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.

@dexter09

I have been monitored for almost 4 years and have many many GGO and Solid nodules in every lobe of both lungs . Only one wedge resection done one year ago. Surgeon didn’t take any lymph nodes and for 3 years just monitoring even though many many new ones have popped up. Not feeling confident with any of my doctors. Would you recommend a doctor. I will travel anywhere.

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@dexter09– Welcome to Mayo Clinic Connect. I am the mentor for Lung cancer at Connect. My cancer journey began in 1997 and then 10 years later my surgeon found GGO. I go to MGH (Massachusetts General Hospital). They have a fabulous thoracic department. There are no Mayo Clinics in New England.

Multi-focal adenocarcinoma is a tough cancer because there are so many primary nodules! Thank goodness they are very slow-growing. I have many years of it under my belt. I have many little GGO too but they don't grow large enough for surgery or SBRT. Are you thinking that there should be more treatments for you?

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@dexter09

I have been monitored for almost 4 years and have many many GGO and Solid nodules in every lobe of both lungs . Only one wedge resection done one year ago. Surgeon didn’t take any lymph nodes and for 3 years just monitoring even though many many new ones have popped up. Not feeling confident with any of my doctors. Would you recommend a doctor. I will travel anywhere.

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@dexter09– Good morning. My Dr. is Henning Gaissert. This entire group of thoracic surgeons is excellent at MGH.

If you wanted to try Mayo Clinic you can contact http://mayocl.in/1mtmR63 for an appointment.

We are a small group with multifocal lung cancer.

Can I help in any other way?

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@merpreb

@dexter09– Good morning. My Dr. is Henning Gaissert. This entire group of thoracic surgeons is excellent at MGH.

If you wanted to try Mayo Clinic you can contact http://mayocl.in/1mtmR63 for an appointment.

We are a small group with multifocal lung cancer.

Can I help in any other way?

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@dexter09– Good morning. I haven't heard back from you in a few days. Have you decided which direction you are going to go with your cancer?

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@meka; @bluelagoon; @linda10; @sakota– I haven't heard from you all in a long while. I've so far escaped covid but have been very frustrated in getting vaccinated. Now I have to wait until the 6th of March which will be 2 weeks after a shingles vaccine.

My next scan is on October 7th. So far I feel great. I hope that you all do too. Have you all met @dexter09, a new member of our group?

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@linda10

@merry@sakota@bluelagoon@meka Hi all. Have been back and forth to the Mayo since September 1. CT showed scar tissue area still enlarging. Had a biopsy and it’s a recurrence. Lymph nodes were negative so that was good news. Had an MRI on my head on Tuesday which also was negative so next week will be 5 days SBRT. Everything else looks good so I’m hopeful that we can get through next week and that will hold things at bay for a while -and I mean a good long while😊. Please feel free to throw all prayers and good vibes my way. I will keep you all updated.

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@linda10; @meka;@sakota;@bluelagoon;@catlover1943 |- It's been a long, long year. I get my second vaccination this coming Sunday and a CT in October. It seems like a long time, too long since we've all talked. You are my special "ladies", living with the same cancer that I am. It's odd, this cancer and the ups and downs seem to be exaggerated because of the numbers of lesions that can pop up.

Spring is trying to lure us all outside and that just may be the ticket for a less depressing look at the future. I don't mind the current management of my cancer, set up by my team.

Is there anything different that you would change?

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@merpreb

@linda10; @meka;@sakota;@bluelagoon;@catlover1943 |- It's been a long, long year. I get my second vaccination this coming Sunday and a CT in October. It seems like a long time, too long since we've all talked. You are my special "ladies", living with the same cancer that I am. It's odd, this cancer and the ups and downs seem to be exaggerated because of the numbers of lesions that can pop up.

Spring is trying to lure us all outside and that just may be the ticket for a less depressing look at the future. I don't mind the current management of my cancer, set up by my team.

Is there anything different that you would change?

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Hello to all! I got my 1st COVID shot last week. 2nd will be on the 22nd. I have a Mayo appointment next week on the 13th. I just passed my 10 year cancerversary last month. Lots going on. Hopefully my visit will yield nothing growing. I just wish the spots would stop appearing and I could graduate to 6 month checkups. Hopefully you are all doing well and the Spring weather will lift everyone’s spirits💕

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@linda10

Hello to all! I got my 1st COVID shot last week. 2nd will be on the 22nd. I have a Mayo appointment next week on the 13th. I just passed my 10 year cancerversary last month. Lots going on. Hopefully my visit will yield nothing growing. I just wish the spots would stop appearing and I could graduate to 6 month checkups. Hopefully you are all doing well and the Spring weather will lift everyone’s spirits💕

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@linda10– Hey there! Congratulations on 10 years! That is a biggy! I am doing well. How was your reaction to the first shot?

Do you know why they are keeping you at 3-month intervals?

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@merpreb

@linda10– Hey there! Congratulations on 10 years! That is a biggy! I am doing well. How was your reaction to the first shot?

Do you know why they are keeping you at 3-month intervals?

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@merry I was just sore at the injection site for 1 day. Hopefully I will have no issues with the 2nd shot. They’ve been following me every 3 months because they continue to find new ggos to follow. I had radiation ☢️ in October for an area that was growing. In January they found a new very small ggo. I’m cautiously optimistic as always. One day at a time. So far I’ve outlived a lot of people with no cancer. I always try and be grateful every day. No one is promised tomorrow.

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@linda10

@merry I was just sore at the injection site for 1 day. Hopefully I will have no issues with the 2nd shot. They’ve been following me every 3 months because they continue to find new ggos to follow. I had radiation ☢️ in October for an area that was growing. In January they found a new very small ggo. I’m cautiously optimistic as always. One day at a time. So far I’ve outlived a lot of people with no cancer. I always try and be grateful every day. No one is promised tomorrow.

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@linda10– Isn't that the truth. Good for you. I have two I think that they are watching but a lot of dots that I don't want to be crossed either!

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@merpreb

@linda10– Isn't that the truth. Good for you. I have two I think that they are watching but a lot of dots that I don't want to be crossed either!

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@merry a bit late but my update is everything ok except a 2mm enlargement in a previously stable ggo. Back to the Mayo in July. As we know growth is never good with us, so we’ll see what July brings. Hope all is well with everyone.

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@linda10

@merry a bit late but my update is everything ok except a 2mm enlargement in a previously stable ggo. Back to the Mayo in July. As we know growth is never good with us, so we’ll see what July brings. Hope all is well with everyone.

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@linda10– DArn, isn't it the way with us? Perhaps a short zap will take care of it?

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@merpreb

@linda10– DArn, isn't it the way with us? Perhaps a short zap will take care of it?

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Yes, I suppose if need be. I keep hoping it will be stable🤣. One can always hope💕

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