Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Alumni 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.

marymunzel | @marymunzel | Jul 28, 2023

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

balevine | @balevine | Jul 26, 2023

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.

vic83 | @vic83 | Jul 26, 2023

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?

seabright2001 | @seabright2001 | Jul 23, 2023

In reply to @merpreb "@linda10- I hate it when we anticipate the test results and they come back unstable, again!..." + (show)

I googled and found ground glass opacification.

eeileen | @eeileen | Jul 22, 2023

Hi Merry. Thank you for sharing your experiences. You have had ground glass lesions that have disappeared? I am having my second surgery for multifocal adenocarcinoma in a couple of weeks. We are going to make a surgery day decision as to how much of the RUL to remove. The uncertainty is a GGO that is on the other side of the lobe from the other two lesions. I did not consider that a GGO could disappear, only that it could grow and solidify.

Merry, Alumni Mentor | @merpreb | Feb 24, 2023

In reply to @lijda "I am feeling great. It's not clear if I have multifocal lung cancer (multiple primary nodules)..." + (show)

lijda - I bet you don't and that's a bug jump in reality. It's so easy to become complacent. I respect your decision and I might actually have done the same thing but have not been in your circumstances. Good for you!

lijda | @lijda | Feb 24, 2023

In reply to @merpreb "How are you feeling?" + (show)

I am feeling great. It's not clear if I have multifocal lung cancer (multiple primary nodules) or metastasized bilateral nodules (five growths from two lobectomies in 2019 and 2021 and from a bronchoscopy in 2022 are clonally related), but I am asymptomatic. I take walks (usually a mile if the weather cooperates) and do Tai Chi and garden; I have no coughing or shortness of breath. I am also comfortable with my decision to delay treatment (Tagrisso) until I become symptomatic or something of (new) concern shows up on the scheduled scans. I find it really helped physically and mentally once I made a decision that felt right. I actually feel especially contented because I don't take my 'good' health for granted now.

Merry, Alumni Mentor | @merpreb | Feb 23, 2023

In reply to @lijda "I did not mean to imply that multifocal lung cancer can't go to the lymph nodes...." + (show)

How are you feeling?

lijda | @lijda | Feb 16, 2023

In reply to @jp78 "But multifocal adenocarcinoma can go to the lymph nodes." + (show)

I did not mean to imply that multifocal lung cancer can't go to the lymph nodes. I was questioning whether it was a case of multifocal lung cancer because only multiple lymph nodes were mentioned, not multiple growths (or lesions or nodules) in the lobe removed by the lobectomy. I used to confuse nodules and nodes when I was first diagnosed. Although anything is possible (I'm quoting more than one of my doctors with that statement!), patients with multifocal lung cancer "are frequently node-negative and without distant metastases despite multiple lesions present. " (quote extracted from the description of the Mayo Clinical Trial "Treatment of Multifocal Lung Cancer", NCT01946100).

jp78 | @jp78 | Feb 12, 2023

In reply to @lijda "There are so many different kinds of cancers. It sounds like you don't have multifocal lung..." + (show)

But multifocal adenocarcinoma can go to the lymph nodes.

View More View Less

Please sign in or register to post a reply.