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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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@gecko512

Hello, I had surgery (8/20) for Large Cell nueroendocrine carcinoma Lung cancer which consisted of a Lobectomy of the bottom 3rd of my right lung. During surgery I had 18 lymph nodes removed and 2 were cancerous. I then went for chemo 4 cycles of cisplatin/etoposide. The Oncologist had to switch cisplatin to carboplatin on the last cycle because I was having hearing loss.
My Oncologist does not really know anything about Nueroendocrine cancer and is just treating it like small cell. My two cat scans in March and June were clear. However, I feel that having an Oncologist that knows nothing about my type of cancer is dangerous. Does anyone here know of any Doctor who specializes in Neuroenedocrine Cancer and could give me guide lines to set. It is almost 100% assured this cancer will come back in some way and I am trying to stay ahead of it. The Cat Scan just does the chest but something maybe happening in my liver or digestive system or colon where this type of cancer goes to many times. Can anyone give me suggestions for Mayo clinic doctor since I live near Daytona and Jacksonville is an 1 1/2 ride. thank you in advance for any info. provided

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Replies to "Hello, I had surgery (8/20) for Large Cell nueroendocrine carcinoma Lung cancer which consisted of a..."
Merry, Alumni Mentor | @merpreb | Jul 16, 2021

@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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