Multifocal Adenocarcinoma of the lung, continual recurrences

It’s really hard
Me l got a lobectomie on the write upper lung and they found out was carcinoma biopsy the lymph node they put out 18 lymph node 7 of them got cancer in it now I’m starting chimo on January 3 days every 3 weeks for 4 session that never stop and he doesn’t know if he spread because the cell write now are to small to see it on the ct scan and can’t tell me if he gone to come back or not he told me he be happy if he got a Crystal ball l understand him but really scary me l was thinking was finish and on the 30 December l have to go see for radiation in my head to be sure because lung cancer spread sometime in the brain

I hope you got a news soon good luck and everything be ok
We have to stay positive:)

I too have been diagnosed with multifocal lung cancer (or perhaps it’s bilateral metastatic lung cancer). Long post so I’ve tried to organize it. To date, I have done no treatments except for the lobectomies. I would be interested to hear if others who were diagnosed with multifocal lung cancer have done chemotherapy, targeted treatments, or immunotherapy; and, if so, their outcomes.

HISTORY: In December 2019, I had a RUL lobectomy to remove a 5.4 cm. tumor discovered accidentally in October 2019. I did no chemotherapy following the lobectomy. The first post-lobectomy scan in June 2020 revealed four bilateral nodules, which resulted in a diagnosis of multi-focal lung cancer, more scans (every 3 months), and a second lobectomy (LUL) in March 2021.

SCANS: Scans after the second lobectomy showed growth in both size and number of nodules, to the point of “innumerable” nodules in the October 2021 and January 2022 scans. The latest scan in September 2022 showed slightly increased numerous bilateral pulmonary nodules, some with a central solid component and surrounding groundglass. My oncologist estimates there are between 20 and 30 nodules. The largest are around 1 cm.

MOLECULAR TESTING: Molecular testing of the six growths removed during the two lobectomies shows EGFR exon 21 p.L858R mutation in the 2019 tumor and in the three nodules from the second lobectomy; KRAS Exon 2 p.G12C in one mass from the second lobectomy; and KRAS G13C exon 2 in the other mass from the second lobectomy. In September, samples of the existing nodules were taken via a navigational bronchoscopy; the two nodules tested also showed EGFR exon 21 p.L858R mutation. They are identical in mutations (nine) to one of the nodules removed in the second lobectomy.

TREATMENT PLAN: My surgeon believes we should watch and wait. My oncologist recommends starting osimertinib (Tagrisso). There are pros and cons to each option but, after many sleepless nights, I have decided that I do not want to start Tagrisso until the nodules grow bigger or I become symptomatic. My reasons for deciding to delay treatment include:
• So far I feel great: I am asymptomatic. I have essentially no burden of disease or burden of treatment (although humidity curtails exercise).
• My nodules are not yet aggressive. They exhibit slow growth and no metastasis to brain, bones, or liver (or anywhere else). I feel that starting treatment might be like poking a stick into a hornets’ nest.
• The inevitability of my cancer eventually becoming resistant to the treatment, leading to a trainload of subsequent treatments. I prefer to catch a later train.

I MUST EMPHASIZE: my decision to delay treatment (not considered reasonable by all) is not a criticism of current treatment options. There are good reasons to start treatment: potential for brain metastases; treating the nodules before they become aggressive and more complex, at which point treatment might not be as effective. I'm just not ready.

My next scans are scheduled in January. I have decided not to worry about the results of the scans, just about the possibility of snow and ice that would prevent me getting to the appointment (a 60 mile drive).

Oh, Vic. I can't tell you how much this means to me, to hear this from you. I think that every mentor would love to hear this. Just saying this shows how we as Mentors can reach people, how it can help, and what it means. You just gave me back everything.

Thank you
Merry

Hi Merry
I was fortunate because my first alert to the problem and surgery went so fast, and secondly because I found you soon after surgery and gained an immediate understanding of what I was dealing with. I was saved from much emotional stress. In the beginning they told me I was a complex case, but I did not know what that meant.
I can now appreciate your Oncologist's description. I think of treatment like shooting fish in a barrel.
You have had a long journey of lung cancer. It definitely impacts how one looks at life. And now with Covid, one has the additional worry to protect one's lungs. Nobody needed that!
I only wish I could give you what you gave me.

Great news, Misty! We all seem to say the same thing after a follow-up CT scan or PET. It's part of our life now and should be. Once you have cancer there is always a chance for a recurrence and needs to be checked at least once a year. Thank goodness for all of the researchers who helped develop these machines and science! We are so lucky! Don't you think?

Vic- Excellent explanation. My Oncologist said that treating this type of cancer is like a whac-a-mole. Kind of not encouraging yet not too bad either. I've had lung cancer for 25 years with a 10 yr break between my first and second. When the second hit my cancer had changed. There were three different lesions of three different sizes all in my left upper left lung. My latest one was treated at MGH (Mass General) with SBRT. I had two right next to each other and very near my heart. I feel good too.

I have had another larger one for many years in my lower left lobe. It's barely grown in more than 5 years or more. I seem not to pay attention too much to size and location after having so many lesions. It holds me back from living the best life that I have at this moment. But this is me. I'm sure that a lot of it is my emotional defense system. Everyone is so different in the way they handle cancer.

How are you doing?

Thank you! I have to go back and check but recall my pulmonologist and surgeon saying that the rest were nothing. Really tiny but who knows?

Have you checked your reports especially CT scan? They would mention something.

Hi Spike - Sorry, I should clarify. I did not have a recurrence of my removed cancer. My nodules were not new. I started with multiple nodules. I have multifocal lung cancer which means I have multiple lung nodules which are thought to be independent cancers (but some may not be) and they are in different stages of development.
These nodules start with ground glass opacity and may develop part solid components.
My first CT scan (not at Mayo) found a nodule in each lung. Mayo removed the largest one which was a 3.1cm stage 1b cancer. The nodule in the other lung has remained stable for a year so it may not be cancer. The remaining nodules are smaller and not necessarily picked up with a common CT scan. Mayo sets it equipment to pick up the smaller nodules which is why I know how many there are. They watch for growth and in that case the nodule may be treated. They also watch for the appearance of any new nodules. Sounds terrible but I feel fine.

Hi Merry. That was my reaction too. Multifocal is like chronic cancer. Maybe they should change the name?
I was fortunate because things went so fast for me. I had an abnormal chest x-ray, and 7 weeks later I was at Mayo where I was diagnosed, staged and treated all in ONE MORNING - Robotic Bronchoscopy, Endobronchial ultrasound (EBUS) for lymph nodes and VAT wedge resection surgery to remove cancer. Two days later I was home.
I put all my nodules in a spread sheet to track them from CT scan to CT scan.
That Mayo ten- year multifocal lung cancer study is out in October 2023. Wish I could get a sneak peek! They must know something now.
In February 2022, Mayo added Multifocal Lung Cancer to the list of cancers they treat on their Internet site Lung Cancer page.