5 Life Lessons From People Likely to Get Cancer

by Andi Last, Living LFS Secretary & Media Relations – I am part of a group of people with a rare genetic condition called Li-Fraumeni Syndrome (LFS). You’ve heard of the infamous BRCA, “the breast cancer gene?” LFS is like BRCA on crack. Men with LFS have a 73% lifetime chance of developing cancer. For women with LFS, the lifetime chance of developing cancer is nearly 100%. LFS “core” cancers are breast, brain, sarcoma and adrenocortical, but LFS can cause any kind of cancer. Some of us get more than one kind, or even more than one kind at a time. It can also happen at any age, although half of LFS cancers happen before the age of 30. No, unfortunately, I’m not making any of this up.

As you can probably imagine, such sobering odds can give those of us with LFS a very different – and sometimes twisted – outlook on life. Part of that twist is that some of us lovingly call ourselves “mutants,” since LFS is caused by a mutation of the TP53 “tumor suppressor” gene.

Recently I asked the members of our private Living LFS online support group, “If you could give one piece of life advice to non-mutants or other “normals” what would it be?” Following are some of the insights from this LFS family of ours – people who currently have cancer, have had cancer, have lost family members to cancer, or have been diagnosed with Li-Fraumeni Syndrome, a.k.a. “BRCA on crack.”

Don’t Wait, and Don’t Take Time For Granted

Lif eLesson 1: Don't Wait, and Don't Take Time For Granted

Ilonka: When possible I try not to delay doing things that I love to do. Read about Ilonka’s experience at the 2018 LFS International Conference.

Nina: Stop waiting to do things, or go places, or to do something for you. None of us are guaranteed anything, and it will never be the perfect time to do what you want/need to do. 🤗

Jonathan: Life is a terminal illness – for everyone. Your life consists of two dates and a dash. Make the most of the dash.

Your life consists of two dates and a dash. Make the most of the dash.

Nadja: To not take time for granted. I’ve just known about my LFS for a few months (and have never had cancer) but I’ve started to feel like “you never know what or when something might happen”. I try to get out and do fun stuff more than before and don’t think as much that “I can do that later”. Better to enjoy life while I can and my body is healthy! 🙂

Sonja: Find your peace and happiness inside yourself, not outside. Stop thinking: if I stayed healthy, if I became a mum, if I bought the house… In the end, it is not a children, a job, a fiancé, not even your health, that determines how much meaning, peace and happiness you have in your life. It is captured deep inside yourself. All you need, you can find inside yourself. Saying this, I know it is a big challenge to come closer to this source…I am failing on a daily basis, but hey, as long as I breathe there is still a chance to get there!

Prioritize Who You Spend Time With

Life Lesson 2: Prioritize Who You Spend Time With

Ilonka: Although it’s not possible to avoid, I try as much as possible to stay away from people with negative energy.

Emily C: To go ahead and cut the toxic people out because shitty people are just that, shitty. And they’re not going to change. So it’s better to go ahead and cut your ties before something major or life altering happens. There’s nothing worse than thinking you can depend on someone only to find out they simply don’t care, and a lot of times we know beforehand that we can’t depend on them but we expect that maybe they’ll change. We shouldn’t be surprised, but we still are. Relationships of all sorts should never be one sided. And we try to make excuses as to why we can’t cut them out. “But she’s my mother,” “but we’ve been best friends for 20 years,” “but they’re going through some really hard times right now”.

Be Genuinely Supportive: Just Listen

Life Lesson 3: Be Genuinely Supportive. Just Listen.

Andi: Many people don’t want to hear about real problems – or aren’t equipped to hear about them. Efforts to be helpful and supportive can do more harm than good. Since diagnosis I understand the phrase, “Everyone you meet is fighting a battle you know nothing about. Be kind. Always.” better than ever. Sometimes, genuine support simply means being forgiving, holding space, and only giving advice if it’s requested. 

Be Kind. Always.

Julie: I don’t know how to answer this. What is normal? A friend of mine died almost 2 weeks ago from colon cancer, she battled it for 2½ years. She wasn’t a mutant, but she’s the one who battled and died. I think she should have been the one to give me advice on life 😢

Mandy: My child is not defined by this. She is an amazing girl who is going to do amazing things and I am the lucky one because God chose me to be her Mommy.

Ru’a: Stop talking about cancer (unless you or someone you know is going through it, but too often its used in conversation casually)!!! Stop recommending me shows/movies about it!

Read What People With Li-Fraumeni Syndome (LFS) Want You To Know About LFS.

Samantha: ‘At leasts’ are not helpful. You can at least stuff in your own life, but people telling you at least is not helpful. For example, at least you know, or, at least you are not sick right now (yeah I may have survived the last one, but chances are more is coming, not if, but when) or at least one (or two) of your kids don’t have LFS (like it makes it ok that one or more do? Seriously?) or whatever, nothing takes away from the dark shadow lurking, ready to pounce. This life is real, it can be hard, and the mental load is much more than you can imagine. Please don’t at least us!!!

Greg (President of Living LFS): As someone without LFS, I’ve learned to “listen”. You don’t have to say the right thing, or anything at all, to support someone. Just be there. Read why Greg is a part of Living LFS.

Have Gratitude, And Love As Much As You Can

Life Lesson 4: Have Gratitude and Love As Much As You Can

Ilonka: The clichés are true, since cancer arrived in my life, I enjoy the little things in life so much more. I don’t take anything for granted, and I love and live more intense, in a good way, most of the times. Oh, and I hardly do material gifts anymore with the people that are most dear to me, I’d rather spend time with them instead.

Andi: The most important thing I have learned from having LFS, and having breast cancer twice, is to have gratitude, every single day. There is so much to be grateful for. Even the small, mundane, basic things. They can be gone so quickly. Appreciate them always. Read Mutant Vs. Monster: Andi Last’s Tale of Li-Fraumeni Syndrome

Andi Last: Gratitude for Every Day

Andi: Grateful for every day.

Monica: Treasure every moment you have with your family and friends. Don’t take life for granted, everyday is a blessing. Make sure you always say “I love you” to the ones that you love because those little words make a difference. Smile even if you feel like you don’t want to on some days. Monetary things are not as important as you think. It’s the small things, the quality time, that counts in life.

Andrea: Enjoy life, regardless what curve balls may be thrown your way. If you think you have hit rock bottom (ie. Financially) just know the sun is still going shine tomorrow and things are going to get better. Here is a good saying to live by, mutant or non mutant:  Yesterday is history, Tomorrow is a mystery, Today is a gift, That’s why they call it the Present.

That's Why They Call It The Present

Jenny F: If there’s anything I have learned, it is to continue to “look up.” I learned that in Toronto first by having to look up to see all the attractions and beauty it has to offer (my first time in a big city, so i had to teach myself to look up). I also realized while I was there that “looking up” refers to many aspects in life and with cancer: keep your head up, look up to God, look up to the clear beautiful blue sky, and last but certainly not all, look up and over and through the clouds, there is always something positive behind them. (Having an emotional day today because of my bone scan, so I had to remind myself of my own advice.)

Jenny in Toronto

Jenny in Toronto: look up!

Fannie: I don’t think people can learn from other people’s experience. This “enjoy every moment thing” happens only once someone tells you you’re gonna die, I think. I don’t think it can be passed on; I can barely apply it myself. I would say just love as much as you can. Love and give and feel and share and touch and breathe and observe and laugh and then love a little more. Beauty in an Unlikely Place: Fannie Remembers Her Mother’s Breast Cancer Journey. Also read from Fannie: some days, we just eat cake in bed to give ourselves a mental break

Linda H: Love till your heart aches.

Be You, Sparkle and Laugh

Life Lesson 5: Be You, Sparkle and Laugh

Rowena: My advice is just remember you can only be you. Don’t compare your life journeys to anyone else’s, as #1, you have no real idea what theirs is, and #2, yours will never be the same. We are all unique for a reason! ☺

Catherine: Be your TRUE self. There is not enough time or energy to apologize for owning your truth (unless you are an utter ass, then find a hardware store and buy some duct tape). Be and DO YOU! Who cares what makes Mr. or Mrs. Whomever happy. As we know all too well, this body is only borrowed for a bit. Use it for good and have fun! 

Brandy: To sparkle even in the darkness! Be your own light and light the fucking world UP!

Sparkle!

Also Brandy (heeding her own advice to sparkle!): Don’t half ass anything. Whatever you do, use your full ass.

Don't half ass anything. Whatever you do, always use your full ass.

Jennifer M: Find the humor in every situation. You may have to look hard, and it may be a bit twisted, but find it. And Laugh Hard!

Jennifer M. making the whole room laugh

Jennifer M. making the whole room laugh.


Kortne’s Story about Learning to Live with LFS

“If you were me what would you do?”

Working as a nurse, I have been asked this question so many times. It wasn’t until I was the one asking this same question, that I could truly identify with the countless number of emotions hidden behind it. Behind this question is so much more,

it is an unsure where to start feeling,

a feeling of being scared beyond belief,

it is anxiety,

it is needing assurance,

it is searching for empowerment.

This question is the first step of processing a cancer diagnosis that is so unfair and so unwanted.

Dealing with cancer and receiving an unwanted diagnoses is a foreign world.

Understanding the disease process

awaiting pending pathology reports and diagnostic testing

preparing for ultimately bad news.

For me, this foreign world has become too familiar. Cancer chose me not once …not twice…not even three times. FOUR. Four times cancer chose me. I never chose it or anything that comes along with it! I hate cancer. But Guess what? I’m still living, I’m still enjoying my life, I’m still fighting.  As much as I hate to admit, cancer taught me so much about myself and about life. It’s easy to forget how precious being alive really is!

My first battle with cancer was at age 9. I had a rare type of sarcoma called a liposarcoma. After many appointments, tests, and scans the team of doctors recommended surgical resection. 2 surgeries later, I was deemed cancer free. Going through this experience at such a young age made me grow up faster than others my age and process thoughts that children should not have to worry about. That was my first cancer; it was also my first cancer life lesson. One that had a lasting impact on my life.

My first cancer was the “ah-ha” moment that inspired me to want to become a nurse. I like to think that this was cancer’s way to open my eyes, my heart, and my mind to see that I needed to help others through medicine. If it wasn’t for cancer would I still have dreamed of becoming a nurse to help others like I was helped? No one knows.

15 years later I received my 2nd cancer diagnosis, this time melanoma. I was guilty of using the tanning bed and laying out in the sun as any teenager does. Did I think it would cause a minor sun burn at times? Yes. Did I think it wound cause melanoma, the deadliest type of skin cancer there is? Absolutely not. I wish I knew then what I know now!

The plan of attack this time was surgery with a wide local excision to remove the cancer and check my lymph nodes with a sentinel lymph node biopsy.  Then they had to cover the gouged out area (think a putt-putt golf course hole) with a skin graph. I felt fortunate that the cancer had not spread to my lymph nodes and no further treatment was necessary. My prayers were answered and I was blessed. My life resumed, I got married, my career advanced, yet there was always a small cloud of fear hanging over me that this cancer would return or metastasize to other areas of my body.

I just could not have predicted the hard hitting craziness 3 years later in 2017. I got my flu shot the second week in October.  1 week later I developed sudden numbness and tingling in my right arm and hand, the same arm as my flu shot.  Of course I downplayed it and tried to convince myself it was a reaction to the flu shot. Nurses have a bad habit of self persuasion. It continued the next day and on the 3rd day, while I was driving to work I went to press the brake and my right leg wouldn’t move. I knew I could no longer downplay this and convince myself it was from the flu shot, it was in my best interest to see my doctor immediately.  Deep down in my heart I knew it was more.

I was scheduled for a same day MRI. As a nurse, I knew all of the symptoms I had suddenly developed over the course of 3 days pointed toward some kind of neurological diagnosis. I refused to accept that possibility. As the MRI techs locked the “bird cage” over my head, the  fear of what the MRI might show hit me all at once. I do not remember a time in my life that I had ever been so scared. The tears flowed as I was slid into the machine. I just did not want to know, but needed to know so bad all at the same time.  I was walking out of the imaging center, my phone rang and my heart dropped.

“I am so sorry I have to tell you this but the MRI showed that you have a brain tumor.”

I had so many emotions,

so many questions,

so many thoughts,

yet I was numb and spaced out.

Every bit of my medical knowledge went away and I was left with nothing not say. I needed time to absorb and time to think.

That same night as my husband and I laid there attempting to sleep, I must have had a strange feeling because I said to him in my serious patient education nurse voice “do you know what to do just in case I were to have a seizure? Not that I’m going to or anything but just in case I were to ever down the road – just roll me onto my left side and call 911.” 3ish hours later he did just that. Things moved so fast from there.

Less than 2 weeks later November 9, 2017 . I was anxiously rolling into my awake craniotomy. I knew it would forever change my life. The outcome was uncertain. I was as still and calm as possible because I knew that on the other side of the sterile drape was the man my husband, parents and I had trusted to cut into my brain. My brain!!! So crazy to think about! As the hours went by, I was constantly communicating with the physician’s assistant who was under the drape with me, evaluating my neurological status the entire time. He never left me and I was not fearful because I wasn’t alone under there.

Flash card after flash card and a series of zings and zaps to test for feeling in my limbs and it was finally time for the intra-op MRI. This showed a small amount of residual tumor and my surgeon elected to go back in after it. At this point, he said I would be put to sleep for the last part of the surgery and would wake up in recovery. Call me crazy, but I asked to be allowed to stay awake for the remainder of surgery. My thoughts were- if I was asleep I would not be able to tell the surgical team if I had any “weird feelings or sensations.” I was the only one who knew what I was feeling in my own body and I wanted to make sure I did everything in my power to get the best end result! It was no surprise that I was the first patient to ever make this request. Maybe it is my interest in the medical world or maybe I’m just crazy.

Living with a Brain Cancer diagnosis turns your world upside down. There is no cure. The pathology of my tumor came back, Astrocytoma Grade II. With this diagnosis and it being my 3rd primary cancer, I was referred for genetic testing. Genetic Test results came back showing that I have a condition called Li-Fraumeni Syndrome (LFS) which is linked to a mutation in the TP53 tumor suppressor gene. People with this mutation have a much higher risk of developing cancer or multiple cancers in their lifetime. Mission accomplished, I guess.

I previously thought that I had to be the unluckiest human on the planet. The diagnosis helped make sense of the cancer, finally an answer. LFS is not only emotionally overwhelming but comes with an overwhelming amount of MRIs and other screenings. This caused a new condition- extreme “scanxiety” being fearful of what may be found and what possibilities I could face next. I  completed the recommended imaging and all that was left on the to-do list was an EGD and a colonoscopy.  I was not particularly worried about either since the MRI of my chest, abdomen, and pelvis showed no signs of malignancy. I figured I had nothing to worry about, right?

After waking up from the procedure I was told the doctor would come talk to me in a small room outside of the recovery suite. “EGD looked great, but there is an area in your descending colon that I am very concerned is cancer.” A phone call a few hours later confirmed that I did indeed have colon cancer. The news itself was terrible and the fact that I had been diagnosed with brain cancer 4 months earlier made it almost impossible to process. I was reminded again how much I hate cancer.

In April 2018, I had a a left colectomy and lymph nodes removed. The pathology returned as stage 3b with lymph node involvement. My medical team’s treatment plan for me is 12 cycles of FOLFOX chemotherapy.  My personal life plan remains the same as always, to be tougher than cancer, any and all cancers. I want to be the light to others and share my story to show that even though sometimes cancer tries to suck the life out of us, we can not let it.

Life can still be wonderful in countless ways! We are blessed in so many ways.
It’s hard to figure out how exactly to plan like you will live forever while living like you are dying at the same time. I do not know what my future holds and the unknown is always the scariest part! Being only 28, this is an “adulting” situation I still have to figure out. The one thing I do know is that LFS and cancer has changed my life and the lives of my family and those who love me. I have faith in God’s plan for my life and that good will come from all of the bad.

I stopped thinking I have to have a 5 year plan or a 10 year plan and learned to just live.

To make the most of every day.

To do the things that make you happy.

To spend your time with those that mean the most.

To find the goodness in tragedy.

To go on the trips.

To take lots of pictures.

To cherish making memories.

To love all the sloppy dog kisses.

To eat macaroni and cheese for breakfast.

To try new things. To learn new things.

To be kind to everyone you meet.

To right all wrongs.

To be best person you can be. And to share my story to help someone else .