A 28-year-old woman named KC experienced severe abdominal pain, a 3-day headache, and a rapid heartbeat. Despite multiple visits to doctors, her condition was initially misdiagnosed as anxiety. However, an ultrasound revealed tumors on her liver, which were later confirmed to be metastatic renal oncocytoma, a rare and usually benign kidney cancer that had spread to her liver.
KC's case was unusual, as medical literature stated that renal oncocytoma does not spread. She underwent a liver biopsy, which caused a severe bleeding episode, revealing a pre-existing bleeding disorder. Due to the rarity of her condition, KC's treatment options were limited, and she was started on a medication combination that was not typically used for her type of cancer.
After experiencing bleeding problems, KC's medication was adjusted, and her tumors began to shrink. However, due to the risk of further bleeding, her medication was eventually stopped, and she became eligible for surgery.
During the height of the COVID-19 pandemic, KC's surgery was delayed due to a blood shortage. However, a social media appeal for blood donations resulted in an overwhelming response, and the surgery was successfully performed. KC's kidney and liver tumors were removed, and she made a full recovery.
KC is now a metastatic renal oncocytoma survivor and the founder of the Chromophobe and Oncocytic Tumor Alliance (COA). She shares her story to raise awareness about rare cancers and the importance of advocating for oneself in the medical system.
Here are the key facts from the text:
1. KC, a 28-year-old woman, presented to the emergency room with a 3-day long headache.
2. She had been experiencing massive abdominal cramps once a month, which doctors initially attributed to her period.
3. Her resting heart rate was 165 beats per minute, and her blood pressure was sky high.
4. All other tests were normal, and doctors suspected anxiety or a panic attack.
5. Over the next few months, KC lost 30 pounds and her hair started falling out.
6. A colonoscopy was scheduled, but KC discovered a hard mass in her upper right side before the procedure.
7. An ultrasound revealed a series of tumors on her liver, and a second emergency room doctor confirmed the diagnosis.
8. The tumors were found to be from a cancer on her right kidney, which was not liver cancer.
9. The cancer was identified as a renal oncocytoma, a type of kidney cancer that is usually benign.
10. However, KC's case was unusual because the cancer had spread to her liver, which is not typical for renal oncocytoma.
11. Doctors took tumor samples from KC's liver, which revealed that the tumors were from the cancer on her kidney.
12. KC's cancer was classified as metastatic oncocytoma, a rare and aggressive form of kidney cancer.
13. She was treated with a medicine combination that targeted kidney cancer, but the effectiveness of the treatment was uncertain.
14. KC's tumors shrank in size after starting the medicine, but she experienced bleeding problems again.
15. The benefit of the medicine was weighed against the risk of bleeding, and it was decided that KC could stop the medicine and be eligible for surgery.
16. The hospital was prepared for the rare surgical case, but the surgery was delayed due to a shortage of blood during the global health situation in 2021.
17. A social media announcement led to an overwhelming response for blood donations, making the surgery possible.
18. KC's right kidney and visible tumors on her liver were removed in a 6-hour operation.
19. After the surgery, KC's blood pressure returned to normal, and she regained full function again.
20. KC is now a metastatic renal oncocytoma survivor and the founder of the Chromophobe and Oncocytic Tumor Alliance (COA).