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.

meka | @meka | Dec 19, 2018
In reply to @colleenyoung "@meka, this is the perfect place to vent and yes, your message remains posted. This is..." + (show)
@colleenyoung

@meka, this is the perfect place to vent and yes, your message remains posted. This is exactly what Connect is for. Cancer sucks and sometimes we just have to say it. It is also a place to get and give support, find hope and take small steps to cope better. I love the advice you got from @sakota and @merpreb. I can see that you have held on to their virtual hands and gathered strength from them. One day at a time.

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Bravo to those who help so much on these sites, just to know people got your back. Will stay in touch and maybe get to Mayo soon!!!

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1 reply
meka | @meka | Dec 19, 2018
In reply to @merpreb "@meka good for you! Taking positive steps! you can have someone else make the referral? What..." + (show)
@merpreb

@meka good for you! Taking positive steps! you can have someone else make the referral? What about telling your senator this?

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Who else could make a referral?

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3 replies
margot69 | @margot69 | Dec 19, 2018
In reply to @llwortman "You are so brave to speak up and share your story. I understand your anger, frustration..." + (show)
@llwortman

You are so brave to speak up and share your story. I understand your anger, frustration and fears...I had a similar story 11 years ago!
The unfair stigma is horrible even for those of us Who Never Smoked! We all know smoking is very bad, right? But how many people know nicotine is the most addictive substance on the planet? I learned that in Nicotine rehab, even though I never smoked...just
days after surgery to remove a 3cm tumor, all of my upper left lung lobe and a wedge in my lower left lung lobe. 11 years ago there
was only 15% chance of living after lung cancer diagnosis. Two years before my diagnosis, I had a chocking cough and local doctors would not listen to me or give me chest X-ray! I thought I had SARS or TB due to my career and international traveling.

There is hope...because research has come such a long way and people are living after proper diagnosis and proper treatment.

Honestly, traveling to a facility like MD Anderson or Mayo Clinic is worthwhile, a second opinion maybe saving your life and your quality of life and mental sanity. It sounds like you have spunk! What are you waiting for?

I traveled to Mayo Clinic in Rochester MN. A team of doctors and staff listened with care and compassion and my thorasic team follows me to this day, with great care and respect. The cost in comparison to private practice where we live is triple the price and to this day the care where we live is very poor for lung cancer. I have seen friends who refuse to "get out of Dodge" and die a horrible death. The people I have convinced to go to a medical research hospital like Mayo Clinic are living and thriving, like me!

So pack up the husband and drive...you may be able to find discounted hotel on HOTWIRE.com. Purchase a parking pass all to save money. If you decide to fly Delta has a Mayo Clinic special flight fare and you can change the dates. Also, there are often facilities who will provide free housing as well.
Let's stay connected. I know you can do this...but find a medical team who live for lungs and are compassionate. My favorite question to surgeons is: "So, how many of these procedures have you done?" At Mayo Clinic my favorite answer was "We have done 2,500 VATS procedures and 5,000 lung transplants!": The best news is with the brilliant medical minds and loving support, I am alive and thriving today. Lung Cancer Became My Blessing! Take that anger to the best facility you can find.If they won't give you an appointment, drive to their medical hospital and ask for a lung health specialist. While in the waiting rooms think about reading the book: Stress Free Living by Dr Amit Sood and then pass the book onto your loved ones and friends. Look at this as an amazing lesson. Be kind.

Sincerely,

Take care and Cyber Hugs,

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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!!!

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1 reply
sakota9 (Joan) | @sakota | Dec 20, 2018

Meka. Always here for you.

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Merry, Alumni Mentor | @merpreb | Dec 20, 2018
In reply to @meka "Talked to a retired Sgt MJ at Senators office, know he has been a great help..." + (show)
@meka

Talked to a retired Sgt MJ at Senators office, know he has been a great help to other veterans. Very patient, took copies of things and issues I had. Stated that other vets have been referred mainly due to lack of decent diagnosis, etc around here. Did not hear today, but my counselor helped with new action plan if needed. Also reminded me that I have survived way too much already to stop now. Will stay in touch.

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@meka- Way to go- you are on a roll now for you and other vets! Keep insisting and while you do try and be kind to yourself- rest, good food and rest! This is a tough time of year to have to tackle this but you are doing it and I'm sure that you will win! Have a wonderful and peaceful holiday

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Merry, Alumni Mentor | @merpreb | Dec 20, 2018
In reply to @meka "Who else could make a referral?" + (show)
@meka

Who else could make a referral?

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@meka- Does anyone here who is a vet answer this for @meka? I wish that I could give you one.

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Merry, Alumni Mentor | @merpreb | Dec 20, 2018
In reply to @meka "Bravo to those who help so much on these sites, just to know people got your..." + (show)
@meka

Bravo to those who help so much on these sites, just to know people got your back. Will stay in touch and maybe get to Mayo soon!!!

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meka- you are a delight.

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Linda | @llwortman | Dec 20, 2018

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.

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seaspray | @seaspray | 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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margot69 - I sent you a personal message so look for it!

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1 reply
meka | @meka | Dec 20, 2018
In reply to @seaspray "margot69 - I sent you a personal message so look for it!" + (show)
@seaspray

margot69 - I sent you a personal message so look for it!

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Will look for it!!!

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