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/

@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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@meka

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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@meka– Check this out! https://www.verywellhealth.com/what-is-sbrt-2249187 now you will have more vocab to learn!
Hey, all this new vocab will keep us sharper and that's what we are supposed to do as we get older, right? 🙂

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@merpreb

@meka– Check this out! https://www.verywellhealth.com/what-is-sbrt-2249187 now you will have more vocab to learn!
Hey, all this new vocab will keep us sharper and that's what we are supposed to do as we get older, right? 🙂

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Good stuff 👍, will be sharing!!!

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@merpreb

@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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@merpreb I just got back to our hotel. The area we’ve been watching is still growing even though the past uptakes on PET in September and December were very low. I’m scheduled for another PET in the morning. I’ve never seen the Mayo so empty. I’m glad I came up. 🤞we can get this area resolved this trip. I am also hoping @meka is doing well.

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@linda10

@merpreb I just got back to our hotel. The area we’ve been watching is still growing even though the past uptakes on PET in September and December were very low. I’m scheduled for another PET in the morning. I’ve never seen the Mayo so empty. I’m glad I came up. 🤞we can get this area resolved this trip. I am also hoping @meka is doing well.

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@linda10. Hi. Are you exhausted? I wish there was a way to stop the growth of these things. I have 2 areas they are keeping an eye on. I'm with you and I wonder what it will show tomorrow and what will be done. Hugs
I think that only essential testing and treatments/ surgeries are happening across the country. What are you doing about meals?

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@linda10

@merpreb I just got back to our hotel. The area we’ve been watching is still growing even though the past uptakes on PET in September and December were very low. I’m scheduled for another PET in the morning. I’ve never seen the Mayo so empty. I’m glad I came up. 🤞we can get this area resolved this trip. I am also hoping @meka is doing well.

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Hi Linda, wondering how you were doing. I start radiation at Charlton at 3 today, tomorrow and 3days next week. Maybe we can see some sunshine 🌞 this weekend!!

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@meka

Hi Linda, wondering how you were doing. I start radiation at Charlton at 3 today, tomorrow and 3days next week. Maybe we can see some sunshine 🌞 this weekend!!

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@meka I’m so happy you were able to get your SBRT started today. Isn’t it amazing how fast and easy it is. That’s where I had my SBRT was at Charlton. Best wishes to you. I’m feeling happy to have made it up before they ramp down. Keep in touch!

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@merpreb

@linda10. Hi. Are you exhausted? I wish there was a way to stop the growth of these things. I have 2 areas they are keeping an eye on. I'm with you and I wonder what it will show tomorrow and what will be done. Hugs
I think that only essential testing and treatments/ surgeries are happening across the country. What are you doing about meals?

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@merpreb I’m feeling fine! I know it’s frustrating that they never seem to stop. But I’m happy that they’re able to treat them. So many others never had that option

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@linda10

@merpreb I’m feeling fine! I know it’s frustrating that they never seem to stop. But I’m happy that they’re able to treat them. So many others never had that option

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So happy! Stable. Heading home. Back in 3 months. Best wishes to all.

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@linda10

So happy! Stable. Heading home. Back in 3 months. Best wishes to all.

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Linda- Yahoo! Please stay in touch

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