Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Volunteer Mentor @merpreb, Dec 11, 2018

We have multifocal adenocarcinoma of the lung. @linda10 and @sakota.- Please join me in this discussion.

For a short explanation of this tongue twister. Briefly, Multifocal Adenocarcinoma (MAC) of the lung is a clinical entity of multiple synchronous (less than 6 months) or metachronous (more than 6 months), often ground-glass opacities (GGO) on CT scan, typically indolent-behaving cancers. There is a scarce amt of clinical data to guide treatment decisions.
This came from http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e20041.

This means that more than one potential cancerous lesion, mostly ground glass, shows up at a time. For instance I had 3 cancerous lesions 10 years ago in my left lung and in the same area. They were all different sizes. They grow at different rates.

Multifocal adenocarcinoma is a very complex cancer because the medical profession doesn’t know if the ground glass lesions are the primary cancer or small metastases of another primary cancer. They don’t even know where they start..

Multifocal Adenocarcinoma has sub types and it’s management is based on whether it’s indolent or very virulent.

These are very simplistic explanations. Even doctors are confused by it and it’s only been within the last twenty years that they have separated it from a Bronchioloalveolar Carcinoma (BAC).

The constant recurrences are the buggers. Not only do we have to constantly face lots of CT scans but when lung cells change, which they often do, we are in terror of another virulent cancer. I presently have several ground glass lesions. And I have had many that have disappeared. It’s enough to drive you nuts and PTSD is exacerbated by the frequency of these devils.

Thank you Merry for this in-depth discussion of lesions & nodules & the anxiety of having to have many CT scans. It helps me to figure out what questions to ask my radiologist on Thursday.

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lady1lake- you are very very welcome. Glad that it helped.

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@teresalane – Good! I quit 21 years ago. I'm going to share my blog with you. It's my story of dealing with my lung cancer. It may not have any answers for you, but you will hopefully know that you really aren't alone. https://my20yearscancer.com/
Were you having symptoms that led you to the doctors?
Have you seen an oncologist or maybe a second opinion?

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All- I have found the following links to help us maybe understand a bit more about our disease, multifocal adenocarcinoma of the lung. It's overwhelming, scary and very hard to understand. And there are few answers, with lots of questions. Right now researchers are trying to figure out if the nodules are little metastases or primaries, along with a million other things. I have several. Some might be cancerous, but are too small to biopsy or treat. Some come and then go. Some grow and then shrink. An oncologist once told me that my lungs loved to grow things. "Thanks"
Whatever this disease is the one thing it does do is test out patience. It's a sort of lifelong haze of wondering- do I or don't I have cancers growing in my lungs, and how many? Can they be removed or zapped or chemically killed?
I can only relate my story and give out suggestions. I'm not a doctor and can not give medical advice.
https://www.verywellhealth.com/multiple-lung-nodules-causes-and-diagnosis-2249390
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5906316/
https://www.dovepress.com/new-horizons-in-surgical-treatment-of-ground-glass-nodules-of-the-lung-peer-reviewed-fulltext-article-TCRM
https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445

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@merpreb

All- I have found the following links to help us maybe understand a bit more about our disease, multifocal adenocarcinoma of the lung. It's overwhelming, scary and very hard to understand. And there are few answers, with lots of questions. Right now researchers are trying to figure out if the nodules are little metastases or primaries, along with a million other things. I have several. Some might be cancerous, but are too small to biopsy or treat. Some come and then go. Some grow and then shrink. An oncologist once told me that my lungs loved to grow things. "Thanks"
Whatever this disease is the one thing it does do is test out patience. It's a sort of lifelong haze of wondering- do I or don't I have cancers growing in my lungs, and how many? Can they be removed or zapped or chemically killed?
I can only relate my story and give out suggestions. I'm not a doctor and can not give medical advice.
https://www.verywellhealth.com/multiple-lung-nodules-causes-and-diagnosis-2249390
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5906316/
https://www.dovepress.com/new-horizons-in-surgical-treatment-of-ground-glass-nodules-of-the-lung-peer-reviewed-fulltext-article-TCRM
https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445

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Merry, thank you for taking the time to post the important links. I read them & feel better informed.

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@lady1lake you are more than welcome. The more we learn and know the more in control we are!

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@merpreb

@teresalane – Good! I quit 21 years ago. I'm going to share my blog with you. It's my story of dealing with my lung cancer. It may not have any answers for you, but you will hopefully know that you really aren't alone. https://my20yearscancer.com/
Were you having symptoms that led you to the doctors?
Have you seen an oncologist or maybe a second opinion?

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@merpreb I had no symptoms. My mom had just passed away a few weeks earlier from lung cancer. She was diagnosed and was gone in under 4 weeks. She was the 3rd in my family to have lung cancer, although the type she and my father both passed away from is not the same as my sisters or whatever I have…so I was told. My doctor said my sister and maybe me have the "good" kind. Whatever that means.

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@teresalane– I am sincerely sorry for the loss of your parents. That must have been very difficult to watch. My mom died of Parkinson's disease and it was just heartbreaking to see her suffer and not understand what was happening.

I think that I remember you saying that. Doctors refer to NSCLC as the good kind because Adencarinoma cancer is usually much slower growing than small cell. I don't know if lung cancer can be genetic. I'll have to check on that.

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@teresalane

@merpreb I had no symptoms. My mom had just passed away a few weeks earlier from lung cancer. She was diagnosed and was gone in under 4 weeks. She was the 3rd in my family to have lung cancer, although the type she and my father both passed away from is not the same as my sisters or whatever I have…so I was told. My doctor said my sister and maybe me have the "good" kind. Whatever that means.

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@teresalane– Here is a link that hopefully will explain some of the genetic factors.https://www.cancer.org/cancer/non-small-cell-lung-cancer/causes-risks-prevention/what-causes.html

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@merpreb

@merprep I have a couple of questions about if there are groups for these and where would I look……. or direct me to someone who could. first off am still having cramps every day since last month……..and second is TMJ No problems concerning my lung cancer just tired all the time..I get a lot of projects started but don't finish them. This is probably from the copd too. Thanks

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@merpreb

All- I have found the following links to help us maybe understand a bit more about our disease, multifocal adenocarcinoma of the lung. It's overwhelming, scary and very hard to understand. And there are few answers, with lots of questions. Right now researchers are trying to figure out if the nodules are little metastases or primaries, along with a million other things. I have several. Some might be cancerous, but are too small to biopsy or treat. Some come and then go. Some grow and then shrink. An oncologist once told me that my lungs loved to grow things. "Thanks"
Whatever this disease is the one thing it does do is test out patience. It's a sort of lifelong haze of wondering- do I or don't I have cancers growing in my lungs, and how many? Can they be removed or zapped or chemically killed?
I can only relate my story and give out suggestions. I'm not a doctor and can not give medical advice.
https://www.verywellhealth.com/multiple-lung-nodules-causes-and-diagnosis-2249390
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5906316/
https://www.dovepress.com/new-horizons-in-surgical-treatment-of-ground-glass-nodules-of-the-lung-peer-reviewed-fulltext-article-TCRM
https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445

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@merpreb You are so right Merry. Everytime you go in for a ct scan its a surprise.. If you are lucky you get a stable report but next time it might not be ok, ….. time for surgery, zapped. I haven't had chemo yet , just the surgery and radiation…..

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@sakota– what do you mean groups, for what?

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@sakota

@merprep I have a couple of questions about if there are groups for these and where would I look……. or direct me to someone who could. first off am still having cramps every day since last month……..and second is TMJ No problems concerning my lung cancer just tired all the time..I get a lot of projects started but don't finish them. This is probably from the copd too. Thanks

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Joan, your mouth hurts? Oh dear. There are exercises for it. I had it and the exercises helped it.

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Joan, what types of groups are you looking for with adencarcinoma? I'm sorry I'm lost here.

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@merpreb

Joan, what types of groups are you looking for with adencarcinoma? I'm sorry I'm lost here.

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I'm sorry merry I just didn't know who else to ask , so asked you……… I'll try to find someone else……..Didn't mean to confuse you. @merprep

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