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Merry, Volunteer Mentor
@merpreb

Posts: 801
Joined: Feb 07, 2018

Multifocal Adenocarcinoma of the lung-continual recurrences

Posted by @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.

REPLY

@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?

Hi 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

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.

@sakota

Hi 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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Wonderful news! I'm happy for you. Stable seems to be the best we will ever achieve but I'll take it.

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!!!

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.

@meka

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!!!

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Never Ever give up!

Liked by meka

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!!!

@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.

Liked by meka

@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!!

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

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

@linda10

Never Ever give up!

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@linda. Hope uypu had a good day Linda.

I really need to proof read before sending

@sakota

@linda. Hope uypu had a good day Linda.

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Thank You-I did. Hope your day was fulfilling.

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