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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 12, 2023
In reply to @tomshepherd "I am in the diagnostic stage of mesothelioma, with entire left lung needing surgery. I have..." + (show)
@tomshepherd

I am in the diagnostic stage of mesothelioma, with entire left lung needing surgery. I have a video conference scheduled with Mayo in a week, following fluid drain and ct-pet scan last Thursday. A biopsy of pleural cavity is expected next, but must be just necessary confirmation. From my research I am expecting removal of that lung due to finding of mesothelioma. I have been an avid follower if this wonderful site,but haven’t seen anything on this type of cancer. Is there hope for a resolution anyone can share?

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Hi @tomshepherd, here is a short list of some of the discussions related to mesothelioma that may interest you:
- Any information on Biphasic mesothelioma response to immunotherapy https://connect.mayoclinic.org/discussion/any-information-on-biphasic-mesothelioma-response-to-immunotherapy/
- SMART protocol for mesothelioma https://connect.mayoclinic.org/discussion/smart-protocol-for-mesothelioma/
- Treatment Options for Mesothelioma https://connect.mayoclinic.org/discussion/mesothelioma/

Tom, did you have your video consult? May I ask what you learned?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 12, 2023
In reply to @ladycricket60 "My lung cancer was a surprise.I had no symptoms but had a chest X-ray as I..." + (show)
@ladycricket60

My lung cancer was a surprise.I had no symptoms but had a chest X-ray as I was going to have a watchman implanted in my heart for AFIB. It showed a mass of 3.4 c so thank god I decided to have the watchman.I am 80 years old and also have diabetes. They did a biopsy and yes it is cancer, started chemo on the 8 of February and the 15. I then have a week off and start over twice more. They will then do pet scan and hopefully surgery. Super tired and yeast infection under breasts. Very painful

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@ladycricket60, I can imagine getting the diagnosis of lung cancer was a surprise. When is it not, right? I hope the yeast infection under the breasts has cleared up. Did you have chemo this past week? How are you doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 12, 2023
In reply to @lmd1 "I was diagnosed with stage IV lung cancer in October. I never smoked but found out..." + (show)
@lmd1

I was diagnosed with stage IV lung cancer in October. I never smoked but found out mine is caused by a gene mutation (EFGR). I had to have a tumor removed from the brain and then 3 targeted radiation treatments. . I am now taking Tagrisso. I’m trying to stay positive. Anyone else with a similar diagnosis?

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@lmd1, you may wish to also join this discussion:
– Has anyone taken the targeted therapy osimertinib (Tagrisso)? https://connect.mayoclinic.org/discussion/chemo-tab/

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nonobaddog | @nonobaddog | Mar 9, 2023
In reply to @pixiedust "I am seeing Dr. Bradley Switzer and he is with Reliant Medical Group (which is where..." + (show)
@pixiedust

I am seeing Dr. Bradley Switzer and he is with Reliant Medical Group (which is where most of my doctors are)...when I need the chemo/radiation I'm not sure where it will be yet..have not gotten to this point yet. I live in Holliston MA so it will need to be an infusion center that is close to my home!

Sandy

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Thank you Sandy. They sound like they are well organized. I go to Mayo Clinic for my treatment and my care team has a similar makeup to yours.

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Sandy | @pixiedust | Mar 9, 2023
In reply to @nonobaddog "Hi Sandy, Where do you go for your oncology care?" + (show)
@nonobaddog

Hi Sandy,
Where do you go for your oncology care?

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I am seeing Dr. Bradley Switzer and he is with Reliant Medical Group (which is where most of my doctors are)...when I need the chemo/radiation I'm not sure where it will be yet..have not gotten to this point yet. I live in Holliston MA so it will need to be an infusion center that is close to my home!

Sandy

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1 reply
nonobaddog | @nonobaddog | Mar 9, 2023
In reply to @pixiedust "Hello all: visit with surgeon update! I met with the thoracic surgeon today and he further..." + (show)
@pixiedust

Hello all: visit with surgeon update! I met with the thoracic surgeon today and he further explained about the paratracheal lymph node. He is meeting on Friday with a team of other doctors as well as the oncologist and will further discuss my situation. Likely I will hear from the Onco either Friday or Monday to come up with a neoadjuvant treatment with platinum-based doublet (PT-DC) and immunotherapy before surgery. A PET scan would follow...if I'm not lit up, surgery would be an option after a rest period. If not a candidate for surgery, then he recommends concurrent chemoradiotherapy followed by immunotherapy for at least 1 year. I found this surgeon to be very nice, as well as the Onco and the Pulmonologist - a great team. I am grateful that this has all happened so quickly and I can thank my Pulmonologist who really got the ball rolling.
Sandy aka Pixiedust

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Hi Sandy,
Where do you go for your oncology care?

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Mar 9, 2023
In reply to @pixiedust "Hello all: visit with surgeon update! I met with the thoracic surgeon today and he further..." + (show)
@pixiedust

Hello all: visit with surgeon update! I met with the thoracic surgeon today and he further explained about the paratracheal lymph node. He is meeting on Friday with a team of other doctors as well as the oncologist and will further discuss my situation. Likely I will hear from the Onco either Friday or Monday to come up with a neoadjuvant treatment with platinum-based doublet (PT-DC) and immunotherapy before surgery. A PET scan would follow...if I'm not lit up, surgery would be an option after a rest period. If not a candidate for surgery, then he recommends concurrent chemoradiotherapy followed by immunotherapy for at least 1 year. I found this surgeon to be very nice, as well as the Onco and the Pulmonologist - a great team. I am grateful that this has all happened so quickly and I can thank my Pulmonologist who really got the ball rolling.
Sandy aka Pixiedust

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I’m glad that the appointments went well, and that you have found a team that you can trust! It’s so important.
Lisa

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Sandy | @pixiedust | Mar 8, 2023

Hello all: visit with surgeon update! I met with the thoracic surgeon today and he further explained about the paratracheal lymph node. He is meeting on Friday with a team of other doctors as well as the oncologist and will further discuss my situation. Likely I will hear from the Onco either Friday or Monday to come up with a neoadjuvant treatment with platinum-based doublet (PT-DC) and immunotherapy before surgery. A PET scan would follow...if I'm not lit up, surgery would be an option after a rest period. If not a candidate for surgery, then he recommends concurrent chemoradiotherapy followed by immunotherapy for at least 1 year. I found this surgeon to be very nice, as well as the Onco and the Pulmonologist - a great team. I am grateful that this has all happened so quickly and I can thank my Pulmonologist who really got the ball rolling.
Sandy aka Pixiedust

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2 replies
Sandy | @pixiedust | Mar 7, 2023

Good morning! Update: Yesterday we met with the Oncologist. To reiterate, I have a NSCLC Adenocarcinoma that has metastesized to a lymph node. I Liked him very much...super nice. Unfortunately, I wasn't as excited with what he had to say 🙁 According to the PET scan, my node is in a very difficult spot to get at surgically. I am 77 and have type 2 diabetes. The bio marker has not come back yet, but since we don't have any children I don't suspect it's critical. My Pulmonologist had suggested IIIA but because the node location, the Onco is suggesting IIIB. At this point, I'm waiting to hear from the surgeon as he will have the final answer as to whether it can all be removed or not. The onco also suggested if the surgeon can get to it he might recommend a short course of radiation first to shrink it..then follow up with chemo/radiation. Otherwise it will be chemo/radiation and followed by immunotherapy. This is all so new and very overwhelming...and it has all happened so very fast. I never had symptoms or pain...only hoarseness in my voice which we thought might be from acid reflux. Trying to stay positive but it sure is hard. I know there are many who are in much worse condition and I pray for them and their families. Thanks for any pearls of wisdom.
Sandy aka Pixiedust

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tomshepherd | @tomshepherd | Mar 6, 2023
In reply to @pattyjo002 "Hi Tom! I had part of my lung removed in September. I’ll tell you it’s not..." + (show)
@pattyjo002

Hi Tom! I had part of my lung removed in September. I’ll tell you it’s not a piece of cake. Not too many people get to have surgery. Don’t know who your surgeon is. I had Dr. Blackmon and her team. Hat a great surgeon. I’ve had 2 pet scans since surgery. My lung are a is clear. I do have one very small spot by my breast bone. But they are going to watch it. So he hospital stay isn’t a piece of cake. Everyday I get stronger and the key is . You go in with a positive attitude makes all the difference in the world. Good luck. Need any questions just reach out.

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Thanks Patty, especially appreciate your frank comment on the gravity of the surgery. I have been given a boatload of info just now, a mesothelioma info packet arriving soon, a company I assume is funded through legal settlements, she said there is a large fund and I have a strong case😙 . This is described as a very rare form of cancer, at present two options being surgery or immunotherapy. Of course I defer to the Mayo determination. I was told not many have surgery due to the efficacy of immunotherapy. Yes! to the positive mindset!

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