About

First Name
William

State/Province
SC

Posts (97)

6 days ago · Mysterious shortness of breath in Lung Health

@jillian22 – we are here for you!
Let us know how we can help.

Fri, May 10 6:09am · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

@wally1940 – I should have included this link in my earlier post…a great web site to try to get answers!

https://www.cancer.org/cancer/lung-cancer.html

Thu, May 9 7:13pm · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

@wally1940 – Wow…So sorry for your diagnosis!
I am not a doctor and not a cancer patient…but I have been a caregiver for my wife who had two adenocarcinomas removed surgially in 2015 (two lobes)…Non Small Cell Lung Cancer.
She is doing very well today, but not until going through some unusual circumstances.
Some of the key things I think are important to unerstand:
1) Is this Non Small Cell Lung Caner or Small Cell?
2) What are the size of the tumors
3) Are you a candidate for surgery?
4) If so, is a VATS procedure possible? Much quicker recovery than open chest…
If not, what type of treatment is available…radiation, chemo, etc?
5) Have you had Biopsies? If so, what type of mutation is it?
6) Is a Molecular study in order to identify exactly what mutation it is?
In my wife's case, they did not do this until after she did not respond to the typical NSCLC immunotherapy (Opdivo) and her cancer advanced from stage IIIa to stage IV. They then did the Molecular study and determined her's in a Erbb2 mutation.
7) Where is the best Cancer Center? Not necessarily the nearest, but the best!
Best of luck! Keep asking questions!!!

Tue, May 7 10:38am · Mysterious shortness of breath in Lung Health

Thanks Merry…yes, we had several in our local medical community who dropped the ball…however, my fault for not paying better attention.
My wife is doing very well…back to Mayo for a consult end of May. My concern is with the potential side effects to all these infusions…28 months now (every 3 weeks)!
I must say, the Mayo oncology docs (and staff) have been superb! We are blessed to have gotten to Rochester for her initial care…and now the care in Jacksonville.
How are you doing? Remarkable that you have had four bouts with lung cancer! Are you still getting treatments?

Mon, May 6 7:00pm · Mysterious shortness of breath in Lung Health

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/

Sun, May 5 5:53pm · Mysterious shortness of breath in Lung Health

@ssgaurav2000 hello and sorry to hear about your issues…I am late coming into this, but a couple of things that you mention prompt me to agree that you should se a gastroenterologist. One symptom…that of regurgitated food along with the belching might suggest a hiatal hernia. I have one, complicated by Barrett’s esophaguse. I had similar symptoms as those you describe, and ultimately an endoscopy found the problem. Very dangerous to ignore…so get to a gastroenterologist ASAP would be my suggestion. If not managed Barrettes can develop into esophageal cancer!
Again, only a gastroenterologist can determine if this is the problem.
I also would not be so quick to conclude the belching, etc. is not lung related. Non small cell lung cancer for example is very difficult to diagnose, simply because it can be a lepidic adnecar and often won’t light up on the scans!

Sun, May 5 2:09pm · Mysterious shortness of breath in Lung Health

@ssgaurav2000 hello and sorry to hear about your issues…I am late coming into this, but a couple of things that you mention prompt me to agree that you should see a gastroenterologist.
One symptom…that of regurgitated food along with the belching, might suggest a hiatal hernia. I have one, complicated by Barrett’s esophagus. I had similar symptoms as those you describe, and ultimately an endoscopy at Mayo found the problem. Very dangerous to ignore…so get to a gastroenterologist ASAP would be my suggestion. If not managed, Barrettes can develop into esophageal cancer!
Again, only a gastroenterologist can determine if this is the problem.
I also would not be so quick to conclude that the belching, etc. is not lung related. Non small cell lung cancer for example can manifest itself in such a way that it can be very difficult to diagnose, especially if ones issues are being treated by the wrong disciplines. My wife found that out, having had the belching and GERD symptoms similar to what you describe…before finally being diagnosed with an adenocarcinoma by Mayo.
My suggestion is get to a clinic such as Mayo. Don’t get caught up in the perpetual circle of medical care going weeks between seeing the various string of doctors!