1. < Lung Health

Is this lung cancer? Can’t get answers

Posted by worriedhelp @worriedhelp, Oct 18, 2018

I have been experiencing shortness of breath and a productive cough for over 4 years now, and just started producing blood in my phlegm... I also have had a swolle lymph nodes in my neck for 5 years.

I have had 2 xrays, one ct scan and a breathing test. All came out with clear results .. spoken to countless doctors who started dismissing me after the ct came back. I can’t afford to keep going to the doctors and not getting answers..

I can almost feel where there is irritation in my left lung . I have to take deep breaths and sometimes it doesn’t feel like it’s adequate. And constantly coughing phlegm all day. I started practicing hand stand and when I do them blood comes from my lungs afterwards.. what can I do at this point?? I’m lost and just want these symptoms to go away. I’m 31 year old male never smoked.

Interested in more discussions like this? Go to the Lung Health Support Group.

All_in_1963 | @burrkay | Oct 23, 2018

I have scanned the posts and decided to jump in and offer my support as well-for what it is worth.
As a care giver for my wife KAY (a stage 4 metastatic lung cancer patient) I can only confirm the positive comments from our friend Linda Wortman and others...GET TO MAYO FOR SOME HELP!
OUR HISTORY:
In 2013-2014, my wife, Kay went through a similar dead-end cycle with a pulmonologist, a gastroenterologist and eventually after 15 months of no answers, coupled with an unnecessary nissen fundoplocation surgey, we packed up her medical records and sent them along with a letter to Mayo Clinic in Rochester.
Fortunately, (after a diagnosis within only 48 hours) we found dr. Cassivi who in May, 2015 removed a non small cell adnacarcinoma and 2/3 of her right lung using the VATS procedure that Linda mentioned.
The process at Mayo took only two weeks from the time we sent in Kay’s medical records!
Since we are closer to Jacksonville, Mayo agreed to moving my wife’s care there where we still get our follow-on care.
Since we are six hours from Jacksonville, Mayo’s oncologist dr. Yanyan Lou (Hematology/Oncology) is partnering with our local oncologist in South Carolina where KAY gets her immunotherapy every three weeks. She has been a stage 4 metastatic lung cancer patient for nearly 3 years now.
We travel annually (or as needed) to Jacksonville for confirmation of Kay’s progress.
IN SUMMARY
We can’t say enough positive comments about our care at Mayo.
One other suggestion...if your dr. Does a biopsy...please ask your dr. If a genomics study of it is warranted. That was our ultimate salvation, since that test disclosed that Kay’s mutation is a HERR2 mutation commonly found in breast cancer patients. From that test, Mayo’s doctors determined the correct therapy for that mutation...which stabilized the growth.
Best of luck! If I can be of service just drop me a note...

REPLY
2 replies
Linda | @llwortman | Oct 23, 2018
In reply to @burrkay "I have scanned the posts and decided to jump in and offer my support as well-for..." + (show)
@burrkay

I have scanned the posts and decided to jump in and offer my support as well-for what it is worth.
As a care giver for my wife KAY (a stage 4 metastatic lung cancer patient) I can only confirm the positive comments from our friend Linda Wortman and others...GET TO MAYO FOR SOME HELP!
OUR HISTORY:
In 2013-2014, my wife, Kay went through a similar dead-end cycle with a pulmonologist, a gastroenterologist and eventually after 15 months of no answers, coupled with an unnecessary nissen fundoplocation surgey, we packed up her medical records and sent them along with a letter to Mayo Clinic in Rochester.
Fortunately, (after a diagnosis within only 48 hours) we found dr. Cassivi who in May, 2015 removed a non small cell adnacarcinoma and 2/3 of her right lung using the VATS procedure that Linda mentioned.
The process at Mayo took only two weeks from the time we sent in Kay’s medical records!
Since we are closer to Jacksonville, Mayo agreed to moving my wife’s care there where we still get our follow-on care.
Since we are six hours from Jacksonville, Mayo’s oncologist dr. Yanyan Lou (Hematology/Oncology) is partnering with our local oncologist in South Carolina where KAY gets her immunotherapy every three weeks. She has been a stage 4 metastatic lung cancer patient for nearly 3 years now.
We travel annually (or as needed) to Jacksonville for confirmation of Kay’s progress.
IN SUMMARY
We can’t say enough positive comments about our care at Mayo.
One other suggestion...if your dr. Does a biopsy...please ask your dr. If a genomics study of it is warranted. That was our ultimate salvation, since that test disclosed that Kay’s mutation is a HERR2 mutation commonly found in breast cancer patients. From that test, Mayo’s doctors determined the correct therapy for that mutation...which stabilized the growth.
Best of luck! If I can be of service just drop me a note...

Jump to this post

Bravo to my dear dear friend KAY who is a true lung cancer hero! And Bravo to Bill, KAYs great supporter of lung cancer patients everywhere!
Bless you both! Happy to hear from you and thank you for your Connect comments. And Bravo to our amazing Mayo Clinic teams who save lungs & lives!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 23, 2018
In reply to @burrkay "I have scanned the posts and decided to jump in and offer my support as well-for..." + (show)
@burrkay

I have scanned the posts and decided to jump in and offer my support as well-for what it is worth.
As a care giver for my wife KAY (a stage 4 metastatic lung cancer patient) I can only confirm the positive comments from our friend Linda Wortman and others...GET TO MAYO FOR SOME HELP!
OUR HISTORY:
In 2013-2014, my wife, Kay went through a similar dead-end cycle with a pulmonologist, a gastroenterologist and eventually after 15 months of no answers, coupled with an unnecessary nissen fundoplocation surgey, we packed up her medical records and sent them along with a letter to Mayo Clinic in Rochester.
Fortunately, (after a diagnosis within only 48 hours) we found dr. Cassivi who in May, 2015 removed a non small cell adnacarcinoma and 2/3 of her right lung using the VATS procedure that Linda mentioned.
The process at Mayo took only two weeks from the time we sent in Kay’s medical records!
Since we are closer to Jacksonville, Mayo agreed to moving my wife’s care there where we still get our follow-on care.
Since we are six hours from Jacksonville, Mayo’s oncologist dr. Yanyan Lou (Hematology/Oncology) is partnering with our local oncologist in South Carolina where KAY gets her immunotherapy every three weeks. She has been a stage 4 metastatic lung cancer patient for nearly 3 years now.
We travel annually (or as needed) to Jacksonville for confirmation of Kay’s progress.
IN SUMMARY
We can’t say enough positive comments about our care at Mayo.
One other suggestion...if your dr. Does a biopsy...please ask your dr. If a genomics study of it is warranted. That was our ultimate salvation, since that test disclosed that Kay’s mutation is a HERR2 mutation commonly found in breast cancer patients. From that test, Mayo’s doctors determined the correct therapy for that mutation...which stabilized the growth.
Best of luck! If I can be of service just drop me a note...

Jump to this post

What a great story, @burrkay, about your experiences at Mayo! Thank you so much for sharing that. I pray that your wife continues to do well. Best wishes to you both!

REPLY
View MoreView Less
Please sign in or register to post a reply.