Karen_L

I know how anxious you have been, and the post that follows includes details and questions that I think you-- or your husband-- would be wise to investigate.
I'm surprised that she does not expect she will find anything "interesting?" A PET response in a mass is a definite concern, i.e., "interesting". Do you have access to the direct report of the PET? The SUV number would be interesting. That's the measurement of dye uptake.  It may be that she is talking about the lymph nodes? It would have been interesting to hear ger thoughts on what she would find that would qualify as "interesting."
I hope she is planning to be aggressive in pursuit of future procedures. The CT guided biopsy sounds good-- when will that happen? I strongly hope that the future procedures will include a liquid biopsy. (Many lung cancer specialists now routinely do both a tissue and a liquid biopsy-- the liquid biopsy yields faster results, where a tissue biopsy takes weeks.) 
On this page is information about tissue biopsy, with a good explanation of the Bronchoscophy procedure. 
Deep breaths. You can do this. You will be fine. 
 
 

No matter what happens, you will feel frightened.
But, and please hear this:  if we can get through it, you can too.   
As you learn more, you will be able better to make sure you get the best care for your situation. 
I agree--I would want a referral to an oncologist who specializes in lung cancer. I suggest you call the Lungevity Helpline for assistance, ASAP. 844-360-5864
I, too, would want a CT scan with contrast and a biopsy of those lymph nodes. That was the only tissue my doctor could get-- the tumor was too hard to reach-- and that tissue gave us the info necessary. 
 

There is something very satisfying about the thought of those stupid tumors being reduced to ask. I've had targeted radiation to lumph nodes, lung tumor, and brain met. I wish surgery had been an option, but 🤷‍♀️, what're ya gonna do? 
Hang in. I like the article-- good for you for sticking to peer-reviewed research

I know how anxious you have been, and the post that follows includes details and questions that I think you-- or your husband-- would be wise to investigate.
I'm surprised that she does not expect she will find anything "interesting?" A PET response in a mass is a definite concern, i.e., "interesting". Do you have access to the direct report of the PET? The SUV number would be interesting. That's the measurement of dye uptake.  It may be that she is talking about the lymph nodes? It would have been interesting to hear ger thoughts on what she would find that would qualify as "interesting."
I hope she is planning to be aggressive in pursuit of future procedures. The CT guided biopsy sounds good-- when will that happen? I strongly hope that the future procedures will include a liquid biopsy. (Many lung cancer specialists now routinely do both a tissue and a liquid biopsy-- the liquid biopsy yields faster results, where a tissue biopsy takes weeks.) 
On this page is information about tissue biopsy, with a good explanation of the Bronchoscophy procedure. 
Deep breaths. You can do this. You will be fine. 
 
 

Glad you're here!
I was diagnosed during Covid; my family attended meetings via Zoom. You may find it helpful to be a fly on the wall rather than a secondhand learner. 
One of my mutations is S768i. I also have a an Exon 21 mutation, L858R. They seem to carry a 50/50 influence (I forget the language.) I was diagnosed in February of 2021.
Immunology is not effective for any EGFR mutations. 
mycancergenome.org had information about mutations and treatments. The site seems hinky today-- my bookmarks aren't working. But check it out. 
The NCCN algorithms for NSCLC treatment protocols have been informative for me. 
FWIW, subcutaneous Ami takes less time than venous infusion and yields the same results. Not sure if that's an available protocol yet, or whether it is still in trials. It never hurts to ask. 
In a webinar once I asked a top researcher why we heard so little about S768i. He said he was sure somebody was researching it. I haven't done a deep dive into it. Yet. 😃
Please keep us posted.
 
 
 

Glad you're here!
I was diagnosed during Covid; my family attended meetings via Zoom. You may find it helpful to be a fly on the wall rather than a secondhand learner. 
One of my mutations is S768i. I also have a an Exon 21 mutation, L858R. They seem to carry a 50/50 influence (I forget the language.) I was diagnosed in February of 2021.
Immunology is not effective for any EGFR mutations. 
mycancergenome.org had information about mutations and treatments. The site seems hinky today-- my bookmarks aren't working. But check it out. 
The NCCN algorithms for NSCLC treatment protocols have been informative for me. 
FWIW, subcutaneous Ami takes less time than venous infusion and yields the same results. Not sure if that's an available protocol yet, or whether it is still in trials. It never hurts to ask. 
In a webinar once I asked a top researcher why we heard so little about S768i. He said he was sure somebody was researching it. I haven't done a deep dive into it. Yet. 😃
Please keep us posted.
 
 
 

I know how anxious you have been, and the post that follows includes details and questions that I think you-- or your husband-- would be wise to investigate.
I'm surprised that she does not expect she will find anything "interesting?" A PET response in a mass is a definite concern, i.e., "interesting". Do you have access to the direct report of the PET? The SUV number would be interesting. That's the measurement of dye uptake.  It may be that she is talking about the lymph nodes? It would have been interesting to hear ger thoughts on what she would find that would qualify as "interesting."
I hope she is planning to be aggressive in pursuit of future procedures. The CT guided biopsy sounds good-- when will that happen? I strongly hope that the future procedures will include a liquid biopsy. (Many lung cancer specialists now routinely do both a tissue and a liquid biopsy-- the liquid biopsy yields faster results, where a tissue biopsy takes weeks.) 
On this page is information about tissue biopsy, with a good explanation of the Bronchoscophy procedure. 
Deep breaths. You can do this. You will be fine. 
 
 

I'm so glad your GP responded. And, I'm very sorry you are experiencing such horrible anxiety and fear. I understand; I bet most of us do.  
I went to an urgent care place to get a chest xray since I'd been coughing.  Initially the doc who saw me dismissed the white shadow as pneumonia and sent me on my way with a handful of prescriptions. He called me as I was getting into my car and asked me to come back in. Turns out, when a radiologist looked at the scans, he was thinking something different. Two days later, a CT scan confirmed "abnormal findings," which included a 4.5 centimeter mass "suspicious for malignancy.". A consult was scheduled with a thoracic surgeon for a week later, but an ice storm pushed it off another week. Like you, I sat with my "abnormal findings" for almost two weeks. 
The diagnostic process is excruciating; there is not one lung cancer survivor who will tell you anything different. Mine started at the end of February and I had my first treatment on April 1 (April Fool's Day, which I secretly thought was a hoot.) It was a lifetime. One of the ways I coped with my feelings was by writing about the events as they happened. I hear from some people that it's been helpful to them to read. Maybe it would be for you?
I can't lie; this is terrifying. But if we all got through it, you can too. 
If it gets to be more than you can bear, you can call your GP again, as many times as you need, you can go to the emergency department and ask for help there, you can canvas friends for names of counselors or look through Psychology Today for a potential match. 
You can do this. 

I wrote about my experience with bronchoscopy. Maybe it will help? 
Hang in. One moment at a time....

Rikke! Your surgery was really a year ago? Wow. So glad you continue to do well, and so glad you’ll be in touch. 
Karen

Rikke! Your surgery was really a year ago? Wow. So glad you continue to do well, and so glad you’ll be in touch. 
Karen

Sounds like after a bit of a blip, you are moving ahead. Glad to hear this! Keep us posted.

Well, now, isn't that interesting. I've been treated for severe sleep apnea for a decade or so. I like your idea of seeing what your body can do with some solid sleep. 
 

I will be looking up the sella situation. Maybe you’ll explain the connection between that and the blood test you want?
Congrats on the rest of the MRI results!🥳

I'm so glad your GP responded. And, I'm very sorry you are experiencing such horrible anxiety and fear. I understand; I bet most of us do.  
I went to an urgent care place to get a chest xray since I'd been coughing.  Initially the doc who saw me dismissed the white shadow as pneumonia and sent me on my way with a handful of prescriptions. He called me as I was getting into my car and asked me to come back in. Turns out, when a radiologist looked at the scans, he was thinking something different. Two days later, a CT scan confirmed "abnormal findings," which included a 4.5 centimeter mass "suspicious for malignancy.". A consult was scheduled with a thoracic surgeon for a week later, but an ice storm pushed it off another week. Like you, I sat with my "abnormal findings" for almost two weeks. 
The diagnostic process is excruciating; there is not one lung cancer survivor who will tell you anything different. Mine started at the end of February and I had my first treatment on April 1 (April Fool's Day, which I secretly thought was a hoot.) It was a lifetime. One of the ways I coped with my feelings was by writing about the events as they happened. I hear from some people that it's been helpful to them to read. Maybe it would be for you?
I can't lie; this is terrifying. But if we all got through it, you can too. 
If it gets to be more than you can bear, you can call your GP again, as many times as you need, you can go to the emergency department and ask for help there, you can canvas friends for names of counselors or look through Psychology Today for a potential match. 
You can do this. 

It is the limbo that is so difficult as you and Karen are talking about.  Once you have concrete info and then steps (even if the steps are get on with life b/c b9) it is soooo much better.  I had a preinvasive breast cancer 4 years ago.  There were several weeks in between diagnosis and surgery and it was hard.  My wait in between scans to determine these lung issues has actually been easier b/c there are such long times in between I just have to get on with it.  However, for a time after each scan I'm very much preoccupied.  It is difficult.  Check out some mindfulness and relaxation guided videos on YouTube - it's amazing what you'll find for these - so much variety.  Also check out apps like Insight Timer (free), Headspace and/or CALM.  These too offer guided mindfulness, relaxation exercises of various types.  Check out green and brown noise too....  

Thank you so much Karen for weighing in, it's very appreciated. I am sure I will do better when they have determined what exactly this is and how to treat it.

I'm so glad your GP responded. And, I'm very sorry you are experiencing such horrible anxiety and fear. I understand; I bet most of us do.  
I went to an urgent care place to get a chest xray since I'd been coughing.  Initially the doc who saw me dismissed the white shadow as pneumonia and sent me on my way with a handful of prescriptions. He called me as I was getting into my car and asked me to come back in. Turns out, when a radiologist looked at the scans, he was thinking something different. Two days later, a CT scan confirmed "abnormal findings," which included a 4.5 centimeter mass "suspicious for malignancy.". A consult was scheduled with a thoracic surgeon for a week later, but an ice storm pushed it off another week. Like you, I sat with my "abnormal findings" for almost two weeks. 
The diagnostic process is excruciating; there is not one lung cancer survivor who will tell you anything different. Mine started at the end of February and I had my first treatment on April 1 (April Fool's Day, which I secretly thought was a hoot.) It was a lifetime. One of the ways I coped with my feelings was by writing about the events as they happened. I hear from some people that it's been helpful to them to read. Maybe it would be for you?
I can't lie; this is terrifying. But if we all got through it, you can too. 
If it gets to be more than you can bear, you can call your GP again, as many times as you need, you can go to the emergency department and ask for help there, you can canvas friends for names of counselors or look through Psychology Today for a potential match. 
You can do this. 

I'm so glad your GP responded. And, I'm very sorry you are experiencing such horrible anxiety and fear. I understand; I bet most of us do.  
I went to an urgent care place to get a chest xray since I'd been coughing.  Initially the doc who saw me dismissed the white shadow as pneumonia and sent me on my way with a handful of prescriptions. He called me as I was getting into my car and asked me to come back in. Turns out, when a radiologist looked at the scans, he was thinking something different. Two days later, a CT scan confirmed "abnormal findings," which included a 4.5 centimeter mass "suspicious for malignancy.". A consult was scheduled with a thoracic surgeon for a week later, but an ice storm pushed it off another week. Like you, I sat with my "abnormal findings" for almost two weeks. 
The diagnostic process is excruciating; there is not one lung cancer survivor who will tell you anything different. Mine started at the end of February and I had my first treatment on April 1 (April Fool's Day, which I secretly thought was a hoot.) It was a lifetime. One of the ways I coped with my feelings was by writing about the events as they happened. I hear from some people that it's been helpful to them to read. Maybe it would be for you?
I can't lie; this is terrifying. But if we all got through it, you can too. 
If it gets to be more than you can bear, you can call your GP again, as many times as you need, you can go to the emergency department and ask for help there, you can canvas friends for names of counselors or look through Psychology Today for a potential match. 
You can do this. 

I'm so glad your GP responded. And, I'm very sorry you are experiencing such horrible anxiety and fear. I understand; I bet most of us do.  
I went to an urgent care place to get a chest xray since I'd been coughing.  Initially the doc who saw me dismissed the white shadow as pneumonia and sent me on my way with a handful of prescriptions. He called me as I was getting into my car and asked me to come back in. Turns out, when a radiologist looked at the scans, he was thinking something different. Two days later, a CT scan confirmed "abnormal findings," which included a 4.5 centimeter mass "suspicious for malignancy.". A consult was scheduled with a thoracic surgeon for a week later, but an ice storm pushed it off another week. Like you, I sat with my "abnormal findings" for almost two weeks. 
The diagnostic process is excruciating; there is not one lung cancer survivor who will tell you anything different. Mine started at the end of February and I had my first treatment on April 1 (April Fool's Day, which I secretly thought was a hoot.) It was a lifetime. One of the ways I coped with my feelings was by writing about the events as they happened. I hear from some people that it's been helpful to them to read. Maybe it would be for you?
I can't lie; this is terrifying. But if we all got through it, you can too. 
If it gets to be more than you can bear, you can call your GP again, as many times as you need, you can go to the emergency department and ask for help there, you can canvas friends for names of counselors or look through Psychology Today for a potential match. 
You can do this. 

I'm so glad your GP responded. And, I'm very sorry you are experiencing such horrible anxiety and fear. I understand; I bet most of us do.  
I went to an urgent care place to get a chest xray since I'd been coughing.  Initially the doc who saw me dismissed the white shadow as pneumonia and sent me on my way with a handful of prescriptions. He called me as I was getting into my car and asked me to come back in. Turns out, when a radiologist looked at the scans, he was thinking something different. Two days later, a CT scan confirmed "abnormal findings," which included a 4.5 centimeter mass "suspicious for malignancy.". A consult was scheduled with a thoracic surgeon for a week later, but an ice storm pushed it off another week. Like you, I sat with my "abnormal findings" for almost two weeks. 
The diagnostic process is excruciating; there is not one lung cancer survivor who will tell you anything different. Mine started at the end of February and I had my first treatment on April 1 (April Fool's Day, which I secretly thought was a hoot.) It was a lifetime. One of the ways I coped with my feelings was by writing about the events as they happened. I hear from some people that it's been helpful to them to read. Maybe it would be for you?
I can't lie; this is terrifying. But if we all got through it, you can too. 
If it gets to be more than you can bear, you can call your GP again, as many times as you need, you can go to the emergency department and ask for help there, you can canvas friends for names of counselors or look through Psychology Today for a potential match. 
You can do this. 

I am prescribed a benzodiazepine for brain MRIs. My therapist and I discuss the dosage and other details. I don’t take any other meds that have a potential for addiction. 
I see him weekly. I’m pretty sure I wouldn’t be where I am mentally/emotionally without his help. Anxiety, grief, panic, whatever, I just take it there and work it out. The cancer center you’re working with should be able to connect you with someone, or at least give you a few leads. 
I also practice meditating. It’s been a very positive experience, and I recommend it. Here’s some information from the Harvard Medical School about the simple practice of working with your breath. Healthline also has a helpful piece which gives an overview and some ideas for getting started. 
But I think you might really find it useful to use Lungevity’s  Lung Cancer Helpline. From the website:

Hang in. This is a really unnerving and difficult process, but you can get through it. 

Keep us posted!
 

I am prescribed a benzodiazepine for brain MRIs. My therapist and I discuss the dosage and other details. I don’t take any other meds that have a potential for addiction. 
I see him weekly. I’m pretty sure I wouldn’t be where I am mentally/emotionally without his help. Anxiety, grief, panic, whatever, I just take it there and work it out. The cancer center you’re working with should be able to connect you with someone, or at least give you a few leads. 
I also practice meditating. It’s been a very positive experience, and I recommend it. Here’s some information from the Harvard Medical School about the simple practice of working with your breath. Healthline also has a helpful piece which gives an overview and some ideas for getting started. 
But I think you might really find it useful to use Lungevity’s  Lung Cancer Helpline. From the website:

Hang in. This is a really unnerving and difficult process, but you can get through it. 

Keep us posted!
 

Hello Pam. I was diagnosed with limited stage SCLC in Nov 2021. I had 4 rounds of chemo and 30 radiation treatments. I was not offered immunotherapy. I have since been reclassified as extensive stage as it was detected in my right adrenal gland (which I had radiation treatment which stabilized it) and also a few lesions to my brain which I had gamma knife radiosurgery. I have CT scans of my chest/abdomen/pelvis and MRI of my brain every 3 months. As long as your Dr is going to keep a close eye on you I don’t think you have anything to worry about. If something should pop up they will address it. Stay strong and I will keep you in my prayers.

Gaylep,
I also had anxiety during my treatment years and several years after. After my right lung resection and two subsequent thoracic surgeries, I experienced deep depression that continued throughout 3-years of chemotherapy after surgery. About midway into treatment, I found myself deeply depressed.
My GP prescribed antidepressants and also arranged counseling, and it was counseling that did the heavy lifting. This helped me establish a framework for living, accepting the mayhem of uncertainty dragging me down. Looking back, the counseling intervention was invaluable and taught me the importance of living and enjoying day-to-day life. The drugs got me to counseling but the counseling defeated depression.
Stay the course.
Tom