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Multifocal Adenocarcinoma of the lung, continual recurrences
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.
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I now know I have multifocal adenocarcinoma also....... I had VAT surgery with 3.1cm nodule removed end of December. Stage was 1b because of size, lymph nodes negative, 1 cm margins negative. I have at least 3 more small nodules (one in the other lung) and GGO in both lungs. I am waiting for an appointment to be set up so I can get information on what my future treatment plan will look like. I am an active 80-year-old, and supported surgery well. I went from a chest x-ray . CT scan, PET scan to VAT surgery in 7 weeks. I didn't want to waste time. I have been reading some of your posts to try and figure out my future. I would like to go on vacation somewhere
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2 ReactionsGood morning Stan- Due to the amount of lung tissue that I have left, because of my past lung cancers my team waits until it's absolutely necessary, without doing a biopsy, that my lesions will grow and need to be removed. Quite a sentence, eh? 🙂 I don't mind because if I wait until June, as my lungs heal from the radiation I won't be able to be very active. And during the summer months in NE, it's very humid and I have to stay in for the most part anyway!
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1 ReactionMerry,
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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1 ReactionGood 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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1 ReactionMy 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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1 ReactionThank 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?
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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3 ReactionsHello 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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1 ReactionLilly2, 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
@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!!!