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Living with lung cancer - Introduce yourself & come say hi
Lung Cancer | Last Active: Jan 22 8:18am | Replies (1013)Comment receiving replies
Hi I am CArla - a 6-year survivor of NSCLC and more recently of hepatocellular carcinoma. Now confronted with what may be a recurrence of my lung cancer, maybe a new one, may be nothing. Scary however to go back to the world of PET scans and biopsies. I am curious - six years ago my lung cancer was I think they called it wild type - no interesting mutations/markers. I had surgery but no other treatment. Curious now if there are better systemic treatments for "no interesting genes". My doctor had mentioned immunotherapy but does that work only if there are specific genes involved. I would not want old fashioned chemo - at my age I don't know if I could survive it with any quality of life at all. Thanks
Replies to "Hi I am CArla - a 6-year survivor of NSCLC and more recently of hepatocellular carcinoma...."
Hi Carla-
Not sure what your doctors are referring to as "no interesting genes or mutations", but like others suggested ASK QUESTIONS,UNTIL THEY ARE TIRED OF HEARING FROM YOU! Tell them you want a scientific answer with true definition. Don’t hold back!
Seems like the standard answer when the oncologist immediately goes to immunotherapy...you don’t want off the shelf “canned” solutions!
Ask them about a molecular study of the biopsies...if you need a fresh biopsy, get it done. How can they treat the cancer with any level of science unless they know specifically what the mutation is?
My wife was put on immunotherapy and after months of treatments they found her cancer getting even more aggressive...they ordered a molecular study and found that hers is a HERR2, ERBB2 mutation in her lung, which does not respond to the “Off the shelf” immunotherapy drugs. Our oncologist told her that normal prognosis for her cancer would be 9 months. That was in 2016...she is still on the planet today because the molecular study led to her oncologist putting her on a clinical trial-with treatment. Her quality of life is excellent!
So...end of my epistles...ask questions and get answers!
Good luck!
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@bentrivercarla - Good morning and welcome to Mayo Connect. It's extremely disconcerting to have a cancer recurrence. My lung cancers began 22 years ago. I have multifocal adenocarcinoma of the lungs. It's a form of NSCLC. My last one was almost 2 years ago. Ten years after my first lung cancer, a stage 1A, and no treatment either I had my second one. And I was given a choice as to whether or not to have chemo. I did. It was rough and I was also in my early 60's. Sixty-one to be exact. Most chemo's are pretty rough but survivable and tolerable. It's best not to rule out any options before you know more about what is going on. I have not had traditional radiation but SBRT's. This is using "outer space" atoms, like photons and protons as beams and are carefully targeted with less damage to other organs. There are also many less side effects.
I have no idea what your doctors mean by uninteresting markers or mutations or a wild type. You need to question your doctors until they are sick of you and then keep asking questions. I'm uncertain if you have had your dreaded PET scan and biopsy as yet. Let's take this one step at a time and see where there leads you. Does this sound like a reasonable thing in an unreasonable time?