1. < Neuroendocrine Tumors (NETs)

Atypical pulmonary carcinoid

Posted by ekri @ekri, Feb 2 4:44am

My twin sister had an incidental finiding of atypical pulmonory carcinoid 2 weeks ago. The following are reports of her diagnosis. Se is due to have surgery on Tuesday February 6th. I would appreciate any feedback, advice . Thank you.
CT report:
At the lower limit of the right pulmonary hilum, a relatively indistinct mass with possible mild radiographic opacities is identified, indicative of dimensions measuring 3.1 anteroposterior, 3.3 mediolateral, and 3.2 superoinferior. This formation is in contact with the mediastinum, encompassing partially the lobular bronchovascular branches, including some bronchoangiatic branches. Endobronchial extension is noted at the level of the proximal segment of the bronchial branch for the right middle lobe, with the presence of endobronchial material measuring approximately 6 mm.

PET- Ga68 DOTATE report:
In the lower part of the right pulmonary hilum, a solid deformation is revealed, measuring 3.3 cm in transverse diameter, with pathological fixation of the radiopharmaceutical (SUV max 5). This suggests the presence of tissue overexpressing somatostatin receptors in the context of a neuroendocrine neoplasm. Findings in the T12 and T5 vertebrae are likely attributed to hematomas. Non-specific fixation of the radiopharmaceutical is observed in the head of the right femur.
Small biopsy report after bronchosopy
Macroscopic examination reveals an elongated mucin-producing cystic structure, a shiny specimen measuring 2.8 x 0.5 x 0.4 cm, displaying a polypoid configuration.
Histological diagnosis: Atypical carcinoid of the middle lobe bronchus, with a larger dimension of 2.8 cm (2 nuclei per 2 mm without necroses; three sets of 2 mm were measured).
For the differentiation of the findings, immunohistochemical stains were evaluated, revealing positivity for Chromogranin, Synaptophysin, CD56, CK7, TTF1, and p40, while being negative for Ki67 in approximately 10% of the neoplastic cells. A total of 7 sections were examined immunohistochemically.

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dbamos1945 | @dbamos1945 | Feb 3 12:45pm

If I were you I would get 2nd opinion from a Neuroendocrine surgeon (Mayo, City of Hope, CedarSanai, and some large University Hospitals are sources). Also LACNETS, a very informed group of Neuroendocrine patients/advocates/doctors can offer you both guidance and support. Reach out to get best advice available. Best to you.

REPLY
ekri | @ekri | Feb 6 1:54pm

My sister had a bilobectomy done today as her atypical carcinoid tumor around 4 cm was located in bronchus intermedius. The doctor removed lymph nodes as well and we are waiting for biopsy report in about 2 weeks. Rapid biopsy during surgery showed clear margins. What I don't understand are the findings of PET/CT scan vs DOTATE she did prior to her surgery. The PET/CT scan shows SUV max uptake of 7.7 while the DOTATE shows uptake of SUV max 5. Why is there a difference and what does this mean. Is the carcinoid more aggressive and histological report will be more adverse and show higher grade. Also, at the end of PET/CT scan it says that it is classified as P4 in the NETPET score. Again what does this mean? Any help would be greatly appreciated.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 10 8:04pm
In reply to @ekri "My sister had a bilobectomy done today as her atypical carcinoid tumor around 4 cm was..." + (show)
@ekri

My sister had a bilobectomy done today as her atypical carcinoid tumor around 4 cm was located in bronchus intermedius. The doctor removed lymph nodes as well and we are waiting for biopsy report in about 2 weeks. Rapid biopsy during surgery showed clear margins. What I don't understand are the findings of PET/CT scan vs DOTATE she did prior to her surgery. The PET/CT scan shows SUV max uptake of 7.7 while the DOTATE shows uptake of SUV max 5. Why is there a difference and what does this mean. Is the carcinoid more aggressive and histological report will be more adverse and show higher grade. Also, at the end of PET/CT scan it says that it is classified as P4 in the NETPET score. Again what does this mean? Any help would be greatly appreciated.

Jump to this post

@ekri, good to hear that the surgery was able to have clear margins. You're asking good questions. You may be interested in this related discussion:
- FDG PET scan vs. 68Ga DOTATATE PET scan for neuroendocrine cancer
https://connect.mayoclinic.org/discussion/fdg-pet-scan-vs-68ga-dotatate-pet-scan-for-neuroendocrine-cancer/
I'm also tagging other members like @marieritzman @gesmone1 @ce1b @gmapam who have experience with atypical lung carcinoid.

Has your sister spoken with her oncologist in the meantime to discuss the results of her testing and NETPET score? How is she recovery from surgery?

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1 reply
ekri | @ekri | Feb 11 8:42am
In reply to @colleenyoung "@ekri, good to hear that the surgery was able to have clear margins. You're asking good..." + (show)
@colleenyoung

@ekri, good to hear that the surgery was able to have clear margins. You're asking good questions. You may be interested in this related discussion:
- FDG PET scan vs. 68Ga DOTATATE PET scan for neuroendocrine cancer
https://connect.mayoclinic.org/discussion/fdg-pet-scan-vs-68ga-dotatate-pet-scan-for-neuroendocrine-cancer/
I'm also tagging other members like @marieritzman @gesmone1 @ce1b @gmapam who have experience with atypical lung carcinoid.

Has your sister spoken with her oncologist in the meantime to discuss the results of her testing and NETPET score? How is she recovery from surgery?

Jump to this post

She is still in the hospital but generally recovering well. Her oncologist said we need to wait for biopsy report and can't say anything further at the moment. If report doesn't show lymph node involvement then things should be fine. I don't know if they just say this to be reassuring.

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ekri | @ekri | Feb 13 2:32pm

My sister was supposed to be discharged today but her morning chest xray showed some more air which wasn't there previously. Has anyone else experienced this? Also, is there anyone else you had atypical pulmonary carcinoid with DOTATE SUV MAX uptake of 5 and PET/CT Scan SUV max 7.7 (NET PET SCORE 4) and what did biopsy report turn out to be eventually?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 15 5:35pm
In reply to @ekri "My sister was supposed to be discharged today but her morning chest xray showed some more..." + (show)
@ekri

My sister was supposed to be discharged today but her morning chest xray showed some more air which wasn't there previously. Has anyone else experienced this? Also, is there anyone else you had atypical pulmonary carcinoid with DOTATE SUV MAX uptake of 5 and PET/CT Scan SUV max 7.7 (NET PET SCORE 4) and what did biopsy report turn out to be eventually?

Jump to this post

@ekri, how is your sister doing? Was she discharged?

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1 reply
dbamos1945 | @dbamos1945 | Feb 18 9:05pm

@ekri: I hope you have been busy celebrating a positive surgery and prognosis, but please relay an update on your sister’s medical journey. We care!

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1 reply
ekri | @ekri | Feb 19 2:52am
In reply to @dbamos1945 "@ekri: I hope you have been busy celebrating a positive surgery and prognosis, but please relay..." + (show)
@dbamos1945

@ekri: I hope you have been busy celebrating a positive surgery and prognosis, but please relay an update on your sister’s medical journey. We care!

Jump to this post

We haven't received biopsy report yet. We hope and pray it is a good one. Thank you for your interest.

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1 reply
ekri | @ekri | Feb 19 11:48am
In reply to @colleenyoung "@ekri, how is your sister doing? Was she discharged?" + (show)
@colleenyoung

@ekri, how is your sister doing? Was she discharged?

Jump to this post

She has been discharged but still waiting for biopsy report.

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1 reply
ekri | @ekri | Feb 23 11:40am
In reply to @ekri "She has been discharged but still waiting for biopsy report." + (show)
@ekri

She has been discharged but still waiting for biopsy report.

Jump to this post

My sister returned to hospital on Tuesday with severe chest pain . They were afraid of pulmonary embolism but CT scan didn't show that. Instead elevated inflammatory markers and symptoms made Drs diagnose inflammation of pericardium. She has fluid in right lung and some in left. She is no longer in pain but liver enzymes are elevated perhaps because of all medication given to her on Tuesday. Written biopsy report will be given to us on Monday but surgeon told us orally that there is some lymph node involvement which scares us. Mitotic rate is about 2 (1.9 to be exact), there is some necrosis and stuff about lymph node #7 ( I also heard sth about because it involves node 7 it is classified ad N2. Don't understand any of this. Don't know KI 67 yet but they assume it's about 6-7℅. I'm tired of listening to them say not to worry and that everything will be ok, especially when I read online how aggressive this carcinoid is and when there is node involvement and necrosis prognosis is poor. Treatment is also not helpful from what I've read. Please give me any feedback.

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