Is my Lung Disease Stable or Unstable or NED?

Posted by Merry, Volunteer Mentor @merpreb, Jan 16, 2019

Hello- Having multifocal adenocarcinoma of the lung in both lungs, I am considered a stage 4 lung cancer. However I do not always have an active cancer. Sometimes all my little nodules are very indolent or not active at all. That is considered stable. When I had my first lobectomy on my lower right lobe I was cancer free for 10 years. I was the big NED! I thought that I was cured. He “got it all out” End of story. But 10 years later I not only had cancer but it was comprised of 3 tumors. They were all considered primary adenocarcinomas – they had a different cell make up and size. What! That’s when my life changed to unstable. I went from NED to Chronic.
Here is an excellent article about advanced lung cancers:

https://lungcancer.net/living/should-i-be-happy-if-i-have-stable-disease/

Merry, I have been thinking about you. It's February and I know you said your scan is coming up. Hoping for stable for you.

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Good morning @linda10– Thank you for thinking about me! I've been thinking about you too. Yes, this coming Thursday and yesterday my mood changed- I am very anxious. How are you?

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@merpreb

Good morning @linda10– Thank you for thinking about me! I've been thinking about you too. Yes, this coming Thursday and yesterday my mood changed- I am very anxious. How are you?

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I’m doing well. I am going in on April 1. 1st time ever less than 6 months. Again there’s nothing we can do. Just stay positive and know that we’re thinking of you and wishing the best for you.

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awwww @linda10 thank you so much. Glad that you are doing well! Stay that way. Why less than 6 mos.?

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Watching a denser area in the right lower lobe and an area by my last 2 surgeries.

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@ I have several areas in my left lung and right upper

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Hello Merry – Thank you for the link to this article. I had never considered that there could be a determination of 'stable' disease in lung cancer. It's gives me something extra to consider with my husband's lung tumor. Again, it's not diagnosed specifically as lung cancer but then it's only in his lung….so…..maybe this 'stable' designation is something new to consider. I'm sorry your cancer is active again. Hugs to you.

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@cindylb– You are very welcome. With the type of lung cancer that I have there is always some areas that need watching- that's the purpose of CT scans. As far as I know there isn't anything new or active again, but some spots worth following. Thank you

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@linda10

Merry, I have been thinking about you. It's February and I know you said your scan is coming up. Hoping for stable for you.

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Merry you’ve been on my mind all day. Have you received your results yet?

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@linda10– Good morning Linda. It's been a long time since we've spoken. How have you been since we last spoke? Do you have anything concerning you now? How have your scans been?

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@merpreb

@linda10– Good morning Linda. It's been a long time since we've spoken. How have you been since we last spoke? Do you have anything concerning you now? How have your scans been?

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@merry thank you for asking. In August my surgeon sent me on to radiology because he can no longer do any more surgery on my lower lungs because of scar tissue. It was actually a very scary time for me as I have been with him exactly 9 years today and I had to move on to the unknown. I underwent SBRT radiation on an area in September. We were watching another area that grew in size but no difference in PET uptake from September to December. I’m waiting to see how my new Dr wants to proceed.

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@linda10

@merry thank you for asking. In August my surgeon sent me on to radiology because he can no longer do any more surgery on my lower lungs because of scar tissue. It was actually a very scary time for me as I have been with him exactly 9 years today and I had to move on to the unknown. I underwent SBRT radiation on an area in September. We were watching another area that grew in size but no difference in PET uptake from September to December. I’m waiting to see how my new Dr wants to proceed.

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@linda10– Hi! So glad that you wrote me back. When my surgeon told me that I had to move to a radiologist I was also scared! I felt that I was being abandoned. But then I thought, I had full faith in my surgeon, who also had become my friend. I had to trust his judgment. And I did. I love my radiologist! He's the best and has done tons of research on Multifocal adenocarcinomas. I've had SBRT twice. How did you find SBRT? It was a piece of cake compared to surgery, I think!
I think that we have to be on our toes, to expect that down the line we will get more lesions and just take each one as they come. Emotionally, as you well know that's not very easy. With multifocal Adeno. it's always a crapshoot. Should our doctors take more lung tissue through surgery or see if less can be taken by being zapped. My radiologist, oncologist, and surgeon are my team now. There is a consultation after each scan and a decision made. I have two possible lesions that might need to be zapped and lots and lots of little baby lesions.
I hope that you hear soon from your doctor. I hope that you will stay on this thread so that this small group can stay in touch and support each other! Will you let me know what your Dr's decision is and what you decide to do?

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@merpreb

@linda10– Hi! So glad that you wrote me back. When my surgeon told me that I had to move to a radiologist I was also scared! I felt that I was being abandoned. But then I thought, I had full faith in my surgeon, who also had become my friend. I had to trust his judgment. And I did. I love my radiologist! He's the best and has done tons of research on Multifocal adenocarcinomas. I've had SBRT twice. How did you find SBRT? It was a piece of cake compared to surgery, I think!
I think that we have to be on our toes, to expect that down the line we will get more lesions and just take each one as they come. Emotionally, as you well know that's not very easy. With multifocal Adeno. it's always a crapshoot. Should our doctors take more lung tissue through surgery or see if less can be taken by being zapped. My radiologist, oncologist, and surgeon are my team now. There is a consultation after each scan and a decision made. I have two possible lesions that might need to be zapped and lots and lots of little baby lesions.
I hope that you hear soon from your doctor. I hope that you will stay on this thread so that this small group can stay in touch and support each other! Will you let me know what your Dr's decision is and what you decide to do?

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@merpreb sorry, I should’ve added that I have a CT scan and follow up with my Dr on the 19th at Mayo. As I’m wishing for @bluelagoon I’m hoping for a short stay. My husband was diagnosed with RA in September and also has his appointment. Nice thing about Mayo as they work us both in together. My area they are watch has grown but the uptake on the PET has not. I will
Post again when I know more. I realize we are a small group those of us with multifocal. As frustrating as that may be at times, in many ways we are very lucky 🍀.

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Wish we all could have short stays. Thanks for sharing about radiation, gives me hope! Now I have a whole new lingo to learn!

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@linda10

@merpreb sorry, I should’ve added that I have a CT scan and follow up with my Dr on the 19th at Mayo. As I’m wishing for @bluelagoon I’m hoping for a short stay. My husband was diagnosed with RA in September and also has his appointment. Nice thing about Mayo as they work us both in together. My area they are watch has grown but the uptake on the PET has not. I will
Post again when I know more. I realize we are a small group those of us with multifocal. As frustrating as that may be at times, in many ways we are very lucky 🍀.

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@linda10– I know what you mean. Your doctors might wait to see what happens in 3 months for another PET or maybe do a biopsy?
@meka, @linda10, @bluelagoon– I found this the day while searching for the latest news for Multi-focal.
http://jtd.amegroups.com/article/view_ests/12902/html

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