MiT family kidney cancer
Hi everyone,
I am a 21-year-old student from Morocco, and I wanted to share my story because my case seems to be very rare, and I am hoping to connect with people who may have experienced something similar.
A few months ago, I noticed a growing lump on my scalp/head. Over time, I started developing headaches and fever symptoms. Brain MRI and CT scan showed a large destructive lesion in the skull (around 5 cm) with bone involvement and thrombosis of the superior sagittal sinus.
In March 2026, I underwent surgery at the Military Hospital in Rabat. The surgeons achieved a complete resection of the tumor and affected bone. Post-operative MRI and PET scan were reassuring and showed no visible residual disease or metastases elsewhere in the body.
However, pathology and immunohistochemistry suggested that the tumor may represent a metastatic clear cell renal carcinoma / MiT family (TFE3-related) tumor. The confusing part is that repeated imaging of my kidneys (ultrasound, CT, MRI, PET scan) has not shown any visible kidney mass.
My immunohistochemistry showed positivity for markers such as PAX8 and CD10, which supported renal origin, but because of my age and the unusual presentation, my doctors are also considering rare alternative diagnoses such as clear cell adnexal tumors/hydradenocarcinoma.
I have now started adjuvant radiotherapy to the surgical bed (30 sessions), and my oncologists are planning advanced molecular/genetic testing (NGS) to better characterize the tumor.
My case has been described as “orphan/rare,” and my doctors are discussing it with international renal cancer specialists but they stoill do not responding to them .