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.

Merry, Alumni Mentor | @merpreb | Oct 7, 2020

In reply to @catlover1943 "I’m new to group and looking for answers of what can be done for multi focal..." + (show)

@catlover1943- Good morning. I'm sorry that my answer yesterday was so brief. I was recovering from a procedure that was unrelated to my lungs. I am a 23-year lung cancer survivor, 13 of these years have been fighting multifocal. I am being treated at Mass General in Boston. I have had my left upper lobe removed and that had 3 lesions, all different and all different sizes. I was offered chemo and took it. Several years later I had to have SBRT to zap the staple line of that removal. The chemo didn't work. It was cisplatin and navelbine.

Please, please make that call for a second opinion. I hope that you will get back to us and let us know how you fare! We are a small close group and welcome you with open arms. Each of us has our own story, some with more complications. You are always welcome here and I am glad that you found us. How else can we support you?

Teresa, Volunteer Mentor | @hopeful33250 | Oct 7, 2020

In reply to @catlover1943 "I’m new to group and looking for answers of what can be done for multi focal..." + (show)

Hello @catlover1943,

As you can see from the post from @merpreb many of us are not Mayo patients. I too live in Michigan and go to U of Mich. for my cancer follow-ups. While I don't have lung cancer, I have found U of M care to be very helpful. Teaching/research hospitals tend to have the latest information in cancer treatment.

Do you have an appointment scheduled at U of M yet? I hope you find answers to your questions.

Colleen Young, Connect Director | @colleenyoung | Oct 6, 2020

In reply to @catlover1943 "I’m new to group and looking for answers of what can be done for multi focal..." + (show)

You are welcome here, @catlover1943. Connect is for all patients whether you get your care at Mayo Clinic or elsewhere. It seems to me that you are taking control by seeking a second opinion at U of M. Have you made the call?

Merry, Alumni Mentor | @merpreb | Oct 6, 2020

In reply to @catlover1943 "I’m new to group and looking for answers of what can be done for multi focal..." + (show)

Welcome catlover. Don't worry about not being a patient neither am I. I live in New England and use Mass General.

I personally think that you need a second opinion with another oncologist. Unless your Dr. Is afraid that SBRT isn't recommend because it's too close to another organ.

Can you get an honest answer from him why he's made that decision?

catlover1943 | @catlover1943 | Oct 5, 2020

I’m new to group and looking for answers of what can be done for multi focal adenocarcinoma. I have no mutations and drs. Know chemo doesn’t really help but it seems to be their answer. I’ve had upper left lobectomy 2015, SBRT late 2016, and ct scans every 3 months since then. I have about 14 Or more nodules in left lower and 1in right. One in left lung is now 2.7cm, others still smaller. I live in small town in Michigan and am looking for 2nd opinion from U of M. Has anyone had chemo and has it helped? My nodules are considered indolent but seem to be growing faster than others that I’ve read about so I am getting more anxious as the months go by and may soon need to make some decisions as to treatment. I would go for SBRT again if that is a possibility. I understand what you all are going through physically and mentally and that does take its toll but I do feel that we are lucky that it is not a more deadly form of Lung Cancer and that time is on our side for them to come up with answers. Thank you for having this forum, as it does help to vent. Good luck to all and will welcome any info and maybe I shouldn’t be posting since I’m not at Mayo Clinic. catlover1943

linda10 | @linda10 | Sep 25, 2020

In reply to @merpreb "@linda10- Please let us know what day you start! Sending a big hug." + (show)

@merry we received approval yesterday morning and I began treatment yesterday afternoon. My last treatment will be on Monday the 5th. So far so good. Thanks so much for everyone’s support ❤️

bluelagoon | @bluelagoon | Sep 21, 2020

In reply to @linda10 "@meka Yes, I agree it can get costly. We travel with our 2 pups so we..." + (show)

@meka @linda10 @merpreb We also travel with our dogs and stay at La Quinta! Meka, make sure when you check rates that you ask if they have a "Mayo patient" rate. La Quinta has a discount if you call that's better than what is on the national website, and I'm pretty sure that's true with all of them. Also, the sooner you can book the better it usually is (which I've found out when I forget to book right after getting an appt. set up!)

Merry, Alumni Mentor | @merpreb | Sep 21, 2020

In reply to @linda10 "@meka Yes, I agree it can get costly. We travel with our 2 pups so we..." + (show)

@meka- Is there A Ronald McDonald house near the hospital? Here, try this https://www.rmhmn.org/

linda10 | @linda10 | Sep 21, 2020

In reply to @meka "Curious where you stay when you have treatments. Really like where I stay, but gosh it..." + (show)

@meka Yes, I agree it can get costly. We travel with our 2 pups so we either stay at La Quinta or bring our RV and stay at Autumn Woods RV Park, which is where we are presently. We were able to leave the RV and go back home for the days in between our visits.

meka | @meka | Sep 20, 2020

In reply to @merpreb "@meka- I agree with Linda about having one person coordinate your treatment plans. At MGH it's..." + (show)

Yes, I go to Mayo. Looks like my last post went up on the lung cancer posts, tried to explain what's going on with me.

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