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.

@vic83

Here is an interesting update for multifocal lung cancer. A year ago, I had a 3.1cm stage 1b cancer removed from right lung (wedge resection). I am being monitored with usual CT scans. I had a recent CT scan which was more intense compared to the usual ones I do because of some pleurisy. This scan listed 8 lung nodules in various stages of development from pure ground glass to part solid components. The report stated that some nodules mildly increased and many likely reflect adenocarcinoma spectrum lesions. I asked about all these nodules and was advised that the nodules are treatable if we need to. If they don't grow very fast, then we may not have to do anything.

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Good morning Vic. If you looked at all of my lesions it would look like a road map across some strange country. Isn't it amazing what information we are sometimes in the dark about?

Although no cancer is good cancer, multifocal, I like to think as a chronic disease. Treatments are only used as needed. And this means that lesions are treated after they get to a certain size. It sounds as if you have a great doctor who knows about multifocal lung cancer.

Multifocal lung cancers for the most part can be very very lazy. It's a good thing, right?

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@spikeb1

I am exactly 1 month post left upper lobectomy for NSCLC and doing well. I am stage 1-all nodes removed were negative and no treatment needed at this point. I have my first CT Scan in April and praying it is okay. I wasn’t aware that reoccurrences were so common. Praying.

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Good morning spikeb1- Cancer has a mind of its own but recurrences happen with multifocal adenocarcinomas all the time. It doesn't mean that there is a need for treatment. Do you have multifocal lung cancer?

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@merpreb

Good morning spikeb1- Cancer has a mind of its own but recurrences happen with multifocal adenocarcinomas all the time. It doesn't mean that there is a need for treatment. Do you have multifocal lung cancer?

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I don’t think so? No one mentioned it.

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I am three months post op from a right lower lobectomy. Doing well and praying follow up CT in Jan will be all clear as well. I had a PET scan in October and it was clear! Praying you both have good outcomes!

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@merpreb

Good morning Vic. If you looked at all of my lesions it would look like a road map across some strange country. Isn't it amazing what information we are sometimes in the dark about?

Although no cancer is good cancer, multifocal, I like to think as a chronic disease. Treatments are only used as needed. And this means that lesions are treated after they get to a certain size. It sounds as if you have a great doctor who knows about multifocal lung cancer.

Multifocal lung cancers for the most part can be very very lazy. It's a good thing, right?

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Hi Merry. That was my reaction too. Multifocal is like chronic cancer. Maybe they should change the name?
I was fortunate because things went so fast for me. I had an abnormal chest x-ray, and 7 weeks later I was at Mayo where I was diagnosed, staged and treated all in ONE MORNING - Robotic Bronchoscopy, Endobronchial ultrasound (EBUS) for lymph nodes and VAT wedge resection surgery to remove cancer. Two days later I was home.
I put all my nodules in a spread sheet to track them from CT scan to CT scan.
That Mayo ten- year multifocal lung cancer study is out in October 2023. Wish I could get a sneak peek! They must know something now.
In February 2022, Mayo added Multifocal Lung Cancer to the list of cancers they treat on their Internet site Lung Cancer page.

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@spikeb1

I am exactly 1 month post left upper lobectomy for NSCLC and doing well. I am stage 1-all nodes removed were negative and no treatment needed at this point. I have my first CT Scan in April and praying it is okay. I wasn’t aware that reoccurrences were so common. Praying.

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Hi Spike - Sorry, I should clarify. I did not have a recurrence of my removed cancer. My nodules were not new. I started with multiple nodules. I have multifocal lung cancer which means I have multiple lung nodules which are thought to be independent cancers (but some may not be) and they are in different stages of development.
These nodules start with ground glass opacity and may develop part solid components.
My first CT scan (not at Mayo) found a nodule in each lung. Mayo removed the largest one which was a 3.1cm stage 1b cancer. The nodule in the other lung has remained stable for a year so it may not be cancer. The remaining nodules are smaller and not necessarily picked up with a common CT scan. Mayo sets it equipment to pick up the smaller nodules which is why I know how many there are. They watch for growth and in that case the nodule may be treated. They also watch for the appearance of any new nodules. Sounds terrible but I feel fine.

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@spikeb1

I don’t think so? No one mentioned it.

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Have you checked your reports especially CT scan? They would mention something.

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@vic83

Have you checked your reports especially CT scan? They would mention something.

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Thank you! I have to go back and check but recall my pulmonologist and surgeon saying that the rest were nothing. Really tiny but who knows?

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@vic83

Hi Spike - Sorry, I should clarify. I did not have a recurrence of my removed cancer. My nodules were not new. I started with multiple nodules. I have multifocal lung cancer which means I have multiple lung nodules which are thought to be independent cancers (but some may not be) and they are in different stages of development.
These nodules start with ground glass opacity and may develop part solid components.
My first CT scan (not at Mayo) found a nodule in each lung. Mayo removed the largest one which was a 3.1cm stage 1b cancer. The nodule in the other lung has remained stable for a year so it may not be cancer. The remaining nodules are smaller and not necessarily picked up with a common CT scan. Mayo sets it equipment to pick up the smaller nodules which is why I know how many there are. They watch for growth and in that case the nodule may be treated. They also watch for the appearance of any new nodules. Sounds terrible but I feel fine.

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Vic- Excellent explanation. My Oncologist said that treating this type of cancer is like a whac-a-mole. Kind of not encouraging yet not too bad either. I've had lung cancer for 25 years with a 10 yr break between my first and second. When the second hit my cancer had changed. There were three different lesions of three different sizes all in my left upper left lung. My latest one was treated at MGH (Mass General) with SBRT. I had two right next to each other and very near my heart. I feel good too.

I have had another larger one for many years in my lower left lobe. It's barely grown in more than 5 years or more. I seem not to pay attention too much to size and location after having so many lesions. It holds me back from living the best life that I have at this moment. But this is me. I'm sure that a lot of it is my emotional defense system. Everyone is so different in the way they handle cancer.

How are you doing?

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@mistyl

I am three months post op from a right lower lobectomy. Doing well and praying follow up CT in Jan will be all clear as well. I had a PET scan in October and it was clear! Praying you both have good outcomes!

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Great news, Misty! We all seem to say the same thing after a follow-up CT scan or PET. It's part of our life now and should be. Once you have cancer there is always a chance for a recurrence and needs to be checked at least once a year. Thank goodness for all of the researchers who helped develop these machines and science! We are so lucky! Don't you think?

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