Welcome to the NETs Group! Come say hi.

@amd, Carcinoids are rare, therefore someone who has specialized is always the very best. I had a friend who passed away a year and a half ago, who at the very end said she wished he had seen a carcinoid specialist at the very beginning.

Is the carcinoid specialist near you?

Hello @amd12

I appreciate the added information. Like you, I was confused about my carcinoid tumors and the right type of surgery. So for the first two surgeries, I had the most invasive kind. As I mentioned, my carcinoids were in the upper digestive tract, very small, and I was advised by a non-carcinoid surgeon to have invasive surgery, with exploratory work on the whole digestive tract. This involved 7 days in the hospital and a large incision to deal with in recovery.

By the time the third carcinoid was found (same location) I decided to go to a university medical school near me as I just didn't want to go through another major surgery if I could avoid it. As a result, I had outpatient surgery and went home the same day. It accomplished the same thing with less assault on my body.

At this point, you do not know what kind of carcinoid you have and whether it will return or if it releases hormones or not. Once you have the surgery, a biopsy will be done and then you will have more information.

Have any of the doctors who have seen done a Gallium 68 or PET scan of the lungs? If so, which one? The carcinoid specialist or the other one?

Carcinoids are slow-growing tumors and when found early they often will not cause metastasis. While hindsight is always the best, if I had to do it again I would go with the less invasive surgery the first time around.

This is, of course, a decision that only you can make. I look forward to hearing from you again.

Another thought-- can you say a little more about why it is important to see a specialist in this type of cancer?

Hello, @hopeful33250. Yes, this is my first carcinoid tumor and I have sought a second opinion from a center the specialized in neuroendocrine tumors. The recommendation there was different from the first, a lingula sparing upper left lobectomy instead of a full lobectomy. I'm not sure why, since was some evidence of possible carcinoid (very small) on the lingula. That's what has me confused, and I haven't had an answer that's clear to me. I have no symptoms and feel fine (except for the anxiety). This was discovered during a yearly lung screening.

Hello @amd12,
I'd like to join Colleen, @colleenyoung, in welcoming you to the NETs group at Mayo Clinic Connect. I'm glad that you found our group. It is understandable that you would want to find the best surgery for your lung carcinoid.

From your post, I'm assuming that this is your first carcinoid tumor. Is that correct? If so, I would strongly recommend that you seek a second opinion from a carcinoid specialist in order to discover the best surgery and treatment plan. Here is a link from the Carcinoid Cancer Foundation, listing all of the specialists by city/state and country. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I have had three surgeries for carcinoids in the upper digestive tract and I understand how important it is to see someone who specializes in this rare form of cancer.

If you care to share more, I would be interested in knowing what type of symptoms you had that led to the discovery of the lung carcinoid. How are you feeling now?

I don't know. I am told that since this is a slow growing tumor there is "no rush", but I know that surgery is the next step and don't want to wait too long. Thanks responding to my message!

Hi @amd12, welcome. You've certainly come to the right place. I can imagine that you are terrified to have lung surgery. I'm tagging fellow lung NET members @gapsc @mgreene as well as @hopeful33250 to join this discussion.

When do you have to decide which surgery to have?

Hello, everyone. I just signed up for this group and hope I'm in the right place. I was diagnosed several weeks ago with what looks to be a typical carcinoid tumor of the lung. There are smaller nodules that could be something, but too small to tell. Anyway, the recommendation is for either lobectomy of the upper left lung or lingula sparing upper left lobectomy, which should leave a bit more lung volume. I am more terrified of the surgery than I am of the tumor right now. Has anyone had this surgery and how did the recovery process go? Thanks for any insights you may have.

There is a study from the Carcinoid Cancer Foundation, through the University of California, which might be interesting to everyone in this group. It will study the quality of life for those living with advanced NETs, Here is the information:
https://t.e2ma.net/message/akf45j/6waqgw

Hello All: For those of you who have had surgery for NETs in the thoracic area there will be an online seminar led by a doctor who treats this type of cancer. Here is the information,

Who: Sukhmani K. Padda, MD, is the featured guest
When: Thursday, September 2, 2021 from 12 noon to 1 pm, Eastern Time

Where: CCF’s Facebook Page, https://www.facebook.com/Carcinoid/. Just come to the page at noon and the program will begin. There is no need to register nor is there a special link.
For anyone not on Facebook, each of the presentations in the series is available on CCF’s YouTube channel, https://www.youtube.com/user/CarcinoidNETs. To receive notifications of all new videos on our YouTube channel, CLICK LIKE, SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.
CCF's Facebook page
Sukhmani K. Padda, MD, thoracic medical oncologist, was recently named Director of Thoracic Medical Oncology at Cedars-Sinai Cancer in Los Angeles, California. In collaboration with multidisciplinary clinical experts and scientists, Dr. Padda's work focuses on expanding clinical trials and translational research in thoracic oncology. The ultimate goal of this research is to improve the outcomes of patients with thoracic malignancies.

Dr. Padda has a particular interest in improving treatment for patients with rare thoracic tumors — such as thymic malignancies and lung neuroendocrine tumors — and genomic subsets of lung cancer, such as KRAS- and EGFR-positive tumors. Dr. Padda also conducts research into tumor biomarkers to help determine optimal treatments for patients.

She works with thoracic oncology experts around the country, leading and participating in clinical trials through the National Cancer Institute (NCI) Cancer Therapy Evaluation Program (CTEP) Cooperative Groups (e.g., ECOG, SWOG). She chairs the International Association for the Study of Lung Cancer (IASLC) Career Development/Fellowship Committee, which provides funding to early career lung cancer researchers around the world. Dr. Padda is a member of the North American Neuroendocrine Tumor Society (NANETS) and International Thymic Malignancy Interest Group (ITMIG). She has authored and co-authored dozens of papers and articles for peer-reviewed publications and is a peer reviewer for a number of prestigious cancer journals, including the Journal of Clinical Oncology and JAMA Oncology.
Viewers are welcome to pose questions for Dr. Padda during the live program.