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.

@sakota and @bluelagoon– Just checking in! Hope that you are all well. @linda10 has a recurrence so let's band together, if possible, and send her all the help that we can!

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@merpreb

@linda10– Darn! At least we have SBRT now! My scar tissue from SBRT finally stopped growing so they decided not to do a biopsy.

Know that we are all here and will walk with you through all of this! I'm sure that you will breeze through this and remember to rest, rest, rest when you need to!

Is the area of scar tissue from a previous SBRT?
Merry

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@merry This is in an area of the staple line from a previous wedge section on my left lung. Last year I had SBRT on a staple line from a previous wedge section on my right lung. The area on the right is doing well. I’m very thankful they’re still able to treat us. It’s been 9 1/2 years for me and I think you’re double my time. Go Us!!!!

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@linda10– staple lines seem to be a weak spot. Next month will be 23 years! Yay us for sure!

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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 You’ve got my prayers and good vibes coming your way.

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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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Ok. Just heard from my Drs office. They want to do 8 treatments now. Bring it on as long as the insurance approves it.

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@linda10 @merry @sakota @meka @alamogal635 Linda- sending my prayers, as well! And, my amazement. I hadn't even heard of what you've experienced, but good to be in the know since I also had a wedge section on my left lung, albeit 2 years ago April. I'm amazed and heartened that treatment like this exists these days.

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@alamogal635

@linda10 You’ve got my prayers and good vibes coming your way.

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@alamogal635 Thank You! I appreciate it♥️

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@bluelagoon

@linda10 @merry @sakota @meka @alamogal635 Linda- sending my prayers, as well! And, my amazement. I hadn't even heard of what you've experienced, but good to be in the know since I also had a wedge section on my left lung, albeit 2 years ago April. I'm amazed and heartened that treatment like this exists these days.

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Bluelagoon Thank You! Yes, there are options out there. Hopefully you will never need them but nice to know they are there.

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@linda10

Ok. Just heard from my Drs office. They want to do 8 treatments now. Bring it on as long as the insurance approves it.

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@linda10– Do you have to travel away from home for your treatments? How do you feel about having to have added zap days?

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@bluelagoon

@linda10 @merry @sakota @meka @alamogal635 Linda- sending my prayers, as well! And, my amazement. I hadn't even heard of what you've experienced, but good to be in the know since I also had a wedge section on my left lung, albeit 2 years ago April. I'm amazed and heartened that treatment like this exists these days.

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@bluelagoon– I'm so glad that you have come to say hello. Treatments just seem to keep multiplying! Isn't it great!

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@merpreb

@linda10– Do you have to travel away from home for your treatments? How do you feel about having to have added zap days?

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@merry I live around 8 hours from the Mayo. Wouldn’t go anywhere else. I’m fine with the treatment. They originally said 5-8 and then scheduled 5. So it wasn’t a surprise. Just have to pull another authorization which pushes the start date back. Hopefully only 1 day.

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@merpreb This is a great discussion. I know little about it and can see hwo it would be a stressful thing to have to deal with–constantly worrying and checking to see about these GGO.

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