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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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All at once. After the lobectomy, the surgeon saw suspicious tissue and did the wedge on the lower left.
Are you saying they did a wedge resection in a different lobe after the LUL lobectomy all at once?
I know the risks of radiation, as I had it some years ago when I was first diagnosed. It does do some damage to the lungs, plus I also have copd. Also had wedge out of my right lower lobe and the middle lobe totally removed. And now its time to make decisions again. So between copd and the lung cancer........what is going to be my quality of life. Right now, I already live in assisted living. Also whats with the cpaps, guess I need to do some research.
I was diagnosed with multifocal nsclc in Dec 2023. 2 in left upper lobe diagnosed as adenocarcinoma, 1 in left lower lobe, and 2 in right upper lobe. The 2 in lul showed 3.2 and 4.1 uptake on pet. I had left upper lobe lobectomy in early February, confirmed both adenocarcinoma. They also did a wedge resection all, atypical cells, aah (not yet cancer). They staged 2b because 2 nodules in same lobe; both lesd than 14 cm. Not sure why they assumed intrapulmonary metastasis rather than synchronous.
Started chemo, pemetrexed carboplatin and finished 2 cycles, 2 to go. Then one year Keytruda
No idea about the ones in the right lung yet. Scans will be done when I finish chemo. If worrisome, I'll have sbrt.
I still don't know how to interpret all of this. I had my surgery at Moffitt. They're very good but if I had it to do over again I would go to Mayo, where they have a multifocal program.
Your Radiation Oncologist should explain potential side effects. I am 83 and last August I had 3 sessions SBRT for RUL (2 nodules). It is painless. I did develop radiation-induced pneumonitis two months later and took Prednisone for that. I have Pulmonary Fibrosis.
Good Morning all. The other shoe has dropped. After a few years of just having CT scans and checking my lungs every 3 - 6 months Now things have changed and I have two spots one in each lung that are growing. I will have a PET scan next to see if any more things show up. From there I go to radiation...... do they do both at the same time, do they do first one and then do the next. Surgery is out of the question for me due to other health issues. My next thought in my mind is that I am 80 years old, live in assisted living now, and wondering if my body can withstand the radiations treatments. Do I say forget it and I will live my life as best as I can. I am diabetic, have congestive heart failure, copd to name a few. My daughters and I will have to discuss this. My husband has passed away. So its the three of us. Thanks for listening and and May the Lord keep everyone safe in His arms.
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4 Reactions@trudyhs, I was also first diagnosed in March 2020, what a crazy time it was to be dealing with lung cancer on top of everything else in the world at that time. I went straight to a targeted therapy as my first line treatment, and I'm still on that therapy today. Your doctors must have done biomarker testing on your samples if they are mentioning the exon 14 skipping mutation. I would ask about potential targeted therapy options, and if there are benefits of immunotherapy or those targeted therapy options (assuming that there are options that are a good fit for your specific mutation). I hope you are able to get your questions answered, good luck with your appointment. Keep us posted.
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1 ReactionHello,
I was diagnosed March 2020. Had a VATS lobectomy of UL to remove 5.2cm nodule, followed by 4 rounds of chemo due to the size. We've been watching several nodules in right lung since then and decided to move forward with RATS segmentectomy upper and lower right, which took place March 2024. Final decisions on treatment, if any, have not been made yet although oncologist suggested chemo followed by immunotherapy. I have a few questions for him before I will feel comfortable with that plan. So, it's a work in progress!
Not sure but I think I have Exon 20 and Ros1. I was very very qualified for the Xalkori and so far it is working.
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2 ReactionsHello @trudyhs, I have a different mutation, ALK. Were you recently diagnosed? Have you started any treatment yet? Possibly a targeted therapy, capmatinib or tepotinib?
@dedehans, is this the same mutation that you have?
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