There I am, standing butt naked in front of a white back drop. The camera is flashing, and I am not sure if I am supposed to smile or not. No, I am not starting a nude modeling side gig. I am just at the dermatologist doing a “mole study” to, well, study my moles. I am an especially moley human being, so they recommended we take photos of every square inch of my naked body to make sure none of my moles change in the future, because you know, at high risk for skin cancer and stuff. I also checked the box saying that they could use my photos for “science,” so I hope that nude photos of me don’t surface on the internet some day in a journal publication.
Anyway, people with LFS can choose to embark on a screening protocol that focuses on early detection of cancers. It has been shown that TP53 mutation carriers enrolled in a surveillance program have an improved survival outcome. And believe me, I am all about doing everything I possibly can to be proactive and focus on early detection.
There are three main screening protocols/ guidelines that someone with LFS can follow; NCCN, Toronto, and Australia. Or, like me, you follow a mix of all three. They all are very similar with their recommendations, and your doctor will usually make a recommendation based on your specific needs.
For me, my screening protocol involves the following – three times a year: blood work; once per year: full body MRI, brain MRI, abdominal ultrasound, mammogram, breast MRI, and dermatology exam; and every other year: colonoscopy and upper endoscopy.
Beyond reaching my out of pocket max on my health insurance within a matter of hours, it really isn’t all that bad. A few needle pokes, someone feeling up your boobs more than you’ve ever experienced in your life, and drinking what tastes like urine water (for the record I have never drank urine water, but I can only imagine what it tastes like) before the colonoscopy all resulted a clean bill of health for another year for me.
It’s important to know what options you have for surveillance and screenings. Often times, these proactive screenings are able to catch cancer in very early stages.
If you would like more information on the screening protocols for Li-Fraumeni Syndrome, check out this journal article: https://clincancerres.aacrjournals.org/content/23/11/e38