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.

Thanks, that's a good idea.

REPLY
@sura

it is indeed adenocarcinoma, in the non smallcell group. Yes there is debate about how these nodules are dealt with these days, with an emphasis placed on quality of life. I have read the staging and grading that is currently being used to assess treatment or waiting with repeated CT's., mine falls in the 'do nothing for now' range, relying on 7-month CT scans to assess changes and change course if need be. They are low-grade and primarily groundglass at this point. My doc indicates the nodules are too small to be picked up on a PET scan. l am 77, these nodules were first seen 7 years ago, they have doubled since then. I too am active, still working, involved. The docs do not want to change that at this point, so the protocol these days , confirmed by much of my sleuthing is to keep a close eye via CT scans - this is based on size of nodule, quality of nodule (groundglass versus solid, etc), that they are all contained at present and considered small in medical terms - 9mm, 11mm, 13mm.....I have no other chronic conditions. I know this would have been immediate surgery in earlier times, typically removing the entire lobe, not a wedge resection. I am appreciate we have come that far.....I will find the thread that Merry has begun. Thank you for your response and for letting me know about others with these same modules. And adding your knowledge. It is deeply appreciated..

Jump to this post

Hello, @sura- How are you this morning? I wanted to check in to see how you are handling this. I am also 77, just! lol. I agree that science has come a long way in the treatment of multifocal adenocarcinoma!

Merry

REPLY
@nellie1

Hi, my Nme is Debby, and I have stage 2A adenocarcinoma. I had the upper rt lobe removed last August . Genetic testing was done and I have an EGFR mutation, which is orally treatable with 80mg Tagrisso. I started the drug a month ago and am having fatigue and weakness and some brain fog. Otherwise, I have been doing well

Jump to this post

Welcome to Mayo Connect, @nellie1. I hope that things have not changed since you last wrote. All of your symptoms seem very normal for this drug. Are you able to get out and walk, at least a little?

Merry

REPLY
@merpreb

Hello, @sura- How are you this morning? I wanted to check in to see how you are handling this. I am also 77, just! lol. I agree that science has come a long way in the treatment of multifocal adenocarcinoma!

Merry

Jump to this post

good to know others are out there! every little twitch now worries me, it is ridiculous... I am trying to master this, there will be lots of time to worry. Thoracic clinic is confident we do nothing right now, quality of life is fine. Removing the 3 large nodules would not significantly alter breathing and docs believe I would do well with the surgery. But they do not want to do it now, adenocarcinomas are too small, doubled in size over 7 years. They will refer me to a radiation oncologist if I wish, but believe they would advise to do nothing at this point. and a PET scan would not pick up something this small. I believe we will know more with the next CT scan in May - has the tissue changed? Have they grown? So until then I am trying to master being calm, not yet successful. I am sure I should be appreciative we caught this so early and somewhere in there I am, but still worried for the long-haul future, What is your situation?
helpful.

REPLY
@sura

good to know others are out there! every little twitch now worries me, it is ridiculous... I am trying to master this, there will be lots of time to worry. Thoracic clinic is confident we do nothing right now, quality of life is fine. Removing the 3 large nodules would not significantly alter breathing and docs believe I would do well with the surgery. But they do not want to do it now, adenocarcinomas are too small, doubled in size over 7 years. They will refer me to a radiation oncologist if I wish, but believe they would advise to do nothing at this point. and a PET scan would not pick up something this small. I believe we will know more with the next CT scan in May - has the tissue changed? Have they grown? So until then I am trying to master being calm, not yet successful. I am sure I should be appreciative we caught this so early and somewhere in there I am, but still worried for the long-haul future, What is your situation?
helpful.

Jump to this post

@sura- You certainly have been busy! I've had lesions that have been too small that a PET won't pick them up either. Right now, I'm waiting for a CT on January 19th. I am not looking forward to this at all. I might ask my sister to come with me. I travel out of town for Cancer treatments. It takes a little over an hour and then I have to take a taxi through Boston traffic. As is I won't have enough anxiety!

REPLY

Oh I have been imagining all this, as the time is closer to each CT scan the anxiety increases. What treatment have you had? When my nodules grow or become otherwise worrisome I am playing to make a trip to Mayo for their opinion and maybe for their treatment as well. They are no longer doing out-of-state consultations, I am in Chicago so it's a 5-6 hour drive to Minnesota Mayo. I have been going alone to my appointments - went to all hospital visits with my husband for 4-l/2 years for his prostate cancer treatments, in clinical trials. He died 3 years ago and I still acutely remember the hospital visits & anxiety....yikes, sometimes life asks so much.

REPLY

Good Morning,

Great News!
Adeno lung tumor shrunk. So, Thankful
CT in 4 months

REPLY
@sura

Oh I have been imagining all this, as the time is closer to each CT scan the anxiety increases. What treatment have you had? When my nodules grow or become otherwise worrisome I am playing to make a trip to Mayo for their opinion and maybe for their treatment as well. They are no longer doing out-of-state consultations, I am in Chicago so it's a 5-6 hour drive to Minnesota Mayo. I have been going alone to my appointments - went to all hospital visits with my husband for 4-l/2 years for his prostate cancer treatments, in clinical trials. He died 3 years ago and I still acutely remember the hospital visits & anxiety....yikes, sometimes life asks so much.

Jump to this post

@sura- Life sure does tax us at times! I am very sorry for your husband's passing.

I wish you the best with Mayo Clinic. I use another hospital because I live in New England, and we have Mass General! I was even there once when Teddy Kennedy was hospitalized.

Take care of yourself this holiday.

Merry

REPLY
@armycolonel

Good Morning,

Great News!
Adeno lung tumor shrunk. So, Thankful
CT in 4 months

Jump to this post

Yea!!! Merry Christmas!

REPLY
@pb50

Yea!!! Merry Christmas!

Jump to this post

Thank You!
Merry Christmas and Happy Year!
Prayers for everyone!

REPLY
Please sign in or register to post a reply.