Karen_L

Hi, Sue.
What happens if it comes back so soon after treatment? You take the next step. And tell us about it!
Karen
 
 

Hi, Sue.
What happens if it comes back so soon after treatment? You take the next step. And tell us about it!
Karen
 
 

Those dark moments of the night once made me invest in a night light. (No kidding.) 
Glad you're going to have a conversation with your PCP. Just know that s/he probably doesn't have the specialized knowledge you need at this point. 
Lung cancer is exploding in terms of new research and treatments; you really want a lung cancer specialist to see all the tests you've had and talk about the next step(s). Perhaps your PCP could connect you to one? 
Here's hoping you have a wonderful visit with your daughter this Thanksgiving.

Those dark moments of the night once made me invest in a night light. (No kidding.) 
Glad you're going to have a conversation with your PCP. Just know that s/he probably doesn't have the specialized knowledge you need at this point. 
Lung cancer is exploding in terms of new research and treatments; you really want a lung cancer specialist to see all the tests you've had and talk about the next step(s). Perhaps your PCP could connect you to one? 
Here's hoping you have a wonderful visit with your daughter this Thanksgiving.

Hi, Sue.
What happens if it comes back so soon after treatment? You take the next step. And tell us about it!
Karen
 
 

Those dark moments of the night once made me invest in a night light. (No kidding.) 
Glad you're going to have a conversation with your PCP. Just know that s/he probably doesn't have the specialized knowledge you need at this point. 
Lung cancer is exploding in terms of new research and treatments; you really want a lung cancer specialist to see all the tests you've had and talk about the next step(s). Perhaps your PCP could connect you to one? 
Here's hoping you have a wonderful visit with your daughter this Thanksgiving.

Hi, Sue.
What happens if it comes back so soon after treatment? You take the next step. And tell us about it!
Karen
 
 

Hi, Sue.
What happens if it comes back so soon after treatment? You take the next step. And tell us about it!
Karen
 
 

Those dark moments of the night once made me invest in a night light. (No kidding.) 
Glad you're going to have a conversation with your PCP. Just know that s/he probably doesn't have the specialized knowledge you need at this point. 
Lung cancer is exploding in terms of new research and treatments; you really want a lung cancer specialist to see all the tests you've had and talk about the next step(s). Perhaps your PCP could connect you to one? 
Here's hoping you have a wonderful visit with your daughter this Thanksgiving.

Glad to hear that the lesion is shrinking and hope it will more with the next MRI. I had gamma knife last week for a 5mm lesion on my right temporal lobe, also another small one detected with MRI the morning of my procedure. I will have follow up MRI in two months.

"Stable" is such a lovely word. "Lymph node" is not always, depending on what is happening with it. No matter what happens, the hardest thing for me is to live in the moment, aware of exactly what is around me that second, and to NOT let myself get outside of those parameters. 
Researchers learn more and more about lung cancer each day. Unfortunately, they have not (yet) learned to predict the future of anyone's lung cancer. I would love to say, "Don't worry, it will be fine," because neither I nor anyone else can say that with certainty. What I can say with complete confidence is that you can learn to manage the scanxiety and fear. You can live a rich and beautiful today, and you can string days and days and days together-- I know someone who has lived with Stage 4 for more than 14 years. 
Please hang in; please keep us posted.
K

"Stable" is such a lovely word. "Lymph node" is not always, depending on what is happening with it. No matter what happens, the hardest thing for me is to live in the moment, aware of exactly what is around me that second, and to NOT let myself get outside of those parameters. 
Researchers learn more and more about lung cancer each day. Unfortunately, they have not (yet) learned to predict the future of anyone's lung cancer. I would love to say, "Don't worry, it will be fine," because neither I nor anyone else can say that with certainty. What I can say with complete confidence is that you can learn to manage the scanxiety and fear. You can live a rich and beautiful today, and you can string days and days and days together-- I know someone who has lived with Stage 4 for more than 14 years. 
Please hang in; please keep us posted.
K

I'm sure that ageism is a factor in treating a patient's cancer-- for some doctors. The bottom line: no matter what the reason, we deserve to have doctors who will work with us, in a way each of us feels good about for ourselves. Fore me, that means a combination of care and respect.
When you said the oncologist doesn't consult with other doctors and that he said there was no point in further exploration, I was appalled. This is not somebody who is ageist, he's simply not up to date. If he is not actively engaged in the lung cancer research arena, even just to try to keep up with it, he is worthless to you as an oncologist. (Sorry to sound harsh, but I don't think we have time to be nice.) 
I, too, have a radiologist who is gold. I always have her review scans, even if she hasn't ordered them, because she is so good at it. I think this keeps both oncologist and radiologist on their toes. 
Right now, I think you are never "too far along treatment-wise" to seek another opinion or another doctor. Go for it!!!!
Karen

I'm sure that ageism is a factor in treating a patient's cancer-- for some doctors. The bottom line: no matter what the reason, we deserve to have doctors who will work with us, in a way each of us feels good about for ourselves. Fore me, that means a combination of care and respect.
When you said the oncologist doesn't consult with other doctors and that he said there was no point in further exploration, I was appalled. This is not somebody who is ageist, he's simply not up to date. If he is not actively engaged in the lung cancer research arena, even just to try to keep up with it, he is worthless to you as an oncologist. (Sorry to sound harsh, but I don't think we have time to be nice.) 
I, too, have a radiologist who is gold. I always have her review scans, even if she hasn't ordered them, because she is so good at it. I think this keeps both oncologist and radiologist on their toes. 
Right now, I think you are never "too far along treatment-wise" to seek another opinion or another doctor. Go for it!!!!
Karen

I love how they can find teeny unexpected stuff and obliterate it. I had gamma knife in March '22 and my scans have been clear since then. I wish the same for you. 
Karen

I'm sure that ageism is a factor in treating a patient's cancer-- for some doctors. The bottom line: no matter what the reason, we deserve to have doctors who will work with us, in a way each of us feels good about for ourselves. Fore me, that means a combination of care and respect.
When you said the oncologist doesn't consult with other doctors and that he said there was no point in further exploration, I was appalled. This is not somebody who is ageist, he's simply not up to date. If he is not actively engaged in the lung cancer research arena, even just to try to keep up with it, he is worthless to you as an oncologist. (Sorry to sound harsh, but I don't think we have time to be nice.) 
I, too, have a radiologist who is gold. I always have her review scans, even if she hasn't ordered them, because she is so good at it. I think this keeps both oncologist and radiologist on their toes. 
Right now, I think you are never "too far along treatment-wise" to seek another opinion or another doctor. Go for it!!!!
Karen

I love how they can find teeny unexpected stuff and obliterate it. I had gamma knife in March '22 and my scans have been clear since then. I wish the same for you. 
Karen

I love how they can find teeny unexpected stuff and obliterate it. I had gamma knife in March '22 and my scans have been clear since then. I wish the same for you. 
Karen

Hi Phyllis, and thank you for your great work in raising awareness. 
I have compound mutations also, one of which is an Exon 20 point mutation (S768i). I've encountered one other person with this mutation.  Luckily my other is garden variety EGFR L858R, for which there are some targeted treatments. 
If you have an Exon 20 insertion, you've probably heard about this. 
Also, you may already be a part of Marcia Horn's Exon 20 Facebook group. She's amazing. (Because I have a point mutation, I don't qualify. 🤷‍♀️ ) But you might want to check it out if you haven't already.
Best,
Karen

Jim, 
So sorry to hear your wife and you are going through this. Here's hoping someone here has some experiences to share.  Just wanted to say Welcome. 
Karen

Hi Sam, 
Sorry you have to be here, but it's a good place to land. I don't have any experience with the stuff you're asking about, but wanted to welcome you anyway!
Karen

Hi Phyllis, and thank you for your great work in raising awareness. 
I have compound mutations also, one of which is an Exon 20 point mutation (S768i). I've encountered one other person with this mutation.  Luckily my other is garden variety EGFR L858R, for which there are some targeted treatments. 
If you have an Exon 20 insertion, you've probably heard about this. 
Also, you may already be a part of Marcia Horn's Exon 20 Facebook group. She's amazing. (Because I have a point mutation, I don't qualify. 🤷‍♀️ ) But you might want to check it out if you haven't already.
Best,
Karen

Jim, 
So sorry to hear your wife and you are going through this. Here's hoping someone here has some experiences to share.  Just wanted to say Welcome. 
Karen

Hi Sam, 
Sorry you have to be here, but it's a good place to land. I don't have any experience with the stuff you're asking about, but wanted to welcome you anyway!
Karen

Yay for Cancun and drinks with tiny umbrellas. Enjoy!