Neuroendocrine Tumors: Hereditary Risk



Shubham Pant, MD: So, tell me this. Your story seems to be very different from Larry’s story. When he was told that he had cancer, he was not devastated but just had a “Is my life going to end?” You think of morbidity and he talked about it. When you heard of your diagnosis, what’s the first thing that came to you mind?

Maryann Wahmann: Relief. Most people would say a cancer diagnosis is a horrible thing, and yes, it is a horrible thing. But to me, it was a blessing because, first of all, I had what was causing the problem. And that I knew that I could be treated and be able to control it. But the other thing is that I’ve gotten to meet and work with the most amazing doctors, the most amazing people. With my organization, we have literally helped tens of thousands of people through the years through their journey. And so, to me, it was really a blessing.

Shubham Pant, MD: That’s amazing. So, we had interviewed somebody for another show and they’d said it’s like an ironic blessing, what happened. It’s a complete change of where your life was headed probably.

Maryann Wahmann: It absolutely was. I was a homemaker. I have 2 beautiful, young children, and this was the furthest thing from my mind that I would be a patient advocate traveling all over the country helping advocate for patients. I never in a million years dreamed of this. But because of my diagnosis, I have helped so many people, and I have helped my family. My daughter was diagnosed at 22 years.

Shubham Pant, MD: At 22. Tell us a little bit about that.

Maryann Wahmann: She was showing symptoms and I pushed and pushed and pushed and finally, the doctor said, “OK, we’ll do some blood work. Nothing too much to worry about.” And before she left for school I said, “She needs to have something done.” And they found the tumor in her stomach and she was very, very lucky. They said that chances are they probably discovered it 15 years or 20 years before anybody else could have found it.

Shubham Pant, MD: Is it common, Dr. Morse, for it to probably run in the family? Like we know in breast cancer, you have these genes, BRCA1/BRCA2. Is it common for neuroendocrine tumors to run in the family? And that’s a broad statement, neuroendocrine tumors, but…

Michael A. Morse, MD: Yes. It, of course, is known by doctors that there are certain syndromes—the multiple endocrine, the aplasia syndromes—but those are really rare. Originally, it was thought that it was sporadic, it wasn’t really a hereditary cause. But now there are families that have been identified where multiple members do. And in fact, the more you ask these questions, it’s really important to take a family history when people come to see an oncologist. Because if you take a broad enough family history, you start finding that there actually are up to 20 percent to 25 percent of families where somebody else has a neuroendocrine tumor. And there is some research suggesting that there are certain genes that may in fact be the cause of those hereditary syndromes that haven’t been characterized so far. So, as is the case with anybody who comes to see us, when we take a family history, if we sense that there is one, we’ll certainly ask people if they want to have specific testing done. At our institution, of course, we have hereditary cancer counselors who can…

Shubham Pant, MD: Genetic counselors?

Michael A. Morse, MD: Genetic counselors who can take people through that process. Many people choose not to do that because of concerns over insurance and so on. I think that was something you had brought up.

Maryann Wahmann: Right, yes. That was one of our concerns. At 22 years old, do you really want to label someone?

Shubham Pant, MD: Somebody with a kind of chronic disease in a way?

Maryann Wahmann: Right. And so, we chose not to do any testing at this point. But she goes in and she has her routine tests. And because we found this so early, the chances of it ever metastasizing anywhere else is very slim, and we’ll just stay on top of it. So, to me, like I said, this disease was a blessing in a way and maybe the reason I got diagnosed and became an advocate is to save my child’s life or to save another person’s life.

What we do at the Neuroendocrine Cancer Awareness Network isn’t only about me or my family. It’s about patients out there, and we have to think about the next generation and get more research out there and get more drugs out there to help us. It’s not about what’s going to happen now, it’s about what’s going to happen in the future.

Transcript Edited for Clarity

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