Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Volunteer 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 group.

The nodule was malignant, so dr removed lower left lobe. Also tested lymph nodes but NO involvement, so I am now cancer free! Just got home yesterday from 2 weeks in hospital. Removing the tube in my lung was no picnic! Still waking up in the night needing pain meds. Thank you for checking on me!

REPLY
@texasgal121

The nodule was malignant, so dr removed lower left lobe. Also tested lymph nodes but NO involvement, so I am now cancer free! Just got home yesterday from 2 weeks in hospital. Removing the tube in my lung was no picnic! Still waking up in the night needing pain meds. Thank you for checking on me!

Jump to this post

@texasgal121 – I'm so happy for you that there wasn't any nodule involvement. I haven't had any either although some are inflamed. And this is fine with me as long as they don't change!

I'm with you on chest tubes. My first lobectomy was a horror show because it was done by an intern who just pulled them out, didn't hold my skin, or tell me to. He just pulled. He told me to exhale. When my doctor came he was surprised that not all the tubes had been removed so he had to do it himself. YIKES! The second time I was at a different hospital, Mass General in Boston. They have nurses who are trained to remove tubes. One had me doing some breathing exercises that she had me do with her as she was pressing down on my side ribs and the other pulled the tubes. No PAIN!

You were in the hospital for 2 weeks? Were there complications?

REPLY

Hello.
In August 2021 I was diagnosed with Multifocal Adenocarcinoma Insitu, but the oncology notes kind of imply insitu if the GGOs are indolent, but if aggressive then something else. Perhaps as more scans occur the notes will provide more clarity.

September 2021, I had a wedge resection removing 2 cancer nodules from upper left lobes. 3-4 Nodules currently remain in upper right, lower right, and lower left lobes. The lower ones have been noted in the Hila area, I have asked questions about this area and have not gotten much response. They all kind of indicate these other nodules still could be nothing. Hmmm. That is what we started with when called GGO typically not cancer. Since the 2 removed were, my guess the likelihood the remaining are the same.

So far I have felt blessed to have found these while they are small. I felt relieved to hear slow growing, but since new tumors just pop up – I had a small meltdown one night when I thought – what if they find a new tumor on my upper left lobe again on December scan? Even cried for a couple minutes thinking about just having the surgery and not wanting to do that again any time soon. All I can do is pray no change or decrease as some have said happens.
I have a KRAS mutation so not yet a candidate for target chemotherapy. Pulmonologist has said there are trials out there working toward treating adenocarcinoma insitu as a chronic disease with medication someday. Very interesting indeed.
Post wedge reactions surgery I was home about 36 hours after surgery. Making my own coffee 3 days after. I am doing great jogged/walked a 5K 4 weeks out and back to HIIT training at 5 weeks. Still recovering and notice some small aches near incision sites occasionally. They say that is just scar tissue and will subside.
It is very interesting for me to hear about the MAC history from everyone here especially the long term people.
Prayers for all of us.

REPLY
@jamineibs

Hello.
In August 2021 I was diagnosed with Multifocal Adenocarcinoma Insitu, but the oncology notes kind of imply insitu if the GGOs are indolent, but if aggressive then something else. Perhaps as more scans occur the notes will provide more clarity.

September 2021, I had a wedge resection removing 2 cancer nodules from upper left lobes. 3-4 Nodules currently remain in upper right, lower right, and lower left lobes. The lower ones have been noted in the Hila area, I have asked questions about this area and have not gotten much response. They all kind of indicate these other nodules still could be nothing. Hmmm. That is what we started with when called GGO typically not cancer. Since the 2 removed were, my guess the likelihood the remaining are the same.

So far I have felt blessed to have found these while they are small. I felt relieved to hear slow growing, but since new tumors just pop up – I had a small meltdown one night when I thought – what if they find a new tumor on my upper left lobe again on December scan? Even cried for a couple minutes thinking about just having the surgery and not wanting to do that again any time soon. All I can do is pray no change or decrease as some have said happens.
I have a KRAS mutation so not yet a candidate for target chemotherapy. Pulmonologist has said there are trials out there working toward treating adenocarcinoma insitu as a chronic disease with medication someday. Very interesting indeed.
Post wedge reactions surgery I was home about 36 hours after surgery. Making my own coffee 3 days after. I am doing great jogged/walked a 5K 4 weeks out and back to HIIT training at 5 weeks. Still recovering and notice some small aches near incision sites occasionally. They say that is just scar tissue and will subside.
It is very interesting for me to hear about the MAC history from everyone here especially the long term people.
Prayers for all of us.

Jump to this post

Welcome to Mayo Clinic Connect, Jami (@jamineibs).
I Had my first cancer in 1997 and 10 years later my the first 3 of many multifocal carcinomas appeared. It is now 14 years later. The type is NSCLC (non-small cell lung cancer- adenocarcinoma). There is no staging because each nodule is considered a primary, just as your doctor described.

If I remember correctly those aches near your incision sites might be muscle contractions. My surgeon told me that when you cut into someone's chest the geography is disrupted and all the nerves need to find new pathways.

It sounds as if you have rebounded pretty well! We have a super lady!

I think that once the role of KRAS oncogene (A gene that is a mutated (changed) form of a gene involved in normal cell growth. Oncogenes may cause the growth of cancer cells. Mutations in genes that become oncogenes can be inherited or caused by being exposed to substances in the environment that cause cancer) in NSCLC becomes clear and its predictive and prognostic impact will help with targeted therapy.

So far I have had chemo (didn't help) and surgery, and proton and photon radiation. No targeted therapy has been used. My next CT is Nov. 21st.

I hope that you continue to feel good and that your healing is smooth.

Merry

REPLY
@jamineibs

Hello.
In August 2021 I was diagnosed with Multifocal Adenocarcinoma Insitu, but the oncology notes kind of imply insitu if the GGOs are indolent, but if aggressive then something else. Perhaps as more scans occur the notes will provide more clarity.

September 2021, I had a wedge resection removing 2 cancer nodules from upper left lobes. 3-4 Nodules currently remain in upper right, lower right, and lower left lobes. The lower ones have been noted in the Hila area, I have asked questions about this area and have not gotten much response. They all kind of indicate these other nodules still could be nothing. Hmmm. That is what we started with when called GGO typically not cancer. Since the 2 removed were, my guess the likelihood the remaining are the same.

So far I have felt blessed to have found these while they are small. I felt relieved to hear slow growing, but since new tumors just pop up – I had a small meltdown one night when I thought – what if they find a new tumor on my upper left lobe again on December scan? Even cried for a couple minutes thinking about just having the surgery and not wanting to do that again any time soon. All I can do is pray no change or decrease as some have said happens.
I have a KRAS mutation so not yet a candidate for target chemotherapy. Pulmonologist has said there are trials out there working toward treating adenocarcinoma insitu as a chronic disease with medication someday. Very interesting indeed.
Post wedge reactions surgery I was home about 36 hours after surgery. Making my own coffee 3 days after. I am doing great jogged/walked a 5K 4 weeks out and back to HIIT training at 5 weeks. Still recovering and notice some small aches near incision sites occasionally. They say that is just scar tissue and will subside.
It is very interesting for me to hear about the MAC history from everyone here especially the long term people.
Prayers for all of us.

Jump to this post

You seem to be doing great with your workouts, impressive!!
I know KRAS can likely have different variants, and targeted therapies can be specific to stage, but I’m wondering if you’ve had a discussion with your oncologist about Lumakras (sotorasib), which was FDA approved for KRAS earlier this year. Possibly just something to keep in mind for the future if it’s needed. There is hope.
A good cry can be cleansing and level-setting for me, do it when you need to. This is scary stuff!
Take care, Lisa (ALK positive Stage IV, diagnosed 3/2020, so far so good!)

REPLY
@lls8000

You seem to be doing great with your workouts, impressive!!
I know KRAS can likely have different variants, and targeted therapies can be specific to stage, but I’m wondering if you’ve had a discussion with your oncologist about Lumakras (sotorasib), which was FDA approved for KRAS earlier this year. Possibly just something to keep in mind for the future if it’s needed. There is hope.
A good cry can be cleansing and level-setting for me, do it when you need to. This is scary stuff!
Take care, Lisa (ALK positive Stage IV, diagnosed 3/2020, so far so good!)

Jump to this post

@lls8000– Lumakras was only approved for people who have KRAS G12C and mutation prevalence in squamous NSCLC. Not plain KRAS

REPLY
@merpreb

@lls8000– Lumakras was only approved for people who have KRAS G12C and mutation prevalence in squamous NSCLC. Not plain KRAS

Jump to this post

Ahh, got it. There are so many variations. We certainly need more research and advances, we’ve come a long way, but have so far to go too. Hugs.

REPLY
@merpreb

@lls8000– Lumakras was only approved for people who have KRAS G12C and mutation prevalence in squamous NSCLC. Not plain KRAS

Jump to this post

I will have to take a look at the type of KRAS I have and I did also wonder if the approval was based on staging. Now that I have surgery behind me for the nodules that we’re growing/changing, I can be armed with many questions after my next scan in Dec. thank you for comments.

REPLY

Hi,I recently had my biopsy at Mayo and diagnosed with NSCLC adenocarcinoma 1A peripheral nodule.Ofcourse this is shocking to me I soent months searching online for every other thing that this could possibly be and hoping it was anything but this. The surgeon suggested doing a wedge resecrion with ample margins, I think if thiks were a GGO or minimally invasive I would feel more at ease.The Dr, said we could also do lobectomy.After reseacrching Im concerned because of the OS with wedge, Has any of you been in a similar situation? If so what did you do and how did it go?
So happy to be able to share with all of you.Thanks,@lilly2

REPLY
@lilly2

Hi,I recently had my biopsy at Mayo and diagnosed with NSCLC adenocarcinoma 1A peripheral nodule.Ofcourse this is shocking to me I soent months searching online for every other thing that this could possibly be and hoping it was anything but this. The surgeon suggested doing a wedge resecrion with ample margins, I think if thiks were a GGO or minimally invasive I would feel more at ease.The Dr, said we could also do lobectomy.After reseacrching Im concerned because of the OS with wedge, Has any of you been in a similar situation? If so what did you do and how did it go?
So happy to be able to share with all of you.Thanks,@lilly2

Jump to this post

@lilly2, I'd like to bring you into this discussion with other members of the Lung Cancer group who have multifocal adenocarinoma like @jamineibs @merpreb @lls8000 @sakota @meka @linda10 and others. They may be able to share their surgical experiences and the options they had.

Lilly, When do you have to decide between a lobectomy or a wedge resection?

REPLY
@colleenyoung

@lilly2, I'd like to bring you into this discussion with other members of the Lung Cancer group who have multifocal adenocarinoma like @jamineibs @merpreb @lls8000 @sakota @meka @linda10 and others. They may be able to share their surgical experiences and the options they had.

Lilly, When do you have to decide between a lobectomy or a wedge resection?

Jump to this post

@ Colleen Young, Hi, I think thats a great idea.Thank you! I need to decide by middle of next week. The clock is ticking

REPLY
@colleenyoung

@lilly2, I'd like to bring you into this discussion with other members of the Lung Cancer group who have multifocal adenocarinoma like @jamineibs @merpreb @lls8000 @sakota @meka @linda10 and others. They may be able to share their surgical experiences and the options they had.

Lilly, When do you have to decide between a lobectomy or a wedge resection?

Jump to this post

Best of luck to you @lilly2! You have a tough decision to make. I have avoided surgery so I’m not much help (stage IV). Knowing that your team has offered both options can reassure you that each option is a good one. Wishing you good luck with your decision and the surgery, take care!, Lisa

REPLY
Please sign in or register to post a reply.
  Request Appointment