Using Family Loss to Sing Awareness of LFS for Mo and Kerry

 

My name is Kathy Higgins. I have lost 4 family members to LFS.

 

lfs-bio-minus-photos-just-pics

KERRY

Kerry was first diagnosed with cancer at the age of 12, an osteosarcoma in her thigh. She received chemo and had multiple operations on her leg. Kerry also had several small cancer issues over the years, skin spots on her face and back. She was not diagnosed with LFS at the time because the year was 1995, and LFS was just being discussed.

KerryShe was 30 years old when she passed away in 2014. She had a recurrence of breast cancer from 2005. Without the LFS diagnosis, her breast cancer would not have been detected due to her young age. She had a double mastectomy in 2006 when precancerous cells were detected in her breast. Kerry knew there was a 93% chance those cells could turn into cancer. About 1% of breast tissue was left after the surgery and that is where the cancer started to grow, fueled by pregnancy hormones. Many LFS breast cancers are hormone driven cancers. Kerry was the mother of 2 little girls, ages 3 and 5. She had a loving husband of 8 years.

MO

Maureen.In 2002, our second daughter Maureen who was 18 years old at the time, developed a stage 4 adrenocortical carcinoma before we even knew she was sick. At this time, doctors decided it was time to look further into our family history. Maureen had surgery and chemo, but did not respond well to chemo. We lost her within 4 months.

 

FINDING LFS

Upon researching our family history, we discovered my husband’s dad passed away at age 37 in 1966 from a brain tumor. In 1993, my husband’s sister died at age 32 after battling 3 different cancers, Breast cancer, cervical cancer and leukemia over 2 years. Now LFS was discussed as a possibility and Kerry was tested and positive for Li-Fraumeni Syndrome. My husband also tested positve, but not until 2015, until then we presumed he was positive since Kerry was.

My husband Jim did not present with his first cancer until the fall of 2014 with a sarcoma in his arm. The sarcoma was treated with radiation prior to surgery in 2015. All went well until another sarcoma was discovered in his thigh in May 2015. The sarcoma was removed with no recommended follow up treatment by Dana Farber Cancer Institute. We are scheduled to go back to DFCI in November for follow up and to check for new cancers.

MAKING A DIFFERENCE

As a wife and mother, I was beside myself with grief and terrified my husband was going to suffer the same fate as Kerry, Maureen, his dad and sister. I felt so helpless to stop this disease. I decided to become an advocate for LFS awareness and raise money for research. I want to be able to help identify other families that have the same mindset we had, in that we were just an unlucky cancer family. That changed when our LFS diagnosis was found. LFS Awareness is key to survival. Many doctors do not know about LFS and are missing key signs in families that could be affected with this mutation. My goal is to travel to all of the doctors and medical facilities in my surrounding area and try to educate them about LFS. Then they can help LFS families stay healthy. Currently we have to travel 6 hours one way just to meet with a doctor that is familiar with LFS and can help us follow a healthy protocol to screen LFS patients for early signs of cancer. In this day and age, this is just not acceptable. So, in September 2016, I travelled to California to attend a rare patient advocacy training conference, so I can be a better, more effective advocate for awareness and fundraising for the LFS community.
I can never bring back my daughters, father-in-law or sister in law, but if I can even identify one family that could be saved from the heartache our family has endured, it will be worth it.

MO SONGS FOR KERRY

Mo songs for Kerry Hiigins fam

I started an organization called Mo Songs for Kerry.org with a couple of my girls’ friends and family. Every year we host a large fundraiser in upstate New York. Our 4th Annual event will be July 29, 2017. We use this event to raise awareness for LFS but also to raise money for research. Local news stations helped us do this for our past event, we had 4 different stories run in the local TV market. We are very grateful for the support our local media has given ups and the awareness of LFS. A portion of the proceeds also go to a local hospital run guest home that caters to families with loved ones in the hospital and patients who are going through long outpatient treatments.

Li-Fraumeni Syndrome is a very difficult thing to live with. You are always waiting for the other shoe to drop and you feel like the boy who cried wolf if you go in for every lump, bump or pain as if it is cancer returning. It makes living a normal life more difficult but at the same time you learn to appreciate every day you are given. If you are diligent with screenings, you can live a normal life.

LIVING LFS

We can not let living with LFS cause us to not live life to the fullest. WE will do our best to live and honor our girls and their memory by living life as healthy and happy as we can. We know this is how they would have wanted it. Kerry lived with LFS for 10 years and got married, started a business and had 2 beautiful healthy non mutant little girls. She carried firewood into her house 3 short days before she died and was entertaining all the people in her hospital room mere hours before she passed away. She lived life to the fullest even with the tremendous burden on her mind. I am very proud to be the mother to these two special ladies and I hope to make them proud with my efforts to make a difference. I will be a warrior beside my husband and do everything I can to help him be screened carefully and get treated right away if any signs of cancer appear.

I am very grateful for the LivingLFS.org website and support group where we can connect with other families going through similar problems. We are all stronger if we support one another and share our trials and tribulations as well as our joys of negative test results and positive treatment outcomes. Before discovering this website we did not know a single LFS family. Hugs and Prayers to all of you out there dealing with LFS. We are stronger together!


Genetic Counseling in LFS.

What is Genetic Counseling?

Genetic Counselors are a group of professionals with a Master’s level degree who work in clinics, hospitals, public health and private practice. According to the information by the National Society of Genetic Counselors at NSGC.org:

 

Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates:

  • Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence.
  • Education about inheritance, testing, management, prevention, resources and research.
  • Counseling to promote informed choices and adaptation to the risk or condition.
    National Society of Genetic Counselors, 2005

In the case of LFS, the disease is inherited cancer predisposition. Cancer Genetics are very complicated. There are physical, social and emotional impacts when living with a genetic condition like Li-Fraumeni Syndrome. Genetic counselors have special training that helps them support patients, evaluate the risks of their condition, and get the best care for their rare situation.

National Society of Genetic Counselors. “What is A Genetic Counselor”. Online video clip. You Tube. December 2, 2015.

 

What Do Genetic Counselors Do?

  • See Patients
  • Take Detailed Family History
  • Help with Decision Making
  • Provide Emotional Support
  • Lots of Phone Calls
    • with patients
    • With labs
    • with insurance
    • With healthcare providers
  • Order Genetic Testing
  • Follow Up
  • Help Discussions with Family
  • Research

Many patients with LFS are referred to genetic counselors due to a personal or family history of cancer that follows any of the criteria for Li-Fraumeni Syndrome. They are referred by general practitioners, oncologists or specialists who recognize there might be a hereditary risk. Not all providers recognize LFS as a possible diagnosis and many patients do not receive valuable genetic counseling services before or after genetic testing that could help them better understand the disease and manage their care. A genetic counselor will take a detailed family history to evaluate if genetic testing for a TP53 mutation is appropriate. They can order the actual test and make sure all questions about the test, what it means, how it’s done and follow up are covered. Genetic counselors also can help address many of the complicated emotional aspects that patients feel when considering testing, if it is right for them and their family and how to discuss such a sensitive topic with family members. Genetic counselors will go over the genetic test results, risk management, screening options and often help coordinate with insurance, labs, and healthcare providers. They are an invaluable resource to those living LFS.

Why is Genetic Counseling Important for LFS?

Genetic counselors are an important part of any LFS Healthcare team and are vital to patients’ understanding of the syndrome, risk and treatment as well as helping with the very difficult emotional responses of finding you may have an inherited cancer risk.

According to an article in Genes & Cancer in April 2011, Dr. David Malkin expresses the valuable need for counseling as part of a multidisciplinary LFS Healthcare Team,

The multidisciplinary approach taken by several groups involving pediatric and medical oncologists, clinical geneticists, genetic counselors, psychologists, and ethicists in establishing cancer genetics clinics and programs provides a novel mechanism that should be considered standard to optimize care of these families and advance our understanding of the role of genetics in the etiology and management of LFS.

Above the medical aspects, psychosocial implications of testing and living with LFS are significant. Counselors have the knowledge and training to help families address very complex and recurring issues related to multiple diagnoses of cancer, stress and grief. From an article in Oncology Practice by Vogel and Shannon:

The nature of the disease leads to unique psychosocial implications, as LFS family members often experience many cancer diagnoses and deaths throughout their lifespan. Many parents will have to deal with a child’s diagnosis, and many children will deal with a parent’s diagnosis. It is likely that these repeated experiences of grief and stress pose a significant psychological burden.

 

Ambry Genetics. “Understanding Your Results- TP53”. Ambrygen.com. 23 August 2016.

Knowing TP53 status can impact lifestyle, healthcare, family planning, screening and treatment choices. These issues can be complex and personal. Genetic counselors are wonderful resources to help navigate the tricky minefield of LFS.

How Do I Find a Genetic Counselor?

If you have been diagnosed with LFS, tested for LFS or are considering testing for LFS, genetic counseling is a vital part of the process. If you have not been referred to a genetic counselor, you can look for one locally. Genetic counseling is generally covered by insurance, although it is a good idea to check with your provider first. Counselors work in a variety of settings and do provide different services. Finding a counselor who specializes in cancer genetics is useful when being seen for LFS.

The National Society of Genetic Counselors (NSGC.org) has a Find a Counselor Tool to assist you in finding a counselor in your area:

NSGC FIND A Genetic Counselor Tool

If you have LFS and have not yet seen a Genetic Counselor, there are institutions that are familiar with LFS and are a good place to start to get information.

A few Cancer Genetics Programs Familiar with LFS:

NIH Division of Cancer Epidemiology and Genetics

Dana-Farber Cancer Genetics

MD Anderson Clinical Genetics

Huntsman Clinic Family Cancer Assessment Clinic

In Canada:

Canadian Association of Genetic Counselors

In Australia/New Zealand:

Australasian Society of Genetic Counsellors

 

 

 

References

About Genetic Counselors. (2016, August 22)  http://nsgc.org/p/cm/ld/fid=175

Malkin, David. “Li-Fraumeni Syndrome.” Ed. Arnold J. Levine. Genes & Cancer 2.4 (2011): 475–484. PMC. Web. 22 Aug. 2016.

Vogel, Kristen J and Kristen Mahoney Shannon Genetic Counseling and Testing for Li-Fraumeni Syndrome: The Psychosocial Implications  Oncology Genetics. November 2009: 507-513. http://www.oncologypractice.com