Living with lung cancer - Introduce yourself & come say hi

) Hi Colleen, Nancy (short shot) I've been on here several times in the past couple weeks. I have a cardiologist appt tomorrow and I will be having my left lung drained on Monday 24th of Feb. 2020. I also had radiation on Jan 22. Now my friend a PT stopped b
yesterday and noticed me still limping around and in visiting he told me to get checked by my primary doc as he thought maybe the urinary infection that I had so long may have settled into my hip/leg bone. So I have a appt netxt Tuesday to visit with my doc on all the stuff I have been going through. Now will you tell me where to go in here where I would be on the pages for 2020. All I seem to find is 2017... Am lost.... Nancy

Hi Nancy @shortshot80, my goodness you have a lot going on. I'm glad that your friend was alerted to a possible urinary infection and that you're getting that looked at as well. Did you experience any side effects with the radiation in January?

Some discussions started in 2017 and continue to be active today, like this one. Here's how to see the most recent discussions and posts:
1. Go to the Lung Cancer group https://connect.mayoclinic.org/group/lung-cancer/
Discussions at the top are the most recently active, i.e., had a new post added. The rest are listed in reverse chronological order.
2. Click a discussion that interests you.
3. Now you can read the discussion from beginning to end or you can choose to view "Newest to Oldest" and see the recent posts.

You can learn more about this functionality here:
- [TIP] Customize the Order You View Posts - See New Posts First https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

Does that make sense?

@shortshot80 Hi Nancy,

I'm sorry to hear of your continued problems but glad to hear that a friend with a medical background alerted you to the urinary tract problem. I do hope that all goes well for you on Monday when you have your left lung drained.

Have you had your lung drained previously, or is this the first time?

Yes I had my lung drained twice. October & November 2015, before I knew I had lung cancer. Didn't find that out till Jan. 16 after a surgery. Nancy shortshot

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

@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?

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.

@gecko512 - Thank you for getting back with your response. Cisplatin is a gold standard, the Cadillac of chemo drugs for a lot of lung cancers. My stomach was a big problem too. I took anti-nausea pills, GERD meds and drank many gallons of water. Have you mentioned this problem to your infusion people or your oncologist?

Yes,I am doing exactly as you. I am taking anti nausea meds (Prochlorperazine). I also take omeprozole for Gerd and drink tons of fluids. Did it eventually go away? Or does it come and go?