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.

@akfishinmom1

I was wondering if anyone with multifolcal lung cancer in this group has ever been offered targeted therapy to get rid of or reduce the remaining lesions they might have?

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Good morning @akfishinmom1-Yes, it's what is used now for multifocal lung cancer if surgery isn't the best choice.

This procedure is sometimes called stereotactic body radiotherapy (SBRT) or stereotactic ablative radiotherapy (SABR). The procedure uses many precisely focused radiation beams to treat tumors. It's quick, as far as the number of radiating days and there are very few side effects. Fatigue is the biggest side effect that I have found. I've had it twice and it looks like I will have my third this year.

It's painless and you get to lie still for about an hour and dream! Do you have any concerns?

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@vic83

I was going to ask if anyone had a persistent cough after VAT surgery and removal of lung nodule. But things change. It is now five weeks since my VATs surgery. I begin to have a mild dry cough just days after surgery, no big deal. But about five days ago, the cough became far more frequent and more "congested" with some mucous coming up. I called my surgeon's office yesterday, and they said get tested. I thought it was a waste of time, because I am literally a hermit, but I went to a drive-in testing place and at 8am this morning I got the news that I am Covid positive. I don't have a fever, and don't really feel sick, just the cough which seems better today than two days ago. I had my PFIZER BOOSTER at very end of September 2021. I qualified for emergency antiviral treatment, and it was delivered in two hours to my door. At least something works! I am currently on night oxygen, because my oxygen levels fell during night when I was in hospital. Anyone else had Covid in such circumstances?

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@vic83– You poor thing! As if recovery wasn't hard enough! A lot of us with lung cancer are extra, extra careful about COVID 19. I hope that you heal quickly. Please take care and get a lot of rest, even people with mild cases can have symptoms for a while.

I've been lucky, so far in not having had COVID or its variants. Are you tolerating the meds well?

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@merpreb

Good morning @akfishinmom1-Yes, it's what is used now for multifocal lung cancer if surgery isn't the best choice.

This procedure is sometimes called stereotactic body radiotherapy (SBRT) or stereotactic ablative radiotherapy (SABR). The procedure uses many precisely focused radiation beams to treat tumors. It's quick, as far as the number of radiating days and there are very few side effects. Fatigue is the biggest side effect that I have found. I've had it twice and it looks like I will have my third this year.

It's painless and you get to lie still for about an hour and dream! Do you have any concerns?

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Thank you for your reply Merry. My surgeon did mention this for further treatment if needed. I don’t think he’s a big advocate for multiple surgeries. I was wondering about immunotherapy since my biomarker test came back positive for EFGR. Can they not treat remaining lesions with medication before they become cancerous? My oncologist was not very good at explaining what the biomarker test meant other than she did have a discussion with the surgeon about it. Since I did have segmentectomy surgery I assume he thought that was the better option. I wish I would have been included in on that conversation.

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Yesterday, I had a full day of Molnupiravir (800 mg/day for five days) and I woke up feeling great. Much less shortness of breathe, and reduced congested cough. The problems is Covid mimics the same symptoms I already had. Shortness of breath. And I had a dry cough after surgery which is not uncommon. While I did wonder why I didn't feel better going into my fifth week from surgery, I did not have a fever, and the only real change was that my cough had gotten much worse and was congested. And I had avoided ALL people so how could I catch Covid? Everyone is shocked, because they know I am a fanatic about avoiding Covid and wearing a mask. It is scary because one has to watch one's oxygen levels, and go to the ER if they go below 91. Buy a good home oximeter now while you can wait for delivery, because they are hard to find. I had my booster the end of September – everyone should get it!!!!

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@akfishinmom1

Thank you for your reply Merry. My surgeon did mention this for further treatment if needed. I don’t think he’s a big advocate for multiple surgeries. I was wondering about immunotherapy since my biomarker test came back positive for EFGR. Can they not treat remaining lesions with medication before they become cancerous? My oncologist was not very good at explaining what the biomarker test meant other than she did have a discussion with the surgeon about it. Since I did have segmentectomy surgery I assume he thought that was the better option. I wish I would have been included in on that conversation.

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@akfishinmom1– You hit the nail on its head! The problem with treating Multifocal lung cancer is that there isn't enough KNOWN information known yet. To answer your question, with a question- "what would be used to zap the lesions if they aren't cancerous?" I suppose that "do no harm" has something to do with this too. Any treatment will cause some damage to your healthy lung tissue.

If I wasn't involved in a conversation that might answer questions that I had I would get a second opinion. You have the right to have your questions answered so that you understand them. Your biomarker test was to test if there are any variants in your cancer. Lung cancer has several and it's tested because certain treatments have been found to treat them differently. This is used after surgery. It's called immunotherapy.

Have you been told that you will have further treatment?

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@vic83

Yesterday, I had a full day of Molnupiravir (800 mg/day for five days) and I woke up feeling great. Much less shortness of breathe, and reduced congested cough. The problems is Covid mimics the same symptoms I already had. Shortness of breath. And I had a dry cough after surgery which is not uncommon. While I did wonder why I didn't feel better going into my fifth week from surgery, I did not have a fever, and the only real change was that my cough had gotten much worse and was congested. And I had avoided ALL people so how could I catch Covid? Everyone is shocked, because they know I am a fanatic about avoiding Covid and wearing a mask. It is scary because one has to watch one's oxygen levels, and go to the ER if they go below 91. Buy a good home oximeter now while you can wait for delivery, because they are hard to find. I had my booster the end of September – everyone should get it!!!!

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I'm so glad that you received relief! That's a biggy! Any chance that you could have Omicron, the present variant? It's extremely contagious. Were you told anything else?

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@merpreb

I'm so glad that you received relief! That's a biggy! Any chance that you could have Omicron, the present variant? It's extremely contagious. Were you told anything else?

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No, the report just said that I was positive. But Omicron is considered by far the dominant variant. I read "The first signs tend to be congestion and other symptoms of an upper respiratory infection (sore throat, etc.)". You will recall how they said Delta was so much more contagious than earlier Covid and then that Omicron was far more contagious than Delta. I avoided all people and still caught it.

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@vic83

No, the report just said that I was positive. But Omicron is considered by far the dominant variant. I read "The first signs tend to be congestion and other symptoms of an upper respiratory infection (sore throat, etc.)". You will recall how they said Delta was so much more contagious than earlier Covid and then that Omicron was far more contagious than Delta. I avoided all people and still caught it.

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I know. Omicron can be in the air! Rest, drink plenty of water, and if you aren't too ill, walk if the weather is good!

Omicron can last in places that Delta couldn't! WHen do you see your doctor next?

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@merpreb

@akfishinmom1– You hit the nail on its head! The problem with treating Multifocal lung cancer is that there isn't enough KNOWN information known yet. To answer your question, with a question- "what would be used to zap the lesions if they aren't cancerous?" I suppose that "do no harm" has something to do with this too. Any treatment will cause some damage to your healthy lung tissue.

If I wasn't involved in a conversation that might answer questions that I had I would get a second opinion. You have the right to have your questions answered so that you understand them. Your biomarker test was to test if there are any variants in your cancer. Lung cancer has several and it's tested because certain treatments have been found to treat them differently. This is used after surgery. It's called immunotherapy.

Have you been told that you will have further treatment?

Jump to this post

I had a follow up appointment a month after surgery with the oncologist and no treatment was prescribed. Other than a brief conversation about the biomarker test which is when she mentioned she talked to the surgeon about it, the remaining talk was about which stage I was. Very brief appointment. I did not get a postoperative follow up with my surgeon as he also works from a different state and was there at the time. Follow up was with the PA surgical assistant which was a little disappointing since I did have some questions specifically for him. So for now I guess it’s the wait and see approach. I have a 6 month CT scan in March and a appointment with the surgeon to go over it. I am considering a different oncologist as I don’t feel like they are very informative. I guess I just wonder why if you have a biomarker mutation they don’t treat with medication to reduce or get rid of other lesions that could possibly become cancerous and need surgery or radiation. I might be over thinking this but will definitely ask my new oncologist. I think your right that they don’t want to over treat too.

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@akfishinmom1

I had a follow up appointment a month after surgery with the oncologist and no treatment was prescribed. Other than a brief conversation about the biomarker test which is when she mentioned she talked to the surgeon about it, the remaining talk was about which stage I was. Very brief appointment. I did not get a postoperative follow up with my surgeon as he also works from a different state and was there at the time. Follow up was with the PA surgical assistant which was a little disappointing since I did have some questions specifically for him. So for now I guess it’s the wait and see approach. I have a 6 month CT scan in March and a appointment with the surgeon to go over it. I am considering a different oncologist as I don’t feel like they are very informative. I guess I just wonder why if you have a biomarker mutation they don’t treat with medication to reduce or get rid of other lesions that could possibly become cancerous and need surgery or radiation. I might be over thinking this but will definitely ask my new oncologist. I think your right that they don’t want to over treat too.

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Hmm, I guess that I didn't explain myself very well. The reason that they just won't treat other lesions is that they might be healthy, just a simple cell change that will disappear or cause no harm. Doctor's just don't do that because trials and research have found them either unnecessary or harmful to the patient. Hospitals set up certain acceptable protocols for what can and can not be operated on based on the latest research. Doctors have to follow that.

I think that the biomarker test was done in case you needed it in the future. After 24+ years with my multifocal lung cancer, I'm still going strong with SBRT. I've never had immunotherapy.

Is this clearer for you?

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@merpreb

Hmm, I guess that I didn't explain myself very well. The reason that they just won't treat other lesions is that they might be healthy, just a simple cell change that will disappear or cause no harm. Doctor's just don't do that because trials and research have found them either unnecessary or harmful to the patient. Hospitals set up certain acceptable protocols for what can and can not be operated on based on the latest research. Doctors have to follow that.

I think that the biomarker test was done in case you needed it in the future. After 24+ years with my multifocal lung cancer, I'm still going strong with SBRT. I've never had immunotherapy.

Is this clearer for you?

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Yes and thank you so much. It makes sense to just watch and see whether the lesions disappear on their own or something more concerning happens.

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@merpreb

I know. Omicron can be in the air! Rest, drink plenty of water, and if you aren't too ill, walk if the weather is good!

Omicron can last in places that Delta couldn't! WHen do you see your doctor next?

Jump to this post

I am scheduled for third week of March for CT scan and Pulmonologist.

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