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 | Jun 30, 2020

Six months, wow, seems like a long time, lol. Appointments today, will update.

linda10 | @linda10 | Sep 17, 2020

In reply to @meka "Six months, wow, seems like a long time, lol. Appointments today, will update." + (show)

@merry@sakota@bluelagoon@meka Hi all. Have been back and forth to the Mayo since September 1. CT showed scar tissue area still enlarging. Had a biopsy and it’s a recurrence. Lymph nodes were negative so that was good news. Had an MRI on my head on Tuesday which also was negative so next week will be 5 days SBRT. Everything else looks good so I’m hopeful that we can get through next week and that will hold things at bay for a while -and I mean a good long while😊. Please feel free to throw all prayers and good vibes my way. I will keep you all updated.

meka | @meka | Sep 17, 2020

Coming your way whatever you need. I go back first week of October and am very worried about the same situation you're going through, plus biopsy on thyroid. Feel like the "scar tissue", has continued to grow.
Question for the group, is there a person or whatever that can help make sure that all of your care is coordinated. I have thorasic, radiation, endocrine, internal, pulmonary and have no idea if anybody communicates with each other. Feel like appointments are backwards, found some important info on my harmful exposures while in the military, ( how can I share it with all the areas?). Any advice welcome.

linda10 | @linda10 | Sep 17, 2020

In reply to @meka "Coming your way whatever you need. I go back first week of October and am very..." + (show)

@meka so sorry you’re feeling all your Drs are not communicating. I am seeing a radiation oncologist and he’s in charge of everything being done. Before that I followed up with my surgeon for 8 1/2 years and he coordinated all my care. There should be someone in charge of overseeing your care. I would question everyone if I was you. Please keep us posted.

Merry, Alumni Mentor | @merpreb | Sep 17, 2020

In reply to @linda10 "@merry@sakota@bluelagoon@meka Hi all. Have been back and forth to the Mayo since September 1. CT showed..." + (show)

@linda10- Darn! At least we have SBRT now! My scar tissue from SBRT finally stopped growing so they decided not to do a biopsy.

Know that we are all here and will walk with you through all of this! I'm sure that you will breeze through this and remember to rest, rest, rest when you need to!

Is the area of scar tissue from a previous SBRT?
Merry

Merry, Alumni Mentor | @merpreb | Sep 17, 2020

In reply to @meka "Coming your way whatever you need. I go back first week of October and am very..." + (show)

@meka- I agree with Linda about having one person coordinate your treatment plans. At MGH it's my oncologist who coordinates mine but I am also in touch with my surgeon and radiologist throughout the year. When I have a meeting to go over my CT scans or MRI's my Oncologist has spoken to everyone. All three have been my team all through this. Find out from the head of the department who it should be for you, please.

You should never have had this problem. Are you at Mayo?

Merry, Alumni Mentor | @merpreb | Sep 17, 2020

@sakota and @bluelagoon- Just checking in! Hope that you are all well. @linda10 has a recurrence so let's band together, if possible, and send her all the help that we can!

linda10 | @linda10 | Sep 17, 2020

In reply to @merpreb "@linda10- Darn! At least we have SBRT now! My scar tissue from SBRT finally stopped growing..." + (show)

@merry This is in an area of the staple line from a previous wedge section on my left lung. Last year I had SBRT on a staple line from a previous wedge section on my right lung. The area on the right is doing well. I’m very thankful they’re still able to treat us. It’s been 9 1/2 years for me and I think you’re double my time. Go Us!!!!