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When the Doctor Becomes the Patient

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Published on March 24, 2020

Key Takeaways

  • A cancer diagnosis can be life-changing, even for medical professionals who have years of experience treating cancer patients.  
  • Genetic testing allows patients and their families to be proactive rather than reactive when making treatment decisions.
  • Cancer therapies are always evolving—effectiveness is increasing, toxicity is decreasing, and precision medicine is giving patients hope for the future.

“Now I have the absolute privilege…of taking care of exactly the same patient population to which I belong,” says Dr. Mark Lewis, the Director of Gastrointestinal Oncology at Intermountain Healthcare in Utah. Dr. Lewis was diagnosed with pancreatic cancer in 2009—specifically, a slow-growing variety called pancreatic neuroendocrine tumors, or PNETs. After monitoring the tumors for nearly eight years, he underwent a Whipple procedure in 2017.

Watch now as Dr. Lewis talks about his diagnosis, genetic testing, advances in treatment, empathy and how losing his father to cancer at age 14 inspired him to pursue a career in medical oncology. He also discusses how he and his wife are coping with the discovery that their son inherited the same cancer syndrome that he inherited from his father and grandfather.

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Transcript | When the Doctor Becomes the Patient

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:
Hello. Andrew Schorr from Patient Power here near San Diego in Carlsbad, California, and we're joined by a gentleman I met on the Internet, because he is very outspoken there as a medical oncologist, but also as a patient. That's Dr. Mark Lewis, who joins us from Intermountain Healthcare in Salt Lake City. Mark, thanks for being with us.

Dr. Lewis:
Oh, Andrew, it's an absolute pleasure to join you.

Andrew Schorr:
Thank you. So, Mark, your story is quite an incredible one. Fellowship at Mayo Clinic, practicing as a medical oncologist at MD Anderson in Houston, and then you go to Salt Lake, but along the way you find out that you have a neuroendocrine tumor in your pancreas, not unlike what Steve Jobs had, right?

Dr. Lewis:
Right. That's exactly right.

Andrew Schorr:
And the incredible thing is that's what you have and you've been treated and may have more treatment, but those are the kinds of patients you treat in your practice. You're a GI oncologist, so you're not just a doctor, you're a patient. How has that shifted the way you see things?

Dr. Lewis:
Sure. I think it's given me some real empathy. And again, I'm not just paying lip service to that. And as you pointed out, Andrew, I'm a medical oncologist. I have not yet received chemo, so I haven't had that taste of my own medicine.

Andrew Schorr:
But you did have the Whipple procedure, which is a major, major abdominals.

Dr. Lewis:
Yeah, that's how I got my, my caring card and I should say in the GI cancer community, as I went through the Whipple, which is a big operation. Even that experience, it taught me a lot. It taught me that these operations can be life-changing. At one point, I wondered if it was going to end my career. Even though I haven't had chemo per se or radiation, all of these things may play a role in my later treatment. And again, I hope it makes me authentic when I say that I really do now appreciate it from the other side of things, how a cancer diagnosis can affect you, how it can threaten your ability to do the job that you love. And frankly, my personality is almost inextricable from my work as an oncologist.

I went into oncology, because my father died of cancer when I was 14. I didn't know then that he died of a hereditary syndrome he passed down to me. It's all kind of just come full circle, and now I have the absolute privilege here at Intermountain of taking care of exactly the same patient population to which I belong. I sort of feel remarkably fortunate. I have definitely benefited as a patient from the care here. I try to pay that forward to those under my care.

Andrew Schorr:
You know the question that you must get asked a lot, I've asked it of my doctors, "What would you do, doctor, if you were me?"

Dr. Lewis:
Yeah, exactly. I can usually answer that. Especially when it comes to surgical decision-making, I can counsel them. I can also provide counsel about genetic testing, sort of the key to figuring out my syndrome, there were certainly some clues in the history of my father and my grandfather who both died in the same condition.

But then to prove our suspicion, I needed to get testing, germline testing and that comes with the benefit of knowing and then allowing other family members to be tested, but it comes at the risk of frankly, discrimination. So as you're well aware, Andrew, we do have federal protection in this country under the Genetic Information Nondiscrimination Act. However, if you are known to have a cancer-causing mutation, it can profoundly affect your life insurance, your long-term disability, the latter of which you might really need if you get seriously ill. I can counsel patients on that perspective too.

Andrew Schorr:
Right. Okay, so this is very personal. You have two children?

Dr. Lewis:
Yeah.

Andrew Schorr:
You have a son who is Allen, I think named after your father, right?

Dr. Lewis:
That's right.

Andrew Schorr:
And then Emma. Allen is just 9. We should mention that your wife Stacia is a pediatrician.

Dr. Lewis:
Correct.

Andrew Schorr:
And you did this testing to find out that Allen is positive for this syndrome that has run in your family. Now, he's a healthy kid.

Dr. Lewis:
He is, he's in great shape.

Andrew Schorr:
But when there's this hereditary connection, that's kind of—well, for us not being doctors, Mark, that would be pretty daunting.

Dr. Lewis:
Yeah, it's interesting. So first of all, you know we're taught in genetics that a autosomal dominant condition, basically your children will have a 50/50 chance of inheriting it from you, and that's exactly what happened in my family. I have two children. One is unaffected, the other is. And frankly, with Allen and here, I have to give full credit to my wife being a pediatrician and an expert in child development, as strange as it sounds, we've tried to normalize for him the notion that he has this disease. We know that he's going to carry this his entire life. Testing so far has not been too invasive. There have been a couple MRI scans and a lot of lab work, but he's almost getting accustomed to that.

He's not scared of medicine or doctors. I think maybe it helps having a mother and a father who put on the white coat. But yeah, we've tried to prepare him that this is going to be a lifelong process. I'm actually really excited, as strange as word might sound, to see how things are going to progress for him. I think his care ultimately might be a lot less invasive than what I've even gone through so far. I don't think, I hope, he won't need the Whipple surgery for instance. But yeah, things are getting better all the time. And frankly, we believe in being proactive, not reactive in terms of his longitudinal care.

Andrew Schorr:
So, Mark, here you are, the third person in your family, as best you know, to be dealing with this and the other, your father, your grandfather passed away from it.

Dr. Lewis:
Right.

Andrew Schorr:
You've had what could be life-saving or life-extending surgery and other treatments like you deal with in your very own practice.

Dr. Lewis:
Yep.

Andrew Schorr:
How do you see the future, Mark? I mean, you're going to work every day, you're trying to help other people with GI oncology conditions, and you have your healthy son who you’ve got to worry about too. So how do you get up in the morning?

Dr. Lewis:
Well, again, I've seen so much progress. My father died 26 years ago now, and his oncologists were wonderful, don't get me wrong, but treatment then was incredibly difficult. It was very, very toxic. And I think the answer to your question, Andrew, is that incrementally and not nearly fast enough, I'll say, we are increasing our effectiveness and decreasing our toxicity, so things are getting a lot more discriminating. I think the sort of the holy grail in oncology is targeted therapy.

So, for instance, I know the single gene, in fact the single point in the gene, where my own germline went wrong. And I'm not saying that I would undergo a CRISPR gene editing right this moment, but I can actually foresee a future where we are really living out the promise of precision medicine, knowing someone's specific defect, whether it's germline or somatic, meaning in them or in their tumor, and then narrowing in on that.

Already in my practice, it's not unheard of for us to do testing of someone's tumor and find an Achilles' heel, if you will. And just again seeing how much better tolerated and more effective treatment has gotten in the previous decades, it makes me excited to come to work every day and take care of people. I mean, honestly, to give you one example, immunotherapy barely existed a decade ago. I vividly remember the first time I used it in my fellowship in 2011 for a patient with melanoma, and now it is easily the fourth sort of column of oncology after chemotherapy, radiation and surgery. It's just remarkable, it makes you wonder where we'll be a decade from now.

Andrew Schorr:
Right. Well, Mark, we'll hope that you get the benefit of this progress that you're part of. And your son for sure, that he just keeps growing and thriving and running around and keeps up with his older sister, where you've got a two devoted healthcare professionals, your wife and yourself. Mark, we look forward to having you back.

Dr. Lewis:
Oh, I'd love that.

Andrew Schorr:
And because I think the doctor as patient is a compelling story and here, you're in the specialty that covers what you've got.

Dr. Lewis:
Yeah, yeah, exactly.

Andrew Schorr:
And it's been in your family. And in this whole area of testing either genes that run in your family or genes that go awry from your cancer and then what do you do about it, including can you activate your immune system, as you just said, to fight it in ways we've never had before or even edit the genes that you talked about, CRISPR. So, we have a lot more to talk about. Mark Lewis, from Salt Lake, we wish you all the best. We'll have you back. Thank you for being with us today.

Dr. Lewis:
Oh, it's been my absolute pleasure, Andrew, and I wish you and your audience the best of health.

Andrew Schorr:
Thank you. Andrew Schorr. Remember, knowledge can help lead to the best of health.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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