Benign carcinoid tumor in bronchi tube

@nannybb
As for any medical background, no, just read a lot. That’s mostly how doctors learn. I have also watched a lot of YouTube videos, presentations and received medical newsletters. Interesting. I did pay medical claims back in the 80s, but that training was about manually calculating insurance benefits in the days of sending in handwritten bills and getting reimbursed. It’s all automated now. However, I would see medical conditions listed and wonder what that was so out came the medical books to find out. Curiosity is the key to learning. 😊

@tomrennie I love all of the Sisters I work with and around. There are two branches. One side was already in Oregon (hundred years ago) and they were the nursing side (Providence) The other side came from Canada, and they were the teachers of the orphanage that was located on campus. The history of the place is fascinating. At some point there was a University, which is no longer. Some of the original buildings are still up and being used however. The grounds are beautiful and actually open to the public to visit, ride bikes and walk.

@tomrennie
Good job finding a local NET surgeon for her! Great that our conversation helped someone else. The hope in life is always that our experiences can help those who come behind us. Hopefully a NET surgeon can remove the minimal amount of lung tissue necessary.

Hallelujah! Great job!! You all have helped me in so many ways. Most of which has been encouragement and solid information. Just finding out about actual NETs specialists in my area for second opinion was huge. I didn't even know the connection between Carcinoid tumors and NETs until I reached this spot through Mayo. It's sort of a good thing to know in and of itself. 🫶

@nannybb
My breast cancer is your most common hormone driven kind. Even though stage 1, I had a double mastectomy because I have two genetic mutations for BC so had an 85% chance of getting it. I didn’t want more new BC. It recurred in my chest wall and pectoral muscle 7 years later anyway. More surgery, 37 radiation treatments and 5 years of targeted meds so far. Doing good, but the meds are challenging. BC not related to NETs. Nothing alike. Cancer runs heavily in my family and everyone gets a different kind(s) so it wasn't unexpected.

Yes, they just monitor my 50+ tumors with CT scans because I need to preserve the healthy lung tissue. That’s a heavy tumor load. They destroyed the largest 2.6 cm tumor with microwave ablation because it was large and growing faster than others. They feared it might metastasize. That was 5 years ago and successful. All tumors are still confined to my lungs after decades. I need 2 more smaller tumors ablated because they are blocking airways and my lower right lung is shut down but my NETs team disagrees on when. Next CT and discussion is 3 months away.

I’ve been taking octreotide injections for 5 years now and they have been life changing and stopped the 30+ years of coughing all day long. Those around me are thankful too. Octreotide makes me diabetic but worth the trade off. Octreotide has also made me way less sensitive to fragrances so I’m free to go most places now. My coughing was disruptive in movies, at work, pretty much everywhere. I can even pet non-hypoallergenic animals for the first time in my adult life! Yay!!!

Some DIPNECH cases have required lung transplants but that is not the norm. All the other cases I’ve read about had under 15 tumors though. I had a 73 year old pulmonologist tell me he’d never seen so many lung tumors on anyone. He was excited like he had found Bigfoot! Lol

@nannybb I learned quite a bit here:
https://www.carcinoid.org

@nannybb when you say your, do you mean Mayo? If so, I have no idea on surgeons. I know each location has NET specialist oncologists. Mine is in Phoenix. When I do any search for medical info, I start the Google search with Mayo then my question or doctor search. My answer usually comes up with Mayo data or links to it I trust their data. If I need further clarification, I search with another reputable health system name in the search. I never use AI. I don't know where that data comes from. AI is like an encyclopedia with blank pages until anyone provides something on the subject online. The AI algorithm finds it. If some better data comes along, then AI replaces it on the page. Make sense? Give it a try for the Mayo surgeons. I am curious what you find. If you can't find out in 3 clicks, stop. Don't waste your time. I will check for you in the morning. OK?

@nannybb That sounds really cool. I grew up in Philadelphia. I love history. There are also similar Catholic complexes there.

@nannybb when you say your, do you mean Mayo? If so, I have no idea on surgeons. I know each location has NET specialist oncologists. Mine is in Phoenix. When I do any search for medical info, I start the Google search with Mayo then my question or doctor search. My answer usually comes up with Mayo data or links to it I trust their data. If I need further clarification, I search with another reputable health system name in the search. I never use AI. I don't know where that data comes from. AI is like an encyclopedia with blank pages until anyone provides something on the subject online. The AI algorithm finds it. If some better data comes along, then AI replaces it on the page. Make sense? Give it a try for the Mayo surgeons. I am curious what you find. If you can't find out in 3 clicks, stop. Don't waste your time. I will check for you in the morning. OK?

@nannybb when you say your, do you mean Mayo? If so, I have no idea on surgeons. I know each location has NET specialist oncologists. Mine is in Phoenix. When I do any search for medical info, I start the Google search with Mayo then my question or doctor search. My answer usually comes up with Mayo data or links to it I trust their data. If I need further clarification, I search with another reputable health system name in the search. I never use AI. I don't know where that data comes from. AI is like an encyclopedia with blank pages until anyone provides something on the subject online. The AI algorithm finds it. If some better data comes along, then AI replaces it on the page. Make sense? Give it a try for the Mayo surgeons. I am curious what you find. If you can't find out in 3 clicks, stop. Don't waste your time. I will check for you in the morning. OK?