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.

meka | @meka | Jan 13, 2019

In reply to @meka "Social Worker here, my Vet Center counselor has always been great, she set up for a..." + (show)

And a CT

linda10 | @linda10 | Jan 13, 2019

In reply to @merpreb "Linda10. I believe it means more than one center. It's seen in breast cancer too. Beyond..." + (show)

Merry, I very much agree with you. Knowledge is absolutely power💕

Merry, Alumni Mentor | @merpreb | Jan 14, 2019

In reply to @meka "Social Worker here, my Vet Center counselor has always been great, she set up for a..." + (show)

@meka- I guess that I confused he with someone else. I am so glad that you have good support now @meka. You deserve it.

Merry, Alumni Mentor | @merpreb | Jan 14, 2019

@meka- Of course it means social worker! I should have tried to put it together. What time are your appointments?

meka | @meka | Jan 14, 2019

In reply to @merpreb "@meka- Of course it means social worker! I should have tried to put it together. What..." + (show)

Start-7am

Merry, Alumni Mentor | @merpreb | Jan 14, 2019

@meka- Sending high energy and hugs. You've got this!

teresalane | @teresalane | Jan 14, 2019

Hi everyone. I had a CT scan done 3 months ago (my first) as a "base" line because of my history of being a past smoke and 3 family members having lung cancer (both parents died and 1 sister is a survivor). My first CT scan came back with: "Multiple Ground Glass pulmonary nodules. More pronounced in upper lobes. Largest on right 7mm and largest on left 7mm both up lobes. Went to see a pulmonologist and he said there were more but all were too small to do anything about. He suggested we wait 3 months and do another CT.
Jump ahead 3 months later (freaking out, no sleep...) Second CT scan done. Findings: Multiple Ground Glass nodules bilaterally through both lobes. Part solid or pure ground glass. Total 10 nodules (1 lower left lobe) (9 in upper right and left lobes)
3 ea 4mm nodules unchanged from 3 months ago
1 ea 4 mm nodule NEW
2 ea 7mm nodules unchanged
3 ea 5mm nodules unchanged
1 ea 5 mm nodule NEW
My doctor says since they are all too small to do anything, he is recommending we wait 6 months and do another CT.
Everyone says YAY great news...me? I'm freaking out. 10 nodules???? 9 in upper lobes? 2 new ones?
Is waiting the thing to do??? I am not sure what to do. I have Kaiser if anyone if familiar with it. You have to be your own advocate to get ANYTHING done.
Thanks for listening. I feel so scared and unsure what to do.

Merry, Alumni Mentor | @merpreb | Jan 15, 2019

In reply to @teresalane "Hi everyone. I had a CT scan done 3 months ago (my first) as a "base"..." + (show)

@teresalane- A warm welcome to Mayo Connect. You've come to the right place for information and support and comfort. I am a twenty-one year multifical adenocarcinoma survivor. I've had 4 cancers and a total of 6 nodules removed and have had radiation (SBRT) and chemo. I know about your fear. Have you considered getting a second opinion? I question the wait too- although I have had many nodules scare the hell out of me and then disappear. Are you still a smoker?