by Sue Ann Rybak
Chestnut Hill resident Bryan Lewis will never forget the day his doctor diagnosed him with kidney cancer. At 47 years old, he had no prior symptoms such as abdominal or back pain, weight loss or loss of appetite.
He recalled how he noticed some blood in his urine and decided he better get it checked out. Later that evening, he went to the emergency room after experiencing abdominal pain.
“The ER doctor initially said he thought it was kidney stones,” said Lewis, who is executive director of Action to Cure Kidney Cancer, a nonprofit organization whose mission is to raise funds for kidney cancer research in the effort to find a cure.
He was given a routine blood test and advised to get a CAT scan as a precaution.
“Sometime around 2 a.m,” Lewis said. “In a curtain enclosed area of the George Washington University Hospital’s Emergency Room in Washington, D.C., a 20-something ER doctor said, ‘Mr. Lewis, we found some significant abnormal growth on your left kidney that we are fairly certain is a tumor,’” said Lewis, the father of 1-year-old twins at the time. “The doctor said, ‘it is likely cancer.’ My world changed forever.”
“In 2015, it is estimated that there will be 61,560 new cases of kidney and renal pelvis cancer and an estimated 14,080 people will die of this disease,” according to the National Cancer Institute.
But Lewis was one of the lucky ones. It was discovered in the early stages.
It’s just one of the reasons he feels compelled to give back.
According to the American Cancer Society, kidney cancer is among the 10 most common cancers in men and women.
Lewis said a colleague introduced him to Action to Cure Kidney Cancer (ACKC) and their advocacy efforts on Capitol Hill to increase funding for kidney cancer research.
“Kidney cancer research has had a rising incidence level during the past decade, yet has been grossly underfunded compared to other cancers in the top 10 of incidence levels, said Lewis, who turned 54 in March.
Since 2006, ACKC has awarded more than $6.3 million to kidney cancer researchers. This year the organization hopes to raise $50,000 by holding a series of two-piano performances by Brenda Casey and Pat Todd.
ACKC will hold its third concert at 7 p.m. Tuesday, June 23, at Springside Chestnut Hill Academy, 8000 Cherokee St., in Chestnut Hill. The concert is free and open to the public, although donations will be accepted to benefit kidney cancer research.
Todd, 77, of Guilford, Conn., said kidney cancer was hard to diagnose because there is no early screening test. She added that often it is discovered incidentally while undergoing tests for another condition.
“Early detection is critical because there is no chemotherapy or radiation treatment,” she said. “If it is found early, your chances of survival are very high, but there are no distinguishing symptoms. However, changes are symptoms of a problem, and an alert doctor will try to find out what is causing the changes.”
Unfortunately, her husband’s cancer went undiagnosed until it was too late.
“My husband loved to play squash, tennis, paddle ball and loved to bike and swim great distances.” she said. “He had a shell that he rowed in for hours. He was never ill, but throughout his life suffered what we jokingly referred to as the Todd Sinus – chronic sinus congestion.
“Around 2000, he was turned away at a blood drive because he was anemic,” said Todd, another board member of Action to Cure. Over the years, he had donated gallons of blood. That was the first sign. He had a physical every year. That same year, he was diagnosed with high blood pressure. There was the back ache which he blamed on lifting his row boat. When I look back on that back ache, I know it was the kidney – it was in his flank, it wasn’t a disc type back ache. There is a long list of changes, yet, his doctor never pursued them. He himself was in chemotherapy for Hodgkin’s lymphoma at the time. We didn’t know that at the time. Ken was always seen by his assistant.”
She said it was very difficult for them to see another doctor near them because Ken’s primary care physician refused to sign “a release of recommendation” for his insurance company.
“When Ken started having night sweats that completely soaked the bed, he said, ‘I can’t live like this,’” Todd said.
She said her husband’s sinus problem became “horrible.”
“We went to see a specialist about his cough and sinus which was much worse, but a chest X-Ray revealed nothing,” Todd said. “Finally, after at least 18 months of progressively awful symptoms, a doctor of infectious diseases listened to us and said, ‘This sounds like cancer.’
She said an abdominal scan later revealed that he had “a size able tumor in his kidney.”
“We were shocked – neither of us had heard of kidney cancer,” Todd said.
Prior to Ken’s diagnosis, Todd had searched the web repetitively, desperate to find out what was wrong with her husband.
“When I found kidney cancer, I discounted it because he never had blood in his urine,” she said. “And the backache had gone away.”
She said after he had extensive surgery to remove the tumor, his kidneys and a lot of lymph nodes, “he felt wonderful.”
“No more sinus problems,” Todd said. “But it was too late, the tumor had spilled over into the renal vein. Had it been discovered earlier, as an incidental finding, he would have been one of the lucky ones. He never had blood in his urine. The tumor was up against his adrenaline glands, wrecking havoc with his systems.”
Neither Bryan Lewis or Ken Todd had a history of kidney cancer in their family.
Lewis said he traced both sides of his family’s history back three generations.
“My mother is 97 years old and living with my father, who is 90 years old, in Virginia,” he said. “My grandfather on my mother’s side lived to be almost 101 years old and my other grandparents lived well into their 80s.”
Lewis commented that men are twice as likely to get kidney cancer as women. He added that a recent study by the Veterans Administration found that the chances of getting kidney cancer among veterans is double that of the general population.
He said even though kidney cancer is among the top ten most common cancers in men and women, it continues to be underfunded compared to other cancer types like breast, prostate, and ovarian.
Through ACKC’s advocacy efforts, the organization has initiated an appeal to the House Labor, Health and Human Services and Education (LHHSE) sub-committee to request that the National Cancer Institute develop a strategic plan to combat kidney cancer.
“Over the past eleven years, we have focused our major efforts on educating the House and Senate about kidney cancer and urging Congress to appropriate money for the Congressionally Directed Medical Research Programs (CDMR) of the Department of Defense specifically for kidney research.
“Through our efforts since 2006, Congress added kidney cancer to the list of diseases that are eligible for grants as part of the DOD’s peer reviewed programs,” he said. “As a result, kidney cancer researchers have been awarded $7.5 million in grants for kidney cancer research.”
He added that funding for research is vital. Without funding for research, scientists cannot develop screening tests and medical treatments for kidney cancer.
“Together, we can find a cure for kidney cancer,” said Lewis.
For more information about Action to Cure Kidney Cancer or Concerts to Conquer Kidney Cancer go to ackc.org.