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Patient | June 28th, 2023

Kerry Lindauer: 1 Year NED after Synovial Sarcoma

By susan Kerry Lindauer: 1 Year NED after Synovial Sarcoma

Schwannoma v Synovial Sarcoma

On March 1st of last year, I left the operating room, excited that the chickpea-sized tumor (presumed a benign schwannoma following an autumn biopsy) had been removed from my left thigh. Under anesthesia, I was WooHoo’ing and High-Fiving everyone as I left the operating room! Almost immediately, I noticed my 10-year nerve pain was gone! The next three days were full of plans for athletic events, family trips, and goals. However, on the fourth day, my surgeon called me. I babbled on happily expressing that the burden of pervasive nerve pain had lifted and leg movement was good. I paused, as I noticed my surgeon was very quiet, and asked if I should be feeling this way. He said that instead of the benign tumor, my decade-old tumor was actually synovial sarcoma, a rare cancerous tumor. I felt as if I was falling back into the pit that I had just escaped. That was the bad news. However, the good news was that my surgeon (who is actually a specialist in rare and complex sarcomas) and the Tumor Board at Levine Cancer Institute already had a plan. Yep, LCI has a Tumor Board where the team discusses new patients and their tumors, treatments, and recovery. I was to undergo another surgery to remove the tumor bed, including nerves and parts of muscle in my left thigh. I made plans to meet with an oncologist ASAP (also on the Tumor Board) and undergo CT scans to determine if the sarcoma had metastasized to my lungs. That’s where sarcomas love to go when they first metastasize. My beautiful, swimmer lungs were (and still are) big and clear of cancer! 

NED: Synovial Sarcoma not showing up!

I am very happy to report that in early March, I just had my 5th CT scan since surgery last year, and my lungs and abdomen are clear! A day later, I laid in the MRI hammering tube for over an hour to discover that my left leg is also clear! Wonderful news! It’s been a year! Phew!

Sharkoma Squad is Born!

Kerry, an amazing athlete and long distance swimmer, had her synovial sarcoma tumor removed from her thigh. This relentlessly glass-half-full woman decided that the resulting long incision line on her thigh reminded her of a shark attack scar. Thus, team Sharkoma Squad was born!

Team Sharkoma Squad: Reflections on the 2023 Sarcoma Stomp

What a day! We had 41 registered Stompers from our Squad. It started early. Lots of preparation loaded into the minivan, i.e., bagels, tables, tents, tutus, hats, yard games, utensils, chais, shirts, bib pins, hand sanitizer, etc. When you think of a successful event, you have to applaud the details; the Stomp staff was on it, and the Sharkoma Squad came prepared! Thank you to the organizers and volunteers. They supported, directed, inspired, laughed, cried, and showed up. Next year, remember, there are opportunities for these roles if you’re inspired to assist. 🙂
The weather supported the Sharkoma Squad by making sure that we were not fish out of water. We definitely got wet; however, after the race / walk (around 9 AM), the sun came out and we dried off in the sun at our spot. This was a great opportunity for me to get to talk to other teams, survivors, and supporters. I talked with Gina and Ava who lost Tony, their husband and father, respectively. We talked about how rare sarcoma is and the debilitating treatments currently available. We talked of hope for the future. One of the main reasons that I devoted time and energy to this event is due to the experience I had last year, as a first-time Sarcoma Stomp participant. Last year, it was me and three family members, all together, the 4 Ls. We were the Lindauer Left Leg League – named for the healing hole in my left leg. I was so struck at how many awesome, large teams there were participating, and yet also how few of those teams actually had their PERSON with them. Most of the teams were running in memory of their person who had lost their battle with sarcoma. There are only a few teams with their person still here on earth. When I noticed this, I realized that I needed to be loud for those who couldn’t be, I need to represent and be silly and bring awareness because those others aren’t here to do it. The Sharkoma Squad was born!

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