International Women’s Day- LFS in WOMEN


Women with Li-Fraumeni Syndrome have close to 100% chance of developing cancer in their lifetime. About half of all these cancers develop before age 30 and about 50% of the risk is due to breast cancer. The risk of breast cancer by age 60 for women is 85%.  So, what’s a lady mutant to do?

Understand YOUR Risk.

Not everyone’s risk is the same. Meeting with a practitioner, ideally a Genetic Counselor familiar with LFS is a good way to get help assess your risk of cancer based on your mutation, family history and other factors. Understanding your risk can help you make screening and treatment decisions. Find a Genetic counselor at

Women with LFS tend to get breast cancer earlier than the normal population. The cancer risk in general is higher for certain cancers at certain age ranges.

  • 0-10 years- higher risk of Soft Tissue Sarcomas, Brain Tumors, and Adrenocortical Carcinoma
  • 11-20 years- higher risk for Bone Sarcomas
  • >20 years- higher risk for Breast and Brain Tumors

Know YOUR Body.

Just as one size jeans don’t fit everyone, neither do our genes- even within the same family. We do look at family history for trends, but we are all unique and rare and often our cancers are too. It’s important to not only do monthly self breast exams, but self exams. Know your body, what works and makes you feel your best and what doesn’t. Have any changes checked out by a professional. We usually follow a 2 week rule for lumps, bumps, and weirdisms- if it hasn’t resolved or gotten better in 2 weeks, it’s time to have a doctor take a look and go from there. Ignoring it doesn’t make it go away. We grow weird, not all of it is cancer. Just as you know what jeans feel the best, you know your body. If things are off or don’t feel right, it’s time to call and get an opinion of a clinician.


LFS is rare. You are even more rare. You get to make the calls on how you live YOUR best life. You get to make the calls about screening, about treatment, about your health. There are so many tough decisions in life, even tougher ones in dealing with Li-Fraumeni Syndrome. What to eat? How to avoid radiation? Should I have children? Should I have my children tested? What is that lump?

Learning Li-Fraumeni Syndrome

Learn as much as you can. Learn from doctors. Learn from reading. Learn from others. Learn about LFS. Learn about nutrition and radiation. Learn about cancer. Then tuck that knowledge away and hope you won’t need it and LIVE. Learn by living.  For You. There are many things we do not have any control over, but we can control us. We can’t control our feelings, we can control how we react to them. We can’t control IF we get cancer, but we CAN control how we navigate our risk. If the recommended screening is too much and adds too much stress to your life, finances, and sanity- talk with your provider. There are options. There is support.

Find your Tribe. Sometimes you can feel like you are on an island called LFS. You take trips to normal, but often are yanked back by screening, scanxiety, cancer. You are not alone. You are strong. Look at finding support as prophylactic action to prevent insanity. Your Tribe does not have to be LFS related(if you are looking for LFS support- please check out our support groups on Facebook. They are simply amazing). Find Support Here. Find what and who works for you.

The majority of our support groups are women. This represents not only the cancer risk associated with LFS in women, but how people deal differently. Although there are different risks associated with gender, coping is not age, gender, or cancer specific. Neither is living LFS.

More Reading on LFS:

LFS Gene Review:

Breast Cancer and TP53:

In Memory of D’Ana Reed. Founder. Mutant. Sister. Friend.


D and Court

D’Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as we worked to bring those living LFS together. D’Ana lived fully and completely and shared her positive energy and laughter with anyone she ran across from childhood friends, to chemosabes(chemo friends) to her mutant family. The way D’Ana lived is very much the foundation of Living LFS and refected in our core values: Community, Compassion, Respect, Integrity and Levity. D’Ana had brilliant ideas and was the first we’d go to when we needed ideas. She came up with the idea for our first T-shirt fundraiser- Have You Hugged A MUTANT Today?

D tre mills ramer mutant

She was the first to pack up and hit the road to visit a friend in need, her mutant family just gave her many more opportunities and these connections were so valuable, she wanted others to have the experience too. After many years of living with metastatic breast cancer, D’Ana passed away, as she lived, with the ones she loved most right there. We lost more than a mutant sister that day.


Courtney shared with us D’Ana’s words of wisdom and we know she’d want us to share them with you.


My sister and I have shared a lot of things over the years, but of all the things I could have possibly shared with her, a genetic disorder that makes you prone to multiple cancers certainly was not on the list. I wish this was one of the things I could have hidden from her so she couldn’t have it, like the “good Barbies” and other toys I used to stash in order to keep them from her clutches. If I could go back in time, I would much rather share those than share this. But we are here now together as Mutant Sisters and making the best of it. So I will share with you a few things that I have shared with her in hopes that you too will be able to find some bright spots on your journey.

Surround yourself with POSITIVE ENERGY.  A positive attitude and keeping company with positive people can and will get you through anything. Sure we all have bad days…we’re entitled, but try not to let them weigh you down.

BE SELFISH! Now is not the time for you to take care of the needs of others, they should be   reminding you to take care of yourself so you can be as healthy and happy as possible.

LAUGHTER is a daily necessity. Cancer is no laughing matter, but let’s face it…isn’t everything a little bit easier when done with a smile and a little bit of giggling?

LIVE life FULLY AND COMPLETELY. Be proud of who you are and the fact that you are a fighter. Keep trying new things, meeting new people, traveling and experiencing all that life has to offer.

-D’Ana Reed