Kidney Cancer (ccRCC)

LeParrain73

Hi everyone,

My name is Halil, I am 51 years old and I live in Belgium.

I’m joining this community to share my journey with kidney cancer and find support. I’ve had a long road with two kidney cancers, and I’d love to connect with others who’ve been through similar experiences. Here’s my story:

•  January 26, 2010 – First Cancer: I was diagnosed with clear cell renal cell carcinoma (ccRCC) in my right kidney, staged pT1a, grade 3 (Fuhrman), with a tumor size of 2.9 cm. I had a partial nephrectomy on my right kidney, and the surgery was successful (clean margins, no capsular invasion). Stage I (T1aNxM0).

•  2019 – Second Cancer: I was diagnosed with another ccRCC, this time in my left kidney, staged pT3a, grade 3. I had a partial nephrectomy on my left kidney. Initial stage: T3aN0M0 (stage III). At the time, a retroperitoneal lymph node (11-11.6 mm, left iliac primitive) was found, but it stayed stable until 2024.

•  2020 – Genetic Testing: After my second cancer, I had genetic testing to check for hereditary risks for my children. The results were negative (no mutations found).

•  Lung Nodule: I’ve had a lung nodule since 2018 (5 mm in 2019), which has fluctuated (15 mm in 2025, SUVmax 4.9). A bronchoalveolar lavage (LBA, 04/02/2025) showed it’s benign (bronchocele/hypersensitivity pneumonitis, no cancer cells or infection). I’m scheduled for a bronchoscopic navigation on 05/22/2025 at Erasme Hospital to confirm this diagnosis.

•  2025 – Lymph Node Update: A PET scan in 2025 showed intense hypermetabolism in the lymph node, suggesting a metastasis (N1). My urologist, reviewed the images and said the lymph node’s appearance looks like a metastasis, not an infection. He explained that its stability from 2019 to 2024 might be due to tumor dormancy, and the hypermetabolism indicates recent activation. He finds this reassuring because it suggests my cancer is progressing slowly.

•  Treatment Plan: A biopsy of the lymph node was ruled out (open surgery would be too risky with serious complications). I’m scheduled for SBRT (stereotactic body radiation therapy) on 04/16-04/18/2025 to treat the lymph node, which is presumed to be metastatic.

•  Current Stage: T3aN1M0 (stage III), pending the bronchoscopic navigation to confirm no lung metastases (M0).

•  Other Exams: I had a CT/MRI simulation on 04/03/2025 to plan the SBRT, but I don’t have access to the report.

I’m feeling quite stressed about the uncertainty with the lymph node, even though my doctor says the slow progression is reassuring. I’d love to hear from others who’ve had similar experiences (ccRCC, late recurrence, SBRT, two kidney cancers) to better understand what to expect and manage my stress. Thanks in advance for your support!

For your information, I was and still am asymptomatic.