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.

@ladylennie

I was diagnosed with multifocal nsclc in Dec 2023. 2 in left upper lobe diagnosed as adenocarcinoma, 1 in left lower lobe, and 2 in right upper lobe. The 2 in lul showed 3.2 and 4.1 uptake on pet. I had left upper lobe lobectomy in early February, confirmed both adenocarcinoma. They also did a wedge resection all, atypical cells, aah (not yet cancer). They staged 2b because 2 nodules in same lobe; both lesd than 14 cm. Not sure why they assumed intrapulmonary metastasis rather than synchronous.

Started chemo, pemetrexed carboplatin and finished 2 cycles, 2 to go. Then one year Keytruda

No idea about the ones in the right lung yet. Scans will be done when I finish chemo. If worrisome, I'll have sbrt.

I still don't know how to interpret all of this. I had my surgery at Moffitt. They're very good but if I had it to do over again I would go to Mayo, where they have a multifocal program.

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I know the risks of radiation, as I had it some years ago when I was first diagnosed. It does do some damage to the lungs, plus I also have copd. Also had wedge out of my right lower lobe and the middle lobe totally removed. And now its time to make decisions again. So between copd and the lung cancer........what is going to be my quality of life. Right now, I already live in assisted living. Also whats with the cpaps, guess I need to do some research.

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@ladylennie

I was diagnosed with multifocal nsclc in Dec 2023. 2 in left upper lobe diagnosed as adenocarcinoma, 1 in left lower lobe, and 2 in right upper lobe. The 2 in lul showed 3.2 and 4.1 uptake on pet. I had left upper lobe lobectomy in early February, confirmed both adenocarcinoma. They also did a wedge resection all, atypical cells, aah (not yet cancer). They staged 2b because 2 nodules in same lobe; both lesd than 14 cm. Not sure why they assumed intrapulmonary metastasis rather than synchronous.

Started chemo, pemetrexed carboplatin and finished 2 cycles, 2 to go. Then one year Keytruda

No idea about the ones in the right lung yet. Scans will be done when I finish chemo. If worrisome, I'll have sbrt.

I still don't know how to interpret all of this. I had my surgery at Moffitt. They're very good but if I had it to do over again I would go to Mayo, where they have a multifocal program.

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Are you saying they did a wedge resection in a different lobe after the LUL lobectomy all at once?

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All at once. After the lobectomy, the surgeon saw suspicious tissue and did the wedge on the lower left.

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@vic83

Your Radiation Oncologist should explain potential side effects. I am 83 and last August I had 3 sessions SBRT for RUL (2 nodules). It is painless. I did develop radiation-induced pneumonitis two months later and took Prednisone for that. I have Pulmonary Fibrosis.

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I have heard all this when I first was dianosed, but now I am sure new things and treatment are being used. I just don't know what I want done........ now is the time to start thinking of quality of life. Another thing is if I have a flare up of my copd, my sugar goes sky high on steroids and have to try to keep that under control , I have my pet scan on tuesday so will will find out more information then, before making final decision and more discussion with my onocologist. Prayers to each and every one of you who are dealing with any type of illness. Joan

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I understand there is a clinical trial/study on Multifocal Adenocarcinoma of the Lung being done at the Mayo Clinic presently. The description I’ve read isn’t very detailed. Does anyone have any more information on it and what the time line may be for publishing results. Also, has anyone found good publications on the most up-to-date treatment of multifocal lung cancer?

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@trudyhs

I understand there is a clinical trial/study on Multifocal Adenocarcinoma of the Lung being done at the Mayo Clinic presently. The description I’ve read isn’t very detailed. Does anyone have any more information on it and what the time line may be for publishing results. Also, has anyone found good publications on the most up-to-date treatment of multifocal lung cancer?

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The study at Mayo that you are referring to is a 10-year study that was to be published in Oct 2023 but was delayed until Oct 2025. I have not found anything very interesting about multifocal yet. Except that it is also impossible (without surgery) to know if the identified nodules are all primary cancers or if some are metastasis. In my second VAT, pathology stated STAS present (spread through air spaces) - that is the nodule was shedding. But they don't know much about that either.
There is no agreed upon treatment approach, nor understanding of why this cancer acts like it does.
https://classic.clinicaltrials.gov/ct2/show/NCT01946100
"Lung bronchoalveolar carcinoma (BAC) or adenocarcinoma in situ (AIS) continues to represent a poorly understood clinical entity. A frequent clinical dilemma in lung cancer care is the management of a documented or suspected invasive adenocarcinoma in the setting of multifocal ground glass opacity (GGO) consistent with multifocal AIS. These patients are typically classified as stage IV disease, and treated with palliative chemotherapy. No existing pathologic or molecular test is currently capable of making the distinction between independent primary versus metastatic tumors, a distinction for which substantial treatment impact exists. Many treating physicians suspect that outcomes for this specific patient subgroup are better than norms for stage IV disease, as such patients are frequently node-negative and without distant metastases despite multiple lesions present. To address this issue, we will evaluate a multimodality treatment protocol using aggressive local and targeted systemic therapy for multifocal lung adenocarcinoma, incorporating information from tumor genome sequencing for individualized treatment planning. The results will have significant impact in advancing the biologic understanding and treatment approach for lung adenocarcinoma in the setting of multifocal AIS."

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@jp78

I know the risks of radiation, as I had it some years ago when I was first diagnosed. It does do some damage to the lungs, plus I also have copd. Also had wedge out of my right lower lobe and the middle lobe totally removed. And now its time to make decisions again. So between copd and the lung cancer........what is going to be my quality of life. Right now, I already live in assisted living. Also whats with the cpaps, guess I need to do some research.

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My rest is more recuperative using my C-PAP. I encourage you to have a sleep test.

Proton radiation therapy doesn't cause the same damage to surrounding tissue that photon (traditional source) uses. See if it is offered near you.

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@jp78

I have heard all this when I first was dianosed, but now I am sure new things and treatment are being used. I just don't know what I want done........ now is the time to start thinking of quality of life. Another thing is if I have a flare up of my copd, my sugar goes sky high on steroids and have to try to keep that under control , I have my pet scan on tuesday so will will find out more information then, before making final decision and more discussion with my onocologist. Prayers to each and every one of you who are dealing with any type of illness. Joan

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@jp78, this was a decision that my dad also considered (for a different cancer - colorectal). He chose quality of life; a decision we supported. For us, it was very helpful to have the support of palliative care. At the time, he didn't yet qualify for hospice. Palliative care was a great support. Do you already have palliative care?

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I have kind of asked about palliative care but haven't looked into it fully. Guess I will. Have made my decision or at least think I have but then another thought comes into my mind. My last thought was wait 3 months then have another pet scan and if spot in my left lung has grown then will have both issues taken care of by radiation......, then today I think, ok my right lung has had a wedge taken, middle lobe taken and radiation treatment, so will have more radiation make it a lot worse.....My left lung has had some radiation. and if my one lymph node proves definitely for cancer then I am going to have nothing none,. Things get complicated as you get older . Surgery is out of the question and have many other health issues. If anyone has any bright ideas, let me know, because my mind is getting bogged down. Prayers and blessings to all of you.........Joan

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@jp78

I have kind of asked about palliative care but haven't looked into it fully. Guess I will. Have made my decision or at least think I have but then another thought comes into my mind. My last thought was wait 3 months then have another pet scan and if spot in my left lung has grown then will have both issues taken care of by radiation......, then today I think, ok my right lung has had a wedge taken, middle lobe taken and radiation treatment, so will have more radiation make it a lot worse.....My left lung has had some radiation. and if my one lymph node proves definitely for cancer then I am going to have nothing none,. Things get complicated as you get older . Surgery is out of the question and have many other health issues. If anyone has any bright ideas, let me know, because my mind is getting bogged down. Prayers and blessings to all of you.........Joan

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Definitely look into proton radiation. There is less damage to surrounding tissue than with stereotactic radiation.

Also, patients who add palliative care in the US tend to live longer with better quality of life. They tend to have fewer hospitalizations and med errors.
https://www.healthline.com/health/palliative-care#benefits

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