Larry Pleasant and Maryann Wahmann reflect on what they have learned since their neuroendocrine tumor diagnoses and remark on the importance of patient advocacy and education.
PUBLISHED October 27, 2017
Shubham Pant, MD: Maryann, you talk to a lot of patients. Do you think they are aware of all the treatment options, or do you feel like you have to educate them quite a lot, at least in the beginning?
Maryann Wahmann: I think that they still need a lot of education out there. There’s still a lot of unknown for the patients. And if they’re using a local doctor, a local GI doctor, they might not have all the updated information of which scans to have done and which tests need to be done, what blood work and stuff like that. So, yes, the patients usually are the ones who bring them back the information. We send out the information packet and a lot of times they’ll call us up and say, “Can you send us another one? I brought it to the doctor and he’s very interested in the information you sent.” So, we’ll send them out to the doctors’ offices as well.
Shubham Pant, MD: That’s very interesting. So, Larry, tell me, what advice do you have for patients who are trying to manage their diseases since you’ve been managing it for now six years? We need some advice here.
Larry Pleasant: Well, obviously don’t get it on the first place.
Shubham Pant, MD: I don’t think that’s a choice, unfortunately.
Larry Pleasant: That would be my best advice. But recognize as early as you can after the diagnosis that it isn’t a death sentence, that it isn’t something that has to change the character of your life traumatically for the rest of it. Because it really doesn’t, at least in my experience. If you manage it properly, if you have very good medical care, if you follow the care and follow the treatment plans and do you part as a patient, then I’m optimistic about living a long, fruitful life with a disease. And it sounds as if Maryann is, too.
Maryann Wahmann: Yes.
Shubham Pant, MD: Maryann, you’ve given advice to a lot of patients. So, what is your main advice that you think is really important for patients to know for trying to manage their disease? What do you tell them?
Maryann Wahmann: The first thing you tell them is to take a deep breath, because I think everybody goes into a complete panic.
Shubham Pant, MD: Is this the same for caregivers also?
Maryann Wahmann: Absolutely. Take a deep breath and just relax, because the more stress that you get, the more you’re going to have syndrome. So, we encourage them to relax. But we tell them, you need to find the right doctor for you. Not every doctor is the correct doctor for you, you need to find the right doctor. You need to find the right treatment and follow your treatment plan, making sure you get your colonoscopies, whatever you need to get done. Make sure you go and have your blood work done. Make sure you follow a plan. And with you following a plan and reaching out and getting support, you can survive. And it’s not even surviving, you live with this, you live with this disease. And you can live a good quality of life if you take care of yourself. And if you’re not feeling good, take the time to rest, but don’t stay in bed and lay around. Get up every day, get dressed, and try to be productive. Because if you lay down and you let this disease take over, those are the patients I see that lose their lives earlier, because they don’t want to fight. You need to get up and fight.
Shubham Pant, MD: Amazing. Dr. Morse, I’ll give you the last word here. For the patients out there, it’s a unique disease and you treat this unique disease. So, what do you think you would tell the patients out there?
Michael A. Morse, MD: Well, we’ve actually heard that more eloquently than I can say it, but I’ll repeat what has been said, which is, it’s important for people to be educated about the disease to find the highest quality information, to bring that information to their other healthcare providers, and to stay up on the developments. Cancer therapies, in general, their development is accelerating and treatments that weren’t available even last year are, of course, available now. We’ll have some others available in the new year.
Shubham Pant, MD: Happy New Year.
Michael A. Morse, MD: Yes. We talked earlier about the lutetium-177 DOTATATE that we hope will be available as a therapy in the new year. This year we saw Xermelo, or telotristat—which you started taking and you started taking this year as well—that helped with the diarrhea. And if you read about things from the past, it doesn’t mean what the future is going to be like. You read that the survivals were five years or less, that was really based on old data. It has continued to improve and it will continue to improve. So, whatever you hear and read about today, it will be better as long you can keep yourself in good shape, and there will be other options coming down the line to help stay in good shape for as long as possible.
Shubham Pant, MD: So, educate, educate, educate, and advocate, right?
Maryann Wahmann: Educate and advocate, absolutely.
Shubham Pant, MD: OK. This has been a great discussion for the management of carcinoid tumors. Thank you, Dr. Morse, Larry, and Maryann for joining us today and providing your perspectives. And to our viewers here at CURE Connections®, thank you for watching. Thank you.