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.

Thank you for your comments, I feel better already

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@grandmasheri

They don’t want to tell me anything until after the next 2 tests are done however all results of test are on the web through a MyChart app. Of course I don’t understand a lot so I have to research the terms. I don’t see that they ran geo testing on the biopsy and that concerns me after reading through answers on this page. That’s one of the questions I’m going to ask on Oct 10th when I go for my results. I know from the results I have adenocarcinoma.

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Sheri- I am not able to read CT scans. But it looks like, from what is written under the photo, there does seem to be a mass. Genetic testing takes a while for the results to come in. The gene testing should have been a part of the biopsy. Do you have those results yet? If not then call to make sure that it was done. I'm sure that your tissue sample is still available for testing if it needs to be done.

I'd make a question list and make sure that you get answers for each one. You are entitled to answers. A gene test is a necessity so there isn't a reason for it not to be done. Insist on it!

I'm sorry that your outcome was not what you had hoped. I was a heavy smoker also. Have you quit smoking yet?

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Thanks for the comment, I will write down questions before I go see them.

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@samanthaezu

Surgery chemo or radiation......but she won't undergo all those treatments.....

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Hi,
I am sailaja.
I saw your post on herbal medicine Oncotame-S.
My brother in law is diagnosed with stage 4 peritoneum cancer. He is advised to take this ayurvedic medicine as no treatment available for his case in Allopathy.
It will be great if you can share feedback for herbal medicine

Thank you in advance

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Hello Colleen! I am new to this group and I look forward to learning as much as I can. I was recently diagnosed with Adenocarcinoma of the upper right lung. I've had x-rays, CT scans and finally the biopsy - which gave me the answer. I am scheduled for a PET scan on Tuesday to determine staging. I am totally in a fog, this is all happening so fast..and a bit scared too!

Thanks for any words of wisdom!
Sandy

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@pixiedust

Hello Colleen! I am new to this group and I look forward to learning as much as I can. I was recently diagnosed with Adenocarcinoma of the upper right lung. I've had x-rays, CT scans and finally the biopsy - which gave me the answer. I am scheduled for a PET scan on Tuesday to determine staging. I am totally in a fog, this is all happening so fast..and a bit scared too!

Thanks for any words of wisdom!
Sandy

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Hello,
My name is Cindy and I am also just finding out about all this as well. I had a lung screening and they found a nodule in my upper left central lobe. Mine was just by chance as I was just setting up a new PCP as I had just moved here a year and a half ago. Turns out the nodule was there since at least 2014, but I never knew. It’s in my hospital records after a car accident, but, the biggie… they didn’t tell me or my Dr!
Well anyway, my journey started on 1-5-23 and have had the Lung screening CT, blood work, Pulmonary visit, an Endobronchoscopy and this past week I just had my PET scan. Mine and my families heads have been spinning! Good news is it hasn’t spread anywhere else! The hard part is waiting for each test result, I think. Then the beating myself up for smoking for so many years, and then turning it to planning on how to fight so I can be around for many more years. I go to Mayo and I wouldn’t go anywhere else here. They are the BEST! I hope you get the care you need and try not to focus on every little thing. (Easier said than done, I know!) Try to keep busy and take lots of long walks. It does help relax you. Best regards!

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@cmcguire10

Hello,
My name is Cindy and I am also just finding out about all this as well. I had a lung screening and they found a nodule in my upper left central lobe. Mine was just by chance as I was just setting up a new PCP as I had just moved here a year and a half ago. Turns out the nodule was there since at least 2014, but I never knew. It’s in my hospital records after a car accident, but, the biggie… they didn’t tell me or my Dr!
Well anyway, my journey started on 1-5-23 and have had the Lung screening CT, blood work, Pulmonary visit, an Endobronchoscopy and this past week I just had my PET scan. Mine and my families heads have been spinning! Good news is it hasn’t spread anywhere else! The hard part is waiting for each test result, I think. Then the beating myself up for smoking for so many years, and then turning it to planning on how to fight so I can be around for many more years. I go to Mayo and I wouldn’t go anywhere else here. They are the BEST! I hope you get the care you need and try not to focus on every little thing. (Easier said than done, I know!) Try to keep busy and take lots of long walks. It does help relax you. Best regards!

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Thanks @cmcguire10. Good news yours has not spread...and I agree the hard part is waiting for answers. I have not gotten to the point of talking with an oncologist or thoracic surgeon yet..hopefully that will be soon. I'm also curious as to how long it takes from the time you are diagnosed and at what stage - to actually doing something about it (i.e. removing it) or whatever other options there are if it has spread. I feel as though I am in the abyss and the more youtube videos I watch the more stressed I get.

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@pixiedust

Thanks @cmcguire10. Good news yours has not spread...and I agree the hard part is waiting for answers. I have not gotten to the point of talking with an oncologist or thoracic surgeon yet..hopefully that will be soon. I'm also curious as to how long it takes from the time you are diagnosed and at what stage - to actually doing something about it (i.e. removing it) or whatever other options there are if it has spread. I feel as though I am in the abyss and the more youtube videos I watch the more stressed I get.

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The best advise I can give you is what a Dr told me, don’t use Dr Google! Only use reliable sources like Mayo Clinic, Cleavland Clinic, UCLA, Harvard, etc. .coms are not usually reliable. I know I have been researching since January and at times overwhelmed myself with information. Then you have to look up things to figure out what the last thing meant. You can drive yourself crazy! The best thing is to talk with your doctors. Write down a question as soon as it pops in your head because it will be replaced with another question 5 minutes later. Also this Mayo Clinic connect is a great place to find answers. I hope you get your answers soon. Even if they are not the answers you want it is still better that they are answered and then you can plan your next steps! God Bless you!🙏

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@pixiedust

Thanks @cmcguire10. Good news yours has not spread...and I agree the hard part is waiting for answers. I have not gotten to the point of talking with an oncologist or thoracic surgeon yet..hopefully that will be soon. I'm also curious as to how long it takes from the time you are diagnosed and at what stage - to actually doing something about it (i.e. removing it) or whatever other options there are if it has spread. I feel as though I am in the abyss and the more youtube videos I watch the more stressed I get.

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Also just wanted to add that I have more tests coming, like a Heart stress test, etc . I am scheduled to have a minimally invasive segmentectomy of my left upper lobe. 2 segments instead of a lobectomy. That is on March 24th. So it will be close to 3 months between lung screening and surgery. Lots of tests to make sure of where and what you have. Pulmonary function test to see if a candidate for surgery, etc. That may seem like a long time but it is flying by so quickly! Hope that helped answer your other question🙏

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@cmcguire10

Also just wanted to add that I have more tests coming, like a Heart stress test, etc . I am scheduled to have a minimally invasive segmentectomy of my left upper lobe. 2 segments instead of a lobectomy. That is on March 24th. So it will be close to 3 months between lung screening and surgery. Lots of tests to make sure of where and what you have. Pulmonary function test to see if a candidate for surgery, etc. That may seem like a long time but it is flying by so quickly! Hope that helped answer your other question🙏

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Yes, thanks and good luck on your lobectomy. I have already had a nuclear stress test and an echocardiogram...and did fine with both. I'm scheduled for the PET scan tomorrow (if they don't cancel due to snow storm) and a pulmonary function test on 3/13. I do need labwork done waiting to hear when Dr. wants it done. I have a follow up with pulmonologist on 3/29 (have not seen an onco yet).

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