Multifocal Adenocarcinoma of the lung, continual recurrences

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?

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.

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:)

Sending thoughts your way, @joe6767 for both the radiation consult and starting chemo in the new year. I know this is a gut punch when you thought you were finished with treatment.

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).

I was thinking just operation be ok but l remember when the Dc told me if you want you better got chimo just to be sure
But when they found out was carcinoma he told me better have the chimo just to be sure to kill all the cell

Joe- Not a great way to begin a new year is it? I try and think about how fortunate we are to live in a time when research has afforded us such marvelous machines that helps us live longer or cures us! Please let us know how you do with chemo!

Merry

Sure I’m scare but I’m doing it for me and my children
Thank you