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DiscussionLiving with lung cancer - Introduce yourself & come say hi
Lung Cancer | Last Active: Sep 25 12:58pm | Replies (1044)Comment receiving replies
Replies to "I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As..."
Thanks so much for your thoughtful and thorough response. I greatly appreciate your taking the time to share your thoughts and information with me. Best wishes to you and your wife.
Hi Wallyk:
I have been reading about your journey with lung cancer. I am a 9 year 6 month survivor of lung cancer (but who's counting) ?Congratulations!, on your 16 year survival with breast cancer. I an hoping that 'my wish in life is, that very soon, lung cancer patients will have the success stories that breast, prostate an colon caner survivors do. Think researchers are very close to making my wish come true.
You asked about the pain? Looking back, I have asked myself if the "Shock of diagnosis" adds to the pain? Also, I am someone who is
allergic to most every pain killer known to human beings. With that said, in 3-5 days post surgery, I was peddling a bike in St Francis 5 - rehab center. I walked heal toe with all of the contraptions attached to my body.I know now there are new contraptions.
I realized someone had to make the staff laugh once in a while...so I threw paper items into the waste baske when a nurse or doctor waled into my room (which was often;-).... and said, 2 points! I also had pulmonary lung function of 110% when I walked into the hospital just 48 hours after my diagnosis. I did have the entire upper left lung lobe, and a wedge of my lower left lung lobe removed with VATs procedure.
Mayo Clinic Rochester is the best in the world! My thorasic surgeon is world famous and he has promised to follow me until death do we part. (Ha, No pun intended!) I too was properly diagnosed by my Executive Medicine, wonderful, doctor, who also continues to follow my every medical move. I am so grateful for the teams that saved my life, my husband and I started a non profit to raise lung cancer & lung health awareness...because I quickly learned that lung cancer researcher suffers the same unfair stigma that I have been challenged with ...and the kicker is, I neVer smoked!
I have referred a dozen or more patients to Mayo with lung cancer, they all have had a great quality of life. There is a couple we know and both smoked, we literally drug them to Mayo Thorasic department, they had wedge surgery, and didn't miss a beat. They too still return to Mayo Clinic for follow up. Did I tell you we drive one hour, fly two hours and then drive 90 minutes to the DMC...and it is well worth our time and our money.
I would like to suggest that you google, Dr Amit Sood and watch his TED Talk about resiliency, happiness and taking time every day...or several times a day "just for you"...It was after I had returned home to 6,000 feet elevation, that I was recommended to be in his 'Paced Breathing Research Study'. This was a HUGE part of my ability to accept my lung cancer, learn how to live and breath again, and totally change my life. No one knows what's around the corner. But I practice his teachings daily and nightly and in the middle of the night if I cannot sleep. It helped the pain in my brain, heart and lungs and my happiness as a survivor of lung cancer.
Now almost 10 years later, you will do great! You are in the best place in the world with a lung cancer diagnosis. So, rest up, eat well, be well hydrated, think positive, think more positive and tell your brain and body to heal this challenge and go live. If you conquered 16 years...heck, you are my hero!
So please, let's stay connected. I'm sending you silent blessings and I will be thinking of you. Oh, with most of my left lung missing
I run 10K race's, I mountain bike about 9 miles a day, and I am my husbands crew chief, when he races his 35 FORD with a flat head engine that he souped up and loves going 150-200 mph!!! My loving husband, loves telling people, she's in better shape now than before lung cancer.
I tell people, Lung Cancer became my blessing!
You deserve a cyber hug!
Linda
THANK YOU!! You definitely provided me with the best upper I've had since my diagnosis. Your story needs to be told WIDELY - not just though Mayo Clinic Connect.
@llwortman Linda, if you don't mind my asking; what stage and kind was your
lung cancer? Thanks!
@wallyk Oh
she does Wally. She has a video on YOUTUBE, and not sure if on Ted Talks. Have
to ask her. Linda is a big time advocate. - Terri M.
Hi wallyk-
Consider yourself fortunate that you had gone through the executive health program! Mayo has the best medical staff in the world, in my opinion. We consider them FAMILY!!
My wife was not so lucky! We had followed the recommendation of a local Pulmonology doctor nearby for 15 months or more, before we sought help from Mayo. We credit our family with encouraging us to make the trip to Rochester, some 1100 miles away!
Although she is now stage 4, she is alive and back to enjoying life today...thanks to the excellent care at Mayo!
My wife had two lobes in her right lung removed at Mayo, Rochester in May, 2015 using the VATS procedure.
As for pain, yes she struggled with it for a few days, but that's what pain pills are for-hah. She had the surgery on a Friday and by the following Tuesday she was on her way home in South Carolina.
The important thing is that the doctors at Mayo are very diligent to check the surrounding lymph nodes to see that the Cancer has not invaded other areas (metastatic cancer). In my wife's case it remained undetected, but a year later had in fact metastasized to the left lung. She was fortunate to have signed up for chemo treatments, which later qualified her for new therapies through clinical trials.
Although Mayo had done the usual studies of the biopsies, they discovered 18 months later, through a molecular study that her cancer, although in the lungs, was from the HER2 mutation; which is normally found in breast cancer patients. Mayo then enrolled her in a clinical trial so she is now getting an infusion of a doublet (herceptin/perjeta) every three weeks. That seems to be working as the tumors are now indeed shrinking...
Bottom line be prepared for some pain, but know that it will be over in a few days...just like any other surgery. However, be sure they order a molecular study right away, so you don't have to do another biopsy later - that was especially uncomfortable for my wife.
Best of luck with your journey...stay brave and positive...be sure you have a good support group through your church, family and neighbors...they will be an important key to your success!