More Renal Cell Carcinoma Treatments Improve Patient Outcomes: George and Shaun’s Stories

 

“I thought it was a hernia.” When George Benson experienced lower abdominal pain in 2009, at age 51, he wasn’t concerned. He was a truck driver, artist, and family man. Most of his concern was whether his son, who was in the military, would come home soon. The pain? Not important. Perhaps, during his busy days, he simply injured himself. But it wasn’t enough to see a doctor – it couldn’t be. Until the pain worsened. When he finally visited his doctor and got tested, they found a cancerous mass on his kidney: renal cell carcinoma. Within 2 weeks, George was in the hospital having the 10-pound tumor removed.

Just three years before, 51-year-old Shaun Tierney thought he pulled a groin muscle playing golf. His doctor thought it might be bursitis and prescribed medication. But in 2007, he was officially diagnosed with advanced stage 4 kidney cancer.

According to CURE, around 70,000 Americans are diagnosed with renal cell carcinoma or kidney cancer each year. Early diagnosis is key to patient survival – but unfortunately, there were previously a lack of effective and accurate diagnostic tests. However, as the medical field develops, so do additional treatment options, allowing for better outcomes for patients like George and Shaun.

Renal Cell Carcinoma

Renal cell carcinoma is a kidney cancer that begins in the kidney’s tubules. As it is extremely aggressive, it easily spreads to the lungs, liver, and other organs. It usually starts in one kidney, but is occasionally present in both. Despite its rare status, renal cell carcinoma remains the most common adult kidney cancer. It is generally presents between the ages of 50 and 70. Risk factors include being male, obesity, a history of smoking, prior kidney problems, high blood pressure, and PRCTFE3, and VHL gene mutations.

Many patients are often asymptomatic, or symptoms may not appear until the cancer has spread. Symptoms include:

  • Rusty-colored urine or bloody urine
  • Abdominal pain
  • Unintended weight loss
  • Fatigue
  • Anemia
  • Fever
  • High blood pressure
  • Changes in vision
  • Enlarged testicles or varicose veins on the testicles

Learn more about renal cell carcinoma here.

Renal Cell Carcinoma Treatment Options

If caught early, the 5-year survival rate for kidney cancer is 90%. But by the time it advances, the survival rate falls to just 15%. But with indistinct (or no) symptoms, diagnosis isn’t always easy. In fact, most kidney tumors are only found when doctors are searching for another condition.

Renal cell carcinoma tumors are usually not solid tumors like you might find in breast or lung cancer. Rather, these tumors occur with abnormally formed blood vessels. Says Dr. Toni Choueiri:

“For years, scientists have known that mutations in the tumor-suppressor gene VHL led to Von Hippel Lindau syndrome, a rare disorder that makes patients more vulnerable to kidney cancer.”

A mutated VHL gene makes the body believe that it doesn’t have enough oxygen, even if there is plenty of oxygen. So a protein called HIF-1-alpha, and genes like VEGF, become more active, forming new blood vessels. However, this ultimately allows the cancer to thrive.

Renal cell carcinoma, and kidney cancer, don’t respond well to chemotherapy or radiation. So, in the past, surgery seemed like the best option for treating kidney cancer. But surgery is not always effective. In 33% of patients, the cancer returned following surgery. Additionally, interleukin-2 (IL-2) treatment was somewhat helpful in some situations.

Recent Treatment Advances

However, more recently, researchers wondered what would happen if they could cut off blood vessel access from the cancer. This led to VEGF inhibitors as treatment options. Additionally, checkpoint inhibitors and immunotherapies were found to be extremely effective.

In 2019, researchers combined VEGF inhibitors and immunotherapy. Overall, they saw a 60% response rate in treated patients.

But do patients need to stay on treatment forever, or can they eventually stop? Right now, scientists aren’t quite sure. However, they do note that treatment could be paused if a patient experiences a really great result, like 80% tumor shrinkage. In the interim, suggested treatments for patients with renal cell carcinoma and advanced kidney cancer include:

  • PD-1/CTLA-4 immunotherapy combination: for patients with moderate to high risk factors
  • VEGF inhibitors: for patients with low risk factors
  • VEGF inhibitor and PD-1 inhibitor combination: for patients with low risk factors

Currently, there are around 14 FDA-approved treatments for renal cell carcinoma and advanced kidney cancer.

Clinical Trials

Moving forward, researchers will run clinical trials to test the efficacy of HIF-1-alpha inhibitors on renal cell carcinoma.

Patient Stories

George’s Story

After visiting his doctor for the pain, George’s doctor ran a variety of tests. His diagnosis came back as Stage 3b, requiring frequent follow up scans for years. Unfortunately, in 2016, George’s scans revealed a growth in his right lung.

The available treatment was interleukin-2 (IL-2), a cytokine-signaling immune molecule. When treated with this therapy, IL-2 increases the activity of lymphocytes, a type of immune cell. By prompting an immune reaction, IL-2 encourages the body to actively fight cancer.

However, George experienced a myriad of side effects: low blood pressure, dizziness, heart palpitations, body aches, and pains. While he wanted to treat his renal cell carcinoma, these side effects wore him out.

Eventually, George was switched to another combination: one which effectively treated him and improved his quality of life. Now, George spends his days with his wife of 35 years, Brenda, and his three children.

Shaun’s Story

In 2006, Shaun and Mary Tierney’s children had all left the house. But the pair enjoyed the freedom of being empty nesters. However, when out playing golf, Shaun felt some pressure and pain in his groin muscle. His doctor prescribed Aleve, but the pain only worsened over the next few months. Instead of being confined to his groin, the pain ran up and down the right side of his body.

At the start of 2007, Shaun returned to the doctor. An ultrasound revealed sobering news: stage 4 bilateral kidney cancer which spread to his liver, bones, and lungs. The cancer was inoperable and chemotherapy and radiation-resistant; Shaun felt like he had limited options. Unlike George, Shaun was ineligible to take IL-2 because he also has multiple sclerosis.

But Shaun wasn’t going to give up. He visited the Dana-Farber Cancer Institute, which was using a newly-approved VEGF inhibitor called Sutent to treat advanced kidney cancer cases. Shaun jumped on the opportunity to try this unique therapy. First, he was required to undergo 12 sessions of radiation. Then, he began Sutent.

Only six months later, Shaun’s tumors had shrunk, some by half of their size! He isn’t alone; Sutent prompts similar responses in around 40% of treated patients, largely improving survival rates.

For 13 years, Shaun remained on Sutent, with the occasional 2 week break period. During this time, he grappled with side effects like high blood pressure, nausea and vomiting, diarrhea, and fatigue. This severely impacted his quality of life. So, more recently, Shaun was switched to a PD-1 inhibitor and VEGF inhibitor combination.

Since his diagnosis, Shaun became a patient representative for Dana-Farber’s kidney cancer program, fundraised for cancer research, and joined advocacy and support groups.


Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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