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.

vic83 | @vic83 | Dec 31, 2023

In reply to @linda10 "@raffi Hello! I have not posted in a long time. I was first diagnosed in early..." + (show)

Thanks for sharing. The four surgeries you mention, were they all VAT surgeries, what lobes were they on and were they all wedge or did they remove an entire lobe? I have had two VAT wedge resections (stage 1b RUL and stage 1a2 LUL). And I had SBRT on 2 nodules in RUL - all that in a two-year period.
The RUL still has multiple increasing nodules and GG and I wonder if they might go back in and just take out that lobe.

EllaB | @raffi | Dec 31, 2023

Hi Merry, both nsclc adenocarcinoma. Different mutations: EGFR one, Kras the other, both mutations not too sensitive to the common inhibitors. PDL-1 slightly positive in one, and negative in the other. Maybe if the results were different I could’ve had some therapy but at stage 1a generally no therapy is suggested. My life seems normal 😜 and I am almost recovered from the two robotic surgeries just minor discomfort. I am ready for the new year!!

Merry, Alumni Mentor | @merpreb | Dec 31, 2023

In reply to @raffi "Hi all! I also have multiple (2) nodules. Both adenocarcinomas but not related: genomic analysis did..." + (show)

Raffi- Did genomic analysis tell what the two different cancers are?

linda10 | @linda10 | Dec 30, 2023

In reply to @dragonspark "Have they ever done biomarker testing to see if targeted or immunotherapy would help?" + (show)

@dragonspark, Hello! I did have a bio marker test done to 1 of my samples. It showed nothing that could be helped by immunotherapy. I’m fine with this. I take nothing, therefore, I have no side effects. My life is completely normal, other than when it comes to scan time. You never know what may be there, but then again, that’s basically life! Best wishes for You in the New Year!

linda10 | @linda10 | Dec 30, 2023

In reply to @raffi "Hi all! I also have multiple (2) nodules. Both adenocarcinomas but not related: genomic analysis did..." + (show)

@raffi Hello! I have not posted in a long time. I was first diagnosed in early 2011. Since then, I have had 4 surgeries and 2 different radiations. All of my cancers were different types of adenocarcinoma, and all 1a. I have scans anywhere from 3 month intervals, to 6 month intervals, to now, as of my last scan, a much welcomed 1 year interval! Please just live your life. None of us are promised tomorrow.
I live a wonderfully normal life. Multifocal lung cancer is a whole different type of lung cancer. May you have a wonderful New Year and embrace your new normal.

dragonspark | @dragonspark | Dec 30, 2023

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.

Jump to this post

Have they ever done biomarker testing to see if targeted or immunotherapy would help?

EllaB | @raffi | Dec 30, 2023

Hi all!
I also have multiple (2) nodules. Both adenocarcinomas but not related: genomic analysis did show two different rare mutations…. Lucky me 😜🙄 I was diagnosed in March 2023 and since then two surgeries: no metastasis detected. My first six months CT shows no new nodules. I am 53 yo diagnosed at 52. I am trying to be positive and my pulmonologist is very optimistic: since I am stage 1a for both cancers the oncologist follows me through the pulmonologist.
A new year is going to start soon and for all of us I wish a new year full of joy since I am realizing you can be happy even with cancer!

Lisa, Volunteer Mentor | @lls8000 | Jul 30, 2023

In reply to @balevine "Hi Merry - you had suggested I post on this blog. I have multifocal disease. I..." + (show)

@balevine, I'm glad you came here, and have been able to learn more about multifocal disease. The schedule of continual scans and doctor appointments is never fun, but if it keeps us on top of any growth, it's worth it! Wishing you the best going forward, and no changes for your September scans.

Lisa, Volunteer Mentor | @lls8000 | Jul 30, 2023

In reply to @marymunzel "I have emphesema and have been on 24 hour oxygen since August. I was diagnosed last..." + (show)

Hi @marymunzel, you've been through so much, but sound strong and determined. Many lung cancer patients have been through Covid, and from what I understand, lung tissue can be impacted differently depending on the person. I have no residual effects of having Covid nearly a year ago (but I'm not monitoring any nodules either).
The wait-and-watch game is not always an easy one, but that's what commonly happens in these cases. Keep us posted on what you find in October. Did you have a previous lung biopsy, that led to the multifocal carcinoma diagnosis?

vic83 | @vic83 | Jul 29, 2023

In reply to @marymunzel "I have emphesema and have been on 24 hour oxygen since August. I was diagnosed last..." + (show)

Very sorry to hear about your difficulties. It is a lot to deal with.
I have Multifocal (in both lungs, but mostly right lung) and tested positive for Covid twice since my multifocal diagnosis (Dec 2021). I cannot answer about any impact on nodules, just my experience. Covid is a virus causing respiratory illness - so anyone with problem lungs does not want to catch it.
My first Covid was four weeks after my first VAT surgery despite my complete isolation. I noticed I was not as strong as I thought I should be week by week and I had developed a productive cough. They told me to get tested. I was positive. I was prescribed Molnupuravir (Paxlovid, much more effective, was not available). But M. cleared up my cough right away with no further complications. Nothing unusual on following scans. Interestingly I was four months out from my last Covid vaccine - the point where protection really drops off.
My second Covid occurred 8 months later. I knew I had been exposed so was tested and was positive. But I barely had a "headache". Again I was 4 months out from last Covid vaccine. I had a recent Stent placed so I was taking Plavix which meant I could not take Paxlovid drug. Mayo set me up with a monoclonal treatment. I was fine. My nodules have only done what we expected them to do.
Best wishes for recovery.

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