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.

Colleen Young, Connect Director | @colleenyoung | Feb 23, 2020

In reply to @meka "Doing good, gained back all the weight lost and more, amazing how your whole body can..." + (show)

Welcome back, @meka. Really good to hear you're doing well and have gained weight back.

Joan @sakota, How are you doing? I know it's been a struggle lately, especially with mood and feeling down with all the health burden.

I also want to invite you both and anyone else in this discussion to join @merpreb who is taking part in this virtual walking group. Read more here:
- Let’s Go Walking! Join me for a virtual walking support group https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
I think it might be nice to something together, each person at their own pace. What do you think?

Merry, Volunteer Mentor | @merpreb | Feb 24, 2020

In reply to @meka "Doing good, gained back all the weight lost and more, amazing how your whole body can..." + (show)

@meka - Good morning. It is amazing how your body can change. I'm so glad that you are doing well. Do you have any breathing problems?

meka | @meka | Feb 25, 2020

In reply to @merpreb "@meka - Good morning. It is amazing how your body can change. I'm so glad that..." + (show)

It is a CT on the 10th. Breathing is good most of the time considering what I have put my lungs through.

Merry, Volunteer Mentor | @merpreb | Feb 26, 2020

In reply to @meka "It is a CT on the 10th. Breathing is good most of the time considering what..." + (show)

@meka- That's great. When do you have breathing problems and what do you do to help yourself breathe easier?

Merry, Volunteer Mentor | @merpreb | Mar 13, 2020

@meka wishes to share her message, which came to me via a PM:
Hi, just to let you know, over here at Mayo (Rochester) for my 6th month check. Had CT, then PET, pulmonary check. One of my "spots" has increased since September, but so close to previous surgery it would pose other problems. Want me to go through targeted short course radiation treatment. Appointment Monday for consultation. Am not prepared for a longer stay and by myself again. Will move to Centerstone Plaza tomorrow where I can cook and take the shuttle this weekend to thrift store and grocery store..
No pity party intended, just always come prepared. I packed for three quick days. Everyone is impressed with how good I look compared to last September, am off everything except sertraline and blood pressure. Head wise okay, but already miss my Summitt and Bumpkin so much!! Will continue to try keeping up with the walking group. Haven't been getting posts from multi focal group.. maybe there is someone who has had this treatment????

Merry, Volunteer Mentor | @merpreb | Mar 13, 2020

In reply to @merpreb "@meka wishes to share her message, which came to me via a PM: Hi, just to..." + (show)

@meka - Good morning, It looks like your multi-focal is traveling the normal route. Somehow our lungs just love making these. After my second operation, I have had 2 targeted radiations. One was proton beam surgery (it is radiation) and photon radiation. They are a breeze and can get to places when surgeries can't be done. Here are my two stories if you care to read them.
https://my20yearscancer.com/thoracic-radiation-treatment/
https://my20yearscancer.com/first-rest-interval-and-second-treatment/

meka | @meka | Mar 13, 2020

In reply to @merpreb "@meka - Good morning, It looks like your multi-focal is traveling the normal route. Somehow our..." + (show)

Wow, thanks for sharing again. Read some of the articles and now I'm wondering what are the questions that need to be addressed. Is this out-patient, follow up, after affects, what if recurrence, even more impossible for any future treatments.????
Been doing so good with my mental health issues and I have a real sinking feeling right now.
Also how do you explain any of this to others, hard enough getting anyone to understand the nature of the disease to start with.

meka | @meka | Mar 14, 2020

In reply to @merpreb "@meka wishes to share her message, which came to me via a PM: Hi, just to..." + (show)

Thanks for posting for me Merry. A lot to throw out there, but my brain is always ahead of my texts. Hope everyone is doing ok and would love to hear from you all!!

linda10 | @linda10 | Mar 14, 2020

In reply to @merpreb "@meka wishes to share her message, which came to me via a PM: Hi, just to..." + (show)

@merpreb just saw this. I will be traveling up to Rochester next week for my CT scan on the 19th. That is where I had my SBRT done in September. Sending you positive vibes that all goes well. It was actually so much better than I expected. Did experience a tightness feeling above my chest which lasted for probably 4 months. I am hoping all is well and I won’t need any mor radiation for the area they are following.

meka | @meka | Mar 14, 2020

I might still be here Linda, consult Monday with radiology. Dr. Said .Short term targeted radiation. Something more to learn about. Of course I planned on a very short trip this time, should have listened to my gut!! Thank goodness, where I'm staying has weekend shuttle, so off to the thrift store 😊 and a bit of groceries!! Best of luck!!