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Never Smokers & Lung Cancer
I Never smoked and was properly diagnosed & properly treated with VATS surgery that removed a 3cm tumor, my upper left lobe and a wedge in my lower left lobe, at Mayo Clinic RST by an amazing team...I am so grateful to be alive alive almost 9 years later;-)
It's a shock to hear the words, "You have lung cancer" but in 72 hours I was in life saving surgery! It was difficult to breathe & my husband stood by my bedside and said, "Breathe, Breathe, Breathe!"
I will never forget sitting in Nicotine Rehab, required by insurance...even though I neVer smoked, and hearing the shocking lung cancer statics! I also realized physicians & surgeons and their teams may feel the ugly lung cancer stigma.
Through research and also through personal experience I realized the Stigma is unfair. It made me so mad I decided to started running, 3 years after surgery. to prove there can be quality of life after lung cancer. I ran a 5k race in 50 states and I Often finished 1st in my age group!
I started running a 10k in every continent 2014. But that was interrupted when I was invited to the Kili Heart Climb this summer Aug 2016.
I think I am the only lung cancer survivor to summit Mt Kilimanjaro, Africa. There was a Mayo Clinic Research Team "watching & testing"
our every move. I love a challenge.
Honestly walking heal toe to the peak was almost as challenging as breathing was after lung cancer resection! But I made it to Uhuru Peak! This would not have been possible without so many wonderful souls! I can't wait until mountain testing results are in! Watching thecresearch teams work was amazing! Do they ever find time to sleep?
My husband & I started a foundation to create lung cancer awareness and lung health awareness so lives can be saved and research finds can be raised for lung cancer the #1 cause of death Lung Cancer killer.
We sponsor Running Lungs 10k 5k and 2k Run/Walk/Fun events to raise awareness and research dollars.
So this is your invitation to participate with us and help us create the best quality of life possible for lung cancer families and patients,
Kudus to all of my doctors and everyone at MayoClinic...including the work of everyone Rochester. I am so grateful.
Again Thank You. Let's get A lung cancer support group together and shake out a cure!
Hugs,
Linda
Oh, come join us No v4th at 4pm at Soldiers Field you can walk run or just say hi!
If you participate you will receive some nice swag!
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Hi Linda, thank you for starting this discussion on lung cancer and non-smoking. When people hear lung cancer, they often default to smoking as the single cause. Lung cancer patients whether they were smokers or not have to bear the blame and stigma. I can't believe you had to go to nicotine rehab.
Can you elaborate on the statement you made -- I also realized physicians & surgeons and their teams may feel the ugly lung cancer stigma -- Did you mean some healthcare professionals treating lung cancer may also bear the burden of stigma or that they may also perpetuate the stigma? How can patients help change that?
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1 ReactionHi Colleen: Francis 5 is an amazing hospital ward where I recovered after lung cancer surgery. I had an amazingly brilliant, dedicated and compassionate medical team. Their support helped me want to fully recover. As difficult as it is.
Lung cancer surgery and difficulty breathing can put you and everyone around you at the brink of life.
I could not help but feel the emotions of my medical team as well. They work so hard with many challenges.
Then there are the follow up calls after you go home. One of mine was, "its hurts to breathe." The kind & perhaps sad voice said, "l know!" That person soon left the department. I ran into a favorite nurse, after she quit her career...the emotional pain was too great! I said I get it & now, Who is helping you? She said, No one understands!
I thought, what does that stress really do to our professionals who work with a disease that has such a high death rate? And horrible unfair stigma?
So, I strive to be the best patient !
I want to make a difference in the lives of everyone who works on Francis 5 as well as those who we may never see including research teams.
As a never smoker diagnosed with this lung cancer 'disease' Insurance required that I attend nicotine rehab. And when I said, "What a waste I NEVER smoked." I was told sure, "Do you want your medical bills paid?"
What do professionals go through?
How do they cope?
What does it do to them personally?
How to they deal with the depression caused by the stigma as a professional trying to save lives?
How many talented brilliant professionals walk away?
Then what? It's very sad but true!
Nine years ago there was not a lot of research information about lung cancer and less about Lung Cancer and Never Smokers.
Thanks to Mayo Clinic research now that is changing! However, it is shocking to me, the more I advocate for lung cancer, lung health and pulmonary research funding (for all) that the stigma & blame and lack of lung cancer & lung health are still wrapped around smoking! We all know smoking is bad!!! But what about the other factors? Environment, Diet, Hormones, Genetics...????
And how can we raise the awareness for desperately needed research lung cancer funding?
What about the frustration of the brilliant doctors and research teams who have the unbelievable desire to research a disease that will topple "1" Billion deaths in the 21st Centry?
What about the small town doctors who are not properly diagnosing their patients ? ...but honestly thought it was asthma? And then that 6 year old, or 20 year old , or 36 year old ,or 42 year old , never smokers that died... of Lung Cancer?
What about all of those who know their body is not well, but don't have a clue about lung disease?
What about the medical cost? Cost to family,? community ?and government ?
Why haven't the statics about lung cancer and" 17% chance of surviving" changed since too many years ago ? (the mid 70's).
Lung cancer deaths surpassed Breast cancer deaths in the late 1980's!
Lung cancer takes more lives each year than Colon, Breast & Prostate Cancers combined not only in the USA but worldwide!
So let's work together and step over the stigma and unite to support lung cancer, lung health and pulmonary research! Let's save lives by saving our lungs!
Let's start by learning & teaching our children about the amazing lungs!
I'm ready to share ideas and fun lung facts if anyone wants to step over stigma with me...a grateful 9 year lung cancer survivor, who Never Smoked and is Fighting to help Save Lives from the #1 cancer killer Lung Cancer!
Thanks for asking!
Linda
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3 ReactionsHow do we Connect Lung cancer patients who live in loneliness and fear due to Stigma?
What can I do after I gain trust of lung cancer patients and loved ones who have shared stories and then their emails, but haven't found the courage to connect with their email, yet have a desire to silently connect?
Linda
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2 ReactionsHello @llwortman! Your story is inspiring and your passion is contagious. Thank you for sharing both. What a journey you have been on!
Mayo Clinic Connect is the perfect place for you to support and connect with others who are experiencing the same feelings, diagnosis and concern as you.
We promote keeping community dialogue public to support those needing to connect. There is the option of a private message if someone is needing to communicate or ask you a private question. However, being open and sharing your journey is the best way to let others know they are not alone.
@llwortman, I see you have connected with others already in other discussions. Great job!
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2 ReactionsDear Jamie: so nice to hear your positive reply!
I still need your coaching as to how to share others info? Any suggestions?
Thank you for your amazing support! Your team is making such positive changes and giving HOPE by connecting patients and loved ones on their health journey.
Keep up the great work! I am grateful. You deserve a hug!
Linda 😉
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1 ReactionHi Linda-
Don't know how you consider having lung cancer a blesssing, but I agree Francis 5 is an amazinag place...and Mayo in Rochester and Jacksonvile are wonderful!
My wife, Kay had VATS surgery to remove 2 lobes in her right lung in May, 2015. At the time, we were devastated by the disease. She had been on a journey of 15 months with pulmonary doctors, gastro doctors, etc. all of which told us that it was not a cancer! Finally, I contacted Mayo through the web site and applied for an appointment. The folks in Rochester worked fast and got her in right away, once they determined she had a non small cell adenecarcinoma.
She had CHEMO in August/September and finally last fall Dr. Menefee discovered that it was back! He re-staged her to stage 4 and as of today, she has had 9 Obdivo treatments...only to find out with the last PETSCAN that she is not responding. So, we had a needle biopsey done in Jacksonville on October 27 to enable the process of Genomics Profiling. We are awaiting word from Mayo as to any possible alternative therapies our there. The waiting is PAINFULL to say the least!
Keep on with your good news and we will let you know what we find out-once we hear back in December.
All the best,
Bill
Hi Bill:
After departing Rochester we returned home and I had a tough time climbing stairs, sitting, sleeping, I'm sure you know.
I received a call from Mayo oncology asking if I wanted to participate in the Paced Breathing Research Study, by Dr Amit Sood.
This meditation dvd was unique because of the soothing voice that guided my mind, body & nervous system to a relaxation state
that afforded me to accept cancer, reduce the fear and help me live one day at a time...like never before. At my five year survival, my
life insurance cancelled my policy and said, "You should be dead"! That comment made me realize everyone needs an education about
lung cancer, life and breath. I also learned researchers suffer the same unfair stigma and this is why it has been difficult to find a cure!
Despite all of the challenges from breathing, to fighting insurance, lung cancer taught me that patience, determination, gratitude, kindness and silent blessings are returned 10 fold, when given out. I have also learned life is about quality. A really great book is
Happiness, by Dr Amit Sood (Mayo Clinic) It's a life changer for patients and loved ones. If you decide to read it, let me know what you
think? It helped me change my life...and that is a blessing that would have never happened if it had not been for lung cancer.
I will be sending you and your wife silent blessings and prayers. Amazing discoveries are happening at Mayo Clinic, you are in the best medical facility in the world! Thank you for sharing. Take care.
Linda
Thanks Linda for your kind words.
We finally got some good news today...the bone marrow biopsy done several weeks ago came back all negative...no leukemia-yeah!
Now if we can get a good alternative therapy from the genomics study we will be elated!
I ordered the book today...hoping it will brighten our lives with happiness!
All the best!
Bill
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1 ReactionBill:
So happy to hear the good news! Every day is a blessing. Happy Thanksgiving and enjoy the book. Just think how happy your doctors are knowing they gave you good news! Keep smiling and I will keep sending silent blessings to you both! Thanks for sharing. I admire brace people!
Hugs to you both 😉
Linda
Hi Linda can you tell more about your post-operation experience? It is so inspirational. I listened your tedtalk and would like to understand more about paced breathing. My dad was diagnosed 60 days ago and 25 days ago he had an operation and his right lung was completely. After operation, he has difficulties but started walking every day. Do you have any recommendation? Many thanks @llwortman