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.

sakota9 (Joan) | @sakota | Apr 23, 2020

Mer. Hi. Appointments all got pushed to June. Maybe eventually I will get them done. I had to call my counselor and talk to her as my anxiety is going overboard so then talked to my gp and she increased my dosage so that helps. How are you. Hope things are going ok for you. Anyone else’s anxiety goes whacko with this virus and then worrying about upcoming test results?? Take care mer

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

@sakota- When in June Joan? Any appointments that I have before June (for now anyway) have been canceled and only one has been re-scheduled. My next scan is till on-so far- for June 24th. Joan, I'm with you on accelerating anxiety! I don't blame you for wanting help with this. It's an extraordinary time. May I ask what medicine she has given you?

sakota9 (Joan) | @sakota | Apr 24, 2020

Hi Merry. My appointments are on June 23. Will be thinking about you. I have been on lexipro 10mg for awhile now so she just increased it to 20mg. Going to try it to see if it works. Will let you know how it goes. She suggested something else but thought I would just stick to lexipro first. My body absorbs lexipro fast so she was concerned about that.

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

What did she suggest? @sakota

sakota9 (Joan) | @sakota | Apr 24, 2020

In reply to @merpreb "What did she suggest? @sakota" + (show)

Mer one was Prozac but can’t remember the other one. Joan

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

In reply to @sakota "Mer one was Prozac but can’t remember the other one. Joan" + (show)

@sakota- I didn't like Prozac. Give the new dose a chance. There are other drugs that can help it be added other than Prozac. It's nasty.

sakota9 (Joan) | @sakota | Apr 24, 2020

Merry I had heard things about prosac that’s why I decided with staying on lexipro. I have a video chat with the neurologist at mayo on May 6. So will see what he has to say.

Colleen Young, Connect Director | @colleenyoung | Apr 24, 2020

In reply to @sakota "Merry I had heard things about prosac that’s why I decided with staying on lexipro. I..." + (show)

@sakota, members have shared their tips about video consults in this discussion, which may be useful if this is your first teleconsult.
- Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

I'd also welcome your tips or sharing your experiences for others after your consult in May. Joan, have you tried mindfulness?

1952bear | @1952bear | May 15, 2020

Thanks for all of your stories! I had a CT scan a couple of years ago and diagnosed with ground glass opacities. My pulmonologist said don't worry about it. It's nothing. He then retired about a year later, and now my PCP has me so scared that I should have been keeping on top of this. I've had some amazing doctors, but some not so amazing. In fact, one misdiagnosed my hyperplasia that led to endometrial cancer. Just have to put myself in God's hands. Going for another CT scan within the next couple of weeks, when I would rather not leave the house yet.

Merry, Volunteer Mentor | @merpreb | May 16, 2020

@1952bear- Good morning and hello! I'm glad that you have found our Connect community. I can imagine how livid you are with this doctor and I'm glad that he has retired. Did your PCP know about the GG when it was first found? Did she get a report?

Ground glass opacities are not always cancer. Some appear and then disappear, some appear and stay the same for years. I have a couple in my lower left lung that have done just that. And then there are ones that grow. Multifocal adenocarcinoma lesions are usually slow-growing.
http://tlcr.amegroups.com/article/view/1608/2332

What has been the follow-up for your endometrial cancer? Did you have surgery and chemo?

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