r/lungcancer • u/Peanut-b03 • 11d ago

First appointment - any recommendations?

My mom (64F) was recently diagnosed with adenocarcinoma of the lung. We have not done a PET scan yet to determine the staging of the cancer we just know from a CT scan that there are three masses in her lung. She has both abdominal and back pain.

We were seeing a pulmonologist and have our first appointment with an oncologist tomorrow. Does anyone have anything they would recommend we ask? Is there anything I should look up beforehand?

We’re all just trying to process everything so any tips/recommendations of things to do would be appreciated. Also any tips on how to support her during this time would be appreciated as well. Thanks in advance.

Edit: We had the first appt with the oncologist and he had scheduled a liquid biopsy, brain MRI, and PET scan and is hoping to get the testing done this week and be back for an appointment next week to go over the results. Thanks to everyone who replied it definitely helped me to feel more prepared going into this.

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u/Atlantis_442022 11d ago

Genetic testing is just as important as the PET scan. If there are targetable mutations the life expectancy increases. They will also test the PDL1 score. A high score over 50 means that immunotherapy may work well.

For what it’s worth my partner had intense back pain when he was diagnosed and it was not bone mets it was lymph nodes on the nerves.

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u/Peanut-b03 11d ago

Do they use the biopsy that they did to determine if it was cancer? Or will she require additional testing to determine targetable mutations?

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u/Atlantis_442022 11d ago

Make sure they use the biopsy sample to test for cancer type and also for the genetic mutations. If it is lung cancer they should know to do this. But sometimes at smaller facilities they go in slower steps.

The testing process takes 2 or 3 weeks to provide results. So you want to start it as soon as possible because it can change the treatment type.

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u/Peanut-b03 11d ago

Thank you so much for this insight. If they don’t mention anything about the genetic testing - I will say something. This is a fairly large facility so I’m hoping they will have already tested for it and we will hear the results during our first appointment today.