I have always been an athletic person with an impeccable lifestyle. Just after finishing my studies, I met my wife. I was young and a little self-conscious about my rough-textured skin, something I had inherited from my father and grandfather. Still, I wasn’t worried. My wife loved me as I was. We got married, built a family with two wonderful children, and bought a small house in the countryside. We were very happy.

Every year, we used to have our moles checked, as we lived in a fairly sunny region. One day, I took the opportunity to ask our dermatologist about the “skin tags” that were worsening on my face. The doctor told me they were simply benign tumors, harmless and purely aesthetic. I was reassured.

Our little life went on peacefully until 2020. My wife was preparing a beautiful birthday party for my 40th in March. Unfortunately, everything was canceled because of the first COVID lockdown. When we came out of that period of isolation, I noticed I was having some urinary problems. My wife convinced me to see our general practitioner, who prescribed a full check-up and an ultrasound. I was anxious and reluctant to do the tests, but my wife booked the appointments for September 2020 and pushed me to go.

On the day of the ultrasound, the radiologist told me I had a huge mass on my left kidney and that I was at risk of losing it… The sky fell on me. Urgently, we managed to get an appointment in October 2020 with a renowned urological surgeon in Montpellier, who ordered several CT scans and MRIs. The waiting was unbearable.

Then came the verdict: both my kidneys were affected by tumors — 2 on the left, including a large one measuring 9 cm, and 6 small ones on the right. My urologist proposed an urgent partial nephrectomy to try to save my left kidney. Further analysis would tell us the type and severity of the tumors. During that period, I realized how meaningful the word patient really is when you are sick… Indeed, the hardest part of illness is the waiting. What patience you need! And ironically, you really need to have “strong kidneys”! So there I was at 40: no birthday party, but instead a lockdown, cancer, and an operation scheduled around Christmas. I was stunned by these events but also filled with hope thanks to the help and professionalism of my urologist. And as I have always had the mindset of an athlete and a fighter, I didn’t want to give up.

The second lockdown came, but fortunately, my surgery date was not postponed. We remained isolated, just the four of us at home, waiting for the operation, caring for and comforting each other. We have always been honest with our two children, then aged 5 and 12; they knew the truth about my health. They were worried but gave me so much love and encouragement. Two days before my surgery, we even went for a beautiful hike in the small mountains near our house, so that my departure for the hospital would remain a positive memory.

After the surgery, I couldn’t see my family for several days due to COVID, since visits were prohibited. Even though the surgery was a success — my surgeon managed to save my kidney — the separation was extremely difficult and painful for both me and my family. My children wanted to see me and hug me…

My wife was also very worried while I was away. In the evenings, she searched the internet for the cause of these tumors. She’s a teacher, and she always needs answers to her questions! She read countless medical articles, both in French and English. She quickly made the connection: she remembered that my father had suffered a spontaneous pneumothorax around age 40, and that my grandfather had emphysema at the end of his life. Added to that were the family’s skin problems and my bilateral kidney tumors. She secretly sent an email to my urologist about my family history and the possibility of Birt-Hogg-Dubé syndrome. He confirmed to her by phone that he had strongly suspected this from the beginning, but that we needed to wait for me to recover from surgery and for the pathology results before talking to me about it. In the meantime, my wife discreetly anticipated things and booked several specialist appointments as a precaution so we wouldn’t lose any time: with an oncogeneticist, pulmonologist, endocrinologist, dermatologist, gastroenterologist… While I was away, she was preparing a whirlwind of medical follow-ups for me!

I came home afterward, and in January 2021, at the post-operative appointment with my urologist and my wife, the pathology results confirmed chromophobe carcinomas — malignant tumors with low metastatic potential. My urologist then told me about his suspicion of Birt-Hogg-Dubé syndrome. He reassured me and explained that my wife had already booked all the necessary appointments for my care. I will never thank them enough for their kindness. I then had a radiofrequency ablation for my right kidney. I am currently under active surveillance for the remaining small tumors, with check-ups every 5 months. Fortunately, the medical team following me is reassuring. All my other specialist consultations went very well, and no other organs were affected. I just had a few brief moments of hypochondria! So I went back to an almost normal life and am learning to move forward with this sword of Damocles hanging over my head. We also benefited from psychological support.

I am an only child, and so was my father. He did not want to undergo testing or examinations on his side; he is in a certain state of denial. As for me, I listen more closely to my body now and take care of myself. I am grateful to destiny. I am naturally optimistic, surrounded by love, and I trust my medical team.