@godfather2- I'm not sure of the answer. I have what is called Multifocal adenocarcinoma of the lung. All my lesions begin as GGO. Some become cancerous and they grow, others don't - As you know I'm not a scientist. My kind of cancer is very slow-growing. This is called an indolent type of cancer. I consider it a type of chronic cancer that I just have to live with.
But not all are cancers.
Your questions are great and I advise you to write them down and bring your list with you to your appointment.
Also, your next CT scan will give more information and a biopsy too if that is advised. I know that this is all very upsetting and there must be a million things going through your mind, including a lot of worries. If I were you I would take each term that was in your report and google it. Information is power and the more information that you can garner the better. I found this particularly helpful when making decisions.
DO you already have a list of questions? What else would you include?
thank you , you are a wealth of info yes I have a lot of ?
I have an autoimmune which caused RP (I Tested negative for most of the auto immune)
2) my hands feet swollen/purple most of the time yet artoers and vessels are clear
3) I had covid last march2020 mild no lung issues
4) I am fatigued all the time
5) I had a scan of the lungs (ct) last 11/2020 lungs showed clear
6) although PCP said its very small its probably nothing (how do we know this)
7) GGO grow slow radiologist said rescan in 6 months (do we wait and see? do we biopsy and get aggressive)
8) GG0 seen on the scan is it solid? not solid?
thank you , you are a wealth of info yes I have a lot of ?
I have an autoimmune which caused RP (I Tested negative for most of the auto immune)
2) my hands feet swollen/purple most of the time yet artoers and vessels are clear
3) I had covid last march2020 mild no lung issues
4) I am fatigued all the time
5) I had a scan of the lungs (ct) last 11/2020 lungs showed clear
6) although PCP said its very small its probably nothing (how do we know this)
7) GGO grow slow radiologist said rescan in 6 months (do we wait and see? do we biopsy and get aggressive)
8) GG0 seen on the scan is it solid? not solid?
@godfather2- Excellent questions. However, you should see a specialist. Do some digging for yourself too. Google everything you can.on your own. All the information might drive you nuts so avoid technical stuff. This way it will give you more confidence and you will know a bit more. And it will give you ideas for more questions.
I know very little about RP. DO you wear special glasses? What is the treatment for it?
@godfather2- Please do not be alarmed. Ground glass is a description of cell change. When it is tiny like yours is, as the radiologist says, "it is likely benign." Ground Glass doesn't necessarily mean cancer. If the radiologist suspected cancer a biopsy ordered would probably be performed. Your GG is LESS than a less (sub) half-inch.
I have lung cancer and have several GG. It is a particular kind of lung cancer. If they grow more than a certain amount then they are considered cancer.
Hi merry so I met with oncologist today he said he would like to do the following : currently it’s 8mm (biopsies are done at 10mm) start blood work look at tumor markers go for another scan and come back on amine with follow up and watch for 2 years , how does that sound ? He sounded very optimistic
@godfather2- Good morning. This sounds like very good advice. But, I'm a bit confused. What is amine? Are you on medicine with ammonia? Also, how often will you be scanned?
@godfather2- Good morning. This sounds like very good advice. But, I'm a bit confused. What is amine? Are you on medicine with ammonia? Also, how often will you be scanned?
I took a look at the lung scan posted on this page. It looks very much like mine, and if I live a few more years with my Gelsolin / GSN (AGel AKA: Finnish Amyloidosis) it will kill me as it develops. My Amyloid fibrils are invading various tissues of my body, especially the organs, including the heart, lungs, brain thyroid, prostate, pancreas, etc. If that is what this is, don't worry about it. Treatments are slow in coming along, but the disease itself is very slow. Death comes when some organ or other can no longer function because of the invasion itself as it swells up the tissues of the organs, particularly the heart and lungs. Ambry and other groups can easily check now for GSN. It is quite rare, perhaps one in 2,000,000, especially if one has FKTN in the mix. FKTN muscular dystrophy seems to be a part of the GSN syndrome somehow.
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Thanks , fir the info is GGO normally associated with cancer or like a ore cursor to one ?
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1 Reaction@godfather2- I'm not sure of the answer. I have what is called Multifocal adenocarcinoma of the lung. All my lesions begin as GGO. Some become cancerous and they grow, others don't - As you know I'm not a scientist. My kind of cancer is very slow-growing. This is called an indolent type of cancer. I consider it a type of chronic cancer that I just have to live with.
But not all are cancers.
Your questions are great and I advise you to write them down and bring your list with you to your appointment.
Also, your next CT scan will give more information and a biopsy too if that is advised. I know that this is all very upsetting and there must be a million things going through your mind, including a lot of worries. If I were you I would take each term that was in your report and google it. Information is power and the more information that you can garner the better. I found this particularly helpful when making decisions.
DO you already have a list of questions? What else would you include?
-
Like -
Helpful -
Hug
2 Reactionsthank you , you are a wealth of info yes I have a lot of ?
I have an autoimmune which caused RP (I Tested negative for most of the auto immune)
2) my hands feet swollen/purple most of the time yet artoers and vessels are clear
3) I had covid last march2020 mild no lung issues
4) I am fatigued all the time
5) I had a scan of the lungs (ct) last 11/2020 lungs showed clear
6) although PCP said its very small its probably nothing (how do we know this)
7) GGO grow slow radiologist said rescan in 6 months (do we wait and see? do we biopsy and get aggressive)
8) GG0 seen on the scan is it solid? not solid?
are these good ? feel free to add
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2 Reactions@godfather2- Excellent questions. However, you should see a specialist. Do some digging for yourself too. Google everything you can.on your own. All the information might drive you nuts so avoid technical stuff. This way it will give you more confidence and you will know a bit more. And it will give you ideas for more questions.
I know very little about RP. DO you wear special glasses? What is the treatment for it?
Merry
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2 ReactionsHi merry so I met with oncologist today he said he would like to do the following : currently it’s 8mm (biopsies are done at 10mm) start blood work look at tumor markers go for another scan and come back on amine with follow up and watch for 2 years , how does that sound ? He sounded very optimistic
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Like -
Helpful -
Hug
2 Reactions@godfather2- Good morning. This sounds like very good advice. But, I'm a bit confused. What is amine? Are you on medicine with ammonia? Also, how often will you be scanned?
That way a typo meant June
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1 Reaction@godfather2- This sounds good to me! Are you comfortable with it?
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1 ReactionI took a look at the lung scan posted on this page. It looks very much like mine, and if I live a few more years with my Gelsolin / GSN (AGel AKA: Finnish Amyloidosis) it will kill me as it develops. My Amyloid fibrils are invading various tissues of my body, especially the organs, including the heart, lungs, brain thyroid, prostate, pancreas, etc. If that is what this is, don't worry about it. Treatments are slow in coming along, but the disease itself is very slow. Death comes when some organ or other can no longer function because of the invasion itself as it swells up the tissues of the organs, particularly the heart and lungs. Ambry and other groups can easily check now for GSN. It is quite rare, perhaps one in 2,000,000, especially if one has FKTN in the mix. FKTN muscular dystrophy seems to be a part of the GSN syndrome somehow.
Yes , he said he was very optimistic but cautious at the same time what do you think about his approach
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