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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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Sakota- great news! My CT scan in early Feb and I can feel the tension build up as I get closer.
Colleen- To answer your question. My cancer started about 21 years ago with a virulent adenocarcinoma. To my knowledge there was only one tumor. My lower right lobe was removed successfully and after I recovered I thought that I was on easy street. BUT, 10 years later a cancer showed up on my yearly CT scan that showed 2 cancers in my left upper lung. When my surgeon operated he found another tiny adenos tumor attached to m y pleura. These cancers were all different stages and were considered primaries. I had chemo for 4 months. Who know if it worked because multifocal adenocarcinomas keep growing. During this time the nature of the science changed regarding these cancers. The names changed and they discovered many new things about them, which I have touched on before. Six years later and then last year I had more lesions that grew and had SBRT to treat the lesions.
Presently I am getting scans every 3-6 months. I have undergone pulmonary rehab which has helped immensely. This year I also had an artery repaired that had collapsed due a surgical error. It made a huge difference in my breathing and I feel like a new person!
Physically I feel great right now. I am active both physically and mentally.
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8 ReactionsHi I am sakota. I was first diagnosed with lung cancer in 2011. I had gone to mayo just for a general checkup which included a general chest X-ray and from there it went to more tests and surgery. I was diagnosed with multifocal adenocarcinoma I really didn’t feel anything and just knew that I wanted this cancer out of me. So I had surgery and they removed a wedge out of my lower right lung. They were able to do it my scope so only in the hospital a cople of days. From then it’s been ct scans every 3 to 6 months one more surgery and two times for radiation treatment. It’s annoying not being cancer free and the worry you have a ct scan. I had a ct yesterday and report today that was stable yet. But for all long who knows. If it wouldn’t be for my having copd I would feel a it better. Thanks for reading my story
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6 Reactions@merpreb So glad you started this discussion to connect people living with multifocal adenocarcinoma of the lung. I'd like to invite you, @linda10 and @sakota to get the conversation started. When were you first diagnosed? How are you doing today?
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