Scanxiety is a very real emotion for many people with cancer and is especially prevalent in LFS. Anxiety causes shortness of breath- or is it a lung tumor?  Stress headaches accompany scanxiety, could it be a brain tumor? With LFS there are no shortage of scans- it feels like a perpetual loop of scanning and checking and waiting .Most people with cancer feel scanxious. If you google "scanxiety" there are countless articles, blogs and definitions for it. It even has it's own notable:

Scanxiety with LFS is multi-fold. There is the routine- what if it finds something scanxiety. There is the post cancer- what if it's back scanxiety. There is the what if treatment's not working scanxiety and the oh god it's spreading scanxiety.  There is the familial scanxiety which is a special brand of stress felt when family members face their loved ones scans, best paired with lots of positive thoughts for negative results. This is the one time family members are allowed to share their negative thoughts because negative scans are good, negative means they didn't find anything wrong. Parental scanxiety is generally accompanied by other feelings of guilt and responsiblility, heightening the overall scanxiousness. There is also a new brand of scanxiety with LFS, it is preceeded by knowing one needs a scan but due to insurance or other factors- one cannot actively get screened.

Scanxiety can have detrimental affects. Studies have shown that stress negatively impacts immune function.  But most of all, it is negative energy that clouds our quality of life. Fears are not rational. They are not something you can make go away entirely- but you can take steps to lessen the impact. I know several mutants who will start to have palpitations at the mere talk of MRIs. I also know several people who find peace and comfort in the cocoon of the machine and it's rhythmic hymn.

Figure out what you fear.

Is it being in the scanner? This is claustrophobia, the fear of being in constricted spaces or not having an escape. One can definitely see that happening with LFS. LFS sometimes feels like there is no escape and that big round humming hammering orb can feel like the messenger of death. A real component of claustrophobia is not necessarily a fear of the confined space, it's the implications of that small space; the feelings of potential suffocation or revelation of potential cancers. Most doctors are willing to prescribe antianxiolytics(anti anxiety) to combat this fear or at least make it manageable for the duration of the scan. Having a hereditary cancer syndrome is stressful.  Do what you have to do to take care of yourself . If scans bring you an abundance of anxiety( I don't know why they wouldn't) talk to someone- you aren't alone and you can get help through it.

Do you fear the results? The great hockey star Wayne Gretzky was famous for saying- you miss 100% of the shots you don't take. The same can be said for scanning. You might miss early detection and chance of cure by not scanning. You also could miss out on the chance of having a small piece of peace of mind(think pizza!pizza!mind). That glorious feeling of excitement when you hear- your scans look clean.  Although there is still healthy debate about amount of radiation and it's threat to our mutated genes- only some scans utilize radiation. Scans like Ultrasounds and MRIs do not use ionizing radiation and are good tools for LFSers. Not scanning will not make tumors go away, it just changes whether you know about it.

Do you fear living with cancer?  As a LFS family, we live with cancer. It looms over our heads like an ominous cloud. That cloud becomes much worse when it dumps rain on you. But without the clouds and without the rain, there would be no rainbows. Not everyone with LFS gets cancer. Some people with LFS seem to get a lot more than their fair share of cancers. People are surviving longer with LFS and cancer than they were 15 years ago. Much of this is quite frankly because we know more. We can see more through scans. We learn earlier of cancers. The other up side to this is that when you catch cancer early, even in LFS- you can have the best chance at curing it and treating the cancer effectively. Cancers do not spare those who wish it away the hardest, cancer doesn't spare children or those who are selfless or those who take immaculate care of themselves through diet and exercise. The most important piece of living with cancer is living. You are stronger than you know.

Fighting your Fears

Realize that it's ok to be anxious. Do not worry whether the medical staff thinks you are weak, strong, scared or tough. They see a lot of people who are claustrophobic. LFS may indirectly try to cure your phobias with immersion therapy when multiple scans are required. You may be able to conquer this fear and spend hours enjoying the peaceful hum of the machine. You need to get through this with the least damage- oxidative stress damages cells physically- mental stress damages our emotional fighting power. Reduce the damage when possible. Sometimes scanxiety increases over time. Know the triggers. You are allowed to be afraid. Scanxiety can be it's worst after a cancer diagnosis when everything is seemingly going well. We are humans, we are programmed to fight for our lives. If regular scanning presents more stress than you can endure- then you have to find what works for you. We live with a very real threat of cancer- but we also can fight it. You cannot fight 100% of the cancers you don't know about. Talk to your genetic counselor- talk to a trusted mutant friend- there are ways to get you through these tests. Make Scanxiety Scarce.


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