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Hi,

    I really got blind sided by this. My right lung started hurting very badly for 2 days until I ended up in my pulmanary doctors office. He immediately sent me to the ER fearing heart attack or embolism. I ended up getting admitted with a mass on my right lung and pneumonia. I received a negative needle biopsy. But I needed a Pet scan. The Pet scan came back positive with a lymphnode lit up. Next step is to get a thoracic surgeon get a biopsy of the lymphnode and mass. But my oncologist read the Pet scan and sort of prepared my wife and I for stage 3 cancer because of the size of the mass and also the lymphnode. I have been coping pretty well until today. Hope I can meet some friends here to help me through this 🙏

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Hi Irwin-

Welcome.  Yes, blindsided is a good way to put this situation. You feel like a freight train hits you out of nowhere. The most important thing for you to know is you are not alone.  Many of us here in the forum received this advanced stage diagnosis with no warning. LC often has no symptoms until the diagnosis. I was also sent to the ER for a suspected pulmonary embolism after a summer of failed allergy meds, antibiotics & steroids last year. 

You’re about to go through the diagnostic process which seems to go on forever- you will soon be scheduled for a Brain MRI and then the molecular study to determine what type of cancer you have in order to determine the best course of treatment. The waiting is hard and necessary to get the treatment plan right the first time. 

I tell everyone during this phase that its okay to feel this way. Give yourself permission to cry- let out all those roller coaster emotions.  

The second thing we would collectively say is stay away from Dr Google.  There have been more treatment advances in the last 3 years than in the last 30.  There are many long term survivors and growing each year. LC is now treated as a chronic condition, like diabetes or heart disease.  

Empower yourself by asking us lots of questions, knowledge will put you back in the drivers seat.  Do not be afraid to get a second opinion once the diagnostic process is completed.  Some of us did, some didn’t depending on the access we have to major academic settings ( Like Moffit in FL). 

There are brighter days ahead, it does take a while to get there, however you will.  Be strong in your faith.  

Let us know how we can support you.  We’ve all been there in this special club that no one ever thought we would join. 

We’re your new family here to help you pick up the pieces as you settle into the new normal. 

Hold onto your hope! 

Michelle

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Oh you are so right about the Dr Google thing. Especially when I was trained to diagnose in the hospital path lab in hematology..

     The only question I have is my oncologist said that the pathologist would be able to tell us (my wife and I) what kind of cancer I have from the bronch wash, brush and snippet tissue. 

   There is only one lymph node that lit up in the PET scan and my oncologist gave me some hope that it might be reactive because of the viral pneumonia.

   But again the size of the mass would make it stage 3. I am hopeful that it is non small cell because I got hints now that I know about the mass that it was causing problems in the last 3 months of last year. I developed 2 coughs from colds that were not normal. They were not upper respiratory infections. They were much lower. So I have to believe that the mass was there at that time.

  Also being in pathology but not in histology I am almost certain that the pathologist will be able to tell from looking at the specimen under the microscope whether it is small or non cell. 

   I am so grateful that you answered my post. Being alone and new to this is a horrible feeling. 

   I do have a question about treatment. My Medicare advantage plan says that it will pay 80% of chemotherapy. It doesn't say which medications are covered. It only says that it covers the ones in Medicare part B. I'm concerned whether I can get these new medications. 

    Do you know anything about this.

    Again, I am so grateful for your reply. My eyes want to tear up.

  Oh. One more quick question what is involved in getting a second opinion. Do they do new CT scans, PET scans, and biopsies? Otherwise they will just be reading the same reports from the radiologists?

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Irwin, hello welcome.  Glad you found us.  

We have some in common.  I called for an appointment . I thought I had an orthopedic problem.  I had pain in my right arm and chest.

They said , you are 50 years old with chest pain ?  Come to the hospital now, you could be having a heart attack !

I went all labs and EKG was normal.  So they did a chest x ray and found a tumor larger than a golf ball in the upper right apex of my lung

pressing on nerves going down my arm and also onto my chest wall.  Got an appointment right away for biopsy, and with Onocologist.

Stage 3B lung cancer.  Luckily I got treatment , chemo  and radiation started quickly with good results so later I was able to have that lobe of lung

removed and as planned more chemo after.  I was diagnosed12/3/97 .  I am still here and cancer free..

Please keep us posted on how things are going and feel free to ask questions.

 

Donna G

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Wow. You just being here gives me hope. I went to learn about my problems at the American Lung Assoc and their info was pretty bleak. You shouldn't be here according to them. You should have been gone a long long time ago.

    This may sound strange but in more than one way, thanks for being here LoL

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Irwin-

I have a commercial health Insurance Plan (I’m 51) so I’m not very familiar with the MA plans.  

What I can tell you is the hospital pharmacy team will do everything they can to ensure the proposed treatment plan (chemo, immunotherapy or targeted therapy) doesn’t break the bank.  One of my Medicare LC friends got a grant for Keytruda so there was zero out of pocket. 

You’ll be meeting with a dizzying number of people in the next few weeks, the finance team will be very important.  They have all this stuff down cold.  

Take this one step at a time, it’s so easy to get overwhelmed at this point.  Manage what you need to day by day or hour by hour if necessary. Try not to get ahead of yourself by letting the worry monkeys take over.  You can do this!

Michelle

 

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Wow. You just being here gives me hope. I went to learn about my problems at the American Lung Assoc and their info was pretty bleak. You shouldn't be here according to them. You should have been gone a long long time ago.

    This may sound strange but in more than one way, thanks for being here LoL

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6 minutes ago, Rower Michelle said:

Irwin-

I have a commercial health Insurance Plan (I’m 51) so I’m not very familiar with the MA plans.  

What I can tell you is the hospital pharmacy team will do everything they can to ensure the proposed treatment plan (chemo, immunotherapy or targeted therapy) doesn’t break the bank.  One of my Medicare LC friends got a grant for Keytruda so there was zero out of pocket. 

You’ll be meeting with a dizzying number of people in the next few weeks, the finance team will be very important.  They have all this stuff down cold.  

Take this one step at a time, it’s so easy to get overwhelmed at this point.  Manage what you need to day by day or hour by hour if necessary. Try not to get ahead of yourself by letting the worry monkeys take over.  You can do this!

Michelle

 

You are right. I didn't even know about the financing available. 

   Thanks for showing me down. I was taking it day by day until the ALA freaked me out with their statistics.

    Also I live in Florida and someone already mentioned that clinic that begins with M. I know it is near Tampa. 

     So I am going to slow it down. I really like your advice. If I start posting in the main forum will you see my posts?

    

 

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Hi Irwin.  You’ve gotten some great advice from Michelle and an excellent dose of hope from Donna.  The time between first discovering something out of the ordinary on your lung and an actual diagnosis can be agonizing.  The uncertainty of what’s next was difficult for me.  Googling made it worse.  This forum definitely  helped calm my nerves.  I realized there were plenty of people going through what I was or worse.  Their stories and strength provided more help than anything else I found on the Internet.  It’s a tough road but it is one that is unfortunately well travelled by others.  Hang in there.  Once you have a diagnosis and treatment plan there will be an opportunity to get back to living life.  This doesn’t have to be all consuming if you don’t let it. 

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Thank you so much Curt. 

      I was doing so well emotionally until I crashed today after going to the American Lung Assoc. It sucked out most of my hope. 

 I mentioned that I was in hematology. Well 2 of those years were spent working under 2 oncologists in the mid 90's. Those memories haven't been helpful to me either. But my awesome wife reminded me of how long ago that was. 

   I can't tell you how much my nerves have been calmed here. Thank you for your compassion for the new comers like me. 

       Now it's up to me to put the advice that I have received here into practice. And the most important advice I received here is to have patience. The dose of hope I received was priceless!!

 

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Hi Irwin- 

While you’re in this waiting phase you might want to check  out the Lung Cancer Living Room on YouTube- by the Go2Foundation (formerly the Bonnie J Addario Foundation).  The ALA is a total waste of time.  They’re two hours of very informative and inspiring emerging technologies. (Stuff so new it’s not on the internet)

You may also want to pick up a copy of MD Anderson's “Anti Cancer Living”.  It’s the new LC survival guide with lots of great strategies on how to navigate all of this.  

You are going to want to find a doctor that specializes in your cancer once it’s been specified. For me, personalities or bed side manner is irrelevant. I’ve got a super smart doc- not much on the interpersonal skills but I’m training him and he’s getting used to me. (Check out Tom Brokaw’s interview about surviving cancer entitled You Don’t Have to Like Your Doctor).

While you’re at it take a look at Stephen J Gould’s Essay- The Median Isn’t the Message. This essay pulled me out of a black hole 

Post whenever you want and we will find you on this forum.  We will help you prepare for every visit, test and result. There’s a lot of experience here to draw from. No need to reinvent the wheel. 

Keep us posted- there are good days coming- just hold on for now.  

Michelle

PS I also worked in hem/onc in the early 90s. All I can say is a lot has changed for the better.  

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Thank you so much Curt. 

      I was doing so well emotionally until I crashed today after going to the American Lung Assoc. It sucked out most of my hope. 

 I mentioned that I was in hematology. Well 2 of those years were spent working under 2 oncologists in the mid 90's. Those memories haven't been helpful to me either. But my awesome wife reminded me of how long ago that was. 

   I can't tell you how much my nerves have been calmed here. Thank you for your compassion for the new comers like me. 

       Now it's up to me to put the advice that I have received here into practice. And the most important advice I received here is to have patience. The dose of hope I received was priceless!!

 

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Just want to say that there are people praying 🙏 for me all over the world

 IMy wife and I consider finding this forum an answer to those prayers. 

One note that you might find inspiring. I had a 13 year old Golden retriever. She was totally bonded to me and I to her..Words cannot express how close we were. She was starting to slow down and I thought that she had an infection and planned to take her to the vet... But suddenly I found myself in the hospital for 4 days with a newly discovered mass on my lung.

 When I returned home she had gone down hill to the point that at times she didn't even want her favorite foods. I was too weak to bring her to the vet

.my wife and neice took her. I then got a phone call from the vet. My wife handed the phone to me to talk to the doctor. The doctor found a mass on her liver. Of course I had to make the call to say it politely,pull the plug on the machine. But it was amazing that we both ended up at the doctor with a newly discovered mass!

 

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Michelle,

      What does mantra mean?

Edited by Irwin1
Misspelled name

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For me, its  an internal coping mechanism to say repeatedly in order to get me through a rough spot.  I learned to scull/row as an adult so the patience, perseverance and persistence got me through the awful video sessions & the coaches obvious exasperation due to my lack of life long coordination.   With the triple Ps I won a silver medal in the National mixed Masters Double event.  I figure if I could do that, against all odds, I could beat LC too.  

In Greg Anderson’s “ Cancer: 50 Essentials Thing to Do” Chapter 32 and 33 talks about this.  A mantra , also called an affirmation, is a positive statement of intent and belief.  It might be a little on the woo-woo hippie side of mind body medicine however for me it helped to reframe my negative beliefs and got me out of planning my funeral back to living a great life. 

Michelle

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Irwin,

Welcome here. I've just finished reading the post string and see members have offered sound advice.

To your questions:

18 hours ago, Irwin1 said:

The only question I have is my oncologist said that the pathologist would be able to tell us (my wife and I) what kind of cancer I have from the bronch wash, brush and snippet tissue. 

I believe your oncologist is correct. These days there are often two diagnosis methods for suspected metastatic lung tissue: a histology (visual microscope) examination generally performed in real time as your operation progresses, and a laboratory examination to test the tissue samples for tumor markers that might indicate suitability for new forms of chemotherapy. The histology exam will almost certainly disclose the type and sub type of lung cancer. These could be non small cell or small cell and if non small cell sub types of adenocarcinoma or squamous cell. The lab exam will determine if the cancer can be treated by Targeted Therapy or Immunotherapy.

18 hours ago, Irwin1 said:

Oh. One more quick question what is involved in getting a second opinion. Do they do new CT scans, PET scans, and biopsies? Otherwise they will just be reading the same reports from the radiologists?

I would wait till your current oncologist decides on a treatment plan before seeking a second opinion. Likely, a new doctor will be able to render a second opinion having access to all tests, reports and consultation notes.  It is a good practice to obtain and keep copies of all scan and test reports especially pathology reports (both histology and laboratory).  The new doctor generally calls the practice location of your current doctor to gain access to the consultation notes. It is important to understand the purpose of this second opinion. It is to understand if a different treatment mode is possible.  For example, if your current oncologist specified a plan of conventional radiation and adjuvant chemotherapy, a different oncologist could suggest precision radiation and targeted therapy or immunotherapy.  Generally the diagnosis is not normally discussed during a second opinion.  Histology examination of lung cancer is very conclusive. Another avenue for second opinion would be with a second thoracic surgeon to determine if resecting the tumor or tumors is possible. So, I suggest waiting for your initial treatment plan before seeking a second opinion.

Stay the course.

Tom

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17 hours ago, Rower Michelle said:

Hi Irwin- 

While you’re in this waiting phase you might want to check  out the Lung Cancer Living Room on YouTube- by the Go2Foundation (formerly the Bonnie J Addario Foundation).  The ALA is a total waste of time.  They’re two hours of very informative and inspiring emerging technologies. (Stuff so new it’s not on the internet)

You may also want to pick up a copy of MD Anderson's “Anti Cancer Living”.  It’s the new LC survival guide with lots of great strategies on how to navigate all of this.  

You are going to want to find a doctor that specializes in your cancer once it’s been specified. For me, personalities or bed side manner is irrelevant. I’ve got a super smart doc- not much on the interpersonal skills but I’m training him and he’s getting used to me. (Check out Tom Brokaw’s interview about surviving cancer entitled You Don’t Have to Like Your Doctor).

While you’re at it take a look at Stephen J Gould’s Essay- The Median Isn’t the Message. This essay pulled me out of a black hole 

Post whenever you want and we will find you on this forum.  We will help you prepare for every visit, test and result. There’s a lot of experience here to draw from. No need to reinvent the wheel. 

Keep us posted- there are good days coming- just hold on for now.  

Michelle

PS I also worked in hem/onc in the early 90s. All I can say is a lot has changed for the better.  

Michelle. I can't find a book  called Anti Cancer Living by Anderson MD.

   I was only able to googled Anti Cancer Living by Lorenzo Cohen MD

   Is that the one?

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19 hours ago, Rower Michelle said:

Hi Irwin- 

While you’re in this waiting phase you might want to check  out the Lung Cancer Living Room o

INTRODUCE YOURSELF!
 
 
 
 Lung Cancer Support Community
Introduction
By Irwin1, Yesterday at 04:17 PM in INTRODUCE YOURSELF! 
Irwin1     2 Irwin1
 
Posted yesterday at 04:17 PM
Hi,

    I really got blind sided by this. My right lung started hurting very badly for 2 days until I ended up in my pulmanary doctors office. He immediately sent me to the ER fearing heart attack or embolism. I ended up getting admitted with a mass on my right lung and pneumonia. I received a negative needle biopsy. But I needed a Pet scan. The Pet scan came back positive with a lymphnode lit up. Next step is to get a thoracic surgeon get a biopsy of the lymphnode and mass. But my oncologist read the Pet scan and sort of prepared my wife and I for stage 3 cancer because of the size of the mass and also the lymphnode. I have been coping pretty well until today. Hope I can meet some friends here to help me through this 🙏

 Quote  Edit
Rower Michelle     582 Rower Michelle
 
Posted 23 hours ago
Hi Irwin-

Welcome.  Yes, blindsided is a good way to put this situation. You feel like a freight train hits you out of nowhere. The most important thing for you to know is you are not alone.  Many of us here in the forum received this advanced stage diagnosis with no warning. LC often has no symptoms until the diagnosis. I was also sent to the ER for a suspected pulmonary embolism after a summer of failed allergy meds, antibiotics & steroids last year. 

You’re about to go through the diagnostic process which seems to go on forever- you will soon be scheduled for a Brain MRI and then the molecular study to determine what type of cancer you have in order to determine the best course of treatment. The waiting is hard and necessary to get the treatment plan right the first time. 

I tell everyone during this phase that its okay to feel this way. Give yourself permission to cry- let out all those roller coaster emotions.  

The second thing we would collectively say is stay away from Dr Google.  There have been more treatment advances in the last 3 years than in the last 30.  There are many long term survivors and growing each year. LC is now treated as a chronic condition, like diabetes or heart disease.  

Empower yourself by asking us lots of questions, knowledge will put you back in the drivers seat.  Do not be afraid to get a second opinion once the diagnostic process is completed.  Some of us did, some didn’t depending on the access we have to major academic settings ( Like Moffit in FL). 

There are brighter days ahead, it does take a while to get there, however you will.  Be strong in your faith.  

Let us know how we can support you.  We’ve all been there in this special club that no one ever thought we would join. 

We’re your new family here to help you pick up the pieces as you settle into the new normal. 

Hold onto your hope! 

Michelle

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Irwin1     2 Irwin1
 
Posted 22 hours ago
Oh you are so right about the Dr Google thing. Especially when I was trained to diagnose in the hospital path lab in hematology..

     The only question I have is my oncologist said that the pathologist would be able to tell us (my wife and I) what kind of cancer I have from the bronch wash, brush and snippet tissue. 

   There is only one lymph node that lit up in the PET scan and my oncologist gave me some hope that it might be reactive because of the viral pneumonia.

   But again the size of the mass would make it stage 3. I am hopeful that it is non small cell because I got hints now that I know about the mass that it was causing problems in the last 3 months of last year. I developed 2 coughs from colds that were not normal. They were not upper respiratory infections. They were much lower. So I have to believe that the mass was there at that time.

  Also being in pathology but not in histology I am almost certain that the pathologist will be able to tell from looking at the specimen under the microscope whether it is small or non cell. 

   I am so grateful that you answered my post. Being alone and new to this is a horrible feeling. 

   I do have a question about treatment. My Medicare advantage plan says that it will pay 80% of chemotherapy. It doesn't say which medications are covered. It only says that it covers the ones in Medicare part B. I'm concerned whether I can get these new medications. 

    Do you know anything about this.

    Again, I am so grateful for your reply. My eyes want to tear up.

  Oh. One more quick question what is involved in getting a second opinion. Do they do new CT scans, PET scans, and biopsies? Otherwise they will just be reading the same reports from the radiologists?

 Quote  Edit
Donna G     250 Donna G
 
Posted 22 hours ago
Irwin, hello welcome.  Glad you found us.  

We have some in common.  I called for an appointment . I thought I had an orthopedic problem.  I had pain in my right arm and chest.

They said , you are 50 years old with chest pain ?  Come to the hospital now, you could be having a heart attack !

I went all labs and EKG was normal.  So they did a chest x ray and found a tumor larger than a golf ball in the upper right apex of my lung

pressing on nerves going down my arm and also onto my chest wall.  Got an appointment right away for biopsy, and with Onocologist.

Stage 3B lung cancer.  Luckily I got treatment , chemo  and radiation started quickly with good results so later I was able to have that lobe of lung

removed and as planned more chemo after.  I was diagnosed12/3/97 .  I am still here and cancer free..

Please keep us posted on how things are going and feel free to ask questions.

 

Donna G

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Irwin1     2 Irwin1
 
Posted 22 hours ago
Wow. You just being here gives me hope. I went to learn about my problems at the American Lung Assoc and their info was pretty bleak. You shouldn't be here according to them. You should have been gone a long long time ago.

    This may sound strange but in more than one way, thanks for being here LoL

Like  1
 Quote  Edit
Rower Michelle     582 Rower Michelle
 
Posted 22 hours ago
Irwin-

I have a commercial health Insurance Plan (I’m 51) so I’m not very familiar with the MA plans.  

What I can tell you is the hospital pharmacy team will do everything they can to ensure the proposed treatment plan (chemo, immunotherapy or targeted therapy) doesn’t break the bank.  One of my Medicare LC friends got a grant for Keytruda so there was zero out of pocket. 

You’ll be meeting with a dizzying number of people in the next few weeks, the finance team will be very important.  They have all this stuff down cold.  

Take this one step at a time, it’s so easy to get overwhelmed at this point.  Manage what you need to day by day or hour by hour if necessary. Try not to get ahead of yourself by letting the worry monkeys take over.  You can do this!

Michelle

 

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 Quote
Irwin1     2 Irwin1
 
Posted 22 hours ago
Wow. You just being here gives me hope. I went to learn about my problems at the American Lung Assoc and their info was pretty bleak. You shouldn't be here according to them. You should have been gone a long long time ago.

    This may sound strange but in more than one way, thanks for being here LoL

 Quote  Edit
Irwin1     2 Irwin1
 
Posted 22 hours ago
  22 hours ago, Rower Michelle said:
Irwin-

I have a commercial health Insurance Plan (I’m 51) so I’m not very familiar with the MA plans.  

What I can tell you is the hospital pharmacy team will do everything they can to ensure the proposed treatment plan (chemo, immunotherapy or targeted therapy) doesn’t break the bank.  One of my Medicare LC friends got a grant for Keytruda so there was zero out of pocket. 

You’ll be meeting with a dizzying number of people in the next few weeks, the finance team will be very important.  They have all this stuff down cold.  

Take this one step at a time, it’s so easy to get overwhelmed at this point.  Manage what you need to day by day or hour by hour if necessary. Try not to get ahead of yourself by letting the worry monkeys take over.  You can do this!

Michelle

 

You are right. I didn't even know about the financing available. 

   Thanks for showing me down. I was taking it day by day until the ALA freaked me out with their statistics.

    Also I live in Florida and someone already mentioned that clinic that begins with M. I know it is near Tampa. 

     So I am going to slow it down. I really like your advice. If I start posting in the main forum will you see my posts?

    

 

 Quote  Edit
Curt     250 Curt
 
Posted 21 hours ago
Hi Irwin.  You’ve gotten some great advice from Michelle and an excellent dose of hope from Donna.  The time between first discovering something out of the ordinary on your lung and an actual diagnosis can be agonizing.  The uncertainty of what’s next was difficult for me.  Googling made it worse.  This forum definitely  helped calm my nerves.  I realized there were plenty of people going through what I was or worse.  Their stories and strength provided more help than anything else I found on the Internet.  It’s a tough road but it is one that is unfortunately well travelled by others.  Hang in there.  Once you have a diagnosis and treatment plan there will be an opportunity to get back to living life.  This doesn’t have to be all consuming if you don’t let it. 

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Irwin1     2 Irwin1
 
Posted 20 hours ago
Thank you so much Curt. 

      I was doing so well emotionally until I crashed today after going to the American Lung Assoc. It sucked out most of my hope. 

 I mentioned that I was in hematology. Well 2 of those years were spent working under 2 oncologists in the mid 90's. Those memories haven't been helpful to me either. But my awesome wife reminded me of how long ago that was. 

   I can't tell you how much my nerves have been calmed here. Thank you for your compassion for the new comers like me. 

       Now it's up to me to put the advice that I have received here into practice. And the most important advice I received here is to have patience. The dose of hope I received was priceless!!

 

Like  1
 Quote  Edit
Rower Michelle     582 Rower Michelle
 
Posted 19 hours ago
Hi Irwin- 

While you’re in this waiting phase you might want to check  out the Lung Cancer Living Room on YouTube- by the Go2Foundation (formerly the Bonnie J Addario Foundation).  The ALA is a total waste of time.  They’re two hours of very informative and inspiring emerging technologies. (Stuff so new it’s not on the internet)

You may also want to pick up a copy of MD Anderson's “Anti Cancer Living”.  It’s the new LC survival guide with lots of great strategies on how to navigate all of this.  

You are going to want to find a doctor that specializes in your cancer once it’s been specified. For me, personalities or bed side manner is irrelevant. I’ve got a super smart doc- not much on the interpersonal skills but I’m training him and he’s getting used to me. (Check out Tom Brokaw’s interview about surviving cancer entitled You Don’t Have to Like Your Doctor).

While you’re at it take a look at Stephen J Gould’s Essay- The Median Isn’t the Message. This essay pulled me out of a black hole 

Post whenever you want and we will find you on this forum.  We will help you prepare for every visit, test and result. There’s a lot of experience here to draw from. No need to reinvent the wheel. 

Keep us posted- there are good days coming- just hold on for now.  

Michelle

PS I also worked in hem/onc in the early 90s. All I can say is a lot has changed for the better.  

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 Quote
Irwin1     2 Irwin1
 
Posted 19 hours ago
Thank you so much Curt. 

      I was doing so well emotionally until I crashed today after going to the American Lung Assoc. It sucked out most of my hope. 

 I mentioned that I was in hematology. Well 2 of those years were spent working under 2 oncologists in the mid 90's. Those memories haven't been helpful to me either. But my awesome wife reminded me of how long ago that was. 

   I can't tell you how much my nerves have been calmed here. Thank you for your compassion for the new comers like me. 

       Now it's up to me to put the advice that I have received here into practice. And the most important advice I received here is to have patience. The dose of hope I received was priceless!!

 

 Quote  Edit
Irwin1     2 Irwin1
 
Posted 19 hours ago
Just want to say that there are people praying 🙏 for me all over the world

 IMy wife and I consider finding this forum an answer to those prayers. 

One note that you might find inspiring. I had a 13 year old Golden retriever. She was totally bonded to me and I to her..Words cannot express how close we were. She was starting to slow down and I thought that she had an infection and planned to take her to the vet... But suddenly I found myself in the hospital for 4 days with a newly discovered mass on my lung.

 When I returned home she had gone down hill to the point that at times she didn't even want her favorite foods. I was too weak to bring her to the vet

.my wife and neice took her. I then got a phone call from the vet. My wife handed the phone to me to talk to the doctor. The doctor found a mass on her liver. Of course I had to make the call to say it politely,pull the plug on the machine. But it was amazing that we both ended up at the doctor with a newly discovered mass!

 

 Quote  Edit
Rower Michelle     582 Rower Michelle
 
Posted 18 hours ago
Patience, Perseverance, & Persistence.  That’s my motto- it’s on loan to you until you find your new mantra. 👍

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Irwin1     2 Irwin1
 
Posted 5 hours ago
Michelle,

      What does mantra mean?

Edited 5 hours ago by Irwin1 
Misspelled name
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Rower Michelle     582 Rower Michelle
 
Posted 4 hours ago
For me, its  an internal coping mechanism to say repeatedly in order to get me through a rough spot.  I learned to scull/row as an adult so the patience, perseverance and persistence got me through the awful video sessions & the coaches obvious exasperation due to my lack of life long coordination.   With the triple Ps I won a silver medal in the National mixed Masters Double event.  I figure if I could do that, against all odds, I could beat LC too.  

In Greg Anderson’s “ Cancer: 50 Essentials Thing to Do” Chapter 32 and 33 talks about this.  A mantra , also called an affirmation, is a positive statement of intent and belief.  It might be a little on the woo-woo hippie side of mind body medicine however for me it helped to reframe my negative beliefs and got me out of planning my funeral back to living a great life. 

Michelle

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Tom Galli     2,542 Tom Galli
 
Posted 4 hours ago
Irwin,

Welcome here. I've just finished reading the post string and see members have offered sound advice.

To your questions:

  22 hours ago, Irwin1 said:
The only question I have is my oncologist said that the pathologist would be able to tell us (my wife and I) what kind of cancer I have from the bronch wash, brush and snippet tissue. 

I believe your oncologist is correct. These days there are often two diagnosis methods for suspected metastatic lung tissue: a histology (visual microscope) examination generally performed in real time as your operation progresses, and a laboratory examination to test the tissue samples for tumor markers that might indicate suitability for new forms of chemotherapy. The histology exam will almost certainly disclose the type and sub type of lung cancer. These could be non small cell or small cell and if non small cell sub types of adenocarcinoma or squamous cell. The lab exam will determine if the cancer can be treated by Targeted Therapy or Immunotherapy.

  22 hours ago, Irwin1 said:
Oh. One more quick question what is involved in getting a second opinion. Do they do new CT scans, PET scans, and biopsies? Otherwise they will just be reading the same reports from the radiologists?

I would wait till your current oncologist decides on a treatment plan before seeking a second opinion. Likely, a new doctor will be able to render a second opinion having access to all tests, reports and consultation notes.  It is a good practice to obtain and keep copies of all scan and test reports especially pathology reports (both histology and laboratory).  The new doctor generally calls the practice location of your current doctor to gain access to the consultation notes. It is important to understand the purpose of this second opinion. It is to understand if a different treatment mode is possible.  For example, if your current oncologist specified a plan of conventional radiation and adjuvant chemotherapy, a different oncologist could suggest precision radiation and targeted therapy or immunotherapy.  Generally the diagnosis is not normally discussed during a second opinion.  Histology examination of lung cancer is very conclusive. Another avenue for second opinion would be with a second thoracic surgeon to determine if resecting the tumor or tumors is possible. So, I suggest waiting for your initial treatment plan before seeking a second opinion.

Stay the course.

Tom

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Irwin1     2 Irwin1
 
Posted 2 hours ago
  19 hours ago, Rower Michelle said:
Hi Irwin- 

While you’re in this waiting phase you might want to check  out the Lung Cancer Living Room on YouTube- by the Go2Foundation (formerly the Bonnie J Addario Foundation).  The ALA is a total waste of time.  They’re two hours of very informative and inspiring emerging technologies. (Stuff so new it’s not on the internet)

You may also want to pick up a copy of MD Anderson's “Anti Cancer Living”.  It’s the new LC survival guide with lots of great strategies on how to navigate all of this.  

You are going to want to find a doctor that specializes in your cancer once it’s been specified. For me, personalities or bed side manner is irrelevant. I’ve got a super smart doc- not much on the interpersonal skills but I’m training him and he’s getting used to me. (Check out Tom Brokaw’s interview about surviving cancer entitled You Don’t Have to Like Your Doctor).

While you’re at it take a look at Stephen J Gould’s Essay- The Median Isn’t the Message. This essay pulled me out of a black hole 

Post whenever you want and we will find you on this forum.  We will help you prepare for every visit, test and result. There’s a lot of experience here to draw from. No need to reinvent the wheel. 

Keep us posted- there are good days coming- just hold on for now.  

Michelle

PS I also worked in hem/onc in the early 90s. All I can say is a lot has changed for the better.  

Michelle. I can't find a book  called Anti Cancer Living by Anderson MD.

   I was only able to googled Anti Cancer Living by Lorenzo Cohen MD

   Is that the one?

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Rower Michelle     582 Rower Michelle
 
Posted 2 hours ago
Yes. That’s the book. Dr Cohen is the head of Integrative Medicine at MD Anderson. It’s a great read. 

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19 hours ago, Rower Michelle said:
Hi Irwin- 

While you’re in this waiting phase you might want to check  out the Lung Cancer Living Room on YouTube- by the Go2Foundation (formerly the Bonnie J Addario Foundation).  The ALA is a total waste of time.  They’re two hours of very informative and inspiring emerging technologies. (Stuff so new it’s not on the internet)

You may also want to pick up a copy of MD Anderson's “Anti Cancer Living”.  It’s the new LC survival guide with lots of great strategies on how to navigate all of this.  

You are going to want to find a doctor that specializes in your cancer once it’s been specified. For me, personalities or bed side manner is irrelevant. I’ve got a super smart doc- not much on the interpersonal skills but I’m training him and he’s getting used to me. (Check out Tom Brokaw’s interview about surviving cancer entitled You Don’t Have to Like Your Doctor).

While you’re at it take a look at Stephen J Gould’s Essay- The Median Isn’t the Message. This essay pulled me out of a black hole 

Post whenever you want and we will find you on this forum.  We will help you prepare for every visit, test and result. There’s a lot of experience here to draw from. No need to reinvent the wheel. 

Keep us posted- there are good days coming- just hold on for now.  

Michelle

PS I also worked in hem/onc in the early 90s. All I can say is a lot has changed for the better.  

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Michelle. I can't find a book  called Anti Cancer Living by Anderson MD.

   I was only able to googled Anti Cancer Living by Lorenzo Cohen MD

   Is that the one?

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n YouTube- by the Go2Foundation (formerly the Bonnie J Addario Foundation).  The ALA is a total waste of time.  They’re two hours of very informative and inspiring emerging technologies. (Stuff so new it’s not on the internet)

You may also want to pick up a copy of MD Anderson's “Anti Cancer Living”.  It’s the new LC survival guide with lots of great strategies on how to navigate all of this.  

You are going to want to find a doctor that specializes in your cancer once it’s been specified. For me, personalities or bed side manner is irrelevant. I’ve got a super smart doc- not much on the interpersonal skills but I’m training him and he’s getting used to me. (Check out Tom Brokaw’s interview about surviving cancer entitled You Don’t Have to Like Your Doctor).

While you’re at it take a look at Stephen J Gould’s Essay- The Median Isn’t the Message. This essay pulled me out of a black hole 

Post whenever you want and we will find you on this forum.  We will help you prepare for every visit, test and result. There’s a lot of experience here to draw from. No need to reinvent the wheel. 

Keep us posted- there are good days coming- just hold on for now.  

Michelle

PS I also worked in hem/onc in the early 90s. All I can say is a lot has changed for the better.  

Michelle. I can't find a book  called Anti Cancer Living by Anderson MD.

   I was only able to googled Anti Cancer Living by Lorenzo Cohen MD

   Is that the one?

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Anyway, I watched the Lung Cancer Living Room on YouTube and ended up depressed and afraid. I suppose I in partial denial. I also read some strong stuff on the site about the definition of a survivor is. That made me worse. I am not dealing with this disease too well.

     I get up out of the bed to.try to live my normal life and the diagnosis is always following me in the back of my mind.. I am going to try it again.. I think not being able to do anything until the surgeon gets the biopsy is not helping me. 

  Anyway I am going to try again to get out of bed. It is 5pm but not too late to salvage part of the day. 

 

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Get up and try again. Set small goals for the day.  Some days it was a monumental effort for me to take a shower.   It’s never too late to start the day.  What you are going through now is normal. Go easy on yourself. One hour at a time.   Take a break from lung cancer for the rest of the day... 

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The mental toll is often worse than the physical.  The waiting for what’s next is tough.  It still wears me down sometimes and I’m currently NED. Set some goals for yourself each day.  Plan an activity.  Do a chore.  Call a loved one.  Write on this board.  The reality will start to sink in and you will be able to focus on other things.  It takes a while but it happens.  Hang in there.    

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Michelle you sound exactly like my wife Lol. 

   It's a new day. I am adjusting to the harsh reality of my new situation which is LC. 

   But I will say that I have everything I need to battle this illness. I have a great wife. I have an air conditioned roof over my head in Florida..A couple of dogs.

   And I have absolutely no symptoms from this 5-7cm mass that has taken up a home on my lung. If I wasn't told it was there I wouldn't know it. 

   Having said that I am going to stop studying lung cancer online and enjoy the fact that I feel absolutely healthy today. Tommorow I don't know about. But today I feel healthy.

      Oh wait. If I am going to be part of the group here I have to grow up. 

      I am currently NED :)

    

 

 

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