Beauty in an Unlikely Place- Fannie Remembers Her Mother’s Breast Cancer Journey

Fannie learned some very powerful lessons from her mother through her breast cancer battles. She learned about self awareness, how to advocate and how she chooses to live despite living with LFS.  Thank you Fannie for sharing your memories of your mother and her strength with us.

 

My mom never knew she had Li-Fraumeni Syndrome. I was the first one to get genetic testing done.

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Fannie’s mom. One of her favorite pictures of how she lived.

My mom died of breast cancer when I was 21 years old; she was 45. She fought a great 10 year battle. Four times she had breast cancer. She just thought she was the unluckiest person in the world. But then again her family was almost all gone, killed by different cancers. All pretty young too.

 

AWARENESS:  Know Your Body

My mom always said it was important to know your body. She touched herself a lot(not in a weird way) and encouraged us to do the same. So when she felt a little lump in her left breast, she knew it hadn’t been there for a long time. She got worried and off to the doctor she went. I’m not sure how diagnosis worked back then, I think now doctors are way more aware that breast cancer can hit you pretty much at any age. Her doctor simply told her not to worry about it, that it was probably calcifications and to come and see him in six months.

ADVOCACY: Knowing What is Right for You

That doctor had no idea what he was getting himself into. My mom wanted a biopsy and she wanted it ASAP. The poor doctor started to argue with her that it was really overkill and that she should wait. My mom told him in no uncertain terms that she would handcuff herself to his desk and call the media if he didn’t arrange the biopsy right then and there. The doctor finally agreed and scheduled the biopsy with the proper department.  That’s how my mom discovered for the first time she had breast cancer.

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Sadly, I remember very little about my mom’s journey through her illness. I was young. I didn’t grasp what cancer could do. After all, breast cancer was an “easy” cancer, right? That’s what they told us anyway. I was also out of the house for her last two breast cancers, the harder ones. I remember one thing about my mom’s fight with cancer: her self- advocacy.

 

LIVING: Knowing How You Choose to Live

Did those six months change anything? We’ll never know. I like to think that her tenacity to get the biopsy allowed her to see her 5 year old daughter grow to the age of 15. Mostly, I think it allowed her to start her Li-Fraumeni journey with confidence and a sense of power over what was happening to her. Cancer can be so scary, being confident and self aware can greatly help one heal. My mom cried very little during her fight against cancer. I like to think that it was because she felt strong and at peace with what was happening to her.

After 10 years of off and on battle, my mom decided she was done with all of it: the chemo, the doctors, and the hurting. She finished her journey like she had started it-in control. She made the transition beautiful for us. She found an amazing hospice house where all the nurses and doctors could be qualified as angels. And she went, pretty peacefully. She left me, the only heir of her mutation with the strength to fight for what I want and the power to not let cancer rule my life. She was happy, even in turmoil. I wish to be happy too.

 


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!