1. < Lung Cancer
Moderator

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.

pego | @pego | Apr 18, 2023
In reply to @spikeb1 "This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just..." + (show)
@spikeb1

This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just had my first CT Scan and all looks good. Reading about reoccurrences and not sure I would do anything. I am 72 and have no unfinished business.

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2yrs ago I had lobectomy for a stage 1 tiny spot that was biopsied. Dr said I didnt need oncologist because they got the cancer out clean. 9 months ago I was being treated for sciatica. After 6 months of orthopedist an mri showed cancer on my glute muscles. Stage 4. Pet showed some tiny spots on my lung and one lymph node involved. Radiation took the pain and swelling away. Now getting keytruda. I’ve had 3 infusions. My rump hurts now and I want a scan to see what’s happening. Dr says not to worry, that sometimes during immunotherapy the cancer can grow. How soon after starting keytruda should I expect a scan?

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 14, 2023
In reply to @fowlair "They told me yesterday that it’s not unusual for a patient to have improvement after starting..." + (show)
@fowlair

They told me yesterday that it’s not unusual for a patient to have improvement after starting hospice care because they are mote concentrated on quality of life. Also they said if we want to temporarily end hospice care, we can do so and then start again later. But they don’t think this is a change in how the cancer is spreading. It’s now a moot point, because my husband decided yesterday he didn’t want scans or chemo again.
Hospice advised us to basically do whatever we want while he is feeling better and is still able to do so. So I am going to try to let go of the uncertainty.
The nurses have been a Godsend. The social worker has been my rock. I know she is there no matter what to help me think things through and talk me down from the ledge when I’m getting anxious.

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It’s so nice to hear that you have good support. I hope he continues to feel well for as long as possible and both of you can enjoy each other’s love, and find some peace too.

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cmcguire10 | @cmcguire10 | Apr 14, 2023
In reply to @spikeb1 "This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just..." + (show)
@spikeb1

This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just had my first CT Scan and all looks good. Reading about reoccurrences and not sure I would do anything. I am 72 and have no unfinished business.

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Good Morning! I am right there with you! I just had my segmentectomy LUL, for NSCLC (Adenocarcinoma)and a little wedge (Granuloma -benign), 3 weeks ago, today. I feel good, but this IS SCARY! Reading that after someone has gone through the same thing, they suddenly have stage IV somewhere else. I am only scheduled to have a CT every 6 months for the next 2 years. No chemo or radiation was “necessary” as my cancer was stage 1A. But I have read some of these other posts that say there cancer was stage 1 and it happened. Well, I know that God has me in HIS hands and whatever HIS will, will be done. I think the best things to do are remain Positive and treat myself a lot better and try to be healthier, by way of exercise (walking for now), food intake (Lots of fruit and veggies) and mindfulness/gratitude. If cancer does come back, hopefully this will all help me fight it again, like Mary- who has been living with cancer for 25 years! Everyone! KEEP UP THE GOOD FIGHT!

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1 reply
spikeb1 | @spikeb1 | Apr 14, 2023

Also interested in the reoccurrences although disturbing.

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spikeb1 | @spikeb1 | Apr 14, 2023
In reply to @lls8000 "Hi @spikeb1, That’s great news that your first CT looked clear! I’m encouraged to hear that..." + (show)
@lls8000

Hi @spikeb1, That’s great news that your first CT looked clear! I’m encouraged to hear that you and many others have found the cancer at an early stage. Yes, there are sometimes recurrences, but when that happens it is often many many years later. Also, don’t forget that those people without recurrences are often out living their best lives, and not hanging out on Mayo Connect.
It sounds like your surgery was successful, how are you feeling? How often will you have follow up scans?

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I get that folks don’t hang here unless they have questions or a need to share. I am a retired nurse so always looking for an opportunity to help. I can only do that from experience with the early stage cancers. But this site helped me when I was having post op pain and I continue to monitor and think I will for a long time.

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fowlair Mary F | @fowlair | Apr 14, 2023
In reply to @lls8000 "@fowlair, Living without a timeline is so difficult. I am a stage IV patient, and doing..." + (show)
@lls8000

@fowlair, Living without a timeline is so difficult.
I am a stage IV patient, and doing well, but making long term decisions is tough when you’re not sure how long you are going to be around.
What are the hospice nurses saying about his condition, have they been helpful when making decisions?

Jump to this post

They told me yesterday that it’s not unusual for a patient to have improvement after starting hospice care because they are mote concentrated on quality of life. Also they said if we want to temporarily end hospice care, we can do so and then start again later. But they don’t think this is a change in how the cancer is spreading. It’s now a moot point, because my husband decided yesterday he didn’t want scans or chemo again.
Hospice advised us to basically do whatever we want while he is feeling better and is still able to do so. So I am going to try to let go of the uncertainty.
The nurses have been a Godsend. The social worker has been my rock. I know she is there no matter what to help me think things through and talk me down from the ledge when I’m getting anxious.

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 14, 2023
In reply to @spikeb1 "This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just..." + (show)
@spikeb1

This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just had my first CT Scan and all looks good. Reading about reoccurrences and not sure I would do anything. I am 72 and have no unfinished business.

Jump to this post

Hi @spikeb1, That’s great news that your first CT looked clear! I’m encouraged to hear that you and many others have found the cancer at an early stage. Yes, there are sometimes recurrences, but when that happens it is often many many years later. Also, don’t forget that those people without recurrences are often out living their best lives, and not hanging out on Mayo Connect.
It sounds like your surgery was successful, how are you feeling? How often will you have follow up scans?

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 14, 2023
In reply to @fowlair "Hi! I am Mary, and my husband has Stage 4 NSCLC. Originally diagnosed with Stage 1..." + (show)
@fowlair

Hi! I am Mary, and my husband has Stage 4 NSCLC. Originally diagnosed with Stage 1 in 2013. Had a wedge resection and everything was fine on all his scans. Then in 2020, out of the blue, it advanced to Stage 4. It had spread to his femur, liver, and brain, as well as both lungs. He had whole-brain radiation, which impacted his short-term memory. Then he was on a combo of chemo drugs, then switched to chemo/immunotherapy. Unfortunately, the chemo was killing his red blood cells faster than his body could produce them. So we took a "chemo vacay" in 2021, which was only supposed to last a month, but his scans kept showing no growth. In November 2022 the scans showed new growth. His oncologist said he wasn't strong enough to go back on treatment and referred us to hospice. During that time, he went from 180 lbs. to 131 lbs.

Hospice put him on a steroid to increase his appetite. He has gained 22 lbs. in two months. Woohoo!

We were originally told he had 3-4 months. We are now at 5 months and counting. Since he has gained weight, he has more energy and more awake time. It's like I got my husband back.

I know this is going to sound horrible, but I am so confused and conflicted. I planned around the time frames given to me. Trying to figure out if I should buy one or two airline tickets to our nephew's wedding in August. Should I sign up for an art class in a distant city in the not-so-distant future? Is he getting better? Should he have another PET scan to see how/if it is progressing?

His cognitive functioning gets worse every day, and he is experiencing urinary incontinence. I strongly suspect the cancer is back in his brain.

So I have to decide whether to stop hospice and try to convince his oncologist to take him back to do another PET scan or continue as is with hospice. I know the rationale for not doing a PET scan is that if you aren't going to have treatment, it doesn't really matter what the scan shows. But treatment was halted because he was so weak. Now he's doing so much better. I just don't know what to do or think.

Our anniversary is May 8th. I didn't think we would make it, but now it looks like we will be celebrating 47 years. And I am thrilled. Please don't get me wrong. I love my husband dearly and want to keep him as long as possible. I am just flummoxed by his improvement and really don't know what, if anything, are the next steps.

Sorry this is such a long introduction to the group.

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@fowlair, Living without a timeline is so difficult.
I am a stage IV patient, and doing well, but making long term decisions is tough when you’re not sure how long you are going to be around.
What are the hospice nurses saying about his condition, have they been helpful when making decisions?

REPLY
1 reply
spikeb1 | @spikeb1 | Apr 14, 2023

This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just had my first CT Scan and all looks good. Reading about reoccurrences and not sure I would do anything. I am 72 and have no unfinished business.

REPLY
3 replies
Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 13, 2023
In reply to @millie5737 "The scans showed no response to treatment (meaning tumor growth) but continued inflammation. We have thought..." + (show)
@millie5737

The scans showed no response to treatment (meaning tumor growth) but continued inflammation. We have thought possibly a visit to infectious disease doctor, after the final elimination of a fungus infection that takes 6 more weeks to return. The oncologist actually left the decision to have infusion #6 up to him. He said yes and received it yesterday. Doing nothing seemed to be giving up.

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I’m sorry to hear of the lack of response. The infection has to make healing so much more difficult. It has to be heartbreaking and frustrating. Know that you are doing what you can, and being supportive of his decisions.

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