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.

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!

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?

raffi | @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!!

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.

vic83 | @vic83 | Dec 31, 2023

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

You are so right!!! I learned more from Mayo Connect than my doctors! My local Pulmonologist talked about interstitial disease not cancer. I went to Mayo and was told I was a complex case, but I assumed that was because I also had a heart issue. I didn't know it was the type of cancer that is so complex. I only understood what I had because of Merry sharing her long experience.

marye2 | @marye2 | Jan 1 12:59am

I am going in for my 18 month recheck for nodules in January. One is ground glass and they could not biopsy it at the size it was.

balevine | @balevine | Jan 1 10:27am

In reply to @marye2 "I am going in for my 18 month recheck for nodules in January. One is ground..." + (show)

Good luck. My Sept scan showed everything was stable. My next scan is Feb. I notice I can put everything to rest until it starts to get close to next scan, then have a little bit of nerves. But comfort myself that frequent scans is best protection I have.

marye2 | @marye2 | Jan 1 11:56am

In reply to @balevine "Good luck. My Sept scan showed everything was stable. My next scan is Feb. I notice..." + (show)

I think so, too. Of all things, I have a benign tumor on my liver, now. It seems like I was worried the first time around; less so this time.

Lisa, Volunteer Mentor | @lls8000 | Jan 1 9:12pm

In reply to @raffi "Hi Merry, both nsclc adenocarcinoma. Different mutations: EGFR one, Kras the other, both mutations not too..." + (show)

@raffi, I’m glad that you are doing well and looking forward. I have the ALK mutation, which was found at a late stage (diagnosed at 49, I’m now 53). I’m always happy to hear of patients that are found at earlier stages. This is encouraging for the future of lung cancer, especially in younger patients. Keep looking forward, and living your beautiful life!

linda10 | @linda10 | Jan 2 7:59am

In reply to @vic83 "Thanks for sharing. The four surgeries you mention, were they all VAT surgeries, what lobes were..." + (show)

@vic83 Good Morning! My first cancer was in my upper right lobe and the whole lobe was removed with the “big” surgery. At that point, it was not known that I had multifocal lung cancer, and, that was the gold standard.
3 years later, I had a ggo begin to grow and the surgeries going forward were all VATS wedges.
I am not a doctor. It’s my understanding that with multifocal lung cancer, the objective is to preserve lung tissue, as this is an ongoing disease, and I would look to your team to manage your care. Best wishes and prayers for you this year.