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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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Vic Surgery removes the nodule and surrounding lymph nodes and lab analysis provides definitive results. Some patients cannot have or do not want surgery and radiation and ablation are needed options. Unless a biopsy is done prior to radiation and ablation, you will not know if the nodule was cancerous or not. I was told that surgery is a tiny bit better in overall success rate too. I'm sure there are many complicating factors that could alter this as well.
For me, the surgery removed the nodule which was cancerous and lymph nodes were clear. Knowing this was helpful..
Do you have follow up appointments scheduled?
Stan, My lymph nodes were clear too. I have CT scan and visit for third week of March. Tissue analysis now done too. Having read the previous CT scans I know what is there...and of course one can research all the discussion on solid, sub solid, GGO
Vic, Just curious.... if you don't mind sharing, where you are getting your imaging and Oncology care? Sounds like they are responsive and taking good care of you. You also seem to be reading/studying this subject matter as well. Good for you. Hope your March appointments go well.
I am at Mayo Clinic. I read the exam reports and the Doctor notes on the Mayo Patient Portal, and then google all the medical terms. That brings up a lot of information including research studies. My primary care doctor in Minneapolis also posts doctor visit notes on MyChart. I understand a lot more that way. But not all practices seem to post Doctor visit notes. It seems it may be policy of the place, but by law they must post exam reports like scans etc. One just has to get set up with their patient portal system and all the exams will be there.
So sorry that you're going through this, Merry. Cancer is a scary monster and most of us can't begin to know how difficult it must be to deal with it AND with PTSD. Just wanted you to know that I'm praying for you.
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1 ReactionWhy thank you. After having this for so long it's a part of life for me that I have learned to live with. Have you been told that this is what you have, multifocal adeno cancer? Is this why you have had so many surgeries?
All that was told to me over the phone was that it's cancer. The report I was directed to in the patient portal says, "Pulmonary Adenocarcinoma. The CK7 is positive with generally negative TTF1, negative CK20 and CDX2, whatever that means! It seems that I haven't been kept too well informed. It has happened rather quickly, though, so maybe that's why.
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1 ReactionWhat are your plans now? WIll you seek a second opinion?
Thinking of you @sjones55 as you recover from surgery. I look forward to hearing from you when you're back online.
Best of luck today