Newly Diagnosed

[Dona]

Hello. 

I had my annual cardiology appt on July 7th, and altho my heart was fine, I told my Dr about my shortness of breath and coughing up blood.  He listened to my lungs and dx'd hemoptysis and RX'd Albuterol. Told me to stay off the internet because I feared the worst:  cancer.

He did order a chest xray to be safe, and it was performed a week later on July 13.

Xray revealed a 5.7 mass on RLung and a possible metasized nodule on upper Rlung.

And that's when I went into total anxiety mode.

CT scan 2 days later and confirmed 5.2cm mass and nodule.  Cardiologist seems to think it's confined to the Rlung, but he emphasized he's not an oncologist.

My cardiologist is arranging a visit to oncologist with more diagnostics hopefully next week. A previous poster coined the term: scanziety. I've got it bad 

Haven't been able to sleep because of the anxious  heartbeat pounding in my eardums, the ocean of what-ifs and thoughts of death, what about my animals, what about my loss of income,  etc  etc? I'm an empty nester and my married daughter is in southern CA (I'm in NorCA)

Then I stumbled upon this site and it has been such an uplifting resource vs the doom and gloom on the internet.

Thank u all for sharing your stories and giving me hope. 

 

[TJM]

Welcome Dona. Getting the diagnosis nailed down is maybe the hardest time of the entire ordeal. You've "stumbled" into the right place for sure!

Scanziety was a term coined by one of our own. I'm sure he will be commenting soon. As will several other really special people. We are here to help.

The other part about the beginning of the beginning (pre official diagnosis) is the amount of information that is suddenly dumped on you. Its impossible to absorb quickly. Probably a core principle here (unwritten) is to be a safe place for information. And support. And to vent. So let us know how we can help.

I was just thinking about insomnia and sleep issues. I'm having some minor issues now. Funny part is there are a couple of times a day where when you wake your first question is....morning or evening? I literally just had it happen. Had to check my phone!

Peace

Tom

[Dona]

Tom

Thank u for your quick reply.  Since my xray and subsequent CT scan - all in the last 4 days - my world has been turned upside down. Until I found this forum. I've actually gone from I'm gonna die to I'm gonna fight solely because of posts like yours. Thank you again !

[LouT]

Dona,

Welcome to our forum and we're sorry you need to be here.  Tom brings up some good points so let's help you out with a few facts:

1.  Lung cancer is not a guaranteed death sentence.  You'll find many people here, diagnosed at different stages, who are still going strong and living a full life.

2.  You need to get through the diagnosis phase and (as Tom intimated) this is one of the toughest.  It's full of uncertainties and at the same time you have a lot of scary information being sent your way that you don't know how to digest or process.  This is normal so breathe and calm down.

3.  Even ifs you have lung cancer it is not a guaranteed death sentence.  More advances have been made in the last 5 years than in the previous 50.

4.  You have a ready-made family here of people who have suffered from all types and stages of lung cancer and all that goes with it so you will have great support, based on the real-life experience of the many people here.  So try and relax so you can get through this phase.

5.  When the diagnostic process is over the medical team will determine the best treatment protocol for you and you will begin to feel empowered.  You will be ready to fight this thing, you will know what it is and how you can survive it.  All of us have experienced this and it is liberating after all the fear and anxiety of the diagnostic phase.  So, stay focused and keep away from Dr. Google...

In the meantime, please take a look at an article written by Tom Galli entitled "10 Steps to Surviving Lung Cancer; from a Survivor"  you can find it here.

Lou 

[BrianK]

4 hours ago, Dona said:

Tom

Thank u for your quick reply.  Since my xray and subsequent CT scan - all in the last 4 days - my world has been turned upside down. Until I found this forum. I've actually gone from I'm gonna die to I'm gonna fight solely because of posts like yours. Thank you again !

Hi Dona, welcome to the forums! I’m new here too and have a CT on Tues for a 1.8 cm nodule they found in my RLL so i know exactly how you feel with the massive anxiety and feeling of “what the hell is going on and what will happen”. I couldn’t stop reading literature on nodules and lung cancer these past few days and even consulted family (bro in law is a surgeon and his brother a radiology oncologist) and they all told me to stay away from it all and just wait out the results—easier said than done!

 Do you have any history of smoking or been around it? I never smoked or have been around it and I’m 44 so just surprised and shocked they saw such a large nodule on xray (same side i have pneumonia). 
 

Hoping for the best for both of us. I’m in N Cal as well btw. 

[Judy M2]

Dona, you're in the twilight zone right now, and waiting can be excruciating. So let's take it one step at a time. Insomnia and anxiety are natural reactions to your shocking diagnosis. Your mind is going to race with all these thoughts. I was like that too for a while. 

You'll need to get a biopsy to determine what kind of cancer this may be and also whether a genetic mutation is the cause. This genetic/biomarker testing is essential but can take weeks to get results. I assume you'll be meeting with a pulmonologist soon too.

The oncologist can prescribe something for insomnia/anxiety, so don't hesitate to ask. I've found lorazepam to be helpful for both. 

While you wait for all your test results, you may want to address those open items that are bothering you. It will give you something else to focus on and will be one less thing to worry about when you start treatment. Especially make an advance directive/health care proxy if you don't already have one. Every medical institution will ask for a copy. It's just good planning that everyone, even healthy people, should do. 

When I was diagnosed in October 2019, my primary physician told me that lung cancer isn't a death sentence anymore. Of course, I didn't believe her. But you know what, for me she was right. Today I am NED (No Evidence of Disease) and doing well, with my next regular PET scan coming up at the end of the month. 

All of us have been where you are today. Once you get your treatment plan, you'll be able to start moving forward. 

[Dona]

12 hours ago, BrianK said:

Hi Dona, welcome to the forums! I’m new here too and have a CT on Tues for a 1.8 cm nodule they found in my RLL so i know exactly how you feel with the massive anxiety and feeling of “what the hell is going on and what will happen”. I couldn’t stop reading literature on nodules and lung cancer these past few days and even consulted family (bro in law is a surgeon and his brother a radiology oncologist) and they all told me to stay away from it all and just wait out the results—easier said than done!

 Do you have any history of smoking or been around it? I never smoked or have been around it and I’m 44 so just surprised and shocked they saw such a large nodule on xray (same side i have pneumonia). 
 

Hoping for the best for both of us. I’m in N Cal as well btw. 

Hi Brian, thx for yr reply. I was a smoker in high school then quit in my 20's. I'm 66 now. I have had an occasional cigar with my son-in-law in the last year or so. My mother smoked 2 packs a day and finally quit in her 50's. She passed in 2016 with COPD and liver cancer. So I've definitely been exposed. 

I did have uterine cancer in 1999 but was considered 'cured' by my gyno onco. Of course it's in the back of my mind that this mass could be metasized uterine cancer. I have been remiss in doing annual checkups bc I thot I.was cured. That will all change now lol.  My radiologist's point of reference on this current mass is a 2016 xray which was clear so of coursr this mass is considered fast growing:  5.2cm in 5 years.

It's always in my thoughts but this forum is such a welcomed resource. Thank u again for yr post!

[Dona]

4 hours ago, Judy M2 said:

Dona, you're in the twilight zone right now, and waiting can be excruciating. So let's take it one step at a time. Insomnia and anxiety are natural reactions to your shocking diagnosis. Your mind is going to race with all these thoughts. I was like that too for a while. 

You'll need to get a biopsy to determine what kind of cancer this may be and also whether a genetic mutation is the cause. This genetic/biomarker testing is essential but can take weeks to get results. I assume you'll be meeting with a pulmonologist soon too.

The oncologist can prescribe something for insomnia/anxiety, so don't hesitate to ask. I've found lorazepam to be helpful for both. 

While you wait for all your test results, you may want to address those open items that are bothering you. It will give you something else to focus on and will be one less thing to worry about when you start treatment. Especially make an advance directive/health care proxy if you don't already have one. Every medical institution will ask for a copy. It's just good planning that everyone, even healthy people, should do. 

When I was diagnosed in October 2019, my primary physician told me that lung cancer isn't a death sentence anymore. Of course, I didn't believe her. But you know what, for me she was right. Today I am NED (No Evidence of Disease) and doing well, with my next regular PET scan coming up at the end of the month. 

All of us have been where you are today. Once you get your treatment plan, you'll be able to start moving forward. 

Judy, yes I am in the twilight zone and posts like yours are so helpful in keeping my sanity until the DX and treatment plan is developed. I really appreciate the information and support you and others are providing during this crappy time.

[Dona]

17 hours ago, LouT said:

Dona,

Welcome to our forum and we're sorry you need to be here.  Tom brings up some good points so let's help you out with a few facts:

1.  Lung cancer is not a guaranteed death sentence.  You'll find many people here, diagnosed at different stages, who are still going strong and living a full life.

2.  You need to get through the diagnosis phase and (as Tom intimated) this is one of the toughest.  It's full of uncertainties and at the same time you have a lot of scary information being sent your way that you don't know how to digest or process.  This is normal so breathe and calm down.

3.  Even ifs you have lung cancer it is not a guaranteed death sentence.  More advances have been made in the last 5 years than in the previous 50.

4.  You have a ready-made family here of people who have suffered from all types and stages of lung cancer and all that goes with it so you will have great support, based on the real-life experience of the many people here.  So try and relax so you can get through this phase.

5.  When the diagnostic process is over the medical team will determine the best treatment protocol for you and you will begin to feel empowered.  You will be ready to fight this thing, you will know what it is and how you can survive it.  All of us have experienced this and it is liberating after all the fear and anxiety of the diagnostic phase.  So, stay focused and keep away from Dr. Google...

In the meantime, please take a look at an article written by Tom Galli entitled "10 Steps to Surviving Lung Cancer; from a Survivor"  you can find it here.

Lou 

Lou thank u for welcoming me to.the 'family'. You are a godsend to me. 

I have read the 10 steps by Tom and it is informative and uplifting. I seem to be consuming everything I can about this disease so that I can be an informed self advocate for my medical team.  I seem to be imagining the worst so that if it's anything other, I havent 'jinxed ' it.  Anyone else bargain with fate like that?

I am so thankful for all of u for holding me up through these next steps and subsequent treatment. Thank you thank you thank you!