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Mom diagnosed with Stage 4 lung cancer with Brain tumor

My mom(age 62) was diagnosed with stage 4 lung caner with a big tumor in the brain. She was having nausea/vomit symptoms for 2-3 months and finally an MRI of brain showed a cerebellum tumor. Since she had a seizure we got an emergency brain tumor removal surgery done. They also found multiple tumors in upper lobe of lung(3.6cm, 8mm, two 5mm and few 3mm) in lung and some lymph nodes is also compromised.
Tumor biopsy confirmed adenocarcinoma with primary tumor in lung. PD-L1 test was negative(<1%) which made me very very sad. EGFR and other gene mutation tests are pending. She is asian non-smoker female so good chance of EGFR positivity.
We were assigned to a community hospital(she has medi-cal public insurance in california) where there is no lung cancer specialist. The medical oncologist is a generalist who treats brain/lung/throat cancers.
Questions:
1) Mutation results from tumor testing are atleast two weeks out. Is there any point in seeing oncologist now or should we wait for full mutation result ? Its been 1.5 weeks since surgery and 2 weeks since diagnosis. Should we be rushing to start chemo treatment and switch to Osimertinib if EGFR positive or should we wait for full molecular testing ?
2) If no mutation comes positive and PD-L1 is negative also these are first line of treatments
->Pembrolizumab + (carboplatin or cisplatin) + pemetrexed (preferred)
-> Atezolizumab + carboplatin + paclitaxel + bevacizumab
-> Platinum-doublet chemotherapy ± bevacizumab
How does the doctor decide which one of these combinations is better for you ?
3) Is surgical or Stereotactic ablative radiotherapy (SABR), also known as stereotactic body radiation therapy (SBRT), an option for lung tumors ? Which one is recommended ?
4) Also we only did CT of abdomen and chest and MRI of brain upto this point. Does whole body PET add any value at this point or should we do it at the time of progression evaluation later ?
5) do you normally see a general medical oncologist or do you see a medical oncologist ? How important is the clinic/facility in the overall care for you ? I am asking because I can always get a second opinion from a top 10 cancer center and apply that plan at the local cancer center. This would save us a lot of long drives and expensive private insurance.

  1. Hi,

    Apologies for the delayed response - have you received the results yet of biomarker testing / mutations? While we cannot offer medical advice online, for your own safety, the below links with more information on your questions may help. We always recommend bringing all questions about treatment decisions to the doctor/care team as everything can vary by person, and/or getting a second opinion if possible and if you and she would like to at any point (https://lungcancer.net/living/survivors-opinion-about-second-opinions).

    Making treatment decisions:
    https://lungcancer.net/living/decisions
    https://lungcancer.net/living/deciding-where-to-get-treated
    https://lungcancer.net/living/comparing-side-effects

    Radiation:
    https://lungcancer.net/?s=SBRT
    https://lungcancer.net/?s=sabr

    CT vs PT:
    https://lungcancer.net/living/scan-differences

    Specialist:
    https://lungcancer.net/basics/specialists
    https://lungcancer.net/living/important-connection-doctor
    https://lungcancer.net/living/finding-oncologist

    Keep us updated - thinking of you and your mother - she is lucky to have you there for her and looking into all of this.

    Warmly,
    Margot, lungcancer.net Team

    1. You need to take your mom to mayo clinic in Arizona. I'm on medical and I travel to Utah to get my treatments. But I have NV medicaid. The mayo clinic will not charge you if you can't afford. Or clinical trials?

      1. Thank you for sharing that information. How are you doing today?
        Yolanda(LungCancer.net Team)

    2. Hi, this post just popped up and I see it was from 2020. How is your Mom doing? I have the EGFR mutation, is that what your Mom's turned out to be? Thinking of you both, Alisa, Lung Cancer Team Patient Leader

      1. I see this is an old post. My circumstances were very similar and I started chemo before my final genetic results. I regret that very much as it has taken me over a yr to recover from the one chemo treatment I tolerated very poorly. I am doing well on oral targeted therapy now and wish I had waited 2-3weeks for my final report. When you are diagnosed at stage 4 you can feel pressed to make quick decisions. Every case is different but having a good oncologist and asking questions can save you much difficulty.

        1. you make really great points about asking questions and making sure you are confident with your doctor. I am glad to hear you are doing well on the oral therapy. Thanks for joining in the conversation. Jill (Team Member)

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