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worriedhelp
@worriedhelp

Posts: 5
Joined: Oct 18, 2018

Is this lung cancer? Can’t get answers

Posted by @worriedhelp, Thu, Oct 18 8:59am

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.

REPLY

Hello @worriedhelp

I can understand that you are worried! Most of us would be worried too if we had those types of symptoms. As you probably know, at Mayo Connect we cannot diagnose anyone's health problems. We can, however, offer support and information from our own personal experiences.

With that in mind, I'm going to invite Terri, @windwalker, into this conversation. Maybe she can offer you some ideas to help you.
Terri is involved in a discussion group here on Connect regarding lung infections, MAC, mycobacteria (NTM) or bronchiectasis.

In the meantime here is the link to those discussions, https://connect.mayoclinic.org/group/mac-bronchiectasis/

I would also like to invite, Linda, @llwortman, who was a non-smoker, who developed lung cancer. She might also have some thoughts for you. Here is a link to a discussion group specifically related to lung cancer, https://connect.mayoclinic.org/group/lung-cancer/

You might take a look at these and feel free to post any questions there.

Thank you Teresa . I will browse those discussions. Any advice from someone who has some experience and knowledge would be greatly appreciated . Healthcare is costing me a lot of money and I lose my insurance at the end of October..

Hi @worriedhelp, I moved your discussion to the Lung Health group: https://connect.mayoclinic.org/group/lung-conditions/
It is so easy to leap to negative thoughts and think "cancer". The symptoms you described are common to many conditions. I realize that finances are becoming a problem, but only a medical professional can diagnose you.

Have you seen a pulmonary specialist? If not, I strongly recommend that you gather your medical records, test results as well as details of the symptoms you are experiencing, when you experience them (time of day, doing what activity) and see a specialist. Can you do that before the end of October?

Hello Coleen. I have seen a pulmonary specialist. He had no answers for me my last visit. He ordered the ct scan. Once the results came by he pretty much started dismissing me and tryed sending me to an allergy doctor, which made no sense , and he couldn’t explain my cough or shortness of breath..

I’m pretty hesitant to go back to this group and waste my money to have them dismiss me again, it got really frustrating to have a condition and not get taken seriously.. I don’t really know where to go from here

I am happy you found Connect! I am
a 10 year 10 month lung cancer survivor…
only because Mayo Clinic Doctors listed
to my story- about my two year chocking cough,
shoulder pain, phlegm, and too often an inability to take a deep breath!

For two years local doctors gave me Zpac…and said, “My cough was psychological!” I never smoked so they would not listen!

I encourage you…no I beg you to investigate the world of Mayo Clinic thorasic department! They saved my life with state of the art VATS surgery. I soon learned anyone can get lung cancer. Shocked to my core at the time! I now am passionate about
Saving Lungs & Lives.

We must Advocate for our own lives! You are young & strong! Do not wait!

I now say, Lung Cancer became my blessing. Mayo Clinic treated me “the whole patient”. I now have a great quality of life. I now am a runner…I never ran before kung cancer!

Dr Stephen Cassivi can be reached thru the Mayo Clinic Thorasic Dept. please call (507)284-2511 and ask Kristin in Thorasics for an appointment!

Lung cancer is silent! Do not be afraid to take your body to a research center that can properly diagnose and properly treat You! There is only one You! Let’s stay connected!

@hopeful33250

Hello @worriedhelp

I can understand that you are worried! Most of us would be worried too if we had those types of symptoms. As you probably know, at Mayo Connect we cannot diagnose anyone's health problems. We can, however, offer support and information from our own personal experiences.

With that in mind, I'm going to invite Terri, @windwalker, into this conversation. Maybe she can offer you some ideas to help you.
Terri is involved in a discussion group here on Connect regarding lung infections, MAC, mycobacteria (NTM) or bronchiectasis.

In the meantime here is the link to those discussions, https://connect.mayoclinic.org/group/mac-bronchiectasis/

I would also like to invite, Linda, @llwortman, who was a non-smoker, who developed lung cancer. She might also have some thoughts for you. Here is a link to a discussion group specifically related to lung cancer, https://connect.mayoclinic.org/group/lung-cancer/

You might take a look at these and feel free to post any questions there.

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Thank you fir your referral. I’m back on line with wifi!

Thank you Linda for connecting . Which state is Dr Cassivi located ? I am 2 hours from the Jacksonville Mayo Clinic.

My symptoms sounds identical to yours! I am constantly having phlegm all day everyday … hard to catch a deep breath also. How did the eventually find the lung cancer? Having a clear ct scan no one wants to listen to me…

@worriedhelp

Thank you Linda for connecting . Which state is Dr Cassivi located ? I am 2 hours from the Jacksonville Mayo Clinic.

My symptoms sounds identical to yours! I am constantly having phlegm all day everyday … hard to catch a deep breath also. How did the eventually find the lung cancer? Having a clear ct scan no one wants to listen to me…

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Hi worriedhelp:
Dr Stephen trained Dr Mathew Thomas in thorasic surgery who is in Jacksonville FL. He is a remarkable, kind thorasic
doctor. He works with Dr M Johnson who is a great pulmonologist at Mayo Clinic Jacksonville as well.
Also at Mayo Jacksonville is an amazing lung cancer researcher Dr Dev Mukhopadhyay. The teamwork affords patients the most remarkable quality of care ! This year I was thrilled to learn there are many therapies available that were not available in 2008 when I was diagnosed!

When you call each office directly their secretaries will most likely give you an appointment & help you get a patient ID number.
You can also do this online, but calling directly may be faster?

So glad you asked. I hope this helps you. Let’s stay Connected.

@llwortman

Thank you fir your referral. I’m back on line with wifi!

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I'm so glad you are available, Linda. You are such a great resource!

So I’m currently looking into getting a sputum test done , can you recommend getting it? Also I want to try and have my ct scan re evaluated by a different radiologist …

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…

@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!

@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!

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