Tuesday, September 10, 2013

A Surprise Diagnosis Renal Cell Carcinoma

Kevin’s battle with kidney disease started more than 5 years ago, when a benign tumor was found on one of his kidneys. A partial nephrectomy was performed, removing the tumor. It was expected that the remained of that kidney, and his other kidney, would be sufficient to sustain him. But the other kidney never took over the full duties so 5 years ago, Kevin was put on the Kidney Transplant Waiting list with a Critical status.

As so few Americans are registered organ donors, there have been NO cadaver organs available for him. So Kevin has languished, his condition worsening each year, his Gross Filtration Rate (GFR) worsening. Astoundingly, he was able to avoid dialysis. It was surprising to his doctors. They ultimately assumed that his fitness regimen of running and biking, must have been keeping the toxicity levels low enough.

A year ago, his symptoms were escalating,  a scan was done. A tumor was evident in his other kidney and Kevin was immediately removed from the transplant list. The transplant team said that until surgery & pathology tests could be performed, and proven to be cancer free, he had to stay off the list.

Surgery was done in early October 2012. I was certain the pathology results would show that this tumor was benign, like the one in his first kidney. His wife and I were stunned when post surgery, the Dr. came to see us and informed us that he was certain it was cancer, but they would wait until the pathologist’s report came in. A week later, that report came in and confirmed the Dr.’s initial diagnosis – It was malignant and specifically, Renal Cell Carcinoma.

To say that we were surprised by the diagnosis, is an understatement. His doctors explained that as they felt all of the tumor was removed and with no lymph gland involvement, no further treatment was called for. But then more bad news, they told us he could NOT return to the Kidney Transplant List for a year or two and then only if no signs of the cancer return. kidney_cancer

Renal Cell Carcinoma – with this new diagnosis, I began researching this cancer. It is thought to be the most deadly urological cancer and responsible for 80% of all kidney cancer cases. This diagnosis put more of a sense of urgency within me, to continue the hunt for a live donor, but as Kevin was off the transplant list, I couldn’t. Had a donor been found during this period, they transplant team wouldn’t have even talked with them – if Kevin’s off the list, he’s off the list.

Amazingly, after a cancer free scan in August, the Transplant Team approved that Kevin be put back on the transplant list. He is at a critical status.

With his health failing as quickly as his GFR and levels of toxins in the blood rising, Kevin had no choice but to begin dialysis in early summer. Strange irony – dialysis itself IS a known cause of Renal Cell Carcinoma. The clock is ticking. Kevin’s best hope for LIFE is to get a new kidney.

If you’re interested in learning if you could be a donor, please visit Penn Transplant Institute’s site, and fill out and fax them the Live Donor Referral Form.

You can also help by simply SHARING this blog on your own blogs and social media accounts.

1 comment:

  1. Hi! I just got reading through a few of your posts and I had a quick question. I am involved in the cancer community and was hoping you could email me back when you get the chance. Thanks! - emilywalsh688(at)gmail.com.