Being LFS positive means you HAVE a mutation in the p53 tumor suppressor gene. That means all your cells have one copy of this broken gene. Every cell has 2 copies of each gene- so for awhile, your other copy works overtime to fight off mutations- from the sun, from chemicals, from radiation or any other force that causes damage to cells.
Being LFS Positive means you constantly have cancer looming over your head. Being LFS Positive means you are probably an expert on cancer. Being LFS positive does not mean you will absolutely get cancer. Being LFS Positive means you are a fighter. Being LFS Positive means you were born a survivor. Every day with LFS is a day of survival, some days are harder than others.
Negative for LFS.
Being LFS negative means you do NOT have the mutation in the p53 tumor suppressor gene. That means when a blood test was performed, the spot on the p53 gene they tested for a mutation did not have a mutation. There are many spots that could be mutated in LFS. Families with long histories of LFS and cancer sometimes know where their mutation is. Sometimes they meet many of the LFS criteria, but the mutation can't be found or they have something docs call LFS-like. Sometimes a person can be mosaic- which means only some of their cells have the p53 mutation and not all of their cells do.
Being LFS Negative can be a relief. Being LFS Negative doesn't mean you don't have or won't get cancer. LFS Negative means you may have a lot of the LFS problems and no genetic test to prove it. LFS Negative means you might feel guilty because you have loved ones who are positive.
Living with LFS
Whether you are positive or negative, scans and tests are a part of life when you have a history of cancer. This is another time you are hoping for negative. Negative scans means there is no evidence of disease- our friend NED. We often think of negative as being bad- but negative means not having- and in the case of scans like MRIs or CTs and Ultrasounds- nothing out of the ordinary. Positive findings mean there is something else that has to be investigated. Most scans cannot tell you if it is cancer- a good radiologist can give you their best guess- but the only way to tell if a lesion or shadow on a scan is actually cancer is to have a biopsy or sample taken from it.
Positive attitudes. It is tough to stay positive when the LFS beast surrounds you. It is completely normal to feel negative. It is overwhelming and daunting to face scans and the threat of cancer whether it's your first time or your 13th. It's ok to feel down. It's ok to feel overwhelmed. Sometimes it helps to let yourself feel it- throw a pity party- but all parties must come to an end. Then it's time to pick up the attitude and get back to the fight. Being positive doesn't mean you like what's going on or are in any way Ok with having to face cancer. Being positive doesn't mean you even have to accept all that comes with having LFS. It just means you make a choice to find the positive side of a negative situation. Sometimes it's extremely hard to find the positive side when you are surrounded by cancer and hurt and loss. That is when you need to surround yourself with people who understand and can help lift you up. Sometimes writing in a gratitude journal daily helps. Another thing you can do is to do something nice for someone else in need or set a goal for yourself. Reward yourself for milestones- whether it's a day without crying or getting through a tough procedure. You can write Thank You's to those who have helped you or made your journey easier, funnier or just made a difference. Sometimes it is just feeling sun on your face or enjoying an afternoon coffee. If all you can do is say a prayer or meditate, then do it.
When you feel negative, DO something positive. You don't have to run a marathon or fund an entire research project. Just take a small step towards finding the positive in a negative situation and not only will it benefit you, it will benefit those around you. Then you become the person lifting others up who are struggling. That's what it's all about. That's being LFS Positive.