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Hi I'm Brian from outside of Boston.  I had a cough that wouldn't go away and in a week I had three different diagnostic tests and was sitting with a thoracic surgeon from Brigham and Woman's who was telling me about my lung cancer.  We talked about what he knew and what still remained to be learned before I can be staged. I was scheduled for a biopsy on Tuesday but it was cancelled that morning. Now it's scheduled for next Tuesday. They have run several tests and they tell me that the tests seem to indicate a neuroendocrine tumor.  I am scared but trying to remain upbeat.  I have four kids who all seem to want me around. I haven't told many people yet because i don't really know what I'm dealing with. 

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Hi, Brian, and welcome.  Yeah, the waiting for tests, results, treatment plan, etc., is definitely one of the more stressful aspects of this whole deal. What tests have you had so far?  How large is the nodule/mass?  Why do they suspect a neuroendocrine tumor?

Sounds like you'll be in good hands at that hospital.  The good news is that there have been many advances in cancer treatment.  Being scared is absolutely normal, but try to keep that upbeat attitude.  You don't know for sure what you are dealing with, and most of us feel a sense of relief when we finally know and have a game plan to deal with it.  

Glad you found us--this is a great place for information and support.

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Welcome Brian .  Glad you found us.  

I grew up in Boston  ( Roslindale) .  Sorry you had that delay on Tuesday but glad they were able to reschedule it for you.

Please tell us what they find from your Biopsy.  How old are your 4 kids ?   Have you got other family near by.  It is great to have family or friends to help 

and support you as with going with you to appointments or treatments.  An extra set of ears help and also may take notes for you.

Keep us posted

 

Donna G

 

 

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Stay up beat because there are many new lung cancer treatments out there now.  It's not the death sentence it was even just five years ago.   Find a doctor who is up-to-date with all these new types of treatments....that's my best advice.  Even get second opinions and different options for treatment you are most comfortable with. 

keep in touch...  

 

John S.

 

  

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Hi Brian-

Welcome to our group.  You’re fortunate to be in the Boston area which has several lung cancer specialists. Once your biopsy and scan-a-mania has been completed a treatment plan will be proposed.  You may or may not choose to receive a second opinion.  It will be critical to have an oncologist that specializes in your type of lung cancer.  For example, I’m treated in a major academic setting for ALK Positive NSCLC.  It’s a rare form of LC. My onc has 4 ALKs. That’s a “big” practice.  

There will be resources to help you cope at your treatment facility.  Advocate for yourself to get an appointment with the oncology social worker. The docs are in charge of the science, surgery, medicine and numbers (aka labs).  They really aren’t typically a source of comfort. 

If you are working, then you may need to consider short term disability/FMLA.  That’s an interesting ball game that we all here can help you with.  

This is the right place to ask anything. Let us know how we can support you.  Gotta let you know that I’m born & raised in Jersey so that makes me a Yankees fan!   Glad to meet you.  Keep us posted. 

Michelle

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Hi Brian.  I’m sorry to hear about your struggles but glad you found this site.  The initial diagnostics and testing (and inevitable waiting) is really tough.  Hang in there.  You’ll find plenty of support here if you need it.  

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3 hours ago, LexieCat said:

Hi, Brian, and welcome.  Yeah, the waiting for tests, results, treatment plan, etc., is definitely one of the more stressful aspects of this whole deal. What tests have you had so far?  How large is the nodule/mass?  Why do they suspect a neuroendocrine tumor?

Sounds like you'll be in good hands at that hospital.  The good news is that there have been many advances in cancer treatment.  Being scared is absolutely normal, but try to keep that upbeat attitude.  You don't know for sure what you are dealing with, and most of us feel a sense of relief when we finally know and have a game plan to deal with it.  

Glad you found us--this is a great place for information and support.

I started with the X-ray at Urgent Care, the PA tried to tell me it was post nasal drip. I’ve had pneumonia a couple times so she ordered the X-ray. I then had CT, then Pet scan 2 days later. After I met the doctor I had a brain MRI which blessedly said it hadn’t spread there. the tumor is close to my pulmonary artery (I think that’s what he said, it’s become kind of a blur) in the bottom lobe of my right lung, the thoracic surgeon said they couldn’t do a normal biopsy so I have to be under general anesthesia for the biopsy.  I’ve also had a breathing test and a heart echocardiogram. Good lord no wonder my head is spinning. 

They are thinking a neuroendocrine tumor because I’ve never smoked, the tumor (3cm) is very round, and they ran a series of blood tests to look for indicators that indicate that type. I’m hesitant to put much weight into this because I’ve had so many truly scientific tests and this feels more like the doctors feeling. 

I really appreciate everybody who’s reached out, I’ve already learned so much about this but I’ve only scratched the surface.

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3 hours ago, Donna G said:

Welcome Brian .  Glad you found us.  

I grew up in Boston  ( Roslindale) .  Sorry you had that delay on Tuesday but glad they were able to reschedule it for you.

Please tell us what they find from your Biopsy.  How old are your 4 kids ?   Have you got other family near by.  It is great to have family or friends to help 

and support you as with going with you to appointments or treatments.  An extra set of ears help and also may take notes for you.

Keep us posted

 

Donna G

 

 

Thanks Donna, B&W is affiliated with Dana Farber and they have a center in Milford that I’ve been using for some testing. I contemplated going to Boston but after some research and a long discussion with my wife we decided I can get excellent care there.

My oldest daughter is finishing her freshman year at UVM, I’m so proud of her, she’s working her tail off in the Mechanical Engineering program. My son is a junior in high school, we just got back from looking at colleges this weekend. The youngest are twins who will enter high school next year. I haven’t told the kids or my family (I’m the youngest of 6)  anything yet, I want to know my stage before I do. My wife will be at my next doctors appointment, she couldn’t go when I met the surgeon.  Thank you so much for reaching out....

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Brian-

Your diagnostic presentation is very similar to mine.  I’m a 51 yo never smoker who was initially treated for allergies/post nasal/sinus infection that didn’t exist.  Eventually pneumonia set in, after a failed course of antibiotics, steroids & inhalers, a smart nurse ordered a CT before I was almost referred to infectious disease.  Two pulmonologists couldn’t figure it out; the biopsy was ordered to rule out a fungal infection or TB   

My tumor is also in the lower right lung. Fortunately they were able to CT/biopsy it.  I’m sure in your case there will be a bio-marker test by Foundation One which is actually in Boston.  

Today I’m benefiting from the treatment advances as my disease is stable.  I live life at 110% every day.  

This group is like Noah’s Arc.  No matter what type of LC you have, you will not be alone.  We’re all in this boat together.  

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Hi Brian and welcome to the forum.  I'm a recent lung cancer patient and am, just now, recovering from my surgery (lobectomy) and I can tell you that you'll find a great group of people here of varied experiences who will provide support as you go through this process.

I can tell you that when I was going through my "diagnostic phase" I took notes at the appointments and also brought lists of questions to meetings in order to ensure that I understood everything and also got all my concerns addressed.  I recommend that approach or having another person who can help with that part for you.

Stay calm, listen carefully and always take time to think clearly before taking a decision.  You'll get through this and many of us will be here as sounding boards and a source of first-hand information.

BTW, like Michelle, I (raised in NY) am a Yankees fan, but I'll not let that affect the relationship between us.  :)

Stay strong and don't catastrophize...take each bit of data clearly and you'll see your way to a solid plan to address this.  

Lou

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Hi, Brian. I'm glad you found us. I know this stage is overwhelming and your head is spinning. Trust me - I've been there. This community and this site will help you with information. The first thing I will tell you is to stay away from the statistics. Second, hang in there. Whatever your diagnosis or treatment plan, someone here has been down that same path. 

Let us know how we can support you.

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9 hours ago, Rower Michelle said:

Brian-

Your diagnostic presentation is very similar to mine.  I’m a 51 yo never smoker who was initially treated for allergies/post nasal/sinus infection that didn’t exist.  Eventually pneumonia set in, after a failed course of antibiotics, steroids & inhalers, a smart nurse ordered a CT before I was almost referred to infectious disease.  Two pulmonologists couldn’t figure it out; the biopsy was ordered to rule out a fungal infection or TB   

My tumor is also in the lower right lung. Fortunately they were able to CT/biopsy it.  I’m sure in your case there will be a bio-marker test by Foundation One which is actually in Boston.  

Today I’m benefiting from the treatment advances as my disease is stable.  I live life at 110% every day.  

This group is like Noah’s Arc.  No matter what type of LC you have, you will not be alone.  We’re all in this boat together.  

Thank you Michelle, that's good to hear that your disease is stable. I'll make sure i get the bio-marker test. Is that done from the biopsy?    

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10 hours ago, LouT said:

Hi Brian and welcome to the forum.  I'm a recent lung cancer patient and am, just now, recovering from my surgery (lobectomy) and I can tell you that you'll find a great group of people here of varied experiences who will provide support as you go through this process.

I can tell you that when I was going through my "diagnostic phase" I took notes at the appointments and also brought lists of questions to meetings in order to ensure that I understood everything and also got all my concerns addressed.  I recommend that approach or having another person who can help with that part for you.

Stay calm, listen carefully and always take time to think clearly before taking a decision.  You'll get through this and many of us will be here as sounding boards and a source of first-hand information.

BTW, like Michelle, I (raised in NY) am a Yankees fan, but I'll not let that affect the relationship between us.  :)

Stay strong and don't catastrophize...take each bit of data clearly and you'll see your way to a solid plan to address this.  

Lou

Thank you for reaching out Lou, I have tried to prepare for my appointments. My wife will be going to most of them from here on so that will help. In my mind, i was prepared to hear that i had cancer, i wasn't prepared to not know what's next for treatment. 

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13 minutes ago, Brian1969 said:

Thank you Michelle, that's good to hear that your disease is stable. I'll make sure i get the bio-marker test. Is that done from the biopsy?    

Yes it’s taken from the biopsy tissue so no more poking around.  Be sure to contact your insurance company to assess coverage. The test is $5800. My insurance company only paid a portion of it & then reconsidered it with a full denial.  I got financial assistance from Foundation One in the end the my out of pocket was zero.  

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Good luck to you Brian!  I am also new to this site.  I was diagnosed April 11, 2019,  and it has been a whirlwind.  The support I have found with this group is invaluable.  You take care now.

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Hi Brian!

Nice to "meet" you.  Lots of great advice so far- just wanted to extend a warm welcome and echo again the importance of biomarker testing- which can determine whether or not you are a candidate for targeted therapies and immunotherapies.

Keep posting- it really does help and these are the best people to connect with.

Best hopes,

KatieB

 

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