Living with lung cancer - Introduce yourself & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Mar 2, 2017

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Merry, Alumni Mentor | @merpreb | Jul 16, 2021

In reply to @gecko512 "Hello, I had surgery (8/20) for Large Cell nueroendocrine carcinoma Lung cancer which consisted of a..." + (show)

@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?

gecko512 | @gecko512 | Jul 15, 2021

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

Merry, Alumni Mentor | @merpreb | Feb 23, 2020

In reply to @shortshot80 "Yes I had my lung drained twice. October & November 2015, before I knew I had..." + (show)

@shortshot80- Are you awake for lung drainage? I've had many chest tubes but I've been asleep when they have been inserted but wide awake when they have been taken out, all from surgeries, not for drainage at other times. One time an intern was very instensitive and another time I hardly felt a thing.

shortshot80 | @shortshot80 | Feb 21, 2020

In reply to @hopeful33250 "@shortshot80 Hi Nancy, I'm sorry to hear of your continued problems but glad to hear that..." + (show)

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

shortshot80 | @shortshot80 | Feb 21, 2020

In reply to @colleenyoung "Hi Nancy @shortshot80, my goodness you have a lot going on. I'm glad that your friend..." + (show)

Nancy Shotrtshot.... Yes it does make sense.. My friend PT stopped by couple days ago and said as long as I'm still hurting from the surgery (broken hip) that I should see my doc and see if I have another urinary infection and also suggested that I may have infection in my hip bone. So I have appt on Tuesday for that. Will be having my left lung drained on Monday. Saw my cardiologist yesterday and he said I'm good to go till I'm 90. I will be 87 next month.I hope to have my book printed by my birthday. So lots of things going on around here. I will put out a up date after I have my lung drained next Monday. Cheers...... Nancy

Merry, Alumni Mentor | @merpreb | Feb 20, 2020

In reply to @shortshot80 ") Hi Colleen, Nancy (short shot) I've been on here several times in the past couple..." + (show)

@shortshot80- How was your appointment with your cardiologist?

Teresa, Volunteer Mentor | @hopeful33250 | Feb 20, 2020

In reply to @shortshot80 ") Hi Colleen, Nancy (short shot) I've been on here several times in the past couple..." + (show)

@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?

Colleen Young, Connect Director | @colleenyoung | Feb 19, 2020

In reply to @shortshot80 ") Hi Colleen, Nancy (short shot) I've been on here several times in the past couple..." + (show)

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 | @shortshot80 | Feb 19, 2020

In reply to @shortshot80 "c olleenyoung. Yes, I would be interested in seeing what other people are doing with stage..." + (show)

) 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

Merry, Alumni Mentor | @merpreb | Feb 18, 2020

In reply to @merpreb "Goodmorning @woodedareas and welcome to Mayo Connect. I feel your frustration with not being able to..." + (show)

@woodedareas- Good morning. I hope that I didn't scare you away. How are you?

View More View Less

Please sign in or register to post a reply.