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.

 

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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!


Sluggin’ it Out With Sarcoma: Brandi’s Story

Brandi was a young woman about to embark on the crazy journey into parenthood when she was sideswiped with a rare cancer diagnosis. Sarcoma. Only about 1% of all cancers are sarcomas. Sarcomas can be found in any connective tissue, bone, blood vessels, fat, muscles or nerves. Many sarcomas(like Brandi’s) present as a painless lump but as they grow they can push on nerves and cause pain. LFS increases the risk of growing a sarcoma and it’s important to pay attention to any lumps or bumps that grow or change and have them looked at by a physician. In Brandi’s case, having a sarcoma and breast cancer at an early age led to the recommendation that she be tested for LFS. She was gracious enough to sit down with us and tell us a little bit about Sluggin’ it out with Sarcoma. 


How did you find your sarcoma? 

In 2009, at the age of 29, I thought I had an ingrown hair on the my right thigh. I was around 5 months pregnant with my daughter Brooke and kept putting off going to the doctor because I thought it was nothing. 

How did you find out it was a sarcoma and not just an ingrown hair? 

I made an appointment to get the small bump lanced, thinking it was just an infection but when he cut into me, he pulled out a golf ball sized tumor. I got that dreadful call a week later and it was one of the most horrible things I ever had to hear. I had a Soft Tissue Sarcoma. 

What went through your mind when you heard soft tissue sarcoma?

I had never heard of sarcoma before I was told I had one. First thing that went through my mind was that I didn’t want to die. (Google can be the devil lol). I went to see an awesome Dr, his name is Dr Goodman, he made me feel I had nothing to worry about. He made me an appointment for my re-excision and thankfully everything came back clear. He had me doing CT scans and xrays. First year was every 3 months then every 6 months. 



A lot of sarcoma survivors have mixed feelings about their scars, how do you feel about yours?

At first I wouldn’t wear shorts, but now I am proud to show it off. I think I grew up a little and realized it could have been worse than just a scar. 

Do you have a family history of cancer? 

My father passed of lung cancer. We didn’t know about LFS then, so we never knew if he was positive. Genetics thinks it probably came from his side of the family, but we just don’t know. I have an uncle who had prostate cancer(cured) and is being treated for throat cancer this year. My grandfather had prostate cancer which was cured, he lived to be 86. My grandfather had brothers and sisters that passed from cancer, but I don’t know specifics. 

How did you find out about LFS? 

I didn’t know of LFS and never heard of it until my breast cancer diagnosis in 2014, my doc had me have genetic testing because of second cancer in so few years of each other and how young I was. 

Has being diagnosed with LFS changed how you view things? 

Yes, I look at everything differently for not only myself but my son, my younger sister, and her son. I always used to make fun of my sis for being a hypochondriac, now I’m the hypochondriac LOL. 
 
Don’t ever overlook the little things, I thought I had an ingrown hair on the side of my leg and kept putting off going to the Dr because I thought it was nothing.


How do you Live with LFS? 

I just accept the fact that it is what it is and I’m fortunate enough to have found out about having LFS so I can be screened and followed by doctors on a regular basis. 


Thank you so much Brandi for sharing your sarcoma experience with us! Do you want to share an experience or your story of Living LFS with others? Contact us at LivingLFS@gmail.com