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.

Merry, linda……….. Hi everyone, its been a while since I was in here …… just busy getting appointments done. Just got back from Mayo and the multifocal adenocarcinoma has returned. They have been watching it for awhile so they left the decision up to me to either let it go yet or get the radiation treatments.
I went for the radiation now as who knows, what shape I will be in later. My copd is getting worse. said my lungs are getting smaller due to the fact of curvature of the spine which doesn't let my lungs expand enough for me to get all the air I need. Then I had my colonoscopy and had three polyps but they were benighn…Whoope something turned out right. Sometimes I get so tired , then other times, I laugh and say ok, whats next on the list that I will have to deal with!!! Hope you all are keeping the faith, doing what you have to do and saying prayers for the good Lord to help us thru all this. My prayers for you all. Joan

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@sakota

Merry, linda……….. Hi everyone, its been a while since I was in here …… just busy getting appointments done. Just got back from Mayo and the multifocal adenocarcinoma has returned. They have been watching it for awhile so they left the decision up to me to either let it go yet or get the radiation treatments.
I went for the radiation now as who knows, what shape I will be in later. My copd is getting worse. said my lungs are getting smaller due to the fact of curvature of the spine which doesn't let my lungs expand enough for me to get all the air I need. Then I had my colonoscopy and had three polyps but they were benighn…Whoope something turned out right. Sometimes I get so tired , then other times, I laugh and say ok, whats next on the list that I will have to deal with!!! Hope you all are keeping the faith, doing what you have to do and saying prayers for the good Lord to help us thru all this. My prayers for you all. Joan

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Joan it’s so nice to hear from you! Happy to hear you are keeping on top of everything. It’s a difficult decision when you have multifocal lung cancer. I’m still waiting for the Mayo to schedule me back, however the area they’re watching on me seems to be enlarging scar tissue. I think as we age sometimes we become more tired. I find I’m more tired when I’m bored. When I have things to do I can be like the energizer bunny. When are you scheduled for your radiation? Prayers all goes well for you. Please continue to keep us updated on your journey. Hugs to all.

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Good to hear from everyone. Joan, what kind of radiation?? Wishing for a fairly short visit this time,lol. Leaving tomorrow early. Maybe it's scar tissue for me too. Do you ever just sense things??

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@sakota

Merry, linda……….. Hi everyone, its been a while since I was in here …… just busy getting appointments done. Just got back from Mayo and the multifocal adenocarcinoma has returned. They have been watching it for awhile so they left the decision up to me to either let it go yet or get the radiation treatments.
I went for the radiation now as who knows, what shape I will be in later. My copd is getting worse. said my lungs are getting smaller due to the fact of curvature of the spine which doesn't let my lungs expand enough for me to get all the air I need. Then I had my colonoscopy and had three polyps but they were benighn…Whoope something turned out right. Sometimes I get so tired , then other times, I laugh and say ok, whats next on the list that I will have to deal with!!! Hope you all are keeping the faith, doing what you have to do and saying prayers for the good Lord to help us thru all this. My prayers for you all. Joan

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@sakota, @bluelagoon; linda10, @meka– Hi everyone! Joan, are you having SBRT? How many sessions will you have? I'm dreading my virtual visit with my doctors tomorrow. I had my CT Wednesday. They are looking at a couple of areas in my lower left lobe. and my radiologist is keeping an eye on one of my SBRT sites because of scar tissue that keeps changing. If I have to have another zapping I think that my radiologist will put me on prednisone because I had a bad reaction to Proton radiation..lots of irritation in my lung. I'll know more tomorrow! It's been almost 3 years since my last one!

It's so great to hear from you all. Glad that you made it through the virus, so far at least!

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@merpreb

@sakota, @bluelagoon; linda10, @meka– Hi everyone! Joan, are you having SBRT? How many sessions will you have? I'm dreading my virtual visit with my doctors tomorrow. I had my CT Wednesday. They are looking at a couple of areas in my lower left lobe. and my radiologist is keeping an eye on one of my SBRT sites because of scar tissue that keeps changing. If I have to have another zapping I think that my radiologist will put me on prednisone because I had a bad reaction to Proton radiation..lots of irritation in my lung. I'll know more tomorrow! It's been almost 3 years since my last one!

It's so great to hear from you all. Glad that you made it through the virus, so far at least!

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Merry, good luck tomorrow!! No one mentioned bad reaction to proton as a possibility. Just keep trying to say, "oh what will I learn this time?"

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@meka

Merry, good luck tomorrow!! No one mentioned bad reaction to proton as a possibility. Just keep trying to say, "oh what will I learn this time?"

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@meka– All is good! the scar tissue from radiation has stabilized and is not a new lesion. The other one has only grown 3 mm in 5 years. Next appointment in 6 months!!!

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Six months, wow, seems like a long time, lol. Appointments today, will update.

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@meka

Six months, wow, seems like a long time, lol. Appointments today, will update.

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@merry@sakota@bluelagoon@meka Hi all. Have been back and forth to the Mayo since September 1. CT showed scar tissue area still enlarging. Had a biopsy and it’s a recurrence. Lymph nodes were negative so that was good news. Had an MRI on my head on Tuesday which also was negative so next week will be 5 days SBRT. Everything else looks good so I’m hopeful that we can get through next week and that will hold things at bay for a while -and I mean a good long while😊. Please feel free to throw all prayers and good vibes my way. I will keep you all updated.

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Coming your way whatever you need. I go back first week of October and am very worried about the same situation you're going through, plus biopsy on thyroid. Feel like the "scar tissue", has continued to grow.
Question for the group, is there a person or whatever that can help make sure that all of your care is coordinated. I have thorasic, radiation, endocrine, internal, pulmonary and have no idea if anybody communicates with each other. Feel like appointments are backwards, found some important info on my harmful exposures while in the military, ( how can I share it with all the areas?). Any advice welcome.

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@meka

Coming your way whatever you need. I go back first week of October and am very worried about the same situation you're going through, plus biopsy on thyroid. Feel like the "scar tissue", has continued to grow.
Question for the group, is there a person or whatever that can help make sure that all of your care is coordinated. I have thorasic, radiation, endocrine, internal, pulmonary and have no idea if anybody communicates with each other. Feel like appointments are backwards, found some important info on my harmful exposures while in the military, ( how can I share it with all the areas?). Any advice welcome.

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@meka so sorry you’re feeling all your Drs are not communicating. I am seeing a radiation oncologist and he’s in charge of everything being done. Before that I followed up with my surgeon for 8 1/2 years and he coordinated all my care. There should be someone in charge of overseeing your care. I would question everyone if I was you. Please keep us posted.

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@linda10

@merry@sakota@bluelagoon@meka Hi all. Have been back and forth to the Mayo since September 1. CT showed scar tissue area still enlarging. Had a biopsy and it’s a recurrence. Lymph nodes were negative so that was good news. Had an MRI on my head on Tuesday which also was negative so next week will be 5 days SBRT. Everything else looks good so I’m hopeful that we can get through next week and that will hold things at bay for a while -and I mean a good long while😊. Please feel free to throw all prayers and good vibes my way. I will keep you all updated.

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@linda10– Darn! At least we have SBRT now! My scar tissue from SBRT finally stopped growing so they decided not to do a biopsy.

Know that we are all here and will walk with you through all of this! I'm sure that you will breeze through this and remember to rest, rest, rest when you need to!

Is the area of scar tissue from a previous SBRT?
Merry

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@meka

Coming your way whatever you need. I go back first week of October and am very worried about the same situation you're going through, plus biopsy on thyroid. Feel like the "scar tissue", has continued to grow.
Question for the group, is there a person or whatever that can help make sure that all of your care is coordinated. I have thorasic, radiation, endocrine, internal, pulmonary and have no idea if anybody communicates with each other. Feel like appointments are backwards, found some important info on my harmful exposures while in the military, ( how can I share it with all the areas?). Any advice welcome.

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@meka– I agree with Linda about having one person coordinate your treatment plans. At MGH it's my oncologist who coordinates mine but I am also in touch with my surgeon and radiologist throughout the year. When I have a meeting to go over my CT scans or MRI's my Oncologist has spoken to everyone. All three have been my team all through this. Find out from the head of the department who it should be for you, please.

You should never have had this problem. Are you at Mayo?

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