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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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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.
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.
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1 ReactionHi 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
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1 ReactionI 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
But multifocal adenocarcinoma can go to the lymph nodes.
I did not mean to imply that multifocal lung cancer can't go to the lymph nodes. I was questioning whether it was a case of multifocal lung cancer because only multiple lymph nodes were mentioned, not multiple growths (or lesions or nodules) in the lobe removed by the lobectomy. I used to confuse nodules and nodes when I was first diagnosed. Although anything is possible (I'm quoting more than one of my doctors with that statement!), patients with multifocal lung cancer "are frequently node-negative and without distant metastases despite multiple lesions present. " (quote extracted from the description of the Mayo Clinical Trial "Treatment of Multifocal Lung Cancer", NCT01946100).
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3 ReactionsHow are you feeling?
I am feeling great. It's not clear if I have multifocal lung cancer (multiple primary nodules) or metastasized bilateral nodules (five growths from two lobectomies in 2019 and 2021 and from a bronchoscopy in 2022 are clonally related), but I am asymptomatic. I take walks (usually a mile if the weather cooperates) and do Tai Chi and garden; I have no coughing or shortness of breath. I am also comfortable with my decision to delay treatment (Tagrisso) until I become symptomatic or something of (new) concern shows up on the scheduled scans. I find it really helped physically and mentally once I made a decision that felt right. I actually feel especially contented because I don't take my 'good' health for granted now.
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3 Reactionslijda - I bet you don't and that's a bug jump in reality. It's so easy to become complacent. I respect your decision and I might actually have done the same thing but have not been in your circumstances. Good for you!
Hi Merry. Thank you for sharing your experiences. You have had ground glass lesions that have disappeared? I am having my second surgery for multifocal adenocarcinoma in a couple of weeks. We are going to make a surgery day decision as to how much of the RUL to remove. The uncertainty is a GGO that is on the other side of the lobe from the other two lesions. I did not consider that a GGO could disappear, only that it could grow and solidify.