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.

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

@merpreb

@meka – Good morning, It looks like your multi-focal is traveling the normal route. Somehow our lungs just love making these. After my second operation, I have had 2 targeted radiations. One was proton beam surgery (it is radiation) and photon radiation. They are a breeze and can get to places when surgeries can't be done. Here are my two stories if you care to read them.
https://my20yearscancer.com/thoracic-radiation-treatment/
https://my20yearscancer.com/first-rest-interval-and-second-treatment/

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Wow, thanks for sharing again. Read some of the articles and now I'm wondering what are the questions that need to be addressed. Is this out-patient, follow up, after affects, what if recurrence, even more impossible for any future treatments.????
Been doing so good with my mental health issues and I have a real sinking feeling right now.
Also how do you explain any of this to others, hard enough getting anyone to understand the nature of the disease to start with.

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@merpreb

@meka wishes to share her message, which came to me via a PM:
Hi, just to let you know, over here at Mayo (Rochester) for my 6th month check. Had CT, then PET, pulmonary check. One of my "spots" has increased since September, but so close to previous surgery it would pose other problems. Want me to go through targeted short course radiation treatment. Appointment Monday for consultation. Am not prepared for a longer stay and by myself again. Will move to Centerstone Plaza tomorrow where I can cook and take the shuttle this weekend to thrift store and grocery store..
No pity party intended, just always come prepared. I packed for three quick days. Everyone is impressed with how good I look compared to last September, am off everything except sertraline and blood pressure. Head wise okay, but already miss my Summitt and Bumpkin so much!! Will continue to try keeping up with the walking group. Haven't been getting posts from multi focal group.. maybe there is someone who has had this treatment????

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Thanks for posting for me Merry. A lot to throw out there, but my brain is always ahead of my texts. Hope everyone is doing ok and would love to hear from you all!!

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@merpreb

@meka wishes to share her message, which came to me via a PM:
Hi, just to let you know, over here at Mayo (Rochester) for my 6th month check. Had CT, then PET, pulmonary check. One of my "spots" has increased since September, but so close to previous surgery it would pose other problems. Want me to go through targeted short course radiation treatment. Appointment Monday for consultation. Am not prepared for a longer stay and by myself again. Will move to Centerstone Plaza tomorrow where I can cook and take the shuttle this weekend to thrift store and grocery store..
No pity party intended, just always come prepared. I packed for three quick days. Everyone is impressed with how good I look compared to last September, am off everything except sertraline and blood pressure. Head wise okay, but already miss my Summitt and Bumpkin so much!! Will continue to try keeping up with the walking group. Haven't been getting posts from multi focal group.. maybe there is someone who has had this treatment????

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@merpreb just saw this. I will be traveling up to Rochester next week for my CT scan on the 19th. That is where I had my SBRT done in September. Sending you positive vibes that all goes well. It was actually so much better than I expected. Did experience a tightness feeling above my chest which lasted for probably 4 months. I am hoping all is well and I won’t need any mor radiation for the area they are following.

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I might still be here Linda, consult Monday with radiology. Dr. Said .Short term targeted radiation. Something more to learn about. Of course I planned on a very short trip this time, should have listened to my gut!! Thank goodness, where I'm staying has weekend shuttle, so off to the thrift store 😊 and a bit of groceries!! Best of luck!!

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@meka

I might still be here Linda, consult Monday with radiology. Dr. Said .Short term targeted radiation. Something more to learn about. Of course I planned on a very short trip this time, should have listened to my gut!! Thank goodness, where I'm staying has weekend shuttle, so off to the thrift store 😊 and a bit of groceries!! Best of luck!!

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@meka maybe we will cross paths. Is your Dr in the Charlton Building? That’s where I had my SBRT.

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@linda10

@meka maybe we will cross paths. Is your Dr in the Charlton Building? That’s where I had my SBRT.

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I have a consult in the Jacobson Building Monday with a Dr. dawn Owen. My surgeon was there at Charlton.

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@meka

Wow, thanks for sharing again. Read some of the articles and now I'm wondering what are the questions that need to be addressed. Is this out-patient, follow up, after affects, what if recurrence, even more impossible for any future treatments.????
Been doing so good with my mental health issues and I have a real sinking feeling right now.
Also how do you explain any of this to others, hard enough getting anyone to understand the nature of the disease to start with.

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Nancy (shorthshot) You do not need to explain anything to anyone if you don't want to. The battle you are in is bad enough to handle, without trying to explaining anything. I have two kinds of lung cancer… Not fun.. Drain one lung, and then try to stop the bleeding of the other one is stressful enough on one's sickie . Besides Most of the time no one cares what is going on with your illness. At least thats how I feel, Maybe it's my age. I will be 87 next week. Nancy

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@shortshot80

Nancy (shorthshot) You do not need to explain anything to anyone if you don't want to. The battle you are in is bad enough to handle, without trying to explaining anything. I have two kinds of lung cancer… Not fun.. Drain one lung, and then try to stop the bleeding of the other one is stressful enough on one's sickie . Besides Most of the time no one cares what is going on with your illness. At least thats how I feel, Maybe it's my age. I will be 87 next week. Nancy

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Nancy, you are an inspiration, a survivor, us youngsters need people like you to remind us there is life after, during, and beyond cancer!!!!

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@meka @linda10 It must be Mayo week- we leave tomorrow for my 2 year check on Monday. Hilton and Gonda for tests and appt. in am and then an unrelated check in the Eisenberg in the afternoon.

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@bluelagoon

@meka @linda10 It must be Mayo week- we leave tomorrow for my 2 year check on Monday. Hilton and Gonda for tests and appt. in am and then an unrelated check in the Eisenberg in the afternoon.

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@bluelagoon Wow! Best wishes on your tests! Nothing personal but I hope you are long gone by Wednesday when we will arrive 😊

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@bluelagoon

@meka @linda10 It must be Mayo week- we leave tomorrow for my 2 year check on Monday. Hilton and Gonda for tests and appt. in am and then an unrelated check in the Eisenberg in the afternoon.

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@bluelagoon safe travels and may your visit be short!!

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@meka

Wow, thanks for sharing again. Read some of the articles and now I'm wondering what are the questions that need to be addressed. Is this out-patient, follow up, after affects, what if recurrence, even more impossible for any future treatments.????
Been doing so good with my mental health issues and I have a real sinking feeling right now.
Also how do you explain any of this to others, hard enough getting anyone to understand the nature of the disease to start with.

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@meka, @sakota9, @linda10, @bluelagoon– Hello! It warms my heart that we are all together here! It must be a Mayo meet-up for sure. lol
My next CT scan won't be until mid-June. I'm hoping to be in Rochester in early June for the mentor meet-up but because of the virus, I will have to wait and see. You all sound upbeat. I'm in self-isolation. RI now has 20 cases of COVID-19 and within 30 minutes of me!
I found my SBRT a breeze compare to surgery but the recovery time is about 6 months for me. I really had to take it easy- nothing strenuous. But that might be because I have so much lung tissue damage.
Linda was the recovery from SBRT difficult for you? I was some tired!

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