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Multifocal Adenocarcinoma of the lung, continual recurrences
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.
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Hi, apologies for taking so long to reply. Please don't give up!! When I
was diagnosed late 2018, was sent to a non thoracic surgeon. I was told
they would do a lobectomy, it was metastatic, and then given only
palliative care.
Thank goodness I chose not to blindly accept that diagnosis. Ended up
coming to Mayo, had partial, resection surgery on one lobe, and radiation
therapy on another lobe about a year later. No, it's not been a picnic
with the follow-up scans, recovering, etc, but no one at Mayo has given up
or told me palliative care was the only option. I currently have nodules
in 2 lobes, thyroid, and on an adrenal. They are all stable and my next
check is not until June.
I'm a active senior, swimming, walking my dog, hiking, hoping to take up
biking again, kayaking, volunteering, etc. Let me know if I can help in
any way, promise to respond in a more timely manner,
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5 Reactionsraffi- As the "old saying goes," You go girl!
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1 ReactionSTUDY Treatment of Multifocal Lung Adenocarcinoma/Mayo Clinic
This study started in 2013 and was due out in Oct 2023. It seems it is delayed since now estimated to be complete in Oct 2025
https://clinicaltrials.gov/study/NCT01946100
Study Overview: To gather preliminary safety and outcome data for the multimodality treatment of lung adenocarcinoma in the setting of multifocal BAC.
Detailed Description
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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5 ReactionsI agree with your sentiments. I am in the same boat with stage IV nsc lung cancer.
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3 Reactions@vic83 Good Morning! My first cancer was in my upper right lobe and the whole lobe was removed with the “big” surgery. At that point, it was not known that I had multifocal lung cancer, and, that was the gold standard.
3 years later, I had a ggo begin to grow and the surgeries going forward were all VATS wedges.
I am not a doctor. It’s my understanding that with multifocal lung cancer, the objective is to preserve lung tissue, as this is an ongoing disease, and I would look to your team to manage your care. Best wishes and prayers for you this year.
@raffi, I’m glad that you are doing well and looking forward. I have the ALK mutation, which was found at a late stage (diagnosed at 49, I’m now 53). I’m always happy to hear of patients that are found at earlier stages. This is encouraging for the future of lung cancer, especially in younger patients. Keep looking forward, and living your beautiful life!
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1 ReactionI think so, too. Of all things, I have a benign tumor on my liver, now. It seems like I was worried the first time around; less so this time.
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1 ReactionGood luck. My Sept scan showed everything was stable. My next scan is Feb. I notice I can put everything to rest until it starts to get close to next scan, then have a little bit of nerves. But comfort myself that frequent scans is best protection I have.
I am going in for my 18 month recheck for nodules in January. One is ground glass and they could not biopsy it at the size it was.
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1 ReactionYou are so right!!! I learned more from Mayo Connect than my doctors! My local Pulmonologist talked about interstitial disease not cancer. I went to Mayo and was told I was a complex case, but I assumed that was because I also had a heart issue. I didn't know it was the type of cancer that is so complex. I only understood what I had because of Merry sharing her long experience.