How Desmoid Tumors Are Like Hurricanes

When I first heard of Hurricane Irma, she was a category five storm on track to make a direct hit on a town in south Florida that I called home for almost 15 years. I remember staring at the screen in disbelief, hearing my friends talk about how evacuation was nearly impossible, and thinking they would certainly be wiped off the map. Our daughter, who was attending college in the panhandle, was the least of our concerns. About a week later, when Irma’s track shifted to a course that very few expected, it was our daughter who was having to board up her apartment and evacuate to our home in North Carolina. Most of my former neighbors in that little beachside town I love so dearly never even lost power.

That’s how it goes with hurricanes. You try to predict. You use all the spaghetti models and years of data. You see where Jim Cantore is doing his live shot. And still, you may never know where they’re going to land until just before they do.

And the damage can vary in as little as an hour’s drive in any direction. My friends, the ones who were supposed to be blown away, were left relatively unscathed and saw little damage and flooding. Just 50 miles south it was an entirely different experience. My sister, who braved the storm in the county just south of theirs, had issues with electrical outages and storm debris for weeks after Irma left town. Same storm, different parameters, very different results.

Desmoid tumors are no different. Each desmoid patient has their own story, their tumor its own trajectory. Treatments that work for one may not work for another. The same desmoid growing aggressively in my left leg, which caused me only pain and difficulty walking, could have easily killed me were it growing in my chest or abdomen. Same disease, different parameters, very different results.

We have a joke, us south Floridians, that we don’t really take any hurricane seriously until the weatherman takes his tie off and rolls up his sleeves. If he’s reporting the path with a jacket on, tie firmly knotted, you’ve got nothing to worry about. The jacket comes off, tie is slightly loosened, you might start to check the news more often. But you’re taking the shutters out of the garage the minute you see that top button undone. You live it long enough, you get immersed in their body language and you don’t even need to hear the forecast. You just know.

Which isn’t so very different from when you become the patient of an oncologist. You learn quickly that the words don’t really matter as much as the tone, the energy they give off. News of every good scan I’ve ever had has been given to me quickly and precisely. Scan looks good. You’re doing great. There’s never any pretense. They look you right in the eye. They are as relieved as you are and you can hear it in their voice, see it in their eyes.

Bad news can be delivered quickly too, but you learn fast that there is good quick and bad quick. The news you receive from an evening phone call the same day of your MRI is rarely good. The worst part of that is, you know it before you even answer the call. The sigh just before the delivery is like a knife in the heart. You live it long enough, you don’t even need to hear the results. You just know.

I’d been waiting for the results of my MRI for a few days and, even though I didn’t have much reason to believe I was going to get bad news, the stress was sometimes overwhelming. With desmoids you just never know. A dead tumor one year could easily spring to life the next. Just like a hurricane, as long as it’s there, you must keep an eye on it. Go on with your life and don’t even think about getting the shutters out of the garage until the tie comes off, but check the news once and while so you’re not blindsided by a Cat 5.

When I got the call, saw that the number was from Durham, I held the phone in my hand for a few rings and prepped myself for the news I might get. After the usual pleasantries, when it was time to get down to business, I did notice a slight sigh before she gave me the results. I closed my eyes, took a deep breath in and waited for the rundown as I have so many times before.

The news I got was not optimal, but for a desmoid patient it was pretty good. There is a small amount of cell growth in the bigger tumor from last year’s MRI. While the best news possible would have been zero change from last time, this development is not necessarily anything to worry about. My tumor has not gotten any larger, it is considered stable. It is very possible things will continue this way, but there is really no way to know. All we can do now is wait and see and check it again in 6 months.

While that little sigh gave me pause, the oncologist’s affirmation that this was good news and she was happy with the results were all the permission I needed to exhale. There may possibly be a tropical disturbance forming in the Gulf, but the meteorologist still has his jacket on and Jim Cantore isn’t even considering traveling to my neighborhood. So, as I’ve learned from decades of hurricane experience, I’m going to keep my eye on things but we’re a long way from needing to put the shutters up.

 

*Featured image courtesy of Pixabay.

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10 thoughts on “How Desmoid Tumors Are Like Hurricanes

  1. Plus one for I’m glad that the results are good-ish.
    Does that mean you don’t have to worry for a whole year? It does seem strange that the checks are so far apart if there is a chance the tumor might come back though.

    Liked by 1 person

    1. I go back in 6 months or sooner if I feel like something might be up. I may see my thigh bulging out more or, if the tumor is growing inward I could look for other signs.There is usually pain associated with growing desmoids. The thing about desmoid tumors is that they can remain stable for long periods of time, but everyone is different, so there is no one standard of care. You just have to pay attention to your own situation and have a thorough and frank discussion about it with your doc. For instance, the little tumor has been dead for quite some time, so we aren’t as worried about that one. The bigger one, though, is a bit concerning. It has a history of growing rapidly once it starts. It hasn’t gotten any bigger at this point, so it’s not time to worry or start treatment. A little cell growth is not necessarily bad. Of course, it worries me a bit, but I just have to wait and see what happens.

      Liked by 1 person

      1. Goodness. You can tell I don’t know much about desmoids, but they do not sound fun at all.

        My sister had a tumor which grew super slowly for four years. After they found and removed it, she had to go back for scans pretty frequently, that is why I was confused that you have to wait a long time.

        It is really good that they can tailor your care to suit the type of tumor though.

        Liked by 1 person

      2. They are very, very tricky tumors and exceptionally rare, so they are rarely studied. If it makes you feel better I didn’t know anything about desmoids until I was as diagnosed with one, and I’m still learning at every doctors visit.

        Liked by 1 person

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