The Path to My Desmoid Diagnosis

This is the first post in a series that details my journey from the initial diagnosis of my Desmoid tumor through surgery, and the discovery of its return in 2016.

When I was first diagnosed with a desmoid tumor, I distinctly remember feeling relief when the recommended treatment was surgical removal. It seemed so easy:

  1. Surgery is scheduled.
  2. Tumor is removed.
  3. Life goes back to normal.

Boy, did that end up being wrong. 

We are now over four years into this life-changing journey. But I didn’t begin to share my journey publicly until about a year ago. And there is so much more to the story I feel I should share.

The missing pieces may be the most important. It’s where I made a fair share of “mistakes” that allowed me to learn and grow.

So, here goes. We’ll start at the beginning.

Ignoring the Symptoms

No ones first thought is that they have a tumor. Well, unless you are my husband. After dating for a few months, I casually mentioned that I occasionally experienced pain in my leg. He jokingly said it was probably a tumor. We laughed at the craziness of the idea. Then he told me to go to the doctor.

I didn’t listen.

I was sure I had simply injured my leg and all I needed was a little TLC. A few months passed. I asked my sister, a physical therapist, for some stretches to help with the weird pangs.

I did the stretches inconsistently at best.

Finally, after a few months with no change, I decided I needed to get serious and put some real effort toward completing my stretches as recommended.

Maddy the encourager doing stretches alongside me.

I did, but as a few more months passed by, the pangs continued. The stretches were not cutting it and my sister urged me to go to the doctor.

I decided I could put it off a bit longer.

Lame Excuses

Ever heard this before? I didn’t have time. Nor did I have a primary care physician (PCP). Two really lousy excuses for not taking proper care of myself.

But I finally hit a breaking point. I had to do something: the pain was getting worse.

After experiencing pain in my leg for a year, if not more (that is not a typo), I decided it was time to see a doctor.

Upon a friends recommendation, I made an appointment with her PCP. All that was left to do was wait for the appointment. The earliest I could get in was nearly three months away.

Finally, the day arrived.

The Truth Revealed

The appointment was routine until I casually mentioned I experienced semi-regular pain in my leg. The doctor took a look and proceeded to measure both legs, confirming my left leg was one inch larger in diameter than the other. Things then began to move rapidly.

Every day that week I was scheduled for a different test.

  • Monday: PCP appointment, bloodwork, ultrasound
  • Tuesday: X-ray
  • Wednesday: MRI
  • Friday: Biopsy
  • Monday: Diagnosis
Post-biopsy on March 3, 2016. Laughing at the beautiful new outfit I got to leave in.

The weekend seemed to stretch as we awaited the results. But there was one major blessing in the wait: the doctor was fairly certain of the diagnosis due to the behavior of the tumor. We weren’t left completely in the dark. And if the doctor’s assumption was correct, it was benign.

The results came back as expected: a benign desmoid tumor. 

Approximately one year later, we found out Caleb was right all along. It wasn’t nearly as funny this time.

Blessings in the Chaos

Some things I know now that I was clueless to a few years ago:

The speed upon which my tumor was diagnosed is rare. Even more rare: the fact that it was correctly diagnosed at all.

“Desmoid tumors, a rare connective tissue tumor, occur in 5-6 people per every 1 million of the population per year, though exact numbers are hard to determine due to misdiagnosis. The diagnosis doesn’t just impact the patient, but their families and livelihoods.”

Desmoid Tumor Research Foundation

What I’ve Gained From My Mistakes

The path to diagnosis was bumpy. As I write this I can’t help but ask myself, “what were you thinking?!” The truthful answer is I wasn’t. I never expected this to happen to me – especially at the age of 25. I doubt most people do, no matter their age.

But here is what I’ve gained from the experience and hope others take to heart:

  • Go to the doctor. Definitely when you think something is wrong, but also routinely. Never be without a doctor you feel you can trust.
  • Make your health a priority. Don’t make lame excuses about why you don’t have time. Your wellness is important. Never treat it differently.
  • Listen to family and friends. When multiple people tell you the same thing, it’s a good idea to listen. These people love you and have your best interest at heart.

I certainly hope this post inspires you to never end up in a similar position. Our lives are too precious.

Up Next: Undergoing Treatment

Next up, I’ll share about the initial treatment decisions and what I’ve learned to do differently.

3 thoughts on “The Path to My Desmoid Diagnosis

  1. Pingback: Initial Desmoid Tumor Treatment: Surgery | Thursday Thoughts

  2. Pingback: Desmoid Recurrence Diagnosed | MaryBeth Eiler

  3. Pingback: Desmoid Treatment: Trial and Error | MaryBeth Eiler

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