I was born in Iran in September 1991, and I have been living in Scotland for over 15 years. On 18th February 2022, while sparing in the gym as a professional boxer, I felt a pain in my left lower abdomen. Assuming it was from boxing, I went to bed, but at 3 in the morning, the pain intensified, and I could barely breathe. My partner rushed me to the ER, where they suspected a kidney stone. During the urinalysis, heavy blood and blood clots were detected, making me fear that a piece of my kidney was coming out. The CT scan revealed an 8.8 cm mass in the upper-middle left kidney. On 26th February, a biopsy was conducted, and four weeks later, renal cell cancer (RCC) was confirmed. One week later, on 18th March, I underwent nephrectomy.

After four weeks of waiting for the pathology report, my urologist in Scotland suspected that I had a subtype of kidney cancer known as collecting duct RCC. Seeking a second opinion, I went to an expert in Oxford London. The final diagnosis was FH-deficient RCC, with all of the tumor and kidney removed during surgery, requiring no further treatment. During a visit to the dermatologist, I was diagnosed with skin leiomyomas in my left arm and underwent a biopsy that revealed grade 1 leiomyosarcoma. Additional surgery removed the affected area, and genetic testing confirmed the FH mutation and HLRCC diagnosis.

I now undergo a CT scan with contrast every six months (chest, abdomen, pelvic), and my remaining kidney has normal glomerular filtration rate (GFR) of over 60. I also undergo an MRI of the left arm every year (where the leiomyosarcoma was removed) and a blood test every three months to monitor kidney function. I experienced several complications after surgery, including gastrointestinal pains and discomfort. Fortunately, a colonoscopy has revealed no complications and the kidney cancer has not returned. Recently, my mother has noticed a few leiomyomas on her chest. She underwent an abdominal MRI, which has shown no issues. We are currently waiting for her genetic test results.

Twelve weeks after the pathology results, I began researching my condition and discovered the HLRCC Foundation on Facebook, where the admins and members provided helpful advice. Before joining the HLRCC group, I didn’t even know that kidney tumors could develop into cancer. It’s scary to be diagnosed with such a rare type of cancer.

Bruce Lee (rest in piece) was the first person to respond when I joined the HLRCC Facebook page. He warmly welcomed me and explained the basics of HLRCC. The support I received was amazing, and it continues to be. The admins and other members of the community are very kind and take the time to explain everything in detail.  The HLRCC family is made up of amazing people who share their experiences and help others learn how to deal with symptoms and cope with the disease. I learned about HLRCC from a very big-hearted person, Andrew Lee, and many experienced people are working hard to find a cure. We are all together in this HLRCC family, and God willing, we will find a cure for HLRCC.

***The author of this account has chosen to remain anonymous.