Typical Carcinoid Tumor in Lungs

Posted by dzerfas @dzerfas, Jan 17, 2017

I was diagnosed in April 2016 with a Typical Carcinoid Tumor in my right lower lobe, approx. 3 cms. It has remained stable, per most recent CT scan in Dec. I have no symptoms. I am curious if others have been in this situation and if you opted to "watch and wait" or have surgery right away - mine would be a lobectomy of the right lower lobe. Can Typical Carcinoids become Atypical? Blessings to all on this journey!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Jan 17, 2017

@dzertas, I did a little research and found this website that you might find helpful. It explains the difference between typical and aypical carcinoids.
http://my.clevelandclinic.org/health/articles/carcinoid-tumors-of-the-lungs

Colleen Young, Connect Director | @colleenyoung | Jan 17, 2017

In reply to @hopeful33250 "@dzerfas Hello and welcome to Mayo Connect. We would enjoy getting to know you better. If..." + (show)

Hey Teresa, it looks like we were writing at the same time 🙂 Here's some information about Lung Carcinoid Tumors from the American Cancer Society that I found useful to understand the difference. http://bit.ly/1MwcPgG

Colleen Young, Connect Director | @colleenyoung | Jan 17, 2017

Hi @dzerfas, welcome to Connect. There are a number of people talking about carcinoid tumors in this discussion:
- Carcinoid cancer http://mayocl.in/2cK4PdN

I'd like to introduce you to @amyh2439 who also has lung carcinoid cancer. Ruth Ann, do you have typical or atypical NETs. I'm also inviting @hopeful33520 @joannem @tresjur and @jenchaney727 into the conversation.

@dzerfas, I couldn't find any information online about typical carcinoids becoming atypical. That would be a good question to ask your oncologist. Watching and waiting can be difficult, but keep in mind that you will be closely monitored. How often do you go for scans?

Teresa, Volunteer Mentor | @hopeful33250 | Jan 17, 2017

@dzerfas Hello and welcome to Mayo Connect. We would enjoy getting to know you better. If you would like to share something about your carcinoid, we would be interested in hearing what led to your diagnosis. Were you having specific symptoms that led to the CT scan in December? I've also had carcinoid tumors, but in the digestive tract. We actually have a group dedicated to those of us who deal with carcinoids. I'm not familiar with the term "Typical Carcinoid." I'd like to introduce you to @joanney, who has also had a carcinoid in the lung and had surgery several years ago. Perhaps she can shed some light on your situation. Here is a Mayo website that you might find interesting: https://connect.mayoclinic.org/discussion/has-anyone-used-mayo-clinic-in-rochester-minnesota-for-carcinoid-tumors-the/. In the meantime, we look forward to getting to know you and walking with you on health journey.