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.

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

ekri | @ekri | Feb 28 1:56pm

My sister is still in hospital being treated for inflammation of pericardium, complication after right lung bilobectomy for atypical carcinoid. Her biopsy report came out 4cm (1.2 mitosis with necrosis) ki67 4% and lymph 7 invasion 2mm. Stage 3N2Mx. Oncologist suggests 5-6 cycles of cisitiplatin and etipisode. Any feedback?

ekri | @ekri | Mar 1 10:02am

In reply to @ekri "We haven't received biopsy report yet. We hope and pray it is a good one. Thank..." + (show)

My sister was readmitted to hospital on Tuesday with chest pain. They were afraid of pulmonary embolism but they eventually said it was inflammation of pericardium ( 1st called it Dressler syndrome today they said Serositis) She has been on ibuprofen and colchicine but CRP level elevates except for 2 days when it dropped. Now they are giving her cortisone intravenous Lyodrol 40 mg. She has had so many post surgical complications. As for biopsy report it says: atypical 4cm carcinoid with necrosis, 1.2 mitosis and ki67 4%. Of the 8 lymph nodes removed, only lymph 7 had focus metastasis of 2mm and oncologist recommends she do 4-6 cycles of cisplatin and etipisode as she is Stage 3. Could anyone give me any feedback.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 1 10:50am

In reply to @ekri "My sister was readmitted to hospital on Tuesday with chest pain. They were afraid of pulmonary..." + (show)

I'm so sorry to hear of your sister's struggles, @ekri. I have not experienced this type of carcinoid, but I'm going to tag some other members who have discussed this so that they might respond to your post, @pattirushing, @ce1b @woundedwarrior1969 @gmapam @californiazebra.

Will you keep posting as your sister recovers from this latest issue?

ekri | @ekri | Mar 1 10:57am

I will but I feel as if I am at a dead end because chemo that has been recommended isn't necessarily going to guarantee that there is no recurrence and she will have to suffer all adverse effects of this treatment.

ce1b | @ce1b | Mar 1 12:36pm

I was diagnosed with atypical carcinoid of the lung that had metastasized to my lymph nodes. Mine was determined to be non operative. I went through both radiation and chemotherapy using cisplatin and etipisode. The treatment was successful in stopping the progression of the tumors. I am now on monthly injections of lanreotide with quarterly PET scans to monitor its progression.
To date my prognosis is favorable so my job now is to continue to live my best life.
Many blessings to both you and you sister wishing you all the miracles that life has to offer.

ekri | @ekri | Mar 1 1:08pm

In reply to @ce1b "I was diagnosed with atypical carcinoid of the lung that had metastasized to my lymph nodes...." + (show)

My sister asks if you were able to tolerate the chemo. At the moment she has complications from sugery, inflammation of pericardium, and after ibuprofen treatment has proven ineffective is on cortisone to help reduce inflammation. From what I've read this chemo is very strong and has many adverse side effects. Seeing as my sister has to continue treatment for her inflammation I don't know how she will be able to handle this treatment. Could you also tell me which lymph nodes were affected in your case, your mitosis , ki67, and stage. Thank you.

Zebra | @californiazebra | Mar 1 2:54pm

In reply to @hopeful33250 "I'm so sorry to hear of your sister's struggles, @ekri. I have not experienced this type..." + (show)

@ekri I'm so sorry to hear about your sister. Cancer and cancer treatment are so challenging. Sorry to hear of all her post-op complications and need for chemo.

I'm responding since I was named above. I have typical carcinoids which are less aggressive and less likely to spread than atypical. Although the tumors have grown, I'm still stage 1 after 30+ years. I've been taking monthly octreotide injections for 3 years to slow growth and manage chronic symptoms. Octreotide has done a great job minimizing the chronic coughing and mucus. Still have shortness of breath upon exertion, but better than before.

Have you sought out a second opinion? Working with a team of NETs specialists? Non-NETs specialists don't usually know much about treating NETs. Using providers with experience is so important for the best outcome. My breast cancer oncologist knew nothing about NETs, but was going to devise his own treatment plan anyway. Luckily, my pulmonologist told me there are NETs specialists so I requested a referral to a NETs team at UCLA for treatment and I'm so glad I did. Different plan. They are coordinating with my BC oncologist so I can receive my injections at the local office for convenience. Lots of NETs teams available depending on your location. Even if you're seeing a NETs specialist, it would be good to get a second opinion if you have any concerns.

Prayers for your sister and you.

ekri | @ekri | Mar 1 3:14pm

In reply to @californiazebra "@ekri I'm so sorry to hear about your sister. Cancer and cancer treatment are so challenging...." + (show)

We live in Greece where there are no NET specialists unfortunately. Oncologists give treatment according to stage of diagnosis. Here I'm trying to find a way to send biopsy slides to Memorial for second opinion and no one is helping me.

Zebra | @californiazebra | Mar 1 3:19pm

Maybe our mentors have a suggestion about how to get a video consult at Mayo maybe not for treatment but for a second opinion?

Teresa, Volunteer Mentor | @hopeful33250 | Mar 2 9:32am

In reply to @ekri "I will but I feel as if I am at a dead end because chemo that..." + (show)

Hello again, @ekri,

It has been mentioned several times that a second opinion might be needed in order to be sure that your sister is receiving the best treatment possible. There are lists of NET specialists.

Mayo Clinic has NET specialists at all of the three locations. Often a virtual appointment can be done if your sister is not able to travel. Here is appointment information, http://mayocl.in/1mtmR63. If a Mayo appointment is not possible, here is a list of NET specialists throughout the country, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

A specialist specifically trained in NETs is often helpful. Has a second opinion been sought?