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Living with lung cancer - Introduce yourself & come say hi

Lung Cancer | Last Active: Sep 25 12:58pm | Replies (1044)
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@merpreb

@gecko512- Welcome to Mayo Clinic Connect and the Lung Cancer Group! I am the Mentor for this group and have survived almost 24 years of NSCLC. My type of cancer is rare, it's a subtype of NSCLC called Multifocal Adenocarcinoma of the lung. You also have a rare form of lung cancer. Large cell neuroendocrine carcinoma (LCNEC) of the lung is a relatively uncommon, aggressive, and preoperatively difficult-to-diagnosis malignancy. It consists of both small and large cell cancers.

It sounds as if you had quite a bit of lung removed to hopefully get all of the tumor. My chemo, in 2007 also included cisplatin. That is one tough chemo, isn't it? Outside of the hearing loss have you experienced other symptoms?

I'm not a patient of Mayo Clinic but can ask @windwalker if she has recommendations. It's very disappointing to hear that your Oncologist's unfamiliarity with your cancer even if it is very rare.

Are you currently a Mayo patient?

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gecko512 | @gecko512 | Jul 16, 2021

Actually my tumor was only 1.1cm long. I used Mayo Clinic as second opinion since my Oncologist and surgeon here were pushing for surgery within a week. (During COVID).At that time the biopsy could not really show that it was even cancer. It showed signs but nothing definite. I used Mayo Clinic in Jacksonville as second opinion to have surgery. Mayo concurred. My surgeon (@Adventhealth)and I agreed that only a wedge would be taken from lung but if pathology doctor said it was cancer they would remove the lower lobe of right lung. I had robotic surgery. It was difficult to determine exact type of cancer so my surgeon sent it to Mayo Clinic in Arizona to determine it was Large cell neuroendocrine carcinoma with a little bit of adenocarcinoma mixed in. They thought all was taken out and I would not have to have chemo but when 18 lymph nodes were analyzed, they found 2 of 18 had metastasized.
Cisplatin was tough and have still some nausea after pooping. Also some foggy brain 6 months from when chemo was completed.

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