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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?
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@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?
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.
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1 ReactionWelcome 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!
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3 Reactionsdo 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.
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1 Reaction@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
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1 ReactionHi 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!
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2 ReactionsWill look for it!!!
margot69 - I sent you a personal message so look for it!
It is so good to know that you trust your GI doctor. It sounds like he is giving you wise choices and recommended to wait until test results are back. There is no doubt that we become fearful when doctors mention the possibility of cancer.
To help anyone wrap their mind around this time of waiting, I recommend they read Dr Amit Sood’s book “Stress Free Living”or “Happiness”. The read truly helps us find a new way to live day by day. It also helped me accept my diagnosis and walk away from the unfair stigma and put a smile on my face. They say smiles help our brain and body, right?
Research has come such a long way, and I have seen proper treatment give patients a good quality of life for many years. Research has discovered gene mutations that you may want to read about including ALK or EGFR, these discoveries help us better understand lung cancer the disease.
A lot of lung cancer survivors living with stage four share their stories on the website: Team Draft.org started by Chris Draft who was an NFL player and lost his 36 year old bride to lung cancer. Chris Draft continues to bring lung cancer patients together. Chris grew up in CA and graduated from Stanford. Then played in NFL for 12 years. His goal is to bring lung cancer patients together and calls everyone a SURVIVOR! The survivors I have met are all remarkable, like you! Think about sharing your story with these people who maybe living in your state and may be able to help you sort out some of your concerns. Let’s stay connected.
meka- you are a delight.