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 Support Group.

@merpreb

@linda10- I hate it when we anticipate the test results and they come back unstable, again! The fear doesn't get better, just more familiar and tiring. What is a ggo? I tried googling it and got some sort of sports group. lol My next CT scan is early February.
Keeping up our fight is so important. Every time you post here you help. Please keep it up!!

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I googled and found ground glass opacification.

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Hi Merry,
How are you doing?
I am about to start my first series of radiation treatments. After two VAT wedge resections (RUL & LUL), I will start out just doing one nodule instead of two (safer to avoid pneumonitis) and do the second nodule 3 months or so down the road. It will be SBRT with Photon. Proton requires a more solid nodule. Thankfully I have original Medicare so either is covered. Proton is very expensive.
So how many more nodules do I have to do to catch up to you? Note-that is my idea of humor.
But all these PET scans with the special diet. Anybody know something good to eat? For my PET scan this week I had one hardboiled egg and one hard cheese stick for breakfast. Ugh. They promised me more PET scans, so I need some ideas!
Fortunately, my nerve pain from VAT nine weeks ago is doing much better and I am tapering off the Gabapentin.
Well just wanted to keep the Multifocal thread going!
P.S. I am at Mayo and can go to a closer Mayo Radiation Oncology Center in Northfield. Anyone gone there?

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Hi Merry - you had suggested I post on this blog. I have multifocal disease. I had a RUL March 15, 2023. Three separate primaries in lobe identified. Adenocarcinoma.

They are monitoring 3 smaller lesions in my left lung which are staggered between both left lobes. These were stable between the Jan and March 2023 scans. My next scan is in September. I honestly had no idea what was going on until I found Mayo Connect. My pulmonologist did describe multifocal disease and said my chance of recurrence was higher, but I don't think I really understood until now.

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I have emphesema and have been on 24 hour oxygen since August.
I was diagnosed last January with multifocal carcinoma in both lungs.
Numerous nodules 4 are greater than 1 cm with the largest 14x14 mm.
Going back to Mayo clinic in Jacksonville in October for 4 month follow up and cat scan. Dr A mentioned robotic bx on one of the larger nodules. I have a total of 14 nodules but much smaller.
Last Monday I had a severe HA and blamed it on high blood pressure 200/104
Called my daughter who is a nurse practitioner and was told to test for covid... positive.
Started on molnupuravir, zpac, dexamethasone and Mucinex
Feel better but having increased shortness of breath
I'm concerned that covid could affect my nodules. Unable to find an answer on Google.

I had to have both hips replaced in 1994 due to AVN.
Had revision surgery in 2018.
2 weeks ago my right revision failed and hip slips out of joint with certain movements. Able to get around using a waker.
Appointment at UAB August 24th. Local Orthopedic doctor won't touch me...
Tried to get an appointment at Mayo but no appointments til after January and I can't wait that long. I have fallen twice in 2 weeks.

Any feedback on these nodules and covid is appreciated.
Thanks
Mary

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@marymunzel

I have emphesema and have been on 24 hour oxygen since August.
I was diagnosed last January with multifocal carcinoma in both lungs.
Numerous nodules 4 are greater than 1 cm with the largest 14x14 mm.
Going back to Mayo clinic in Jacksonville in October for 4 month follow up and cat scan. Dr A mentioned robotic bx on one of the larger nodules. I have a total of 14 nodules but much smaller.
Last Monday I had a severe HA and blamed it on high blood pressure 200/104
Called my daughter who is a nurse practitioner and was told to test for covid... positive.
Started on molnupuravir, zpac, dexamethasone and Mucinex
Feel better but having increased shortness of breath
I'm concerned that covid could affect my nodules. Unable to find an answer on Google.

I had to have both hips replaced in 1994 due to AVN.
Had revision surgery in 2018.
2 weeks ago my right revision failed and hip slips out of joint with certain movements. Able to get around using a waker.
Appointment at UAB August 24th. Local Orthopedic doctor won't touch me...
Tried to get an appointment at Mayo but no appointments til after January and I can't wait that long. I have fallen twice in 2 weeks.

Any feedback on these nodules and covid is appreciated.
Thanks
Mary

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Very sorry to hear about your difficulties. It is a lot to deal with.
I have Multifocal (in both lungs, but mostly right lung) and tested positive for Covid twice since my multifocal diagnosis (Dec 2021). I cannot answer about any impact on nodules, just my experience. Covid is a virus causing respiratory illness - so anyone with problem lungs does not want to catch it.
My first Covid was four weeks after my first VAT surgery despite my complete isolation. I noticed I was not as strong as I thought I should be week by week and I had developed a productive cough. They told me to get tested. I was positive. I was prescribed Molnupuravir (Paxlovid, much more effective, was not available). But M. cleared up my cough right away with no further complications. Nothing unusual on following scans. Interestingly I was four months out from my last Covid vaccine - the point where protection really drops off.
My second Covid occurred 8 months later. I knew I had been exposed so was tested and was positive. But I barely had a "headache". Again I was 4 months out from last Covid vaccine. I had a recent Stent placed so I was taking Plavix which meant I could not take Paxlovid drug. Mayo set me up with a monoclonal treatment. I was fine. My nodules have only done what we expected them to do.
Best wishes for recovery.

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@marymunzel

I have emphesema and have been on 24 hour oxygen since August.
I was diagnosed last January with multifocal carcinoma in both lungs.
Numerous nodules 4 are greater than 1 cm with the largest 14x14 mm.
Going back to Mayo clinic in Jacksonville in October for 4 month follow up and cat scan. Dr A mentioned robotic bx on one of the larger nodules. I have a total of 14 nodules but much smaller.
Last Monday I had a severe HA and blamed it on high blood pressure 200/104
Called my daughter who is a nurse practitioner and was told to test for covid... positive.
Started on molnupuravir, zpac, dexamethasone and Mucinex
Feel better but having increased shortness of breath
I'm concerned that covid could affect my nodules. Unable to find an answer on Google.

I had to have both hips replaced in 1994 due to AVN.
Had revision surgery in 2018.
2 weeks ago my right revision failed and hip slips out of joint with certain movements. Able to get around using a waker.
Appointment at UAB August 24th. Local Orthopedic doctor won't touch me...
Tried to get an appointment at Mayo but no appointments til after January and I can't wait that long. I have fallen twice in 2 weeks.

Any feedback on these nodules and covid is appreciated.
Thanks
Mary

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Hi @marymunzel, you've been through so much, but sound strong and determined. Many lung cancer patients have been through Covid, and from what I understand, lung tissue can be impacted differently depending on the person. I have no residual effects of having Covid nearly a year ago (but I'm not monitoring any nodules either).
The wait-and-watch game is not always an easy one, but that's what commonly happens in these cases. Keep us posted on what you find in October. Did you have a previous lung biopsy, that led to the multifocal carcinoma diagnosis?

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@balevine

Hi Merry - you had suggested I post on this blog. I have multifocal disease. I had a RUL March 15, 2023. Three separate primaries in lobe identified. Adenocarcinoma.

They are monitoring 3 smaller lesions in my left lung which are staggered between both left lobes. These were stable between the Jan and March 2023 scans. My next scan is in September. I honestly had no idea what was going on until I found Mayo Connect. My pulmonologist did describe multifocal disease and said my chance of recurrence was higher, but I don't think I really understood until now.

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@balevine, I'm glad you came here, and have been able to learn more about multifocal disease. The schedule of continual scans and doctor appointments is never fun, but if it keeps us on top of any growth, it's worth it! Wishing you the best going forward, and no changes for your September scans.

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Hi all!
I also have multiple (2) nodules. Both adenocarcinomas but not related: genomic analysis did show two different rare mutations…. Lucky me 😜🙄 I was diagnosed in March 2023 and since then two surgeries: no metastasis detected. My first six months CT shows no new nodules. I am 53 yo diagnosed at 52. I am trying to be positive and my pulmonologist is very optimistic: since I am stage 1a for both cancers the oncologist follows me through the pulmonologist.
A new year is going to start soon and for all of us I wish a new year full of joy since I am realizing you can be happy even with cancer!

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@linda10

Hi all! I'm Linda and very new to posting here as you can see above I tried to respond to Sakota and missed the mark. Anyway my first cancer was found accidentally in 2011 by an X-ray because I was so sick with a respiratory illness. I live in a small town and was basically told to get my affairs in order because I had emphysema and metastatic lung cancer. The pulmonologist I saw ordered full house oxygen for my house. I knew I had to get out of here quick. Long story short I called the Mayo Clinic and set up an appointment. The Mayo redid all my tests and I was offered an upper lobectomy which produced a stage 1a adenocarcinoma cancer. I did well until November of 2014 when a ggo changed and produced a 2nd adenocarcinoma in the lower right lobe which was resected with a wedge section and staged again as a 1a. Again 6 month intervals on my CT scans. Things would pop up and we watch. Nothing changes till 2017, this time in the lower left lobe. Surgery in June-another wedge section, would produce a diagnosis of AIS or adenocarcinoma in situ which is basically a pre cancer. June of this year required another wedge section adjacent to the 2017 surgery resulting in yet another 1a adenocarcinoma. My 1st post on this site came while waiting for my 6 month scan a few days ago. I just read the radiology report last night and there are actually 2 areas we are again watching plus a new ggo. While it is definitely depressing to hear that I am no longer stable, I am incredibly thankful to my team at the Mayo Clinic that has brought me this far. 71/2 years ago I never dreamed I would be here today. I try and never forget that these years have been a gift. That is how I deal with my situation. This multifocal disease can be difficult to understand, but I will NOT go down the rabbit hole. I have chosen to embrace every day I have been given as a blessing. I hope I can help someone to deal with their journey.

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Have they ever done biomarker testing to see if targeted or immunotherapy would help?

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@raffi

Hi all!
I also have multiple (2) nodules. Both adenocarcinomas but not related: genomic analysis did show two different rare mutations…. Lucky me 😜🙄 I was diagnosed in March 2023 and since then two surgeries: no metastasis detected. My first six months CT shows no new nodules. I am 53 yo diagnosed at 52. I am trying to be positive and my pulmonologist is very optimistic: since I am stage 1a for both cancers the oncologist follows me through the pulmonologist.
A new year is going to start soon and for all of us I wish a new year full of joy since I am realizing you can be happy even with cancer!

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@raffi Hello! I have not posted in a long time. I was first diagnosed in early 2011. Since then, I have had 4 surgeries and 2 different radiations. All of my cancers were different types of adenocarcinoma, and all 1a. I have scans anywhere from 3 month intervals, to 6 month intervals, to now, as of my last scan, a much welcomed 1 year interval! Please just live your life. None of us are promised tomorrow.
I live a wonderfully normal life. Multifocal lung cancer is a whole different type of lung cancer. May you have a wonderful New Year and embrace your new normal.

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