When Dr. Nizar Tannir ran out of treatment options for patients with Renal Medullary Carcinoma (RMC), a rare kidney cancer, he left his private practice to research a cure. To take on this uncommon disease, he would need the brightest young researchers and a community of supporters whose commitment to new discoveries is as relentless as his. He found an ally in Conquer Cancer researcher Dr. Pavlos Msaouel. In this episode of Your Stories, the friends and colleagues share the stories of patients who inspire their work and the breakthroughs they've discovered by leaving no stone unturned.
I would like to ask you, Nizar, you went into private practice for many years. What made you come back into academia?
I was in practice many years in rural Kentucky and had a very thriving practice and were seeing patients, young and old, blood disorders, as well as cancers of different types. In ‘92, I diagnosed my father with prostate cancer. I treated him in my practice and he did well for eight years from ‘92 till 2000. And then unfortunately the cancer came back, and he deteriorated. At that moment, I decided that I needed to get back to academia. I needed to be involved in discovery.
Then you started focusing on Renal Medullary Carcinoma, otherwise known as RMC, which is a rare but highly aggressive kidney cancer. What made you focus on this disease?
I started getting referrals of young people with kidney cancer with these rare and aggressive types of kidney cancer. I visited this 39-year-old patient with aggressive Renal Medullary Carcinoma, and unfortunately, he was on his last few days of his life. I was trying to tell him that unfortunately, despite all our efforts, I didn't have any more treatments to offer him. He surprised me with his answer. I remember those words ringing in my ears. He said, ‘What do you mean you have no more to offer me? … I have a six-year-old daughter.’ I left defeated. Felt that RMC had won again, and snatched the life of this young man. I realized that if anybody is going to do something, it's us. We will have to do it. And that's really when I decided that we have to honor the legacy.
So tell us a little bit how activism has accelerated research into Renal Medullary Carcinoma.
There was another patient of mine that I had the privilege of taking care of in 2012. We treated him with chemotherapy. Fortunately, he had a good response and he's alive today, seven years later, and he's been the start of hope for patients with RMC. People have contributed to the research project that we started together and we owe it to that dedication – unwavering dedication – to make a difference in the lives of future patients with RMC.
Then I joined your clinic and I became infected with your obvious enthusiasm and dedication for helping patients with rare and aggressive kidney cancers. What made you push me to the direction of RMC?
I remember my mentor, who said: ‘If you want to succeed, make a difference, and advance the field... bring in young, smart people to work with you.’ And it was my good fortune that you came to my clinic as a first-year fellow. You said ‘I would like to join your clinic. I'm interested in kidney cancer. Prostate cancer.’ I remember how impressed I was? You had fantastic training. You had energy. I could see it in your eyes. Your commitment. And I said, wow. This young man is going to help us correct the mystery of RMC.
What are the challenges that you are experiencing and obstacles in your research on RMC?
One of the challenges, of course, is patient awareness. And this is where having patient advocates and active social media efforts and awareness about our clinical trials and our research is very important. We opened our clinical trial in August 2018. And in just nine months, we enrolled 14 patients out of 30 projected. This is fast for such a rare cancer. And this is in large part thanks to the community efforts to raise awareness.
Do you believe that we will make really good progress in the next few years?
I believe so. Progress will be step by step. We do research in the laboratory trying to find more therapies, trying to design the next steps, the next clinical trials for Renal Medullary Carcinoma and other rare kidney cancers. Rare cancers can essentially serve as the Rosetta Stone that can inform more common cancers. We gain fundamental insights by studying rare cancers. So, one of the things that I see next is that we will be using those insights that we're gaining step by step, not only to help patients with this rare and aggressive cancers that desperately need it, but also many other people.
What is still missing for us to go to the next step?
One thing that will be crucial in this effort to find therapies and understand these rare kidney cancers will be national and international scientific collaborations. This is absolutely key. This is one of the many things that you taught me. It takes a village. This is why we are forming an organization that will be bringing together all stakeholders that are so important. The patients, the caregivers, physicians, researchers, academic thought leaders to accelerate discoveries for both RMC and other cancers that are similar to this disease. And this is what makes me optimistic about the future.
What would you say now to all the patients you and I are seeing?
I would say that if there is one thing that I can promise with 100 percent certainty is that we will leave no stone unturned. We will not stop working to find treatments and ultimately find a cure for this cancer.
That is our commitment to the patients and their loved ones, that we will continue our march onward to find a cure.
You can be part of Dr. Tannir and Dr. Msaouel’s village by supporting research for rare cancers. Learn about breakthroughs for all types of cancer made possible by Conquer Cancer donors at CONQUER.ORG. Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode.
Thanks for listening to Your Stories: Conquering Cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.
