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Atypical pulmonary carcinoid
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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My chemotherapy was difficult to deal with, it wasn’t immediate but accumulative effects were challenging. Fatigue, dizziness were the biggest issues hair loss started after the first month or 4th infusion treatment. Every hair on my body hurt during its loss. It was like needles poking at me.
It is important to know I am in my late 60s and was very fit for my age group as I was an active health conscious senior.
That being said the treatments both radiation and chemotherapy have had long lasting and beneficial effects. It took a year for my body to process out the negative side effects.
The encouraging side of treatment was that it reduced tumors sizes by 50% and the cancer or targeted tumors show no signs of growth to date.
Throughout my treatment I tried to maintain my role as the perfect patient, focusing on staying healthy and let the doctors guide me through the treatment process.
I have the data from the cancer and all the treatments but that really wasn’t my focus. Once I received the cancer diagnosis it turned my world upside down. Both physically, emotionally, and mentally. I took up the challenge on all 3 fronts.
I let the physicians handle the physical part and I took charge of the emotional and mental aspects of the treatment. I read the books that prepared me for end of life planning. I also engaged with a good psychologist to help control the mental aspects of the disease.
You will want to connect with Ronnyallan.net to lean more about this cancer and its treatments. He is the on facebook as well.
Know that I have a dozen active nodules but 2 large tumors that are being monitored for treatment. Upper left lobe of lung and #5 lymph node were focus of the radiation.
There is peace knowing we live in a world of modern medicine that can extend our lives out much longer than our ancestors had. My quality of life has not gone down after the treatment but it is more of a struggle for me to keep motivated as I progress through the illness.
At 18 months into my diagnosis I am finally getting back to feeling normal. I have just made plans for a cross country road trip to see my family scattered across this great country. With international travel plans for later in the fall.
I consider my cancer as an opportunity for a better me. And I approach my days with a different mindset than the per-cancer me. While the initial shock has worn off my commitment to body, mind and soul has not. I hope you and your family find the same peace.
Wishing you many blessings
CEB
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2 ReactionsMay God bless you and protect you and if you ever choose to visit Greece it would be nice to meet you.
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3 ReactionsI would recommend you visit the Carcinoid Cancer Foundation at
www. carcinoid.org
At the bottom of their homepage is a list of carcinoid specialists in Europe. (And the world)
There is also a lot of great information at http://www.Ronnyallen.net
on this cancer. You might want to bookmark both of these sites.
I would just imagine any of the carcinoid specialists would review the medical records and make recommendations based on their findings.
In today’s borderless world video conference is now available for this type of circumstances. Don’t feel stranded by your lack of resources. Also know there are always clinical trials available if you meet the criteria.
Prayers and blessings for you and your sister will be included in my daily rituals.
Peace
CEB
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1 ReactionThank you very much. God bless you.
Hello @ekri,
As you mentioned in your post that you reside in Greece, I wanted you to know that as @ce1b mentioned, on the Carcinoid Cancer Foundation website there is a list of NET specialists throughout the world. Here is the link to information about European Neuroendocrine Tumor Society, ENETS
https://www.carcinoid.org/doctor/enets-centers-of-excellence/
Perhaps a virtual appointment would be possible. How is your sister feeling now?
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1 ReactionMore or less the same