r/lungcancer • u/Peanut-b03 • 7d 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/dabbler701 7d ago

Sorry you’re going through this. I don’t have any advice other than to schedule the PET, brain MRI and biopsy of the lung mass and local lymph nodes asap so they can analyze the tumor and see if there are targeted therapies which can have better outcomes than more generic treatments on cancer without targetable mutations. For instance, my Dad has an EGFR Exon 19 deletion and they’re treating that with a specific protocol. You’ll see people reference other kinds of mutations here too. You can google the most common ones if you want, but it’s probably not useful without the in depth analysis. Ours took 6 weeks to come back so this would be the top of my list.

Back pain can mean bone mets in the spine, which I think they sometimes use radiation to treat. Abdominal pain could be anything or nothing.

Wishing you and your mom the best.

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u/FlyingFalcon1954 7d ago

I had bothersome upper back pain between the shoulder blades that was not bone mets. The pain subsided as the mediastinal tumor reduced in size.

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u/Peanut-b03 6d ago

I am hoping that this is the case for my mom. Thank you!

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u/Peanut-b03 6d ago

The pulmonologist mentioned doing a PET scan as the next course of action. They did a biopsy already which is how they confirmed it was adenocarcinoma but they did not mention any mutations - maybe they will talk about that today.

I will definitely bring up the brain MRI if they don’t mention it.

Thank you!

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u/dabbler701 6d ago

Let us know how the appt goes!

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u/ThisSelection7585 7d ago

My X-ray (for bronchitis vs pneumonia)lead to a CT scan which lead to biopsy. The PET scan and MRI followed to rule out any spread. My biopsy was NSCLC abd the nearby lymph was clear but the PET lit up the nearby lymph so they’re saying I’m a 2-3 staging. The care team said if it spread it just changes the treatment approach. I have a mutation but they started me on regular chemo and immunotherapy because they wanted to shrink the large mass first and felt chemo will shrink it  some, then if needed do targeted therapy. Reason they didn’t do it first is it’s got its own side effects/risks. Once they start his therapy just keep him hydrated, watch for constipation or diarrhea, and gauge his moods whether he wants help or not because keeping a sense of normalcy is important to morale. 

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u/Peanut-b03 6d ago

Thank you for sharing your journey. I’m sorry you’re going through this.

I think the scary thing is all of the unknown for us and still figuring out just how bad it is.

I will take your advice for the things to watch out for.

Thank you so much and I am wishing you the best of luck on your journey.

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u/missmypets 7d ago

This is a comprehensive list of questions put together by American Cancer Society. It covers all phases from getting a complete diagnosis to survivorship.

Bring notepaper with you and designate someone to take notes. Get a folder to store printouts of all tests.

https://www.cancer.org/cancer/types/lung-cancer/detection-diagnosis-staging/talking-with-doctor.html

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u/Peanut-b03 6d ago

This is perfect - thank you so much for linking this resource.

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u/Funseas 6d ago

Schedule the PET scan ASAP. It can find smaller growths not visible in a CT scan.

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u/Peanut-b03 5d ago

Thank you - we are just waiting on insurance right now to approve everything so we can move forward with all the testing

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u/Exact_Page6925 6d ago

My advice is to get appointments and treatment moving fast. Through the oncology office, you can request an oncology nurse navigator. They are wonderful at answering questions, providing resources, and getting appointments scheduled asap.

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u/Peanut-b03 5d ago

Oh wow - we will definitely look into that I have not heard of that before. We are getting the brain MRI, genetics testing, and PET scan sometime this week or early next week. So to me I feel like we are moving at a fast pace (even though nothing feels fast enough)

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u/Azhul 5d ago

Keep an open mind. I thought life was over, and today I feel like things are starting to look normal again. Trust the DR, but ask your questions. No question is unimportant. Get the answers you need. And fight with all you have. My prayers go out to you and your family. You can get through this.

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u/Peanut-b03 5d ago

Thank you for this. I think we are in such a limbo right now knowing that it is cancer but still not knowing enough information to know how to fight it that every minute feels like torture. My mom is doing her best to keep her mind off things but it is scary as she is starting to empty drawers, clean up papers that she’s had forever, etc.

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u/Atlantis_442022 6d 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 6d 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 6d 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 6d 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.

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u/Azhul 5d ago

My initial diagnosis was 6 weeks ago. The difference im feeling in such a sorry time is astronomical. There we times that the only hour I found was by reading things from this thread. Hearing others success helped me, even when I didn't expect any positive outcome, that little bit of hope got me through. So please don't give up hope, I'm here if you need to talk. Feel free to reach out any time. The support is here if you ask for it.