Connect
← Return to Mysterious shortness of breath: What has helped you?
Discussion
Mysterious shortness of breath: What has helped you?
Lung Health | Last Active: May 27 5:58pm | Replies (3353)Comment receiving replies
@burrkay- Good morning. I have NSCLC and it actually isn't very difficult to diagnose. 84% of all lung cancers are NSCLC. CT scans and xrays and biopsies can quickly confirm the type of cancer. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059295/
I understand that your wife has lung cancer and that you are her caretaker. She's very lucky.
There has been a ton of new information regarding lung cancer, new treatments and diagnostic tool since my first cancer in 1997. I've had 4 lung cancers with 6 different nodules. My first one was a fast growing tumor and the rest have been very slow growing The name of my sub-type has had it's name changed 4 times since then.
How is your wife doing?
Replies to "@burrkay- Good morning. I have NSCLC and it actually isn't very difficult to diagnose. 84% of..."
Connect
Hi @merpreb Merry - thanks for asking....my wife is doing fine for the most part...on a targeted therapy with infusions every 3 weeks, following Mayo doctors determining (via molecular study) that her cancer is in the lung, but is indeed an Erbb2 mutation...HER2...a breast cancer mutation in the lung! Even Mayo dropped the ball and didn’t check the biopsies from her surgery close enough. So after surgery...then chemo, they put her on immunotherapy using Opdivo...only after her cancer continued to grow, did they do the study and made the determination of an Erbb2 mutation!!
Her’s was indeed hard to diagnose...it took nearly 2 years of seeing the perpetual string of local pulmonologist, gastroenterologist, bariatric surgery...and finally being sent to a thoracic surgeon who wanted to remove a lobe of her lung with open chest surgery! Even then, he was not convinced she had lung cancer, but the lobe was not functioning and needed to be removed! Hah!
That’s when we finally packed our bags and went to Rochester.
It all started in 2013 with several bouts of pneumonia, 4 bronchoscope procedures by a pulmonologist...then after more pneumonia they tested her for GERD which the pulmonologist seemed convinced from the beginning was the problem. They then convinced us it was GERD, even though the tests showed inconclusive...and performed a Nissan Fundoplication on her!???!
Sounds difficult to diagnose to me!
Mayo finally in May, 2016 (after receiving all her records), scans, biopsies, etc determined the growth in her lung was an adenocarcinoma with lepedic growth (slow and hard to detect). A VATS Surgery procedure removed a 12 cm well differentiated adenocarcinoma and a 5 cm adenocarcinoma...not a nice way to spend Mother’s Day!
Thanks again for your concern Merry, but I respectfully disagree - NSCLC IS INDEED OFTEN DIFFICULT TO DIAGNOSE!
If you were to access the lung cancer registry you will quickly see from their studies the large % of lung cancers that went undiagnosed with similar difficulty.
Here is a link...https://www.lungcancerregistry.org/