1. < Neuroendocrine Tumors (NETs)
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Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Posted by jogessert @jogessert, Jul 19, 2023

Just diagnosed with High-Grade Neuroendocrine Lung Carcinoma in the right lower lobe. My oncologist is recommending surgery. Anyone have a history of surgery with NETs?

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

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advancedstage4don | @advancedstage4don | Jul 21, 2023
In reply to @californiazebra "Hi @jogessert I met a lady through LACNETS.org that had a single 9 cm lung carcinoid..." + (show)
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Hi @jogessert

I met a lady through LACNETS.org that had a single 9 cm lung carcinoid removed 10 years ago (not sure if typical or atypical) and has not had any other issues since. They removed the lobe it was in. She didn't have any resulting respiratory issues from it. She has continued to have annual scans. Great success story and I believe she was 70 when she had the surgery. I pray that one and done success will be the case for you as well.

I have low grade, typical, neuroendocrine carcinoids, but too many (50+) to remove. They did microwave ablation on the largest one (2.6 cm) to destroy it so it wouldn't metastasize. They are keeping tabs on all the others and will do ablation again if any others suddenly grow faster than the rest of the pack.

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My Goals not like yours. I'm: AdvancedStage4Don

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jogessert | @jogessert | Jul 22, 2023
In reply to @californiazebra "Hi @jogessert I met a lady through LACNETS.org that had a single 9 cm lung carcinoid..." + (show)
Profile picture for Zebra @californiazebra

Hi @jogessert

I met a lady through LACNETS.org that had a single 9 cm lung carcinoid removed 10 years ago (not sure if typical or atypical) and has not had any other issues since. They removed the lobe it was in. She didn't have any resulting respiratory issues from it. She has continued to have annual scans. Great success story and I believe she was 70 when she had the surgery. I pray that one and done success will be the case for you as well.

I have low grade, typical, neuroendocrine carcinoids, but too many (50+) to remove. They did microwave ablation on the largest one (2.6 cm) to destroy it so it wouldn't metastasize. They are keeping tabs on all the others and will do ablation again if any others suddenly grow faster than the rest of the pack.

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Thank you for sharing your journey. I will be having the surgery; however my pulmonary function test was not the greatest and it appears that the tumor is tethered to the fissor, so they will remove the lower lobe and once they get in they will determine how extensive the tethering is. Thank you for your prayers and know that I will keep you in my prayers as well.

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jogessert | @jogessert | Jul 22, 2023
In reply to @ce1b "Know that surgery is considered the “gold standard” treatment for lung NETs. You want it out..." + (show)
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Know that surgery is considered the “gold standard” treatment for lung NETs. You want it out of your body before it has a chance to metastasize.

You will want to bookmark
http://www.carcinoid.org
And
RonnyAllan.net

For a deeper dive into this cancer.
My radiologist calls this the “lazy” cancer. I found that to be somewhat comforting.

Continue Blessings
CEB

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I know that the surgery for me is the best option; however I also know that due to the condition of my lungs, my daily life, just as yours, will not be the same. I also feel extremely blessed to have two wonderful daughters and two amazing granddaugthers to support me through this journey. I thank God every day for his blessings. Thank you for pointing me in the direction for the research 🙂

Continued blessing to you on your journey.
Jo

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 2, 2023
In reply to @jogessert "I know that the surgery for me is the best option; however I also know that..." + (show)
Profile picture for jogessert @jogessert

I know that the surgery for me is the best option; however I also know that due to the condition of my lungs, my daily life, just as yours, will not be the same. I also feel extremely blessed to have two wonderful daughters and two amazing granddaugthers to support me through this journey. I thank God every day for his blessings. Thank you for pointing me in the direction for the research 🙂

Continued blessing to you on your journey.
Jo

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@jogessert, how are you doing? Have you been scheduled for surgery?

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pattior | @pattior | 3 days ago

husband had surgery in June. Small 1 cm tumor was successfully removed, margins clear, and no spread to lymph nodes. The pathology report was inconclusive however so specimen sent to Mayo Clinic. Just now got report back with diagnosis of high grade neuroendocrine carcinoma. We were in Europe when we got this news., Just completed a chest CT and waiting for brain scan which isn't until Sept 20, and don't see surgeon until Sept 30. We are very concerned and feel we need to push things along quicker and probably get referral to oncologist. Have no idea how this will be treated, or what prognosis will be. Have message Dr and asked to expedite things. We have a cruise booked, leave on Oct 4 and return Oct 20. Thinking we should probably cancel this cruise and focus on treatment???

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rhb18 | @rhb18 | 1 day ago

Hello Jogessert
I had one small NET ( stage 1) discovered in my lungs . I had surgery immediately - within 2 weeks including removing relevant the lymph nodes. Recovery was slow and painful but bearable with pain medication. My remaining lung expanded well to compensate. I had a very normal life post recovery but several years later scans showed NETS had seeded in various locations. I don’t regret surgery as I think it’s important to do everything possible to defeat it. Don’t be shy in asking for pain medication post surgery.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | 22 hours ago
In reply to @pattior "husband had surgery in June. Small 1 cm tumor was successfully removed, margins clear, and no..." + (show)
Profile picture for pattior @pattior

husband had surgery in June. Small 1 cm tumor was successfully removed, margins clear, and no spread to lymph nodes. The pathology report was inconclusive however so specimen sent to Mayo Clinic. Just now got report back with diagnosis of high grade neuroendocrine carcinoma. We were in Europe when we got this news., Just completed a chest CT and waiting for brain scan which isn't until Sept 20, and don't see surgeon until Sept 30. We are very concerned and feel we need to push things along quicker and probably get referral to oncologist. Have no idea how this will be treated, or what prognosis will be. Have message Dr and asked to expedite things. We have a cruise booked, leave on Oct 4 and return Oct 20. Thinking we should probably cancel this cruise and focus on treatment???

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@pattior Hi and welcome to Mayo Connect. Sorry to hear about the diagnosis. It can take your breath away. You say that it is a high grade neuroendocrene carcinoma. Do you know what grade it is?

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