Mark Ball, MD, Urologic Oncologist at the National Institute of Health, talks about treating a very rare cancer.
Interview conducted by Ivanhoe Broadcast News in 2024.
Did you first meet Katie Coleman? Tell me about how you guys first met and where it went from there.
Ball: I first met Miss Coleman via email. In fact, we work with a number of patient advocacy groups who refer patients to us, and there were a couple of different groups that reached out about her case because it was very unique.
She was first diagnosed with oncocytoma, and what exactly is that?
Ball: An oncocytoma is a tumor that arises in the kidney that is generally thought to be benign. It’s not cancer, it doesn’t spread, it’s not aggressive. And the way she was diagnosed, she had a CT scan that showed a renal mass that then she had a biopsy. The biopsy showed oncocytoma.
So talking about the symptoms before early stages until on the symptoms of this?
Ball: Yeah. For most patients, there are no symptoms at all unless a tumor gets very large. In Miss Coleman’s case, she did actually feel fullness in her side and was concerned that there could be a mass there.
So hers was aware because it spread. Let’s talk about your journey through that and hers.
Ball: Sure. We see dozens of patients with oncocytoma. And generally, what we tell them is, this is not something you have to worry about. This doesn’t behave like a cancer that’s going to spread and be threatening to your life. In miss Coleman’s case, this actually did spread, and spread to her liver in multiple spots. So that in itself is a very atypical situation.
Has that been seen elsewhere or is she one in a million? Give me some numbers on that. How rare?
Ball: Yeah, it’s pretty rare. It’s been reported a few times in the medical literature, but these are really small case reports of less than 10 cases. So this really is a one in a million case.
Let’s talk about and mention that this was one of the only cases in the US.
Ball: Yes. This is the only case I’ve ever seen or really heard of other than reading about in medical literature from other countries, talking with other experts in the field who’ve been doing this for a long time, they’ve maybe seen one or so. But this is pretty rare.
So now it’s rare that it’s spread. How did it spread?
Ball: It’s a good question, and we’re not really sure how this spread from the kidney. The kidney has a very vascular organ, meaning it has a lot of blood vessels. And so if a tumor is going into a blood vessel, then it could potentially get into the bloodstream and spread that way. And that’s our best hypothesis.
That’s the best hypothesis. And you found out that it was a different type of tumor, and that was a neoplasm. What is that? And how is it different from what you thought it was?
Ball: So generally, when we see a tumor in the kidney and then something that looks like it spread metastasis to the liver, we assume this is renal cell carcinoma. That’s the most common type of kidney cancer. And so a lot of the work we did was to prove that this wasn’t that. We did a number of tests, looking at how it looks under a microscope, looking at DNA changes, and so forth to prove, no, this wasn’t a traditional cancer. This was an oncocytoma.
Does this type of tumor usually occur in younger people, like Katie?
Ball: Yeah, oncocytomas generally we think of in the distribution of people who get kidney tumors are usually in their 50s, 60s and 70s. So to have someone this young with a large kidney tumor is atypical. We see it sometimes, but it’s not common.
So young with something, two very atypical situations. And how did you address that?
Ball: Yeah, well, one of the things we see a lot here at the National Cancer Institute are atypical things, and we’re a referral center for that. So I think that’s why the advocacy groups reached out and why Katie reached out to get our opinion about things.
Talk to me about surgery. How did that go?
Ball: Yeah. So any surgery is a multi disciplinary approach, but this case even more so, because it had several components. One was the kidney component, which our team tackled. So it was removing her right kidney. But there was also the liver component. So one of my good colleagues in the surgical oncology branch here, Jonathan Hernandez, who is a liver surgeon tackled that component, that was both removing some of the liver lesions and then also using energy to ablate or to burn the other tumors that he couldn’t take out with traditional surgery.
Did she need follow up? Was it radiation?
Ball: Yeah. So Katie did receive some chemotherapy before surgery. But after surgery, we were able to remove the kidney and remove the vast majority of the liver lesions. She did need one more ablation session to burn some small remaining tumors. And then after that, she was tumor free without any need for further chemotherapy or radiation.
Is she cured? Is she going to have to come back? Is this something we’ll keep an eye on?
Ball: This is definitely something we keep an eye on. We’re at almost three years now from her surgery. And so far, things look great. We hesitate to use the word cure until we have more and more time. But the more time goes by the more we’re hopeful that this did the trick.
Do you think, at this point, you could easily say she’s in remission?
Ball: Yeah, I would definitely say she’s in remission. She is what we call NED, no evidence of disease.
What advice would you give other patients, like Katie, who feel that there is no other help or hope for them?
Ball: That’s a good question. I think in many cases, there is help and hope. And I tell patients often don’t hesitate to reach out for a second or third opinion. Medicine is a science, but it’s also an art, and people see things from a different perspective sometimes. So if you’re not hearing what you think you should be hearing, it’s okay to reach out. And if there’s a consensus, then that may be the case, but oftentimes, getting multiple opinions can lead to a different outcome.
What would have happened if Katie would not have found NIH?
Ball: Katie was also seen in a number of other excellent cancer centers. And so she was receiving chemotherapy, and she may have also had a chance to have surgical procedure elsewhere, but I think that the timeline we definitely moved that up by being seen here at the NCI.
Is there anything I’m missing or we’re leaving out or you want to add about Katie’s case or what you’re doing?
Ball: I think one thing to note is a cancer diagnosis can be life changing, and I don’t want to speak for Katie, but she has certainly really taken on the role of a patient advocate now. She has referred a number of patients here. She speaks at national cancer conferences now about her experience. And I think that she turned something that was a very maybe dark time in her life to something very positive and really proud of what she’s doing.
END OF INTERVIEW
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