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Hi friends. Please consider helping our dear friend, loving mother and wife, Sara Popp. She is in a desperate situation to save her life. Any assistance will help this sweet family financially. Sara needs all of our help in alleviating her stress as she battles this diagnosis. Because her diagnosis is so rare and not definitively labeled as cancer, she and her family have endured signficant financial strain already as her insurance has repeatedly denied necessary testing and treatments.
Sara is a brilliant writer, so I thought it was most fitting to use her own words to tell her journey.
Here is Sara's story:
In a few weeks, I'll pack my bag and head to Stanford for my fourth open abdominal surgery in three years. This time, it'll be wihtout visitors during a pandemic. Whew!
Most of you know about my strange journey into the Land of STUMP, stromal tumors of uncertain malignant potential. It’s been about three years since this all started with a crummy tummy, an ER visit, and an epic surgery. My initial diagnosis was terminal cancer, then Standford revised it down to limbo, with a very good prognosis. Hoorah!
That good prognosis hasn’t been my experience so far, as I promptly had another surgery for a tumor on my kidney. Scans were ok for a little while, then red flags popped up. Enlarged lymph nodes in a CT scan. A PET scan that lit up. A biopsy confirmed STUMP was back. I then underwent a 4-hr open abdominal surgery last spring with success.
My follow up CT scans were done in December. (They were supposed be at 4 months, but were done late. Insurance wants to know why someone without cancer is getting scans and surgeries like this. Good question, insurance. This is the most cancery non-cancer I’ve ever heard of.) I quietly panic inside before, during, and after scans because no matter how often I’m told it shouldn’t come back, well, it keeps coming back.
It’s back.
The progression of this disease is evident. In December, it was back in two locations, after just 6 months, one tumor already as big as a large egg, the other not far behind. Now, 4 months later, there are 4 more tumors. Surgery is never an ideal option, but STUMP has no clear alternate treatments. This time it’s a very sketchy option because the Egg of Uncertain Malignant Potential is back in a very inconvenient place, on deep lymph nodes that lie just next to my abdominal aorta. It’s “complex and involved,” sitting just above my belly button, behind my existing incision, deep inside. My surgeon won’t touch it without a special team of expert vascular surgical specialists at his side, because they may need to “resection” my aorta to remove it.
We don’t know why it’s there, what is causing it, or why it seems to be accelerating so quickly. Because we don’t understand why it’s there, we don’t know how to make it go away, other than cutting it out. Because latest imaging puts one of my tumors nestled cozy BETWEEN the abdominal aorta and inferior vena cava, we don’t know if cutting it out makes sense. Because it’s growing so fast, we can’t just let it be.
So what now?
Now, we start throwing everything at it – aromatase inhibitors, gene sequencing, biomarker analysis. We try to find out what the hell is driving these things, so we can target it. We try to shrink them instead of cutting them out. It’s all cancer treatment for my increasingly cancery STUMP.
Organizador y beneficiario
Sara Heinrichs Popp
Beneficiario