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.

fannie-lemay-mom-fish-copy

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.

fannie-lemay-mom-scarf-copy

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.

 


LEAD- MDAnderson’s Li-Fraumeni Syndrome Education and Early Detection Clinic

MDAnderson recently announced the beginning of a clinic for patients with Li-Fraumeni Syndrome at their cancer center in Houston, Texas.  The Program is called LEAD- Li-Fraumeni Syndrome Education And Early Detection.  Due the risk of many cancers associated with LFS, the LEAD program offers a comprehensive screening plan to detect cancers as early as possible.  The LEAD has Adult departments(age 21 and above) as well as separate guidelines for children and adolescents(under the age 21).

You may be eligible for LEAD if you have a confirmed diagnosis of Li-Fraumeni Syndrome.
For Questions About LEAD  Contact:

Michelle Jackson, MS, CGC
1(713)792-6691

To become part of the LEAD clinic, a person will have to become a patient at MDAnderson and this can be done by calling their New Patient Line at  1(713)792-5410 and ask to be seen at the LFS clinic. If the person has not been tested for a germline TP53 mutation, but is at risk(for example if a family member is positive) they can have genetic counseling and get genetic testing through the LEAD clinic. If the person tests positive for the mutation, they will then be followed by the LEAD clinic and the screening guidelines recommended for them.

MDAnderson NEW PATIENT LINE
1(713)792-5410

Below are links to MDAnderson’s  recommended screening guidelines for Adults and Children with LFS. As always, you should consult licensed professionals to help you determine the right screening program for you.

LEAD Adult Screening Guidelines
LEAD Children Screening Guidelines

For more information about how the LEAD program came about and the direction it’s headed, check out the video below with Certified Genetic Counselor Michelle Jackson and Dr. Louise Strong who has been working with LFS families for over 30 years.

Link to MDAnderson VIDEO

VIDEO- Drs Strong and Jackson- Screening and LEAD Clinic