According to Cancer.net, the website of the American Cancer Society, "Cancer is a group of diseases that can cause almost any sign or symptom. The signs and symptoms will depend on where the cancer is, how big it is, and how much it affects the organs or tissues. If a cancer has spread (metastasized), signs or symptoms may appear in different parts of the body." More information on general cancer symptoms can be found at the website: www.cancer.org
With LFS, cancers can appear anywhere in the body despite being known for it's "core" cancers in the adrenal gland, brain, breast, and soft tissues. Signs and symptoms can appear in children and parents are often told how unlikely it is that their child has cancer. Many times LFS adults seek multiple opinions because they feel that something is off. If you are ever unsure of a change, a sign, or a symptom- it is always best to get a professional's opinion. If you are dismissed and still feel something is wrong, get another opinion. I have been told more than once that a lump is just a benign lipoma or a benign something or other. Some were and some were absolutely not benign. It is important to know your body and notice changes.
-Cough or Shortness of Breath. I'm not talking about the "I just ran around like crazy" shortness of breath. It's usually noticing you are huffing and puffing during an activity that doesn't normally wind you. A workout you normally complete seems to exhaust you, going up stairs, walking to the store. If you notice it feels like you can't breath, pay attention. If it happens more consistently- get it checked out. A simple chest Xray can reveal possible infections or tumors. If you notice a cough that doesn't seem to go away and isn't paired with a runny nose, itchy eyes or another sign of infection, give it a couple weeks. If the cough is paired with shortness of breath or chest pain have it checked out and quickly. A cough is a natural way for your body to say- Hey! Something's not right. But a cough that goes on and can't be explained is your body trying to get your attention!
-Unusual or changing lumps, bumps, spots or moles. Sarcomas are a hallmark of LFS. They grow in bone or any soft tissue. That means anywhere. It is also normal for people to have benign lumps. But LFSers are by no means normal. Many will tell you that they had a lump and it just didn't feel "right" or that multiple doctors told them "it's just a lipoma". It could be "just a lipoma" and hopefully it is, but when we have a propensity to grow angry sarcomas, any lump or bump that leaves you feeling uneasy needs to be checked out. As a good friend of mine says "when in doubt, cut it out". No one likes or looks forward to surgery, but when you have a faulty tumor suppressor gene, even little benign growths have the potential to harm you down the road.
-Aches, Pains and Unease. Any ache or sharp pain that cannot be explained and lingers should be checked out. Sarcomas can impinge on nerves- but overall aches are your body trying to tell you something is not right. Maybe you are just sleeping wrong, maybe you spend too much time on the computer or prior surgeries may leave you a little out of whack. Either way, pain adds stress to a system and the body cannot fight cancer effectively when stressed. It is best to get pain checked out and managed. Physical therapy and massage as well as acupuncture are great ways to manage pain. Many LFSers can tell you that they definitely felt uneasy before a cancer diagnosis, like they knew something was wrong. Pay attention to your gut.
-Fatigue. Who wouldn't be exhausted, thinking about all the possibilities when living with LFS? Then there are normal life stressors and bills and all the stress just associated with living. But many people who are diagnosed with cancer will tell you they felt tired, overly tired right before their cancer was found. There are many other causes of fatigue, but when paired with other nagging symptoms- it can be a sign of something else brewing.
-Weirdisms. You have to know your body with LFS. There are normal aches and pains, normal stress related exhaustion, but there are also symptoms that can turn into nagging flags. Some people crave sugar when they have cancer. Some people notice little acne like bumps around the area where a cancer developed. Not every symptom is cancer. Sometimes it helps to talk with a friend or relative or fellow LFSer who can share experiences. You are your own best advocate.
It can be frightening to think about having cancer, or ANOTHER cancer. But wishing it away doesn't make it go away. Sometimes the best thing you can do is get a symptom checked out so your mind can be put at ease. It's Ok if friends or family or health professionals think you are being overly cautious. Being overly cautious with a p53 mutation helps you to keep living with LFS.
I have LFS I live in fear,I have had several aggressive SCC.one just keeps coming back.Drs dont know much about our disease it's to rare yet like now I have bone pain in my arm 2 mons still have to wait two more weeks for mri.told no xrays yet scheduled for pet.i just had mri of brain and breast with contrast and full body mri .you would think I could relax ! Then the arm pain, no radiation yet now he wants a pet scan as well always going to drs, one day he says I'm fine then my bloodwork comes back showing infection or...needs further eval.im always in pain nothing helps .why isnt there something to help us fight this to get our immune system help!