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.

hch559 | @hch559 | 1 day ago

I found out my Adenocarcinoma Lung cancer accidently in Oct. 2024. 10mm, 7mm and 5mm.
VAT wedge resection in RLL in March, 2025, removed 2 nodules, 10mm & 7mm.
Genetic test results EGFR mutation.

But 5mm nodule in left lung was not removed.

Two weeks ago, CT showed the 5mm grew to 7mm in 6 months and found a new additional 2mm in left lung. Doctor will do VAT wedge on Jan 13, 2026 to remove the 7mm but not the 2mm, although I asked for to remove.

I am 75 years old woman, I have never smoked, none of my family and friends is smoker. I have been doing everything right to keep my good health. I am frustrated it keeps recurring. Helen

vic83 | @vic83 | 2 days ago

Hi Merry - here is an idea for a topic....everybody's count of nodules treated over the years. Mayo had a study that was supposed to come out, but I can't find it so maybe they gave up.
So let's do our own!
I am now 4 years in and have had 5 nodules treated to date.
Order and treatment: VAT wedge resection in RUL, VAT wedge resection in LUL each for 1 nodule (so the scars match), then photon SBRT for 2 in RUL and again proton SBRT for 1 nodule in RUL. Endless CT and PET scans, and pulmonary function tests. I should get a discount.

Lisa, Volunteer Mentor | @lls8000 | Jul 1, 2025

In reply to @macallan "Ground glass opacity" + (show)

Hello @macallan, have you been diagnosed with GGO? It seems to be elusive in some cases.

macallan | @macallan | Jun 30, 2025

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

Ground glass opacity

Colleen Young, Connect Director | @colleenyoung | Apr 23, 2025

In reply to @sheland1 "Change of plan- will be starting on dual checkpoint inhibitors / Nivolumab and ipilimumab in 2..." + (show)

@sheland1, you can join this discussion:
- Anyone on the Ipilimumab (Yervoy) and Nivolumab (Opdivo) combo? https://connect.mayoclinic.org/discussion/ipilumab-and-nivolumab-combo/

See search results for more related discussions https://connect.mayoclinic.org/search/discussions/

sheland1 | @sheland1 | Apr 14, 2025

Change of plan- will be starting on dual checkpoint inhibitors / Nivolumab and ipilimumab in 2 weeks.

Anyone have experience with these?

denzie | @denzie | Apr 3, 2025

In reply to @sheland1 "Thank you for that! What was your first combo?" + (show)

I had Cisplatin and etopicide with concurrent radiation.

sheland1 | @sheland1 | Apr 3, 2025

In reply to @denzie "This combination is much easier than what I had for my first, and completely different, lung..." + (show)

Thank you for that!
What was your first combo?

denzie | @denzie | Apr 2, 2025

This combination is much easier than what I had for my first, and completely different, lung cancer. My biggest issue was some mild nausea, the med they gave me to manage that caused constipation. After the first round, I learned to use a mild stool softener every day.

Taking the post treatment steroids helped manage the nausea as well. I have some body aches that are managed well with Tylenol.

Another issue I had was low white blood count. I had to postpone my second infusion a week to allow time to build it up. Protein bars and shakes helped build that back up.

I've had 4 rounds of the carbo, Alimta, Keytruda protocol. Next week I will move to maintenance treatment of Alimta and keytruda. I will continue that every 3 weeks.

sheland1 | @sheland1 | Apr 2, 2025

In reply to @denzie "Mine is KRAS G12F. I just finished carboplatin and pemetrexed. My PD-L1 was less than one..." + (show)

How did you tolerate the treatment? How many infusions did you have? Any tips for getting through it?

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