1. < Lung Cancer

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 24 4:19pm
In reply to @lindaibm "Hello Everyone, Do you know the cause of your cancer? Have your ever worn a Philips..." + (show)
@lindaibm

Hello Everyone,
Do you know the cause of your cancer? Have your ever worn a Philips CPAP machine? I am also struggling with multi focal lung cancers. I would like to talk further with you.

Jump to this post

@lindaibm, please note that your personal contact information has been removed as per the Community Guidelines. Mayo Clinic Connect is a public forum. To share personal contact information it is advisable to use the secure private message function.

I think you might be interested in this related discussion:
- CPAP (Phillips recall) and Cancer https://connect.mayoclinic.org/discussion/cpaps-and-cancer/

I'm sorry to hear that you are struggling. It is natural to search for the cause. It's not always possible to pinpoint the diagnosis of cancer on one single culprit. It may be environmental, genetic, aging, or even unknown.

What is your treatment plan?

REPLY
trudyhs | @trudyhs | Apr 24 3:19pm
In reply to @lindaibm "Hello TrudyHS, Do you know the cause of your cancer? Have your ever worn a Philips..." + (show)
@lindaibm

Hello TrudyHS,
Do you know the cause of your cancer? Have your ever worn a Philips CPAP machine? I would like to talk further with you.

Jump to this post

Hello,
No cause known. No risk factors. No I haven't ever used any kind of CPAP machine.

REPLY
lindaibm | @lindaibm | Apr 24 2:18pm
In reply to @meka "Hi, apologies for taking so long to reply. Please don't give up!! When I was diagnosed..." + (show)
@meka

Hi, apologies for taking so long to reply. Please don't give up!! When I
was diagnosed late 2018, was sent to a non thoracic surgeon. I was told
they would do a lobectomy, it was metastatic, and then given only
palliative care.
Thank goodness I chose not to blindly accept that diagnosis. Ended up
coming to Mayo, had partial, resection surgery on one lobe, and radiation
therapy on another lobe about a year later. No, it's not been a picnic
with the follow-up scans, recovering, etc, but no one at Mayo has given up
or told me palliative care was the only option. I currently have nodules
in 2 lobes, thyroid, and on an adrenal. They are all stable and my next
check is not until June.
I'm a active senior, swimming, walking my dog, hiking, hoping to take up
biking again, kayaking, volunteering, etc. Let me know if I can help in
any way, promise to respond in a more timely manner,

Jump to this post

Hello Everyone,
Do you know the cause of your cancer? Have your ever worn a Philips CPAP machine? I am also struggling with multi focal lung cancers. I would like to talk further with you.

REPLY
1 reply
lindaibm | @lindaibm | Apr 24 2:08pm
In reply to @trudyhs "Hello, I was diagnosed with multifocal lung cancer in 2020 and had a 5.2 cm nodule..." + (show)
@trudyhs

Hello,
I was diagnosed with multifocal lung cancer in 2020 and had a 5.2 cm nodule removed through VATS upper left lobectomy. Because of it's size chemo was recommended and I did 4 rounds.
In 2024 I had further surgery (Robotic segmented surgery) to remove 4 nodules in upper right and lower right lobes. The larges nodule was 4.1 cm. The biomarkers available so far (surgery was recent) are ALK negative, KRAS negative, PDL-1 50%. EGFR result is not available yet.
I am being recommended to do more chemo (4 rounds) followed by immunotherapy for a year, which I am very concerned about. Given the properties of multifocal lung cancer and given the fact that I've already done chemo I don't see the value of having done that in the first place and consequently I question this recommendation.
Also, I have another nodule that will be treated with SBRT soon.
I'd like to hear from other Multifocal lung cancer patients what their experience or knowledge is of treating this type of lung cancer with chemo and immunotherapy or targeted therapy. Is it a common treatment plan? Pros and cons? Thank you.

Jump to this post

Hello TrudyHS,
Do you know the cause of your cancer? Have your ever worn a Philips CPAP machine? I would like to talk further with you.

REPLY
1 reply
vic83 | @vic83 | Apr 23 9:05pm
In reply to @trudyhs "Hello, I was diagnosed with multifocal lung cancer in 2020 and had a 5.2 cm nodule..." + (show)
@trudyhs

Hello,
I was diagnosed with multifocal lung cancer in 2020 and had a 5.2 cm nodule removed through VATS upper left lobectomy. Because of it's size chemo was recommended and I did 4 rounds.
In 2024 I had further surgery (Robotic segmented surgery) to remove 4 nodules in upper right and lower right lobes. The larges nodule was 4.1 cm. The biomarkers available so far (surgery was recent) are ALK negative, KRAS negative, PDL-1 50%. EGFR result is not available yet.
I am being recommended to do more chemo (4 rounds) followed by immunotherapy for a year, which I am very concerned about. Given the properties of multifocal lung cancer and given the fact that I've already done chemo I don't see the value of having done that in the first place and consequently I question this recommendation.
Also, I have another nodule that will be treated with SBRT soon.
I'd like to hear from other Multifocal lung cancer patients what their experience or knowledge is of treating this type of lung cancer with chemo and immunotherapy or targeted therapy. Is it a common treatment plan? Pros and cons? Thank you.

Jump to this post

Thanks for sharing your experience. I too have multifocal lung cancer (bilateral also - in both lungs).
I agree with your concerns...given that there is always another nodule to treat so it requires planning. Did the chemo and immunotherapy provide any benefit regarding the other nodules that they can measure?
After two VAT surgeries, I had SBRT treatment for a different two nodules. I developed radiation-induced pneumonitis (one of the risks with radiation) and was put on Prednisone. The treated area is now obscured on my CT Scans and it is not sure what is going on.
My Pulmonologist had mentioned the possibility of immunotherapy but now says that would be too risky given my episode of pneumonitis (which drugs can also cause). He has said that surgery and ablation are my options now.

REPLY
trudyhs | @trudyhs | Apr 22 9:39am

Hello,
I was diagnosed with multifocal lung cancer in 2020 and had a 5.2 cm nodule removed through VATS upper left lobectomy. Because of it's size chemo was recommended and I did 4 rounds.
In 2024 I had further surgery (Robotic segmented surgery) to remove 4 nodules in upper right and lower right lobes. The larges nodule was 4.1 cm. The biomarkers available so far (surgery was recent) are ALK negative, KRAS negative, PDL-1 50%. EGFR result is not available yet.
I am being recommended to do more chemo (4 rounds) followed by immunotherapy for a year, which I am very concerned about. Given the properties of multifocal lung cancer and given the fact that I've already done chemo I don't see the value of having done that in the first place and consequently I question this recommendation.
Also, I have another nodule that will be treated with SBRT soon.
I'd like to hear from other Multifocal lung cancer patients what their experience or knowledge is of treating this type of lung cancer with chemo and immunotherapy or targeted therapy. Is it a common treatment plan? Pros and cons? Thank you.

REPLY
2 replies
marye2 | @marye2 | Jan 17 5:58pm

Amazingly, I do not have to return for two years. "No new focal lesion seen." Thymus lesion is not seen as something to be concerned about at this time. I have to see about the thyroid nodule later this week. Relief, for sure. I am on D3, so hoping nothing more shows up. Thank you for checking back on me!

REPLY
Merry, Alumni Mentor | @merpreb | Jan 17 9:30am
In reply to @marye2 "I am going in for my 18 month recheck for nodules in January. One is ground..." + (show)
@marye2

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.

Jump to this post

Hi Marye2- You have a lot on your plate! Have you had your recheck yet? How are you doing?

Merry

REPLY
meka | @meka | Jan 16 6:40pm
In reply to @meka "Thanks so much for posting, just been diagnosed with andenocarcinoma with one pea size, 5mm? Two..." + (show)
@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!!!

Jump to this post

Hi, apologies for taking so long to reply. Please don't give up!! When I
was diagnosed late 2018, was sent to a non thoracic surgeon. I was told
they would do a lobectomy, it was metastatic, and then given only
palliative care.
Thank goodness I chose not to blindly accept that diagnosis. Ended up
coming to Mayo, had partial, resection surgery on one lobe, and radiation
therapy on another lobe about a year later. No, it's not been a picnic
with the follow-up scans, recovering, etc, but no one at Mayo has given up
or told me palliative care was the only option. I currently have nodules
in 2 lobes, thyroid, and on an adrenal. They are all stable and my next
check is not until June.
I'm a active senior, swimming, walking my dog, hiking, hoping to take up
biking again, kayaking, volunteering, etc. Let me know if I can help in
any way, promise to respond in a more timely manner,

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Jan 5 1:58pm
In reply to @raffi "Hi Merry, both nsclc adenocarcinoma. Different mutations: EGFR one, Kras the other, both mutations not too..." + (show)
@raffi

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!!

Jump to this post

raffi- As the "old saying goes," You go girl!

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