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.

jp78 | @jp78 | Feb 12, 2023

In reply to @lijda "There are so many different kinds of cancers. It sounds like you don't have multifocal lung..." + (show)

I have multi focal Adenocarcinoma and have had a wedge removed from one lobe and a middle lobe lobectomy, plus radiation on both right and left lungs. Haven't had chemo yet and hope I never do. I also have COPD . But the good Lord has me on this earth yet for a reason and I take each each day as it comes and count all the wonderful blessings I do have. Blessings to each andevery one of you

Joan

jp78 | @jp78 | Feb 12, 2023

Hi Merry and Linda. In this type of lung cancer, what is considered stage three, is that when it has gone to other parts of your body? I go back in March for more ct scans since some things have changed and wonder what the next step will be be.......so far its been radiation and surgery.....will it eventually get to chemo? I sometimes wonder if the cancer has popped up someplace else. Its been a few years since I had a PET scan......How often do they do those. Wonder if I should ask for one? Right now I am dealing with double pneumonia and thats not fun either. Prayers for all of you who are going thru illness, treatments, etc. Its not a easy life but I keep putting one foot forward ( but do slide a few times!!!!) Blessings...... joan

lijda | @lijda | Feb 10, 2023

In reply to @joe6767 "It’s really hard Me l got a lobectomie on the write upper lung and they found..." + (show)

There are so many different kinds of cancers. It sounds like you don't have multifocal lung cancer, Joe. I think there might be a confusion between nodes (lymph nodes) and nodules. The cancerous lesions in multifocal adenocarcinoma are nodules, within the lung; they are not lymph nodes. I think this distinction is important because it can affect treatment decisions. For example, chemotherapy and radiation are not necessarily done for multifocal lung cancer. There are lots of threads on this forum that might be even more helpful to you.

daria | @daria | Feb 9, 2023

So glad to “meet” someone else with MAC (although I wouldn’t wish this on anyone!). Have you had a lobectomy? I’ve had 2 and a wedge resection since being diagnosed in august of 2020. It’s so encouraging to see how long you’ve had this. I pray for more time, I’m 56 and feel too young to die.

Merry, Alumni Mentor | @merpreb | Dec 27, 2022

In reply to @joe6767 "Sure I’m scare but I’m doing it for me and my children Thank you" + (show)

Of course, you are scared. And you have chosen the best reason to have chemo. I am wishing you the best!

joe6767 | @joe6767 | Dec 27, 2022

In reply to @merpreb "Joe- Not a great way to begin a new year is it? I try and think..." + (show)

Sure I’m scare but I’m doing it for me and my children
Thank you

Merry, Alumni Mentor | @merpreb | Dec 27, 2022

In reply to @joe6767 "I was thinking just operation be ok but l remember when the Dc told me if..." + (show)

Joe- Not a great way to begin a new year is it? I try and think about how fortunate we are to live in a time when research has afforded us such marvelous machines that helps us live longer or cures us! Please let us know how you do with chemo!

Merry

vic83 | @vic83 | Dec 27, 2022

In reply to @lijda "I too have been diagnosed with multifocal lung cancer (or perhaps it’s bilateral metastatic lung cancer)...." + (show)

@lijda

I too have been diagnosed with multifocal lung cancer (or perhaps it’s bilateral metastatic lung cancer). Long post so I’ve tried to organize it. To date, I have done no treatments except for the lobectomies. I would be interested to hear if others who were diagnosed with multifocal lung cancer have done chemotherapy, targeted treatments, or immunotherapy; and, if so, their outcomes.

HISTORY: In December 2019, I had a RUL lobectomy to remove a 5.4 cm. tumor discovered accidentally in October 2019. I did no chemotherapy following the lobectomy. The first post-lobectomy scan in June 2020 revealed four bilateral nodules, which resulted in a diagnosis of multi-focal lung cancer, more scans (every 3 months), and a second lobectomy (LUL) in March 2021.

SCANS: Scans after the second lobectomy showed growth in both size and number of nodules, to the point of “innumerable” nodules in the October 2021 and January 2022 scans. The latest scan in September 2022 showed slightly increased numerous bilateral pulmonary nodules, some with a central solid component and surrounding groundglass. My oncologist estimates there are between 20 and 30 nodules. The largest are around 1 cm.

MOLECULAR TESTING: Molecular testing of the six growths removed during the two lobectomies shows EGFR exon 21 p.L858R mutation in the 2019 tumor and in the three nodules from the second lobectomy; KRAS Exon 2 p.G12C in one mass from the second lobectomy; and KRAS G13C exon 2 in the other mass from the second lobectomy. In September, samples of the existing nodules were taken via a navigational bronchoscopy; the two nodules tested also showed EGFR exon 21 p.L858R mutation. They are identical in mutations (nine) to one of the nodules removed in the second lobectomy.

TREATMENT PLAN: My surgeon believes we should watch and wait. My oncologist recommends starting osimertinib (Tagrisso). There are pros and cons to each option but, after many sleepless nights, I have decided that I do not want to start Tagrisso until the nodules grow bigger or I become symptomatic. My reasons for deciding to delay treatment include:
• So far I feel great: I am asymptomatic. I have essentially no burden of disease or burden of treatment (although humidity curtails exercise).
• My nodules are not yet aggressive. They exhibit slow growth and no metastasis to brain, bones, or liver (or anywhere else). I feel that starting treatment might be like poking a stick into a hornets’ nest.
• The inevitability of my cancer eventually becoming resistant to the treatment, leading to a trainload of subsequent treatments. I prefer to catch a later train.

I MUST EMPHASIZE: my decision to delay treatment (not considered reasonable by all) is not a criticism of current treatment options. There are good reasons to start treatment: potential for brain metastases; treating the nodules before they become aggressive and more complex, at which point treatment might not be as effective. I'm just not ready.

My next scans are scheduled in January. I have decided not to worry about the results of the scans, just about the possibility of snow and ice that would prevent me getting to the appointment (a 60 mile drive).

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I have not had any additional treatments after VAT surgery so can't provide any input. They did mention radiation as an eventual treatment for other nodules.
I too had analysis of removed mass, but have to admit that while CT scans can be deciphered the Molecular testing is another world.
I relate to your driving concerns. I have a 90-mile drive. Last winter twice I left a day early and stayed in a hotel to avoid bad weather.
Hope all goes well for you, keep us informed

joe6767 | @joe6767 | Dec 26, 2022

In reply to @colleenyoung "Sending thoughts your way, @joe6767 for both the radiation consult and starting chemo in the new..." + (show)

I was thinking just operation be ok but l remember when the Dc told me if you want you better got chimo just to be sure
But when they found out was carcinoma he told me better have the chimo just to be sure to kill all the cell

Colleen Young, Connect Director | @colleenyoung | Dec 26, 2022

In reply to @joe6767 "It’s really hard Me l got a lobectomie on the write upper lung and they found..." + (show)

Sending thoughts your way, @joe6767 for both the radiation consult and starting chemo in the new year. I know this is a gut punch when you thought you were finished with treatment.

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