Living with lung cancer - Introduce yourself & come say hi

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.

@mjane120

The lung module/ tumor is or was a carcinoid. The pathology results are still pending. The middle lung was removed. Has anyone here gone through this!

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Hi @mjane120, welcome! There are some very knowledgeable people in this group. I am continuing to learn something each and every day. Did you happen to see this other recent discussion related to carcinoid tumors?
https://connect.mayoclinic.org/discussion/concerns-after-lobectomy/?pg=1#comment-849475

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@kiraleesingleton43

Hello my partner has small cell lung cancer and she had surgery. She is going through the healing process. It was told to us that the tumor and the one lymph node was removed. Now she has to go through Chemo, about how long will she possibly have therapy considering it did not spread to any other lymph node. Will she even have a chance to enjoy life again? i miss her smile i think i need the counseling more than she does. Please I hope someone can help with these questions.

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Hi Kira, welcome. You may wish to connect with other members living with SCLC in this discussion:
- Small Cell Lung Cancer: Let's connect https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/

I'm glad to hear that the cancer did not spread to the lymph node that was removed. How is the recovery from surgery going? When does she start chemo?

How are YOU doing?

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@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 Mary, I just want to let you know that I'm thinking about you, knowing that tomorrow is your anniversary.

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@mjane120

The lung module/ tumor is or was a carcinoid. The pathology results are still pending. The middle lung was removed. Has anyone here gone through this!

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@mjane120, carcinoid or neuroendocrine tumors of the lung are different from other lung cancer types. You may also wish to follow the discussions in the
- Neuroendocrine Tumors (NETs) Support Group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

Here are a couple of discussions that might interest you:
- Typical carcinoids to be removed from lung https://connect.mayoclinic.org/discussion/typical-carcinoids/
- Newly diagnosed-Primary Malignant Neuroendocrine of Lung https://connect.mayoclinic.org/discussion/newly-diagnosed-primary-malignant-neuroendocrine-of-lung/

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@colleenyoung

@fowlair Mary, I just want to let you know that I'm thinking about you, knowing that tomorrow is your anniversary.

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That is so sweet of you! Thank you!

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@millie5737

Thank you so much for sharing as your thoughts, feelings, conflicts are similar to mine. Husband diagnosed in 11/22 with stage 4a NSCLC. Planning…..yes, it’s difficult, especially when it’s a part of your marriage to go, do, travel etc. My husband was admitted 4/13/23 to the hospital because he asked me to take him to the ER because of trouble breathing. He has had chronic inflammation since 8/22 and the cancer was diagnosed 3 months later. The inflammation has been treated with steroids and he is back on them. The hospital stay of 7 days revealed embolisms in R lung and leg. He is home using FT oxygen. We have plane reservations on May 15 that he insists on keeping. We never asked and were never offered time prognoses. We will be married 50 years in 1/24. To young couples, they may think, well you you were lucky to have had each other that long. It’s never long enough……

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You're so right!!! It's never long enough!! We will be married 61 years in June....and they said it wouldn't last 🙂 I'm Stage 4, and as long as I'm on this side of the grass, I'm finding something to be thankful for every day.....especially my guy!

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@confident

You're so right!!! It's never long enough!! We will be married 61 years in June....and they said it wouldn't last 🙂 I'm Stage 4, and as long as I'm on this side of the grass, I'm finding something to be thankful for every day.....especially my guy!

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Congratulations on 61 years❤️ Today, he decided that the trip is really not doable. I had to be patient and let him make that decision. Prayers are with you from this end.

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How do I join this group?

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@mrnootz

How do I join this group?

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@mrnootz. It looks like you have already 'followed' the Lung Cancer group. That's a great start. There are different options to receive notifications when new content is posted. If you click on the silhouette of the person in the upper right, and select Profile & Settings, click the Settings tab, and scroll down to the Notifications and Preferences section. There you'll see various options. The Digest option is a great starting point, as you'll receive an email that includes a summary of recent posts. Take a look at the options, and of course let us know if you have other questions.

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@cmcguire10

Hi Theresa, I just hit my 4 week mark after LUL Segmentectomy and a small lingular wedge. Also had both breast implants removed due to encapsulation and calcification. All in the same operation. I too still have the soreness and aches and pains of under the front breast incision(for the lung surgery) and the back and side incisions. My surgeon recommended using those lidocaine patches to help ease those pains. Like Aspercream or Solanpas. She said you could cut them to fit the area but do NOT put them on any incisions. I know Mayo offered a booklet for Pain after surgery and how to deal with it without more medications and it talked about Yoga, Tai chi, meditation, etc. You may be able to go on to their website and find it. The best thing, of course, is to talk with your surgeon about what you are allowed to do at this stage of healing. Good luck to you and I hope you heal well!
Cindy

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How did you do the explants at the same time???

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