I am 75 and have carcinoid tumors NET in lungs

@azrosegold I was on a Mayo NETs support group call recently. Dr. Thor Halfdanarson from Mayo was the guest speaker. He was asked what imaging technique is best to view NETs. He responded the one with the best technician. His comment really hit home with me. It also applies to the radiologist reading the images. Unfortunately, people aren't perfect. It is great that you brought this up to the pulmonologist and he took action. Having a great team catches individual human error. Why the love hate relationship with patient portals? I am curious?

@tomrennie I’ve had these tumors show up on scans for the last 11 years and been misdiagnosed until a radiologist at Flagstaff Medical Center alerted my ER Dr of his suspicions. I know first hand that a good radiologist is key to a good diagnosis, and yes we’re only human so mistakes are inevitable. I love that Mayo is fantastic at quickly uploading your test results to the portal, unfortunately I had my erroneous results in my head for 2 weeks until I got clarification from my Dr. I had already gone back and compared it to my prior CT reports and was pretty worried that I had developed a 27mm tumor in 3 months! Occasionally you get information that you’re really not prepared to deal with, biopsy results, lab work etc and you need to grin and bear it until your next appointment.

@tomrennie yes. I have my list of questions from my CT results
1. New 27 mm tumor R lower lobe?
2. At what point do you intervene when new growths appear? Rate of growth, overall size? Location?
3 is there a true protocol or is it literally case by case?
4. If location of tumor is accessible is ablation first line? Ablation was never discussed with the tumor I had removed last year.
I’m totally asymptomatic but want to stay ahead of this is possible.
I welcome any suggestions for other issues I should discuss with my Dr.

@tomrennie I’ve had these tumors show up on scans for the last 11 years and been misdiagnosed until a radiologist at Flagstaff Medical Center alerted my ER Dr of his suspicions. I know first hand that a good radiologist is key to a good diagnosis, and yes we’re only human so mistakes are inevitable. I love that Mayo is fantastic at quickly uploading your test results to the portal, unfortunately I had my erroneous results in my head for 2 weeks until I got clarification from my Dr. I had already gone back and compared it to my prior CT reports and was pretty worried that I had developed a 27mm tumor in 3 months! Occasionally you get information that you’re really not prepared to deal with, biopsy results, lab work etc and you need to grin and bear it until your next appointment.

@haelsky. I had RML robotic lobectomy at Memorial Sloan Kettering in NYC in 2023. They discovered it was nets through the bronchoscopy biopsy, but couldn’t tell until the surgery that it was typical net. My doctor there is a thoracic oncological surgeon who suspected nets and DIPNECH from the beginning. And that is who monitors me every six months with a CT scan and follow up visit. So far nothing has grown or changed postop in 2 1/2 years, thankfully, and my DIPNECH symptoms are not severe like some have, for example I don’t have the cough that often goes along with that. So I’m not sure I want to start a medication that might give me more symptoms to deal with. Since I am equidistant to New York and Philadelphia, I will probably at some point try to just see a net specialist in Philly for another opinion and evaluation.

@jhhaas My surgeon and I talked about the possible side effects of being on the shots for NETs. He told me it is common to have problems with your gallbladder. I asked what happens then? He said, laughing, "I'll just remove it." I told my GP of that interaction, and SHE laughed and said, " That's just how surgeons think." I have had over 11 surgeries in my lifetime. I'm definitely going out of this world with less "inside" than I came into this world with. 🤣

@nannybb. Oh, that’s rich! Lol. But good information, so thank you for that! Ha ha. I just today got the results for my six month CT scan, 2 1/2 years postop, and so far my DIPNECH remains unchanged. So I’m not rushing into any treatment at this point.

@azrosegold I understand. I had a typo on a scan report. I had a liver lesion presented at 8.6cm and not 5.6cm on the report. Fortunately, the oncologist corrected everything the next day at my appointment. Waiting two weeks is a long time. Though easier said than done, I try to not get too up or down until I meet the ologist that ordered the test. If there is more than a day between results and meeting with the ologist, I will send a message on the portal with my concerns. I have received responses back to alleviate my fears.

@tomrennie I’ve had these tumors show up on scans for the last 11 years and been misdiagnosed until a radiologist at Flagstaff Medical Center alerted my ER Dr of his suspicions. I know first hand that a good radiologist is key to a good diagnosis, and yes we’re only human so mistakes are inevitable. I love that Mayo is fantastic at quickly uploading your test results to the portal, unfortunately I had my erroneous results in my head for 2 weeks until I got clarification from my Dr. I had already gone back and compared it to my prior CT reports and was pretty worried that I had developed a 27mm tumor in 3 months! Occasionally you get information that you’re really not prepared to deal with, biopsy results, lab work etc and you need to grin and bear it until your next appointment.

@nannybb. Oh, that’s rich! Lol. But good information, so thank you for that! Ha ha. I just today got the results for my six month CT scan, 2 1/2 years postop, and so far my DIPNECH remains unchanged. So I’m not rushing into any treatment at this point.