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Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
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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.
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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?
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.
Another thought– can you say a little more about why it is important to see a specialist in this type of cancer?
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.
@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?
Teresa, I did have a PET scan of the lungs and a biopsy of the largest nodule. Both the regular doctors and carcinoid docs have seen these. Biopsy identified it as a typical carcinoid, very little activity. Thanks for sharing your experience. Both the surgery options seem similar, though the lobectomy one would use RATS and the partial lobectomy one thoroscopy. That might make a difference. The story of your friend is sobering and will weigh into my decision.
Picking the best type of surgery is important. Do you have any follow up appointments in the near future to discuss this further or are the doctors now waiting for you to make a decision?
Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates about the state of the rest of the lung tissue before deciding what surgery makes sense. Has anyone any experience with DIPNECH? That's on the list of possibilities.
AMD, As you like know, diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is an extremely rare pulmonary disorder at the benign end of the neuroendocrine cells proliferation spectrum. It falls under spectrum of of preinvasive lesions of the lungs. It is mainly seen in non-smoker middle-age females with a history of chronic cough or asthma.
I don't know if anyone else has direct experience with DIPNECH, but you may wish to also explore this discussion:
– Typical Carcinoid Tumor in Lungs https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
I also want to invite you to the monthly NETs support group hosted on Zoom with a social worker from Mayo Clinic. All are welcome whether you're a Mayo patient or not. The next meeting is Jan 6, 2022. See details here:
– Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-108/
When are you scheduled to get the Netscan?
Greetings from me. Glad to be a member.
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