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My sister has stage 4 NSCLC

Hi All,

I'm new to join the lung cancer supportive group.
My sister lives in HK and 38year old. She was diagnosed with stage 3 adenocarcinomas lung cancer which was resected about a year back, but metastasised to the frontal part of her brain. The tumour was removed a couple of weeks ago. She has just had an MRI and PET scan both which appeared clear.

Her lung cancer is EGFR positive with genetic changes c.2252_2277delinsAT (p.thr751_Ile759delinsAsn) NM_005228.3.
She is currently taking target therapy osimertinib (Targrisso).

Our father died of SCLC a few years ago and he was a smoker, but my sister is not. It was a slow horrible death. Ironically, my sister also a lung cancer!! Although she has been very brave throughout the ordeal, she is very scared and depressed. She is frightened of how she will die, and she is scared and worried for my mother! I'm very scared and heartbroken, I don't want her to die the way my father die.

Although her whole body PET scan and brain MRI is clear for now, but what next? I know her tumour is active or otherwise it won't reappear on the brain. I live in Sydney and went to Hong Kong last Sunday (19/6) and is in enforced quarantine for a week.

How can I help her suffer less? What's next for her?

I appreciate all your help.

On Ki

  1. I am so sorry to hear what your sister (and family) is going through. I understand, I am the 4th generation in my family to get lung cancer, my Mom passed away from it right before my own diagnosis. Non-smokers also, as we know all it takes is lungs to get lung cancer.

    The medical system is so different in other countries, are you able to get another opinion from a separate comprehensive cancer center? I am a big believer in second opinions.

    It is good that your sister's scans are clear now. Did her doctor say how they will monitor her? Will she be getting followup scans? Please feel free to share, we are here to support each other and are here for you and your sister. Warmly, Alisa, LC Patient Leader

    1. One more thing I forgot to mention: If you are interested in a support group and are on facebook, this group is so helpful and a wealth of information as many are going through or have been through what your sister is going through. Everyone is very helpful if you want to post your message there. Best, Alisa

      1. Hi Alisa,

        Thank you very much for replying me! I'm very sorry to hear your diagnosis, your mum and family. I can't imagine what you and your family are going through.

        My sister just visited her tumour doctor today and is planning to do some extensive genetic studies on her biopsy and planned to come back in 8 weeks.
        Her wonderful husband searched and asked for a few doctors' opinions, I think he will see at least two more doctors once the genetics report is available.
        I just spoke to my sister a couple of hours ago. I think she is suffering a deep depression or anxiety. This time is different and I have never seen her like this before. The brain metastases, intense pressure from the brain and sleepless nights has set her back. The pain she is going through! I feel so helpless. I am trying to book a psychiatrist for her asap. She is having a stereotactic radiation therapy next Monday. She might be too weak to see him after the procedure though.

        1. Oh it just breaks my heart to hear this. Eight weeks seems like a long time for the mutations/biomarkers results to come back. It is usually 2-3 weeks, you may want to reach out and ask about that. Since all was clear except the brain, was it a liquid biopsy they took to send out for testing? The precision radiation should alleviate some pressure and pain, please keep us posted. And again, the facebook support group has a lot of useful information. Sending warm hugs to you and your sister! ~ Alisa

      2. Hi . I'm so sorry to hear about your sister's diagnosis. Let me say that she is very fortunate to have you and other family advocating on her behalf. One thing I want to point out is that NSCLC is quite different than SCLC. It is generally not nearly as fast growing and there are quite a few more treatments available, particularly in the realm of targeted and immunotherapy. We have a couple of patient leaders here, such as , who have had brain metastasis and are doing quite well today. As Alisa noted, it is important to follow up on the biomarker testing. Wishing you and your family the best and please feel free to keep us posted on how things are going. Richard ( Team)

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