In May of 2018, I developed left lower back pain that lasted 3 days. The pain was so severe that when I would take a deep breath, it would just grip me. I assumed it was a kidney stone and went in for a CAT scan. Instead of a kidney stone, the scan showed a mass measuring 2.5 cm on my left kidney.
The radiologist thought it was possibly a cyst that had ruptured and suggested an ultrasound to better characterize it. It is often said that doctors make the worst patients and I am no different. Once I heard the word cyst and the pain subsided, I dragged my feet.
I got back to my normal routine and lived in ignorant bliss, until I had a dream two months later. In that dream, I was watching a TV awards show and Hollywood celebrities were on the red carpet being interviewed. The interviewer looked straight at me and said, “Younger and younger people are getting kidney cancer!” I woke up confused and alarmed.
As a woman of faith, I have no doubt that God gave me that dream. The next day I went and got my ultrasound. The ultrasound showed a suspicious mass. A subsequent MRI revealed another smaller mass that they thought was a cyst.
I still held out hope that it could be benign as I nervously sat waiting for my images to be reviewed by Dr. Viraj Master, a urological oncologist at Emory Winship Cancer Institute. He walked in and calmly told me, that despite not having a biopsy, imaging showed that the mass was likely cancer.
I don’t remember much about that day except for those words. My mother was there taking notes, which was good, because I felt like I was in a fog. As a breast surgical oncologist, I am used to going over a diagnosis of breast cancer with my patients. I am very sympathetic, and while I thought I was empathetic, I really had no idea how my patients felt, until that very moment.
Dr. Master repeated my ultrasound a few days later and it detected that the second mass that was thought to be a cyst, was actually a second cancer. He told me that he suspected I would have more cancers and he needed to look at the kidney and feel it for himself. I was devastated that I would have to have an open partial nephrectomy, a surgery involving a much larger incision and a longer hospital stay. But when he told me he would suggest the same plan for any of his family members, I felt at ease.
My final pathology was Stage 1 chromophobe renal cell carcinoma. In addition to the two tumors from the imaging, he found two more masses the size of rice grains during my surgery. I had a total of four cancerous masses! Because of the type of cancer and the fact that the tumors were multi-focal (meaning more than one), he suggested genetic testing.
Genetic testing showed a mutation in the FLCN gene, which means I have Birt Hogg Dube Syndrome. This puts me at risk for kidney cancers/tumors, collapsed lungs, and skin tumors. My mother has had two collapsed lungs in the past and she was also found to be positive for the mutation.
I would consider myself a type A personality, but this process has taught me that sometimes things happen that are totally out of your control. You have to have faith that things will turn out ok. You can’t worry about what might happen tomorrow, you have to live for today. I am followed closely every 6 months with a CAT scan and MRI and my last scans were clean!
Kidney cancer does not get the same attention as the other more known cancers. Even less is known about chromophobe renal cell carcinoma. I am thankful that social media connected me to KCCure. The work this organization is doing to bring awareness about kidney cancer and advocating for more research is phenomenal and has inspired me to become more of an advocate for my fellow survivors.
Yara Robertson, M.D. is a breast surgical oncologist who practices in downtown Atlanta and in Lithonia, Georgia.
Have you been diagnosed with chromophobe RCC? learn more at KCCure about research for this rare subtype and connect with others!
