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.

sakota9 (Joan) | @sakota | Dec 13, 2018

I really need to proof read before sending

sakota9 (Joan) | @sakota | Dec 13, 2018

In reply to @linda10 "Never Ever give up!" + (show)

@linda. Hope uypu had a good day Linda.

Merry, Alumni Mentor | @merpreb | Dec 13, 2018

Good morning Linda10- I have them! I just didn't know the acronym. I have a bad cold and am not thinking clearly.

linda10 | @linda10 | Dec 13, 2018

Good morning Merry! GGOs are ground glass opacities. They are commonly found in multifocal lung cancer. Prayers for a stable scan in February.

Merry, Alumni Mentor | @merpreb | Dec 13, 2018

In reply to @linda10 "Hi all! I'm Linda and very new to posting here as you can see above I..." + (show)

@linda10

Hi all! I'm Linda and very new to posting here as you can see above I tried to respond to Sakota and missed the mark. Anyway my first cancer was found accidentally in 2011 by an X-ray because I was so sick with a respiratory illness. I live in a small town and was basically told to get my affairs in order because I had emphysema and metastatic lung cancer. The pulmonologist I saw ordered full house oxygen for my house. I knew I had to get out of here quick. Long story short I called the Mayo Clinic and set up an appointment. The Mayo redid all my tests and I was offered an upper lobectomy which produced a stage 1a adenocarcinoma cancer. I did well until November of 2014 when a ggo changed and produced a 2nd adenocarcinoma in the lower right lobe which was resected with a wedge section and staged again as a 1a. Again 6 month intervals on my CT scans. Things would pop up and we watch. Nothing changes till 2017, this time in the lower left lobe. Surgery in June-another wedge section, would produce a diagnosis of AIS or adenocarcinoma in situ which is basically a pre cancer. June of this year required another wedge section adjacent to the 2017 surgery resulting in yet another 1a adenocarcinoma. My 1st post on this site came while waiting for my 6 month scan a few days ago. I just read the radiology report last night and there are actually 2 areas we are again watching plus a new ggo. While it is definitely depressing to hear that I am no longer stable, I am incredibly thankful to my team at the Mayo Clinic that has brought me this far. 71/2 years ago I never dreamed I would be here today. I try and never forget that these years have been a gift. That is how I deal with my situation. This multifocal disease can be difficult to understand, but I will NOT go down the rabbit hole. I have chosen to embrace every day I have been given as a blessing. I hope I can help someone to deal with their journey.

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@linda10- I hate it when we anticipate the test results and they come back unstable, again! The fear doesn't get better, just more familiar and tiring. What is a ggo? I tried googling it and got some sort of sports group. lol My next CT scan is early February.
Keeping up our fight is so important. Every time you post here you help. Please keep it up!!

Merry, Alumni Mentor | @merpreb | Dec 13, 2018

@meka-Welcome again. Please stay strong until you have made your contacts at Mayo Clinic. When given incomplete or wrong "bad" information it just makes things stink for that person. Take a deep breath and make your calls. Then, please come back and let us know what your new team says.

meka | @meka | Dec 12, 2018

This is amazing and gives me great hope, my two favorite quotes, "keep passing the open windows", and", watch out for the under-toad"!! Energy hugs to all of you!!!

linda10 | @linda10 | Dec 12, 2018

In reply to @meka "Thanks so much for posting, just been diagnosed with andenocarcinoma with one pea size, 5mm? Two..." + (show)

Never Ever give up!

linda10 | @linda10 | Dec 12, 2018

meka | @meka | Dec 12, 2018

Thanks so much for posting, just been diagnosed with andenocarcinoma with one pea size, 5mm? Two other spots may or may not be cancer, too small for biopsy, no strong activity. They want to remove whole lobe, then if the other are determined later to be cancer, metistatic, stage iv, palliative care only.. I too have PTSD, MST, etc. Yesterday was giving up, today- survived too much in life to give up now!!!