Lori was told by multiple doctors that her renal mass was kidney cancer. Following surgery that involved significant complications, she found out it was a benign oncocytoma.
I went to the ER after coughing up some blood due to a very bad cold. I wasn’t prepared for the words I heard next. On the x-ray, they saw a mass in the top left portion of my kidney. The doctor read the results to us verbatim, last words being “consistent with Renal Cell Carcinoma” (RCC). He gave me an antibiotic for the cough and sent me home.
I called my primary care doctor the next day expecting a referral. She said “Why? I saw the report come through.” I asked her to look again. She came back to the phone, “oh my I think you’re right.”
I was referred to a urologist 30 miles from home. He ordered a CT and confirmed that I had RCC. The tumor was 3 cm, but due to the location of the tumor, he didn’t feel confident that he could do the surgery using a minimally invasive technique. He recommended that I get a second opinion with a doctor who could do the surgery using a robot or a laparoscopic approach.
Finally I found a specialist in Chicago who would do it, and he also confirmed that it was RCC. He showed me the tumor on the CT. The whole time, I was wondering how they could be so certain that it was cancer. The doctors also ordered a PET scan, which found some tiny lung spots, but that just led to more scans being ordered.
This all began the 2nd week of April, 2011. After lots of appointments and additional scans, I finally had surgery scheduled for July 22, 2011 at a hospital in Chicago, three hours from home.
During surgery, they nicked the adrenal vein and had to open me up. Surprise!!! Thirty six staples, five incisions and four days later, I was finally released from the hospital.
The day before going home the surgeon told me my tumor wasn’t RCC after all, but rather a benign oncocytoma. He did say that he was sorry for putting me through everything.
Due to the unbelievable amount of antibiotics before and after surgery I got thrush. Wow, awful. A couple weeks later, I developed a low grade fever which the doctors said they weren’t concerned about. My incision finally burst open from infection.
After 6 weeks in and out of the hospital, the surgeon finally reopened the wound. For four months, my husband had to pack the wound twice a day. It officially was coded as closed by the wound clinic in January 2012. My husband is a saint!
Healing was slow and painful. After a year I felt 80% back to normal. After four years I finally stopped having flank pain every day.
Doctors should work harder to have more diagnostic certainty before recommending an invasive procedure that will change your body forever. My stomach sags badly on one side. The wound clinic asked me the day I officially closed up if I wanted to see a plastic surgeon. At that time I just needed to try and move on but I regret saying no now.
My advice to others is to ask lots of questions. Be your own advocate. I’m glad it wasn’t RCC, but doctors need to decide what to do with this diagnosis before butchering you. I sure wish I could do something to help others avoid what happened to us.
Many doctors will tell patients that they are 90% sure that a mass is cancerous by imaging alone. But for small renal masses, research has found that this level of certainty may be less than 60 percent. Every year, over 5,000 surgeries for renal masses performed in the U.S. end up being for benign tumors. Learn more about how how this is leading to changes in practice. If you have been newly diagnosed with a small renal mass, we have a community just for you.
