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.

@lilly2

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

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Lilly. Everyone's condition and circumstances are different and your medical care team can best help you with this decision. When faced with tough discussions as this, I asked the oncologist and surgeon what their choice of care would be if this situation was part of their own family. This open dialog seemed to help me understand and decide.
You are so fortunate that your condition was found early and both of your options seem to be good.
As for me, two years ago I had a right upper lobectomy for a stage 1A Adenocarcinoma and Monday this week, had a wedge resection on a 7mm suspicious nodule in the lower left lobe, which also was an Adenocarcinoma. I feel both surgeries were selected for the right reasons.
The first day/night after my surgeries were quite uncomfortable and gradually gets better, But medication and care got me through this. For me, so far, recovery of both surgeries is similar, but would say the lobectomy set me back a bit more. If you have other questions, please let us know. Please share with us as much as you feel comfortable with. I am wishing you the best. …and….Happy Thanksgiving.

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@lilly2

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

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@lilly2 in September I had wedge resection surgery in my upper left lobe to remove 2 nodules from upper left lobe – largest 12mm x 13 mm. I still have 3 smaller nodules in 3 other lobes – all of my tumors are GGO.
My boyfriend had lobectomy of right upper lobe due to a 31mm x 34mm tumor. He also has one other small GGO in upper left.

I chose the wedge resection because I have multiple nodules and because with adenocarcinoma they can keep popping up. If/when the other nodules start to change, I obviously can’t have 5 lobectomies so I determined it would be best to preserve as much lung capacity as possible for as long as possible. I mean what if one of these other nodules starts acting more aggressive and increases rapidly to a size they don’t recommend wedge. Then I’d have to take a second lobe too? Sounded to quick and drastic at first. I figured I can always go back and have the lobectomy if I had too.
I am 50 years old and otherwise pretty healthy. I’m no fitness buff, but for health reasons fitness and being physically active is a large part of my life. The surgery went really well, I was in the hospital 1 night. I was back to exercise more than walking in about 4 weeks lower body and full weight lifting and cardio in 5 weeks. I notice my breathing is a little more labored with exercise, but not a lot and it is getting better.

Gordie chose the lobectomy at the surgeons recommendation based on tumor size. Since he did not have prior confirmation with biopsy only PET, they did wedge and check pathology – after confirm cancer, took lobe.
He is not into fitness and a lot of physical activity is not a major concern for him. Understanding that losing one lobe would not be a major change in his lifestyle, he accepted that path easily.

If you have any questions about anything, I’m happy to answer. I wish you peace as you make your decision. It is not an easy one.

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@stanleykent

Lilly. Everyone's condition and circumstances are different and your medical care team can best help you with this decision. When faced with tough discussions as this, I asked the oncologist and surgeon what their choice of care would be if this situation was part of their own family. This open dialog seemed to help me understand and decide.
You are so fortunate that your condition was found early and both of your options seem to be good.
As for me, two years ago I had a right upper lobectomy for a stage 1A Adenocarcinoma and Monday this week, had a wedge resection on a 7mm suspicious nodule in the lower left lobe, which also was an Adenocarcinoma. I feel both surgeries were selected for the right reasons.
The first day/night after my surgeries were quite uncomfortable and gradually gets better, But medication and care got me through this. For me, so far, recovery of both surgeries is similar, but would say the lobectomy set me back a bit more. If you have other questions, please let us know. Please share with us as much as you feel comfortable with. I am wishing you the best. …and….Happy Thanksgiving.

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Hi Stan , sorry it took so long for my reply. I hope you're feeling somewhat better this week. I really appreciate your input. My surgury is on hold since I had a Ct test of my heart and have to have an angiogram to be certain if there is or isnt a problem.How are you feeling? Thanks!

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@jamineibs

@lilly2 in September I had wedge resection surgery in my upper left lobe to remove 2 nodules from upper left lobe – largest 12mm x 13 mm. I still have 3 smaller nodules in 3 other lobes – all of my tumors are GGO.
My boyfriend had lobectomy of right upper lobe due to a 31mm x 34mm tumor. He also has one other small GGO in upper left.

I chose the wedge resection because I have multiple nodules and because with adenocarcinoma they can keep popping up. If/when the other nodules start to change, I obviously can’t have 5 lobectomies so I determined it would be best to preserve as much lung capacity as possible for as long as possible. I mean what if one of these other nodules starts acting more aggressive and increases rapidly to a size they don’t recommend wedge. Then I’d have to take a second lobe too? Sounded to quick and drastic at first. I figured I can always go back and have the lobectomy if I had too.
I am 50 years old and otherwise pretty healthy. I’m no fitness buff, but for health reasons fitness and being physically active is a large part of my life. The surgery went really well, I was in the hospital 1 night. I was back to exercise more than walking in about 4 weeks lower body and full weight lifting and cardio in 5 weeks. I notice my breathing is a little more labored with exercise, but not a lot and it is getting better.

Gordie chose the lobectomy at the surgeons recommendation based on tumor size. Since he did not have prior confirmation with biopsy only PET, they did wedge and check pathology – after confirm cancer, took lobe.
He is not into fitness and a lot of physical activity is not a major concern for him. Understanding that losing one lobe would not be a major change in his lifestyle, he accepted that path easily.

If you have any questions about anything, I’m happy to answer. I wish you peace as you make your decision. It is not an easy one.

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Hi @jamineibs, Great that yours are all GGO. My dominent nodule is in upper left lobe 1.1 cm its a solid nodule.I also have 3 others that are too small to determine between 2mm-3mm but they are GGO right now. I think if this nodule was a GGO I would definitely go witha wedge with ample margins but its not….still not certain. Thank you for sharing!!! wish you all the best

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@lls8000

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

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@lls8000 Hi Lisa, I appreciate your good wishes…TY.I hope you are feeling well. Im on hold due to a possible heart problem. All the best to you Lisa!!!

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@lilly2

Hi Stan , sorry it took so long for my reply. I hope you're feeling somewhat better this week. I really appreciate your input. My surgury is on hold since I had a Ct test of my heart and have to have an angiogram to be certain if there is or isnt a problem.How are you feeling? Thanks!

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Lilly2, I'm feeling better. Day 1-5 was better each day, day 6-7 were steps backward and the past two days are much better. Pain medication is half of what it was a week ago. I hope they find your heart is ok. Stay in touch

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Hello Everyone- As some of you know I have a new lesion that will need treatment. I have set up Zoom calls with both my oncologist and surgeon to discuss what my treatment options should be for this week. They have both seen and read the CT scan and reports which suggest that the lesion is cancerous.
https://connect.mayoclinic.org/discussion/multiple-lung-nodules/?pg=10#comment-671321
It's been a long time (4 years) since I have needed treatment so I would love to ask your help with mine!

1. What are my treatment options?
2. I have mutations- how do they affect my cancer?
3. Do I need a biopsy?
4. Is this the same area that had SBRT before?
5. If immunotherapy is an option, which ones, why, and side effects?
6. Are the goals the same for my care?

Will you help add to this or change the wording for me?

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@merpreb

Hello Everyone- As some of you know I have a new lesion that will need treatment. I have set up Zoom calls with both my oncologist and surgeon to discuss what my treatment options should be for this week. They have both seen and read the CT scan and reports which suggest that the lesion is cancerous.
https://connect.mayoclinic.org/discussion/multiple-lung-nodules/?pg=10#comment-671321
It's been a long time (4 years) since I have needed treatment so I would love to ask your help with mine!

1. What are my treatment options?
2. I have mutations- how do they affect my cancer?
3. Do I need a biopsy?
4. Is this the same area that had SBRT before?
5. If immunotherapy is an option, which ones, why, and side effects?
6. Are the goals the same for my care?

Will you help add to this or change the wording for me?

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Am so sorry to hear you have another lesion. You have experienced and through this forum, know of the many treatment paths, and over time, the medical world is evolving as well. It really challenges ones mental and physical stress levels.
Your good list of questions will prime the needed conversations.
You could ask about a PET for diagnosis and as far as treatment, Ablation could be an option.???
For my couple nodules, the doctors preferred to do surgery, provided my lung function and health could tolerate it. You and your doctors will need to determine the best path based on the past and current conditions. Please keep us informed and the best of luck to you.

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@stanleykent

Am so sorry to hear you have another lesion. You have experienced and through this forum, know of the many treatment paths, and over time, the medical world is evolving as well. It really challenges ones mental and physical stress levels.
Your good list of questions will prime the needed conversations.
You could ask about a PET for diagnosis and as far as treatment, Ablation could be an option.???
For my couple nodules, the doctors preferred to do surgery, provided my lung function and health could tolerate it. You and your doctors will need to determine the best path based on the past and current conditions. Please keep us informed and the best of luck to you.

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Thank you so much, Stan. I have Multifocal Adenocarcinoma and it is a rare (getting less so) sub- NSCLC. It consisted of multiple primary cancers rather than metastases and needs to be treated much differently. I've had this for many many years and the reason that SBRT would be used is that it's the safest, tissue-sparing treatment that will actually kill the lesion. It will be no more!

I'm not sure if they will do a PET scan unless they have to as part as the protocol. My team knows what needs to be done as I've had about 7 of these removed so far, including 2 lobes!

How are you doing? When was your last surgery?

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My surgery was 11/22/21. I'm feeling good. The surgery pains are gone or have evolved to a tolerable, new normal, level.
When was your last CT completed and curious as to the changes that has caused their concern? Thanks and let us know how it goes.

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@stanleykent

My surgery was 11/22/21. I'm feeling good. The surgery pains are gone or have evolved to a tolerable, new normal, level.
When was your last CT completed and curious as to the changes that has caused their concern? Thanks and let us know how it goes.

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Good morning Stan. I hope that you are moving forward and have an exercise program too.

My last CT scan was last week and there is a lesion that will need SBRT either this June or next year. It's part of my multifocal adenocarcinoma. Thank you for asking.

I went to my hospital for pulmonary rehab. It's so worthwhile! Have you heard of this?

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@merpreb

Good morning Stan. I hope that you are moving forward and have an exercise program too.

My last CT scan was last week and there is a lesion that will need SBRT either this June or next year. It's part of my multifocal adenocarcinoma. Thank you for asking.

I went to my hospital for pulmonary rehab. It's so worthwhile! Have you heard of this?

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Merry,
I'm curious as to why you are waiting til June or after to receive SBRT.? Or do they want to see if there is a change during that period ?
For me, Pulmonary rehab has not been mentioned. I was given a Pulmonary Function Test prior to both surgeries and results were good. After both surgeries, I was encouraged to periodically use the provided Spirometer. My wedge surgery was two months ago and the sprirometer shows I'm back to pre-surgery levels. Through all of this , a Pulmonary specialist has not been mentioned or recommended . I'll have to ask the oncologist at my next followup. Thanks

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