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Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Alumni 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.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

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Merry, Alumni Mentor | @merpreb | Sep 21, 2020
In reply to @linda10 "@meka Yes, I agree it can get costly. We travel with our 2 pups so we..." + (show)
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@meka Yes, I agree it can get costly. We travel with our 2 pups so we either stay at La Quinta or bring our RV and stay at Autumn Woods RV Park, which is where we are presently. We were able to leave the RV and go back home for the days in between our visits.

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@meka- Is there A Ronald McDonald house near the hospital? Here, try this https://www.rmhmn.org/

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linda10 | @linda10 | Sep 21, 2020
In reply to @meka "Curious where you stay when you have treatments. Really like where I stay, but gosh it..." + (show)
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Curious where you stay when you have treatments. Really like where I stay, but gosh it gets expensive over time.

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@meka Yes, I agree it can get costly. We travel with our 2 pups so we either stay at La Quinta or bring our RV and stay at Autumn Woods RV Park, which is where we are presently. We were able to leave the RV and go back home for the days in between our visits.

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meka | @meka | Sep 20, 2020
In reply to @merpreb "@meka- I agree with Linda about having one person coordinate your treatment plans. At MGH it's..." + (show)
Profile picture for Merry, Alumni Mentor @merpreb

@meka- I agree with Linda about having one person coordinate your treatment plans. At MGH it's my oncologist who coordinates mine but I am also in touch with my surgeon and radiologist throughout the year. When I have a meeting to go over my CT scans or MRI's my Oncologist has spoken to everyone. All three have been my team all through this. Find out from the head of the department who it should be for you, please.

You should never have had this problem. Are you at Mayo?

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Yes, I go to Mayo. Looks like my last post went up on the lung cancer posts, tried to explain what's going on with me.

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meka | @meka | Sep 20, 2020
In reply to @linda10 "@merry I live around 8 hours from the Mayo. Wouldn’t go anywhere else. I’m fine with..." + (show)
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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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Curious where you stay when you have treatments. Really like where I stay, but gosh it gets expensive over time.

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Merry, Alumni Mentor | @merpreb | Sep 20, 2020
In reply to @linda10 "@merry I live around 8 hours from the Mayo. Wouldn’t go anywhere else. I’m fine with..." + (show)
Profile picture for linda10 @linda10

@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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@linda10- Please let us know what day you start! Sending a big hug.

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alamogal635 | @alamogal635 | Sep 19, 2020
In reply to @sakota "I really need to proof read before sending" + (show)
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I really need to proof read before sending

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@sakota9 You are not alone with the proofreading need. I"m awful and found GRAMMERLY that helps with my lousy typing.

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alamogal635 | @alamogal635 | Sep 19, 2020

@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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linda10 | @linda10 | Sep 19, 2020
In reply to @merpreb "@linda10- Do you have to travel away from home for your treatments? How do you feel..." + (show)
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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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@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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Merry, Alumni Mentor | @merpreb | Sep 18, 2020
In reply to @bluelagoon "@linda10 @merry @sakota @meka @alamogal635 Linda- sending my prayers, as well! And, my amazement. I hadn't..." + (show)
Profile picture for bluelagoon @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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Merry, Alumni Mentor | @merpreb | Sep 18, 2020
In reply to @linda10 "Ok. Just heard from my Drs office. They want to do 8 treatments now. Bring it..." + (show)
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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- 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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