Genetic Testing: Should I or Shouldn’t I?

  1. occurring at irregular intervals or only in a few places; scattered or isolated.
    “sporadic fighting broke out”

For as long as I’ve been diagnosed, I’ve been clinging to the word sporadic. When I received a diagnosis, a rare diagnosis, none the less, it kind of knocked me off my feet, I am a healthy person and come from a healthy family.

I was told that due to my family’s medical history, paired with my own, my doctor was  confident my tumor was sporadic. While I was somewhat happy to hear that, I was also a little frustrated because, lets face it, I’d rather be someone who sporadically wins the lottery.


The doctor told me they would use the remnants of my biopsy (ew) to test my tumor genetically to rule out that this was passed on to me. It really wasn’t a big deal to my doctor as, again, he is confident my tumor is sporadic.

At my last visit, however, I had asked if the results were back and unfortunately my doctor informed me there wasn’t enough left of my biopsy (gross) to test and that he suggests I get genetic testing done. While he is mostly confident it is not related to genetics, he thinks I should do it for peace of mind just to be sure. I made the appointment for December.

computer desk laptop stethoscope
Photo by Negative Space on

Here comes the kicker, though: now I am considering not having it done.

My husband and I have decided that even if it is genetic, we will still have children. YES, it will be helpful to know if our children could possibly develop Desmoids one day, it would certainly help us be proactive, but will it change the fact that we will have children? No.

Will I, no matter what, always have this in the back of my mind that a Desmoid is a possibility for any of our future children? Of course. My alertness to the situation will not change based on genetic testing. Because mine is “sporadic” it really seems as though they could get a Desmoid Tumor no matter what, so even if I get the testing done and it’s confirmed that mine was sporadic, I will still always be cautious. Will my own course of “treatment” change based off this genetic testing? Again, no. I am doing so well on my own with shrinking my tumor he wouldn’t even recommend medication to me right now.


It is stressing me out more than anything. I feel I have a complete handle on my diagnosis, I feel like I can handle it and beyond that I feel like I can cure it. I am afraid that if I learn my diagnosis is genetic my mind set with be a little grim for a bit. It may take all my mental progress with this disease and diminish it. Even if that negative mind set is temporary, I can’t set myself back like that.

I can’t help but feel in my bones, though, that my tumor was brought on by my environment at the time and the way I carried my stress. That paired with the fact that my doctor is pretty sure mine is sporadic is making me lean more towards not having it done.

Anyone gone through something similar? Sound off below, I’d love to chat about it.


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