In the year following the surgical removal of my Desmoid tumor, I became part of the 25 to 40 percent recurrence statistic. My tumor came back more aggressive than ever.
“While statistics may vary, about 25 to 40 percent of patients who undergo surgery can have a local recurrence (return at or near the original site).”DTRF.org
The road to uncovering the recurrence was long and windy.
Post-Surgery Follow Up
In the months that followed the surgical removal of my tumor, life went about as normal. I had check-up appointments with my surgeon every three months. They were brief (< 15 minutes), to the point, and left me feeling very much assured my tumor was never coming back–though not necessarily for the right reasons.
Questions I raised were brushed off as needless concerns. My surgeon had performed a “perfect” surgery. That should be the end of the story.
You may be sensing the frustration I felt. Here’s where I must pause and remind myself:
“At no point do I look back on this journey with regret, nor do I feel we were ever truly directed down the wrong path. Each step in this journey has served a purpose.”MaryBeth Eiler, Initial Desmoid Tumor Treatment: Surgery
Before moving forward, I will share these important reminders:
- Know yourself
- Advocate for yourself
- Ask questions until you are confident how to move forward
Indicators of Tumor Growth
Six-months after surgery, I began to experience some challenges–primarily a decrease in my ankle flexibility. I have hyper-flexible ankles, so when I initially shared concerns with the doctor, he brushed it off. My ankle was still within a normal person’s range of motion.
At the same time, I was prescribed Gabapentin to manage the pain I was experiencing related to nerve damage caused by surgery (nerve damage can take 2+ years to heal).
My ankle mobility continued to decline and by the end of the year, I was dead set on doing something about it. Upon request, my surgeon wrote me an order for physical therapy.
January through February I completed ten physical therapy sessions. Applying the Graston Technique, we managed to increase the mobility of my ankle.
“Our unique technique and instruments enable the treatment of scar tissue and fascial restrictions during rehabilitation that allows for faster rehabilitation and with greater success when the goal is restoring range of motion, eliminating pain, and restoring normal function.”Graston Technique
Physical therapy wasn’t easy. It was unpleasant, hard work, but it helped–at least for a while.
A few weeks after “graduating” from PT, I felt my ankle constricting again. I called my PT and she had me come back in for another appointment. She took an aggressive approach to treatment that day, leaving me bruised for over a month. At that point, I decided it was the last time that treatment made sense for me.
I knew something was going on, but was oblivious to the fact that it was the tumor that had returned. There were indicators–the decreased ankle mobility, the need for physical therapy, the increased pain and need for a new medication–but I didn’t recognize them as such, yet.
As this all unfolded throughout the year, my doctor continued to assure me it was part of the healing process post-surgery. Because I had no other baseline and reason not to, I believed him.
One-Year Post-Surgery MRI
Before my one-year, post-surgery follow-up appointment, I underwent an MRI to determine if the tumor had recurred.
At the time of the post-surgery MRI, I was six weeks away from my wedding and the tumor being back was the last thing I wanted to deal with.
The MRI revealed two masses. My surgeon diagnosed them as scar tissue and recommended a three-month follow-up MRI to check for growth.
That may seem like great news, but my tumor actually shows up as scar tissue on an MRI. My doctor assured me that some scar tissue is normal following surgery. In addition, he reminded me that he had performed a “perfect” surgery so it likely wasn’t the tumor growing back.
Although I had doubts, I didn’t voice them. I’m not entirely sure it would have made a difference. I wanted to believe the tumor wasn’t back and what I was experiencing was my body continuing to heal itself post surgery.
Official Recurrence Diagnosed
Three months later, I underwent another MRI. This one showed visible signs of growth in one area. There was no more denying the fact that the tumor was back. My surgeon officially referred me to an oncologist to review further treatment options.