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.

vic83 | @vic83 | May 28 8:33am

In reply to @denzie "My rest is more recuperative using my C-PAP. I encourage you to have a sleep test...." + (show)

Proton radiation is much more expensive than SBRT and
offered at very specialized centers. Also my Mayo radiation oncologist told me that nodules must meet certain criteria....like they have to be solid enough.

denzie | @denzie | May 28 9:11am

In reply to @vic83 "Proton radiation is much more expensive than SBRT and offered at very specialized centers. Also my..." + (show)

Darn. Was hoping for some proton vs sbrt for a couple my doc wants to treat.

vic83 | @vic83 | May 28 9:30am

In reply to @denzie "Darn. Was hoping for some proton vs sbrt for a couple my doc wants to treat." + (show)

I suspect one needs to talk to the Radiation Oncologist who works at a place that is able to provide both types of radiation and then they will advise which is better in your case. Google it and you will find a list of places that do proton. I recall that there were only 50-60 in the US. SBRT is provided by many centers

jp78 | @jp78 | May 30 1:34pm

In reply to @vic83 "I suspect one needs to talk to the Radiation Oncologist who works at a place that..." + (show)

I was going to ask you about the proton radiation. My oncologist just mentioned the stereotactic so guess I might not be able to have it here or even get it. I'm not looking forward to this as I have COPD also,, plus other issues and not able to have any surgery. I had all my other treatment for lung cancer at Mayo but been going here at Sioux Falls. To me its a never win situation........ put onefoot forward, don't look back, and be thankful for each day you have.... I will check about proton radiation here, as I have no idea........ Thanks......

vic83 | @vic83 | May 30 2:22pm

In reply to @jp78 "I was going to ask you about the proton radiation. My oncologist just mentioned the stereotactic..." + (show)

I am at Mayo Rochester and they gave me SBRT not proton for my lung nodule-3 sessions. I am in the Twin Cities so am close enough to keep going there for anything related to lung.
I have had two VAT surgeries but can't have any more as would lose too much lung function. I don't have COPD but do have pulmonary fibrosis so am going on portable and night oxygen now. If I sit on my sofa and watch TV I don't have a problem...but that is not healthy is it?
I consider myself lucky because I only got cancer at age 80. I am still independent, flexible and not in pain. As long as I have solutions I am happy

jp78 | @jp78 | May 30 8:44pm

In reply to @vic83 "I am at Mayo Rochester and they gave me SBRT not proton for my lung nodule-3..." + (show)

I am 80 also but I feel younger in the heart until I try to do things and I just can't anymore. I also had a heart attack when I was 62 so got congestive heart failure along with the two other things, I do manage to get myself going, still do sewing and don't sit around feeling sorry for myself. I am very luck to have my daughters and most of all have the good Lord watching out for me......... Take care and keep the happy attitude.....

imksr | @imksr | Jun 9 9:04am

My first visit to this forum and I find this excellent post. I agree that the constant misery of not knowing what is happening with my LC does cause me great mental anguish.

ladylennie | @ladylennie | Jun 10 8:29am

How was your cancer treated. I too have multifocal. I had 2 in my lul and had a lobectomy, as well as a wedge on my lll for aah. I'll be finishing 4 cycles of pemetrexed and carboplatin on Thursday. Then scans to see what's happening with 2 in my right lung that weren't yet cancer, but had grown. Then immunotherapy. They staged me 2b, assuming the 2 in my lul were intrapulmonary metastases. But they don't really know, nor do I. I prefer to think of them as 2 separate primaries which would be stage 1a. Optimism rules.

Lisa, Volunteer Mentor | @lls8000 | Jun 13 11:59am

In reply to @imksr "My first visit to this forum and I find this excellent post. I agree that the..." + (show)

@imksr, welcome to Mayo Connect, and to this discussion. It is one of the hardest parts of the diagnosis. We're treated and sent out into the world to live as normally as possible, but we're always thinking about when the cancer will return. Even after five years, I certainly think about it every day, but I've come to a place of acceptance too. This is my life, and I'm continuing to live it every day.
Do you have multi-focal lung cancer? How long ago was your initial diagnosis? Have you sought out any counseling or spoken with someone from palliative care at your cancer center? Depression and anxiety can be a side effect of the diagnosis and can be treated just like any other side effects that we experience.

ladylennie | @ladylennie | Jun 14 6:50am

I had several nodules in both lungs found by accident in late 2019. They were followed first every 3 months, then 6 and then annually since all were stable and thought to be inflammatory. Then in November 2023, several had grown, particularly in left upper lobe. I had a ct-pet in December showing 1 was 3.1 and one 4.1. Bronchoscopy biopsy of one showed adenocarcinoma. That was 12/20. On 2/9 I had lul lobectomy and left lower lobe wedge. Both in lul adenocarcinoma. All was possibly aah.

I have finished chemo (yesterday). My scans will be 7/8. Hoping right lobe nodules shrunk or are stable. I'm of 2 minds about the scans. I'm eager to have them but really frightened about what they might show. In any case, that's when they'll decide about keytruda for one year or make a new plan which will probably include sbrt.

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