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.

All_in_1963 | @burrkay | Dec 20, 2018
In reply to @margot69 "Hi, I kind of stumbled onto this site. I had a recent CT scan that showed..." + (show)
@margot69

Hi, I kind of stumbled onto this site. I had a recent CT scan that showed a nodule in my lung and 3 spots on my liver. I am 69 and a smoker. I have a PET scan this Friday. Supposed to get a lung biopsy but not scheduled yet. I am terrified. My Pulmonologist is not the most compassionate person and said this is aggressive and gave me a couple of pamphlets.

I am so upset and angry!! I have had other issues going on for some time they never coukd figure out. I started having a chronic cough, maybe in Sept. I mentioned it to my PCP and Pulmonologist who said to quit smoking. The cough continued and I about insisted on a chest X-Ray, which showed some interstitial disease and narrowing. The cough continued. I saw the ads on TV about LDCT and contacted the doctors again and was told Sutter Gould does not offer it and does not follow those guidelines. Cough continued
and I wanted this test done. Nothing available within 50-100 miles from me. Contacted my Pulmonologist again. He finally said he would order a CT, if it woukd make me feel better, but it would probably not show anything. Into December, had the CT, and got a message to call the office ASAP. I saw him yesterday and got the results. Now, it has spread! I am angry, scared, depressed and have no idea where to turn. Closest, large treatment centers near me are Stanford and UCSF, neither of which are the top places to go. There is Mayo in AZ and MD Anderson in Texas. It would be difficult to travel and I have no support except my husband who is no support. I just do not know what to do. Sorry this is so long. Anyone have any successful treatment for this? Not staged yet but not looking good.

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Hi Margo-
So sorry you have to go through this...
@llwortman has some great insight!
If there is any way, my suggestion is to get to a lung cancer treatment clinic NOW! My recommendation is Mayo Rochester...or possibly Arizona. However, I would start with Rochester.
You need to get to a clinic while you are still strong!
I did a simple google search, in view of your inability to travel.
Do you know these folks? https://www.communitymedical.org/services/Lung-Services
Check them out if they are anywhere close and reputable! You would need a referral...
My wife went through similar dead end path with pulmonologist and finally our grown children forced us to take action and go to Mayo Rochester a two day drive. We put a letter together describing our diagnosis or lack thereof, packed up her records and fedexed the package to Mayo. Within 48 hours they concluded that she had Non Small Cell Lung Cancer!
Within two weeks my wife had two right lobes in her right lung removed with the VATS procedure....by the same thoracic surgeon that did Linda’s lung surgery! All, with “self referral” by mail and phone...and of course a two day drive to get there!!
That was in 2015...three years later, she enjoys a goodbquality of life with stage 4 metastatic lung cancer, thanks to Mayo and her strength and stamina, and of course a strong faith in God!
Do the lung biopsy at a lung cancer clinic such as Mayo...then have a molecular study of the specimen to determine the EXACT mutation you have.
Best of luck to you and your family with getting through this stressful time!

REPLY
sakota9 (Joan) | @sakota | Dec 20, 2018
In reply to @margot69 "Thank you so much for replying, Linda. I can it get my mind past this. Messaged..." + (show)
@margot69

Thank you so much for replying, Linda. I can it get my mind past this. Messaged most of my doctors. The only one I trust here is my GI Doctor. He wrote and said wait for the results of the tests but is concerned they see it in lymph nodes. Nobody mentioned lymph nodes to me jyst showed me the 3 spots on the liver. I cannot see us traveling, esp to the East Coast. Unfortunately, my husband is having health issues and had a stent put in a couple of months ago and stupidly having issues with his BP. Our kids do not live close to us and have their own lives and jobs. My PCP sent a message they can do hete what they do at Stanford. There are very few decent doctors or Specialists in the Central Valley and more and more have to go to the Bay Area. My neighbor had to take her husband over there again today. Hard to believe but a friend died of lung cancer a couple of years ago, a bit younger, smoker. Got a call just 3 nights ago another friend passed of lung cancer, 68, probably quit smoking 40 years ago and she was going to Stanford! Some part of me is angry only because I took care of fami,y and my parents for years. My mother passed at age 95 almost two years ago. Oh, I would not have done things differently but this was the first time in years I had nobody to worry about and now this. And, I am so damn upset and nervous. I am smoking!!!

Jump to this post

@margot69 Oh please don't smoke, That won't help anything. Do you have a counselor or even just here a special someone that you can talk to . I've learned when I was getting upset and tense. I would eat!!! I used to smoke but no starting that again. Theres only a certain about of things we can control in our lives and other things we just have to let go to keep our hope and sanity. I had to let go of a lot of things this past year, hasn't been easy , and sometimes I am tempted to blow up again but then I I realize I cannot change anything in the past and now I need to make my present and future a easier place for me. More power to yu and my prayers, margot

REPLY
sakota9 (Joan) | @sakota | Dec 20, 2018
In reply to @meka "Who else could make a referral?" + (show)
@meka

Who else could make a referral?

Jump to this post

do you need a referral, meka. when I first came to mayo in 2011 I just called and asked to make a appointment for a checkup.. so then I heard back with a number of tests to be done and drs app. Luckily they found I had lung cancer and mostly been coming here ever since.

REPLY
bluelagoon | @bluelagoon | Dec 20, 2018
In reply to @margot69 "Hi, I kind of stumbled onto this site. I had a recent CT scan that showed..." + (show)
@margot69

Hi, I kind of stumbled onto this site. I had a recent CT scan that showed a nodule in my lung and 3 spots on my liver. I am 69 and a smoker. I have a PET scan this Friday. Supposed to get a lung biopsy but not scheduled yet. I am terrified. My Pulmonologist is not the most compassionate person and said this is aggressive and gave me a couple of pamphlets.

I am so upset and angry!! I have had other issues going on for some time they never coukd figure out. I started having a chronic cough, maybe in Sept. I mentioned it to my PCP and Pulmonologist who said to quit smoking. The cough continued and I about insisted on a chest X-Ray, which showed some interstitial disease and narrowing. The cough continued. I saw the ads on TV about LDCT and contacted the doctors again and was told Sutter Gould does not offer it and does not follow those guidelines. Cough continued
and I wanted this test done. Nothing available within 50-100 miles from me. Contacted my Pulmonologist again. He finally said he would order a CT, if it woukd make me feel better, but it would probably not show anything. Into December, had the CT, and got a message to call the office ASAP. I saw him yesterday and got the results. Now, it has spread! I am angry, scared, depressed and have no idea where to turn. Closest, large treatment centers near me are Stanford and UCSF, neither of which are the top places to go. There is Mayo in AZ and MD Anderson in Texas. It would be difficult to travel and I have no support except my husband who is no support. I just do not know what to do. Sorry this is so long. Anyone have any successful treatment for this? Not staged yet but not looking good.

Jump to this post

Welcome and glad you found this site! I'd RUN FROM any medical place that said it "doesn't follow" the current guidelines on CT scans. At 58, it's what helped identify mine in March while it was still small enough to do surgery. In my case, when putting together questions for the local surgeon that our docs recommended I found that although he had a good reputation the hospitals around us were way down the charts. And, so we contacted Mayo and made an 8 hour drive only to pull into the hotel parking lot and see license plates from way further than we'd driven. The sense of calm that people have in a place where everyone has trust in the care (and by lunch when a doctor carrying his lunch stopped because we looked lost we knew it was more than even the medical care) just can't be overstated. Also, I'm not sure I understood @llwortman as far as triple the price. I didn't do a $ comparison, but at home they said after surgery I'd be in the hospital a week, with the first 2 nights in ICU. Well, at Mayo they said I'd be in the hospital 4 nights and I'd be up walking the 1st night- and I was! So, even if they charged more per day there were no ICU nights and less total days. I know that saved me, in sanity alone. Best wishes!

REPLY
1 reply
margot69 | @margot69 | Dec 21, 2018

Thank you. I was reviewing my messages and I was trying to address this cough with two dictirs since Sept and all I got was "quit smoking". Going back to Mayo is just not a possibility. My husband is dealing with health issues and I have nobody else. Anyone ever been to Mayo in AZ? Stanford? UCSF? I get the PET scan today. I am so nervous over all this, I feel sick.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Dec 21, 2018
In reply to @margot69 "Thank you. I was reviewing my messages and I was trying to address this cough with..." + (show)
@margot69

Thank you. I was reviewing my messages and I was trying to address this cough with two dictirs since Sept and all I got was "quit smoking". Going back to Mayo is just not a possibility. My husband is dealing with health issues and I have nobody else. Anyone ever been to Mayo in AZ? Stanford? UCSF? I get the PET scan today. I am so nervous over all this, I feel sick.

Jump to this post

@margot69- Welcome and know that my heart goes out to you. It's a horrible feeling when you think that you have nowhere to turn for help. Twenty-one years ago when I felt that I had no where to go I turned to the American Cancer Society. They have all sorts of services and recommendations and most of them are free.
Is your husband being treated anywhere where you can be treated too? You really do need to concentrate on you too! Can a neighbor or relative help with your husband or you?
I know that we don't want to disturb our child's lives but hey, sometimes they just have to chip in and help us out.
I wont say anything about your smoking- you know that it's bad for you. BUT if you have cancer it might be a good idea to think about it.
Ar you having any biopsies?

REPLY
Merry, Alumni Mentor | @merpreb | Dec 21, 2018
In reply to @meka "Who else could make a referral?" + (show)
@meka

Who else could make a referral?

Jump to this post

@meka- Any more news?

REPLY
Linda | @llwortman | Dec 21, 2018
In reply to @bluelagoon "Welcome and glad you found this site! I'd RUN FROM any medical place that said it..." + (show)
@bluelagoon

Welcome and glad you found this site! I'd RUN FROM any medical place that said it "doesn't follow" the current guidelines on CT scans. At 58, it's what helped identify mine in March while it was still small enough to do surgery. In my case, when putting together questions for the local surgeon that our docs recommended I found that although he had a good reputation the hospitals around us were way down the charts. And, so we contacted Mayo and made an 8 hour drive only to pull into the hotel parking lot and see license plates from way further than we'd driven. The sense of calm that people have in a place where everyone has trust in the care (and by lunch when a doctor carrying his lunch stopped because we looked lost we knew it was more than even the medical care) just can't be overstated. Also, I'm not sure I understood @llwortman as far as triple the price. I didn't do a $ comparison, but at home they said after surgery I'd be in the hospital a week, with the first 2 nights in ICU. Well, at Mayo they said I'd be in the hospital 4 nights and I'd be up walking the 1st night- and I was! So, even if they charged more per day there were no ICU nights and less total days. I know that saved me, in sanity alone. Best wishes!

Jump to this post

Bravo!!! I was 58 when I was diagnosed, too! It’s been 12 years! Love to stay Connected!

REPLY
margot69 | @margot69 | Dec 21, 2018

I had blood work done this morning. The test results in all look ok. Actually, I am sitting here now killing time waiting tondo the PET scan as they just injected me. Truthfully, I don't want any results until after Christmas. I really do not want to have to travel. I feel more comfortable in my own home. That is why I asked if anyone has gone to Stanford or UCSF. I have not been on here that long but most seem to be on the East coast. Actually, my GI Doctor called me at home because I let him know what was going on, He called as site messages can be seen by others. He is more supportive then my own damn doctors. He will keep,an eye on things, esp my liver.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Dec 22, 2018
In reply to @margot69 "I had blood work done this morning. The test results in all look ok. Actually, I..." + (show)
@margot69

I had blood work done this morning. The test results in all look ok. Actually, I am sitting here now killing time waiting tondo the PET scan as they just injected me. Truthfully, I don't want any results until after Christmas. I really do not want to have to travel. I feel more comfortable in my own home. That is why I asked if anyone has gone to Stanford or UCSF. I have not been on here that long but most seem to be on the East coast. Actually, my GI Doctor called me at home because I let him know what was going on, He called as site messages can be seen by others. He is more supportive then my own damn doctors. He will keep,an eye on things, esp my liver.

Jump to this post

@margot69-I know how you feel about wanting to wait until after Christmas for tests results. I'm just the opposite- I want to know the results even before the test is done, lol. But I get you. I'm glad that you have one doctor that you feel that you can trust. May I ask, why are you staying with your present doctors if you don't trust them or like them?

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