On April 19, 2012, Herman Connor was diagnosed with an extremely rare and aggressive form of kidney cancer, renal medullary carcinoma. Herman’s story is a reminder that regardless of the prognosis, there is always hope. Below is his story told by his sister Cora, who is one of the world’s leading advocates for RMC research and awareness.
My family’s life changed forever in 2012, when my younger brother Herman was diagnosed with renal medullary carcinoma (RMC). In the months leading up to his diagnosis, Herman was experiencing some back pain but being healthy his entire life, he didn’t know what was really taking place inside of his body. He thought it may have been a pulled muscle from working out in the gym. When he woke up one morning and saw traces of blood in his urine, he knew something was wrong, so he drove himself to the local emergency room where an X-ray was performed. The doctor told him that he had a mass inside of his kidney that looked consistent with cancer, but he would have to follow up with a urologist to confirm. After several weeks of testing the biopsy came back positive for RMC.
His local oncologist at the Medical University of South Carolina told him that chemotherapy was not an option as his cancer was resistant to chemotherapy; but they would perform surgery to remove the affected kidney. Six days before Herman’s “scheduled surgery” the doctors at the Medical University of South Carolina informed Herman and my family that they would not be able to perform surgery and nothing could be done for him there. They told us that there were no centers available to treat this rare form of cancer here in Charleston, SC. Worse yet, they couldn’t even give us the name of a center to go to. We were left searching the internet for information – and to be honest, we didn’t find much there either.
The news was crushing to Herman and the rest of our family and left us feeling hopeless. However, as a family, we were committed to saving my brother’s life. Despite being left on our own to find care, we were able to find that doctor. Dr. Nizar Tannir at MDAnderson Cancer Center is one of the leading physicians researching RMC and he agreed to take on Herman’s case. Flying over 1,000 miles to Houston was hard, but it has been worth every mile. Since the moment we met him, he has been committed to saving my brother’s life. He restored what all other doctors had taken away – he gave us hope.
When it comes to RMC, it is hard to have an accurate figure of the number of patients diagnosed in the US, as we suspect that many cases are never accurately diagnosed, but rather just classified as kidney cancer without identifying the true pathology. Renal medullary carcinoma occurs almost exclusively in adolescent and young African American adults with sickle cell trait or sickle cell disease. Because it is so aggressive, many patients die before even receiving treatment.
It has been six years since Herman was first diagnosed with renal medullary carcinoma. We have travelled back and forth from South Carolina to Texas too many times to count. Today, I am proud to report that due to the remarkable care by Dr. Tannir, my brother is a living testimony to powers of research available out there in treating this rare form of cancer. However, not everyone has been as blessed and fortunate as Herman has. Which is why I have dedicated myself to finding a cure for this disease by starting my very own nonprofit organization (R.M.C. Inc.) which has been used as a vessel in spreading the word about this deadly disease, giving hope to others and raising funds to someday find a cure.
Cora Connor is the founder of R.M.C. Inc. and is also a member of KCCure’s Patient Advisory Board. To learn more about her organization, please visit www.rmcsupport.org
