The Shark Closest to the Boat

My husband laughs that I often mix up my idioms. It’s not rocket surgery I tell him. A few years ago I had a sarcoma removed from my arm.  It was a grape sized white lump with a bluish black center. The surgeon who removed it thought I was being overly cautious, yet I explained to him that I had LFS. What traditionally looked like lipomas or cysts, often times turn out to be sarcomas in our case and could he please take extra wide margins.Well the pathology came back as fibrohistiocytic sarcoma which meant the margins weren’t wide enough and I had another surgery to achieve those margins at the same time I had a mastectomy for the 3 tumors that popped up in my breast. Tumors that I felt, but had difficulty getting an MRI scheduled for. Things moved swiftly after the pathology confirmed what I tried to explain to the surgeon. We mutants grow weird. My friend Trish often says- when in doubt, cut it out.  This is not always a possibility, but in my case the sarcoma was in the fleshy part of my forearm. The surgeon scraped down to the bone and I have quite the divot in my arm. We affectionately refer to it as the shark bite.I was diagnosed with 4 different tumors at one time. 3 breast cancers and a sarcoma. Years before, my daughter was diagnosed with 2 tumors at the same time, adrenocortical carcinoma and sarcoma in her leg. I remember pleading with her surgeon to take care of the lump in her leg while she was under, no one thought it was anything more than a lipoma and she told me in no uncertain terms that the adrenal tumor was the biggest threat and took priority. It was the shark closest to the boat.

With LFS, we deal with rare tumors, sometimes multiple tumors and often times multiple family members with cancer at the same time. All the while, we are trying to protect ourselves from more cancer.  It is a pretty heavy burden physically and emotionally. I find it helpful to have certain tenets or principles to guide my family through the hard decisions. One of those tenets is to Fight the Shark Closest to the Boat.

Fight the Shark Closest to the Boat

When facing cancer, there are many decisions regarding treatment, quality of life, and care.  It is important to know where you are going before you can chart the path. When you have a hereditary cancer syndrome like LFS, that path has so many possible tangents, you could get bogged down in what if’s and possible outcomes for years. That is when you have to just face the shark that is the closest to the boat. When my daughter and I were diagnosed with multiple tumors, the most aggressive tumor became the closest shark. In her case it was the adrenocortical carcinoma, in my case it was the invasive breast cancer. For some, the sharks may threaten quality of life, others may feed off of quantity of life. Sharks are the threats to you in your life raft, you decide how many there are and how close they are.

I remember talking with my daughter’s oncologist and hearing that a possible side effect of chemotherapy was treatment induced leukemia. If we were already prone to cancer, why would I give her a toxic treatment that would possibly cause more cancer? He nodded, I may have been his first patient with LFS, but this was not a new concern.  He explained that with children, they do take extra care knowing that the long term effects of chemotherapy and other treatments could cause problems but that the hope was survival and the best chance at survival was treating the cancer to the best of their ability. Essentially if the shark closest to the boat gets you, it doesn’t matter that there might be other sharks waiting in the wings.

Other times the sharks become the many tests and scans that are ordered to diagnose cancer. Mutants are sensitive to radiation and we do our best to avoid scans that increase our risk of sprouting tumors. But risk is relative. Risks taken for screening when no cancer is suspected is different than scans ordered to determine if a lesion is malignant. If you have a potential malignancy, that is your shark.  You get to decide how to battle it. Sure radiation exposure is another shark- but that shark is a lot further away than the possible malignant shark. You have to get through the first battle in order to worry about the next.

Sometimes the shark is insurance obstacles or day to day concerns. Using this analogy can help you prioritize and determine which battles you need to focus on and which you might be able to put off.  Sometimes fighting the shark closest to the boat is a part of Living LFS.

-Jen Mallory