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Where to start ?? Just told I had adenocarcinoma of the lung.


PaulaC

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After a month of waiting and trying to be patient with doctors I finally got some results. Not the outcome I was hoping for but thankfully other than the spot found on my lung I'm healthy. I'm finding that dealing with doctors is testing my patience.  My son sent me this link to help with answers and support.  I know doctors are busy but it been taken me being pushy to get stuff done. 

A little about me I come from a large family with a history of cancer but not me. (Lung, pancreatic and prostate)  I have so many questions that I can't even begin to put them on paper but I wanted to let you know who I was.

I'm a mother of 3, married 37 years and 3 adorable grand babies. I retired in September and about mid October I had a sinus and chest infection which was diagnosed as bronchitis. I have a long history of allergies and bronchitis. After a couple rounds of antibiotics I asked the doctor about flu and pneumonia which was going around our house. Long story short my family doctor did a chest  x-ray and found some suspicious area. My primary doctor was quick to schedule a CT scan and a nodule was found. I was sent to a pulmonary doctor who said my scan and x-ray look like cancer then sent me home saying he was going to schedule a lung biopsy ..... this took 2 weeks and me going straight to the hospital scheduling  department to get it set up. I know I frustrated the doctors assistance but in my mind I was freaking out... you tell me I have a tumor the size of a golf ball in my lung and no urgency to get test done. I had the biopsy done and waited a week for the results . Again, Monday I called the doctors nurse for a response.... the doctor called me back on Tuesday with the results and now I'm scheduled for a PET scan. I'm praying the cancer has not spread and that I can stop freaking out. 

I know it's a long road and I'm glad I have you guys here for support. I lost my sister in 2011 to lung cancer and even though I've got this her situation is in the back of my mind.

Thanks for listening.

Paula

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Hi  Paula, 

I'm glad you found us. Being diagnosed with lung cancer is certainly disorienting! And dealing with the medical system can be incredibly frustrating. This forum is a good place to find information and support. If you want some basics you could start with Lung Cancer 101 on the Lungevity main website. Here's the link: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101.  If you have questions, post them here and someone will probably come up with an answer, or several answers. 

I have a question for you. Did your biopsy include molecular testing (also called tumor genetics)? A regular biopsy would tell you a basic diagnosis, like adenocarcinoma. The molecular testing shows whether you have specific mutations driving your tumor, like ALK, EFGR or KRAS.  Much of the latest treatment depends on what those mutations are, so it's important to have that information.

Keep being pushy! Whatever you need to do to get what you need. And keep posting here and let us know what we can do to support you.

Bridget O

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Thank you for your encouragement. 

I don’t see anything that shows molecular testing. It says something about immunhistchemical stains for napsin A and TTF-1 are both strongly positive. I have no idea what that is. Also the stains for CK 5/6 and p40are negative.  This makes no since to me but maybe you’ll understand it.  

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Hi  Paula, 

I don't know what those are, but they don't look like molecular/genetic results. I suggest you look at this: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer and look at Classification by Biomarker Profile, which is yet ANOTHER name for molecular testing/tumor genetics. It is all very confusing. Often the pathologists who to the basic typing--"Classification by Histology" are not equipped to do the tumor genetics and have to send it out somewhere else, and it can take longer. If they haven't done this testing on your biopsy sample, I suggest that you ask for it. If you  need any treatment beyond surgery, the additional info is essential for treatment planning. 

Bridget O

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Thanks for the feedback. I wonder do I just call the dr back that ordered the biopsy?

i read the link and remembered reading it but at the time it went over my head. I noted it so I can question the dr about it. I would hope that the pathologist sent the samples for more testing. 

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Hi my name is Mary, I have no idea if I a m doing this right.i was diagnosed with adenocarcinoma in 2015 .....they removed a lobe of my right lung and told I didn’t needed any chemo. 6 months later it was back.....it took me 4 months to get all tests and finally treatment. Which included radiation and chemo.......here we go again 6 months later little Esther ( is what I call it ) is back and growing. Saw Drs yesterday and of course they give me all the bull lucky..... I am tired

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Mary, I’m so new to this I really won’t be very much help. stay strong.   I pray they take care of you this time around and maybe be a little more aggressive with your treatment. 

Paula

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Paula, I think calling the doctor who ordered the biopsy and asking if it's been sent out for the biomarker/molecular/tumor genetic testing is a good idea, and if it hasn't been sent, asking if they will do it. If you reread the  Biomarker section on Lung Cancer 101 and you have questions, somebody on this forum may be able to answer them. Many of us are dealing with those issues.

Mary, I'm glad you found us and sorry to hear your cancer is back again. I also had a right lobectomy for adenocarcinoma and no addtional treatment. I just recently had my one year CT scan and am fortunate to have no evidence of disease. I can understand how you would be tired. Please let us know how we can support

Hand in there.

Bridget O

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Welcome here Paula.

From my reading, the stains you discussed (napsin A and TTF-1) are used to assist the pathologist in classifying the type of cancer you have.  The biopsy sample is washed with chemicals and produces a stain that shows as a visual indicator under the microscope.  These two stains are strongly suggestive of adenocarcinoma, the type of non small lung cancer you may have. Here is one of the pathology references I checked, and the p40- (p40 negative) result strongly correlates with adenocarcinoma.

Assuming you have adenocarcinoma, Bridget's advice to seek biomarker testing is spot on.  Adenocarcinoma, a subtype of non small lung cancer (NSCLC), is very responsive to new chemotherapy drugs collectively called Targeted Therapy.  And, while there is no good news about a lung cancer diagnosis, having adenocarcinoma opens up the possibility for very effective treatment should you need chemotherapy.  Normally, the biopsy material is sent to a laboratory for additional testing to find these biomarkers and results could take 3 or more weeks.

Your next step, a PET scan will determine if your cancer can be treated surgically.  So I join with you in praying we are dealing with a single tumor.  The PET should give us that information.

It is good to learn your primary care physician was responsive.  Mine was very engaged in all facets of my lung cancer treatment and I found that level of attention to be very valuable.  My GP still gets all my scan reports, and he goes over the results with me when I see him for a minor illness. My GP also tweaked my oncologist and thoracic surgeon on several occasions to drive diagnostics and answers.  You might call on your GP practice when you feel the medical system is not responding.  In particular, I found my GP's practice nurse to be very helpful in getting information and untangling scheduling conflicts.

Each time I read about someone newly diagnosed, I recall the emotional roller coaster I was on during my diagnostic journey. Time seemed to stop, doctors had uncertain opinions, there remained may unknowns, and I felt like a cast member in Mel Brook's movie High Anxiety.  So I've been there, but I also just celebrated my fourteenth year of life after lung cancer diagnosis.  That milestone suggests that if I can live, so can you.

Stay the course.

Tom

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1 hour ago, Tom Galli said:

Welcome here Paula.

From my reading, the stains you discussed (napsin A and TTF-1) are used to assist the pathologist in classifying the type of cancer you have.  The biopsy sample is washed with chemicals and produces a stain that shows as a visual indicator under the microscope.  These two stains are strongly suggestive of adenocarcinoma, the type of non small lung cancer you may have. Here is one of the pathology references I checked, and the p40- (p40 negative) result strongly correlates with adenocarcinoma.

Assuming you have adenocarcinoma, Bridget's advice to seek biomarker testing is spot on.  Adenocarcinoma, a subtype of non small lung cancer (NSCLC), is very responsive to new chemotherapy drugs collectively called Targeted Therapy.  And, while there is no good news about a lung cancer diagnosis, having adenocarcinoma opens up the possibility for very effective treatment should you need chemotherapy.  Normally, the biopsy material is sent to a laboratory for additional testing to find these biomarkers and results could take 3 or more weeks.

Your next step, a PET scan will determine if your cancer can be treated surgically.  So I join with you in praying we are dealing with a single tumor.  The PET should give us that information.

It is good to learn your primary care physician was responsive.  Mine was very engaged in all facets of my lung cancer treatment and I found that level of attention to be very valuable.  My GP still gets all my scan reports, and he goes over the results with me when I see him for a minor illness. My GP also tweaked my oncologist and thoracic surgeon on several occasions to drive diagnostics and answers.  You might call on your GP practice when you feel the medical system is not responding.  In particular, I found my GP's practice nurse to be very helpful in getting information and untangling scheduling conflicts.

Each time I read about someone newly diagnosed, I recall the emotional roller coaster I was on during my diagnostic journey. Time seemed to stop, doctors had uncertain opinions, there remained may unknowns, and I felt like a cast member in Mel Brook's movie High Anxiety.  So I've been there, but I also just celebrated my fourteenth year of life after lung cancer diagnosis.  That milestone suggests that if I can live, so can you.

Stay the course.

Tom

Hi Tom Excellent comments and particular,   Your next step, a PET scan will determine if your cancer can be treated surgically.  So I join with you in praying we are dealing with a single tumor.  The PET should give us that information.

Bob

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Tom, I really want to thank you for finding out what nasin A and TTF-1 testing is. I’m so overwhelmed with trying to read everything I feel like I’m in another world. 

I think I needed to read about how others handled and are handling their cancer diagnosis’s.

I am thankful that my son found this forum.

Thank you for the prayers. I know they help. 

Paula

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Hi, Paula,

Welcome to LCSC. I'm glad that you've already connected with Tom and Bridget. Please continue to post updates and feel free to ask questions. We are here to help.

I would also be happy to share more information about LUNGevity's additonal support and education resources if you'd like. Please don't hesitate to reach out.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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On 2/15/2018 at 4:20 PM, Paula Lyb said:

After a month of waiting and trying to be patient with doctors I finally got some results. Not the outcome I was hoping for but thankfully other than the spot found on my lung I'm healthy. I'm finding that dealing with doctors is testing my patience.  My son sent me this link to help with answers and support.  I know doctors are busy but it been taken me being pushy to get stuff done. 

A little about me I come from a large family with a history of cancer but not me. (Lung, pancreatic and prostate)  I have so many questions that I can't even begin to put them on paper but I wanted to let you know who I was.

I'm a mother of 3, married 37 years and 3 adorable grand babies. I retired in September and about mid October I had a sinus and chest infection which was diagnosed as bronchitis. I have a long history of allergies and bronchitis. After a couple rounds of antibiotics I asked the doctor about flu and pneumonia which was going around our house. Long story short my family doctor did a chest  x-ray and found some suspicious area. My primary doctor was quick to schedule a CT scan and a nodule was found. I was sent to a pulmonary doctor who said my scan and x-ray look like cancer then sent me home saying he was going to schedule a lung biopsy ..... this took 2 weeks and me going straight to the hospital scheduling  department to get it set up. I know I frustrated the doctors assistance but in my mind I was freaking out... you tell me I have a tumor the size of a golf ball in my lung and no urgency to get test done. I had the biopsy done and waited a week for the results . Again, Monday I called the doctors nurse for a response.... the doctor called me back on Tuesday with the results and now I'm scheduled for a PET scan. I'm praying the cancer has not spread and that I can stop freaking out. 

I know it's a long road and I'm glad I have you guys here for support. I lost my sister in 2011 to lung cancer and even though I've got this her situation is in the back of my mind.

Thanks for listening.

Paula

So sorry about the loss of your sister.  I was just diagnosed by xray and CT scan.  Monday have pet scan Tuesday biopsy.  Very grateful my doc is moving fast on this.  She also talks to me personally on the phone and encouratages me to call about anything.  I also have a huge family history.  I hope the best for your treatment.  I also hope you are helped much by this for.  I know I am not crying anymore.  Thanks.

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Thank you Beth, the loss of my sister was and is heartbreaking. 

 Thank goodness you have such a caring and supportive doctor. I’m Sending positive vibes and prayers for a great outcome on your test Monday and Tuesday. 

Paula

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Beth,

Welcome here.

Unfortunately, all of us know how you feel.  When I was diagnosed in 2004, there was only hope.  Now there are so many more effective treatments to arrest your lung cancer.  Look around on our forum and notice how many long tenured survivors we have. This is a good place to ask questions and when you feel comfortable, feel free to fire away.  Here is an essay that may ease your path through diagnostics and treatment.

Stay the course.

Tom

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