articles published recently across the AACR journal portfolio – these articles are freely available anytime, anywhere, for you.

Tonight!! MSKCC’s CancerSmart talk webcast on “Progress and Promise: What You Need To Know About Colorectal Cancer.” Wednesday, April 15, from 6:00 to 7:30 PM EST. View it here:

NCI Cancer Topic: What’s involved with reconstruction after a mastectomy.

The National Cancer Institute is still accepting LFS participants for their pilot study on metformin. Reference this link to read more about the study and eligibility, and for contact information:

Here is one more study scheduled for presentation at the AACR Annual Meeting: Model osteosarcoma by Li-Fraumeni syndrome patient-specific induced pluripotent stem cells.  Read the abstract here.

Also to be presented at the AACR Annual Meeting is LFSpro: a risk assessment tool to estimate TP53 mutation status in families with Li-Fraumeni syndrome – it may improve clinical management for families with LFS. Read the abstract here.

National Cancer Institute researchers will be providing an update on the cumulative cancer risk in the NCI Li-Fraumeni Syndrome Cohort at the American Association of Cancer Research’s Annual Meeting. Read the abstract here.

Research conducted on LFS out of Brazil scheduled to be presented this month at the American Association of Cancer Research’s Annual Meeting: Energetic metabolism and DNA damage response in fibroblasts from Li-Fraumeni syndrome patients: new insights into the molecular mechanisms of the disease.  Read the abstract here.

NCI Cancer Topic: Know that adults with LFS are still at risk for soft tissue sarcoma. (April 2015)

NCI Cancer Topic: Read about childhood soft tissue sarcoma – having LFS can increase your child’s risk. (April 2015)

American Cancer Society: Dana-Farber Cancer Institute’s Dr. Matthew Meyerson has studied lung cancer for about 17 years. He is working “to identify all the cancer-causing mutations in lung cancer, and determine their impact on cancer risk, prognosis and treatment… Lung cancer is one of the forms of cancer that has benefited the most from the development of new personalized treatments.” (Personalizing Care Part 2)

American Cancer Society: Researchers have learned that cancer can arise from any number of genetic malfunctions and, when combined with other errors, can ultimately lead to the out-of-control cell growth that causes tumors to grow and spread. Read more about personalizing medicine. (Personalizing Care Part 1)

AACR: Zach thrives after participating in a clinical study that targeted the genetics of his lymphoma. Specificity matters.

Read more about the new Acting Director of the National Cancer Institute. Douglas Lowy, MD, was officially name on Wednesday, April 1st, 2015.

The new Acting Director of the National Cancer Institute will address the research community at the American Association of Cancer Research’s annual meeting in Philadelphia later this month. See Dr. Douglas Lowy’s brief remarks here.

Have an iPhone? “Share the Journey!” Dana-Farber Cancer Institute has collaborated with Apple on the development of an app for breast cancer survivors to share instantly with researchers.

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)

Columbia University hosted a media event in preparation for the PBS broadcast of Ken Burns’ documentary on cancer, based on the Pulitzer prize-winning book authored Columbia’s oncologist, Dr. Siddhartha Mukherjee. The discussion included talk of significant growth in philosophical approaches to the scientific research conducted and the potential of targeted treatment.

MD Anderson’s CancerWise: Another inspiring success story – beating lymphoma. (June 2014)

DFCI’s Insight: Documenting success in cancer research. (March 30, 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.  View Dana-Farber’s tips on tying a headscarf.

60 Minutes: a phase one clinical trial involving treating glioblastoma with polio.  Aired on march 29th, 2015.

Share Your Story with the Community! You can submit your story on “the wall” of, the official website for his documentary, Cancer – The Emperor of All Maladies. Ken Burns’ documentary aired on public television March 30th, 31st, and April 1st, at 9PM, EST.  You can view the documentary film here.

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

Part 1: Nutrition Basics – American Cancer Society’s presentation on Nutrition During Treatment.

Part 2: Managing Side Effects – American Cancer Society’s presentation on Nutrition During Treatment.

Congratulations to the class of 2015! See who the American Association for Cancer Research (AACR) will induct as Fellows of the AACR Academy this April during their annual meeting in Philadelphia. Previously inducted Fellows include Dr. Joseph Fraumeni (2013), Dr. Frederick Li (2014), Dr. Judy Garber (2013), and Dr. Louise Strong (2013).

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

NPR’s All Things Considered: Listen to MIT’s Robert Weinberg and why the war on cancer is not that easy. (March 2015)

NCI Cancer Topic:  Risk Reducing Surgery.  In two studies, the lifetime risk of developing breast cancer for women with Li-Fraumeni Syndrome has been estimated to range from 49 to 60 percent. Women with a genetic disposition to developing breast cancer, and even ovarian cancer, often opt for prophylactic surgery.

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.

Reducing Breast Cancer Risk:  “Even though a person may have a genetic predisposition to a particular medical concern, in many cases they may still have some control over the likelihood of acquiring that condition.” (March 22, 2015)

In February 2015, Stephen J. Chanock, M.D., Director of DCEG at NCI in Bethesda, delivered the 11th annual Jeffrey M. Trent Lecture in Cancer Research on The Complexity of Genetic Susceptibility to Cancer.

Created and supported by the Massachusetts General Hospital Cancer Center, the one hundred is an awareness and fundraising initiative that celebrates hope in the cancer community. Of the 100 nominees this year, the one hundred is honoring Adam LaReau for his efforts in pairing young cancer patients with US Navy SEALS in their Climb for Courage. Thank you, Adam!!

NCI Cancer Topic: Esophageal Cancer. Smoking, heavy alcohol use, and Barrett esophagus can increase the risk of developing esophageal cancer, and it has been seen in LFS patients. (December 2014)

Colon Cancer News Today: Researchers study the association between mutations in TP53 and early-onset colon cancer. This population studied indicates that germline mutations of p53 and LFS aren’t the only risk factors (March 17, 2015):

The Children’s Oncology Group (COG) is a National Cancer Institute supported clinical trials group. It is the world’s largest organization that performs clinical research to improve the care and treatment of children and adolescents with cancer. Each year, approximately 4,000 children enroll in a COG-sponsored clinical trials.

AACR’s Advances in Brain Cancer Research conference will be held May 27th – 30th, 2015, at the Omni Shoreham Hotel in Washington, DC. Register and view the program here.

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.  Read more here.

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

Cure Today magazine:  Targeting Gastric Cancer – Recent Advances Generate Fresh Hope.  “As we enter an era of unprecedented clinical trial activity in gastric cancer, with thousands of patients enrolled or set to be enrolled in large, randomized phase 3 trials of novel targeted agents, we may finally be on the path to changing the course of this disease.” (March 2015)

Cure Today Magazine: Outsmarting Melanoma – encouraging advances in treating melanoma from clinical trials (winter 2015)

NCI’s Division of Cancer Epidemiology and Genetics – Get moving: strong evidence exists that physical activity reduces the risk of breast, colon, and endometrial cancer.  Linkage Newsletter Spring 2015

National Cancer Institute’s Cancer Topic: Neuroblastoma – the development of cancer cells in the adrenal gland, neck, chest, or spinal cord. Those with Li-Fraumeni Syndrome are at an increased risk of developing neuroblastoma in early childhood. (March 2015)

The FDA announced today that Unituxin (dinutuximab) has been approved to treat pediatric patients with high-risk neuroblastoma.

On Saturday, April 18, 2015, Debbie’s Dream Foundation is hosting their 5th Stomach Cancer Education Symposium  in Fort Lauderdale, FL. Attend in-person or via live webcast.

Dana-Farber Cancer Institute’s “Insight.” If you’ve been hesitant to participate in a clinical trial, here are some clarifications of basic premises that may have you reconsider:  Five Common Myths about Clinical Trials.  (March 2015)

Douglas Hanahan and Robert Weinberg, Hallmarks of Cancer: The Next Generation (Cell, Volume 144, Issue 5, March 4th, 2011)

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.

National Cancer Insitute: March is Colorectal Cancer Awareness Month – get a gut-check.

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

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

Read Deb Smith’s story of her treatment at Dana-Farber Cancer Insitute and how she has benefited from precision medicine – targeted, gene-specific therapy – and a clinical trial.

Among all the support services offered by CancerCare, is their Connect series of online or telephone one-hour cancer education workshops by oncology experts. Click on general topics or cancer types to download the audio or view the webcasts of past workshops – or view the upcoming schedule of presentations.

From the Archives: “Talking About Cancer, Then and Now.” It wasn’t that long ago (mid-20th century) that doctors considered withholding a diagnosis (and prognosis) of cancer. Doctors judged a patient’s ability to cope with such a diagnosis on his or her personality, faith, education, social system, etc., and often opted to withhold information based on their “duty to protect.” Listen to this audio clip from the archives of New York Public Radio.

American Association of Cancer Research: what to consider when reading and assessing scientific journal articles.

National Cancer Institute’s Cancer Topics: Colon Cancer (December 2014)

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

National Cancer Institute’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!

In October 2014, Dr. Joseph Fraumeni received the Lifetime Achievement Award by the Duke Medical Alumni Association. Watch their video on some of his amazing accomplishments, to include LFS, cancer mapping, and the Division of Cancer Epidemiology and Genetics at NCI:  2014 Duke Medical Distinguished Award – Dr. Joseph Fraumeni

Cancer Epidemiology:  From Pedigrees to Populations.  In May 2014, the National Cancer Institute (NCI) honored Dr. Joseph Fraumeni for his 50 years of visionary leadership in cancer research, with a full-day symposium of guest speakers and presentations  on his landmark accomplishments.    Read more details from the Division of Cancer Epidemiology and Genetics.

From the Archives: If you missed it in 2010, you can still view the very first Li-Fraumeni Syndrome workshop held at the National Cancer Institute, Bethesda, Maryland. The premise was to initiate an international collaboration of cutting edge research and care of LFS patients and their families. This event gave birth to the LiFE Consortium, and the LFS Association: see it here.

You don’t need to live in Utah to participate in the Dr. Joshua Schiffman’s Cancer Genetics Study. It is confirmed that the study coordinator is actively recruiting LFS patients for this ongoing study. Please see the below information sheet and contact Bella Johnson at (801) 585-7343 or, to see how you can help.

Dana-Farber Cancer Institute’s Insight: Discovering New Ways to Approach the Treatment of Rare Brain Tumors that may eventually apply to treating breast, prostate, lung, and colon cancers.  (February 2015)

Founded in 1973, the American Brain Tumor Association provides information, resources, and support to brain tumor patients and their families, along with funding for brain tumor research.

National Cancer Institute’s Cancer Topics: Adrenocortical Carcinoma (November 2014)

National Cancer Institute’s Li-Fraumeni Syndrome Study Newsletter: know that the study offers several ways to participate. Read about the study and see how you can contribute and/or benefit: LFS Study Newsletter  (Summer 2014)

LiFE Consortium’s and MD Anderson’s Dr. Louis Strong is the principal investigator in a long term study focusing on LFS cancers initiated over 30 years ago – the Li-Fraumeni Syndrome Study Group. Review the study plans, eligibility, and frequently asked questions, and consider participating.

Dana-Farber Cancer Institute’s Cancer Genetics and Prevention Program and the Li-Fraumeni Syndrome Registry Study – a little bit of participation could help a lot. Participation involves:
• Questionnaire about personal and family history
• Donate a blood or saliva sample (optional)
• Allow collection of tissue specimen (optional)
After consenting to participate in this study, you do not have to do anything active to continue to
Participate, and you can withdraw at any time. Please reference the LFS Registry Study PDF.

National Cancer Institute Director Harold Varmus, MD, on the FY 2016 Precision Medicine Initiative and Cancer Research. (January 30, 2015)

Need a genetic counselor? Use NCI’s Cancer Genetics Services Directory, and search by specifying “Li-Fraumeni Syndrome.” Though they are not necessarily endorsed by the NCI, the 536 professionals listed for LFS meet certain criteria to be listed. Further search by location: Cancer Genetics Services Directory

In the New England Journal of Medicine, NIH Director Francis Collins and NCI Director Harold Varmus discuss President Obama’s Precision Medicine Initiative: NEJM Perspective  (January 30, 2015)

During his 2015 State of the Union Address, President Obama announced his Precision Medicine Initiative “to bring us closer to curing diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.” $70 million will go to National Cancer Institute to accelerate efforts to identify genomic drivers in cancer and apply that knowledge in the development of more effective approaches to cancer treatment: White House Blog on Precision Medicine

CancerCare offers an online therapeutic writing group, “Healing with Words,” for those currently in cancer treatment or who have completed treatment in the last year. Register now for the February 2015 start date: “Healing with Words” course

Cancer’s history and hope: Ken Burn’s upcoming three-part television event, Cancer: The Emperor of All Maladies, will air March 30, 31st, April 1st, at 9pm, EST, on PBS and WETA. See the trailer: Cancer – The Emperor of All Maladies

AACR’s Cancer Research Catalyst: Hugh Gannon, PhD, studies p53’s role in regulating oxidative stress in cancer: Setting the Stage for New Therapeutics Through Basic Cancer Research. (January 22, 2015)

National Cancer Institute’s list of targeted therapies that have been approved by the FDA for specific types of cancers, to include gastric cancers, breast cancers, colon cancers, brain cancers, etc.:  Targeted Cancer Therapies  (April 2014)

National Cancer Institute and the Federal Trade Commission on how to recognize a cancer treatment scam and how to best evaluate online sources of health information: Evaluating Online Sources of Health Information  (2012, and still relevant)

National Cancer Institute’s update: Other Rare and Unusual Cancers of Childhood (December 2014)

National Cancer Institute’s update: General Information about Unusual Cancers of Childhood (December 2014)

National Cancer Institute’s update: Adrenocortical Carcinoma (November 2014)

Dana-Farber Cancer Institute’s Insight:  The discoveries of Drs. Li and Fraumeni and their research on genetics and cancer, eventually led to the best-known cancer susceptibility gene – BRCA.  20 Years After BRCA   (October 2014)

From their archives: Dana-Farber Cancer Institute’s Insight – Dr. Sidney Farber’s Radio Broadcast on the Future of Cancer Research and Treatment (March 8, 1951)

National Cancer Institute:  Lymphoma.  Lymphoma is the most common blood cancer in the United States. It is also another LFS cancer (November 2014)

ACSO Post: Metabolic ‘Reprogramming’ by the p53 Gene Family Leads to Tumor Regression. (November 18, 2014)  Certainly, further research is needed, but this is good news for those with LFS. This research indicates that specific treatments used to treat diabetes could suppress tumor growth, as delineated in the article (reference the p53 gene family), and may be potentially effective in treating certain cancers.

National Cancer Institute’s update: Leukemia  (November 2014)  Leukemia is another LFS blood cancer.

National Cancer Institute’s update: Genetics of Breast and Ovarian Cancer (November 2014)

Dana-Farber Cancer Institute’s Insight:  How does chemotherapy work?  (November 2014)

Dana-Farber Cancer Institute’s Insight:  Five things you need to know about stomach cancer  (November 2014)

National Cancer Institute has been reported that 22.6% of families with LFS have had at least one relative with gastric cancer with a mean and median age of diagnosis of 43 years and 36 years, respectively: Gastric Cancer in Individuals with Li-Fraumeni Syndrome  (July 2011)

A comprehensive resource for caregivers:  The National Caregivers Library

Caregivers need care, too: online resource for the care of caregivers

American Association of Cancer Research’s Cancer Today:   coping with chemo brain  (Fall 2014)

CancerCare’s educational resources: podcasts, publications, and people. See what they have for you regarding coping with side effects of cancer treatment.

American Association of Cancer Research’s CANCER RESEARCH Catalyst – Think before you drink the best known breast carcinogen, alcohol, and start prevention early: A Youthful Approach – Expanding the Reach of Breast Cancer Prevention.  (October 2014)

CancerCare connects with others in support groups for cancer patients, loved ones and people who have lost a loved one, led by oncology social workers:  support via telephone, online, or face-to-face.

National Cancer Institute: Lung Cancer Prevention (December 2013)

National Cancer Institute:  5 purposes of clinical trials. Which could work for you?  (February 2013)

Dana-Farber Cancer Institute’s Insight:  The discoveries of Drs. Li and Fraumeni and their research on genetics and cancer, eventually led to the best-known cancer susceptibility gene – BRCA.  20 Years After BRCA   (October 2014)

Cancer.Net: Colorectal Cancer and Treatment Options (September 2014)

Cure:  Integrative oncology – restoring balance, regaining control, Integrative Therapies Can Complement Conventional Cancer Treatments  (June 2014)

Huntsman Cancer Institute at the University of Utah on Adrenocortical Cancer – heredity risk factors include LFS.  (September 2014)

Dana-Farber Cancer Institute’s Insight:  Five Things You Need to Know About Glioblastomas. (August 2014)

Dana-Farber Cancer Institute’s Insight:  Five Questions About Vitamin D (August 2014)

Dana-Farber Cancer Institute’s CancerConnect is a comprehensive online community of cancer patients and their family, survivors, and health care professionals. You do not need to be a part of Dana-Farber to participate in this free resource. “Join the conversation,” and see how you can benefit.

Cure Magazine’s Lessons Learned:  Peripheral Neuropathy with Cancer  (June 2014)

Cancer Today: A New Look at Spirituality  (June 2014)

Dana-Farber Cancer Institute’s Insight:  LFS Association President Jenn Perry on Putting the Puzzle Pieces (of LFS) Together.  (June 2014)

National Institutes of Health: Are Clinical Studies for You? (January 2014)

Dana-Farber Cancer Institute’s Insight: What is a Phase I Clinical Trial?  (June 2014)

Dana-Farber Cancer Institute WEBCHAT: “The Latest on Breast Cancer Treatment and Research,” with Eric Winer, MD, director of the Breast Oncology Program in the Susan F. Smith Center for Women’s Cancers, Dana-Farber Cancer Institute. (May 2014)

Need help explaining LFS? MD Anderson Cancer Center’s Patient Education on LFS handout has been updated. (April 2014)

From the archives: Dr. David Malkin speaks on the surveillance of children diagnosed with LFS from The Hospital of Sick Children in Toronto. (2011)

Cure online magazine – “combining science with humanity.” Cancer patients, survivors, and/or caregivers can receive a FREE subscription for the print edition.

Cancer Today is published quarterly by the American Association for Cancer Research as a resource for cancer patients, survivors, family, and friends.

Dana-Farber Cancer Institute:  Chemotheraphy Related Neuropathy – Managing this Nerve Wracking Problem (August 2013)

The Cancer Killer by Sharon Begley on the p53 gene, emphasizing its groundbreaking discovery of its role in cancer (December 1996)





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!

Learn more...

LFS Awareness Brochure

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