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Mentor

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 Support Group.

sakota9 (Joan) | @sakota | Apr 18, 2019

Hi Merry, I don't think so but was just something that went thru my mind to explain these other episodes. I had the stereotactic body radiation too so really didn't think it would cause problems in the brain. MY gp is scheduling me an appoint with a neurologist......Will keep you informed..... Thanks for all your wonderful support.

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alamogal635 | @alamogal635 | Apr 18, 2019
In reply to @sakota "This may sound like a dumb question but when you have radiation treatments for lung cancer..." + (show)
@sakota

This may sound like a dumb question but when you have radiation treatments for lung cancer can that do damage to any other part of your body, like I am thinking of brain. Or is it too precise to do something like that.

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@sakota Agree with Merry. It is a great question. I am going to read the answer tsoo. Know so very little about radiation treatment.

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Mentor
Merry, Volunteer Mentor | @merpreb | Nov 15, 2019
In reply to @merpreb "@teresalane- I am sincerely sorry for the loss of your parents. That must have been very..." + (show)
@merpreb

@teresalane- I am sincerely sorry for the loss of your parents. That must have been very difficult to watch. My mom died of Parkinson's disease and it was just heartbreaking to see her suffer and not understand what was happening.

I think that I remember you saying that. Doctors refer to NSCLC as the good kind because Adencarinoma cancer is usually much slower growing than small cell. I don't know if lung cancer can be genetic. I'll have to check on that.

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@teresalane- Hello. I've been thinking about you and wonder how you are faring. Are you feeling well?

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1 reply
teresalane | @teresalane | Nov 15, 2019
In reply to @merpreb "@teresalane- Hello. I've been thinking about you and wonder how you are faring. Are you feeling..." + (show)
@merpreb

@teresalane- Hello. I've been thinking about you and wonder how you are faring. Are you feeling well?

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Thank you Merry. Still in a holding pattern. I've had 3 CT scans now with another scheduled for Jan 2020. My second scan showed a few more nodules and a couple of the ones grew a bit. No one seems to concerned. In between the second and third scan I found some skin cancer that had to be removed off of my shoulder. Not related per my doctors and completely cleared. My 3rd scan showed a few more nodules. We requested a meeting with my pulmonologist to understand how many is too many. He says right now, because it is early still, I need to get scans every 6 months until something or nothing changes. I try not to think too much about it until my CT date comes closer and then it becomes all consuming. Kaiser isn't an aggressive type of hospital so keeping up to date on all new information is key. You really have to be your own advocate. I do have faith and trust in my doctors so that helps. I really appreciate you reaching out to check on me. I have been pretty vocal about lung cancer and how more people die from lung cancer than most other cancers combined, including breast cancer...with only 6% of research funds going to finding a cure. The Today Show had a piece on their show yesterday that shined a light on how widespread and neglected this cancer is. I hope you are doing well. Thanks again for checking on me!

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1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Nov 16, 2019
In reply to @teresalane "Thank you Merry. Still in a holding pattern. I've had 3 CT scans now with another..." + (show)
@teresalane

Thank you Merry. Still in a holding pattern. I've had 3 CT scans now with another scheduled for Jan 2020. My second scan showed a few more nodules and a couple of the ones grew a bit. No one seems to concerned. In between the second and third scan I found some skin cancer that had to be removed off of my shoulder. Not related per my doctors and completely cleared. My 3rd scan showed a few more nodules. We requested a meeting with my pulmonologist to understand how many is too many. He says right now, because it is early still, I need to get scans every 6 months until something or nothing changes. I try not to think too much about it until my CT date comes closer and then it becomes all consuming. Kaiser isn't an aggressive type of hospital so keeping up to date on all new information is key. You really have to be your own advocate. I do have faith and trust in my doctors so that helps. I really appreciate you reaching out to check on me. I have been pretty vocal about lung cancer and how more people die from lung cancer than most other cancers combined, including breast cancer...with only 6% of research funds going to finding a cure. The Today Show had a piece on their show yesterday that shined a light on how widespread and neglected this cancer is. I hope you are doing well. Thanks again for checking on me!

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@teresalane- Good morning Teresa. I am so happy that you responded! I hear you about the holding pattern. This report sounds just like mine. My next one is early next month. It's great to advocate for lung cancer. One way is to check in on us here at Mayo Connect in this group; if not responding to someone's post than to start a new discussion, perhaps about an experience that you would like to share.
I'm glad that you acted to have your skin cancer treated. You can post your experience right here in the Cancer group. Will you need any treatments for it?

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1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Dec 15, 2019
In reply to @merpreb "@teresalane- Good morning Teresa. I am so happy that you responded! I hear you about the..." + (show)
@merpreb

@teresalane- Good morning Teresa. I am so happy that you responded! I hear you about the holding pattern. This report sounds just like mine. My next one is early next month. It's great to advocate for lung cancer. One way is to check in on us here at Mayo Connect in this group; if not responding to someone's post than to start a new discussion, perhaps about an experience that you would like to share.
I'm glad that you acted to have your skin cancer treated. You can post your experience right here in the Cancer group. Will you need any treatments for it?

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@teresalane- Hello. I haven't heard from you in a bit and am wondering how you are holding up in this crazy season.

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sakota9 (Joan) | @sakota | Dec 22, 2019

Hello. And a merry christmas to everyone. I should be thankful for all my blessings. But somedays. I am so tired cant do much anymore i try to do things but its getting. Worse. Its back to waiting game for lung cancer. So they say its changed in your left lung but its too small yet to do a biopsy so come back in 6 months for ct scan. I know there are a lot of people who are worse off than i. Also now im dealing with bladder infection and its hard to get rid of. I am just so tired

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2 replies
Mentor
Merry, Volunteer Mentor | @merpreb | Dec 22, 2019

@sakota- Hi Joan. It's always so good to hear from you. I'm on a 6 month check up as there are a few suspected lesions in my left lung too and many, many small ones. In 6 months if anything has moved it will probably be zapped and not biopsied. This is what is very hard about Multi-focal adenocarcinoma, the roller coaster ride. Have you been in an exercise program at all? That would help with fatigue. Also it hasn't been a year yet since your surgery has it? But even if it's been a bit over that you would at times still feel tired.
Now bladder infections can really cause fatigue. Are you being seen by a doctor for it? If you are on antibiotics they are big culprits for fatigue. My last bladder infection was a doozy, very high fever too. Here is a recent conversation about bladder infections that you might want to join in:
https://connect.mayoclinic.org/discussion/chronic-bladder-infection-using-a-gentamycin-bladder-wash/?pg=1#comment-354311

I hope that you will be able to enjoy the holiday- get well soon!

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Mentor
Merry, Volunteer Mentor | @merpreb | Jan 13, 2020
In reply to @sakota "Hello. And a merry christmas to everyone. I should be thankful for all my blessings. But..." + (show)
@sakota

Hello. And a merry christmas to everyone. I should be thankful for all my blessings. But somedays. I am so tired cant do much anymore i try to do things but its getting. Worse. Its back to waiting game for lung cancer. So they say its changed in your left lung but its too small yet to do a biopsy so come back in 6 months for ct scan. I know there are a lot of people who are worse off than i. Also now im dealing with bladder infection and its hard to get rid of. I am just so tired

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@sakota- Happy New Year! How is your fatigue? Has your bladder infection cleared up?

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cornucopia | @cornucopia | Jan 21, 2020
In reply to @merpreb "Sakota- great news! My CT scan in early Feb and I can feel the tension build..." + (show)
@merpreb

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.

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How wonderful! You are obviously a fighter and that plus modern medicine will create miracles for you.

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