Hello, and wondering about laryngopharyngectomy and non-curative treatment

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robinsok
robinsok Member Posts: 4 Member
in Head and Neck Cancer #1

Hi everyone,

I'm new here. My husband was diagnosed in February 2020 with hypopharyngeal cancer, stage IV. He's been through chemo and radiation with Erbitux, which has shrunken his tumors but according to the 3 month post-treatment PET scan we just had, not enough to get rid of all the cancer. We've been told that his options are looking like either a laryngopharyngectomy, or "abandoning a curative approach." I'm terrified by both of these options, and wondering if anyone has any experience with them. Or any suggestions re: how to cope. 

Thank you in advance. 

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  • Ag123
    Ag123 Member Posts: 54 Member
    edited November 2020 #2
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    Hi

    Hi Robinsok, 

    I'm sorry to hear about the residual tumor. 

    I would get a second opinion if I were you. I was reading a survivor story (not on this forum) the other day of a patient who had stage IV nasophangeal (not exactly like your tumor but it's also head and neck and I would assume it has similar prognosis). He also developed what's considered "treatment failure" as some nodes light up in a PET scan. He removed the nodes in surgey, and despite not being able to do radiaiton again, he is still alive and kicking 4 years after this incidence. As much as it sucks, a recurrence doesn't always mean life's over.

    Even if surgey or radation aren't such appealing options, you can still look into/ask about immunotherapy? I beleive several folks here have done it and they can speak about their experience. 

     

  • robinsok
    robinsok Member Posts: 4 Member
    edited November 2020 #3
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    Ag123 said:

    Hi

    Hi Robinsok, 

    I'm sorry to hear about the residual tumor. 

    I would get a second opinion if I were you. I was reading a survivor story (not on this forum) the other day of a patient who had stage IV nasophangeal (not exactly like your tumor but it's also head and neck and I would assume it has similar prognosis). He also developed what's considered "treatment failure" as some nodes light up in a PET scan. He removed the nodes in surgey, and despite not being able to do radiaiton again, he is still alive and kicking 4 years after this incidence. As much as it sucks, a recurrence doesn't always mean life's over.

    Even if surgey or radation aren't such appealing options, you can still look into/ask about immunotherapy? I beleive several folks here have done it and they can speak about their experience. 

     

    Thank you, Ag, and I'm glad

    Thank you, Ag, and I'm glad to know that there are some hopeful stories out there. We will seek out a second opinion and ask about immunotherapy. Again, thanks for your reply.

  • Ag123
    Ag123 Member Posts: 54 Member
    edited November 2020 #4
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    robinsok said:

    Thank you, Ag, and I'm glad

    Thank you, Ag, and I'm glad to know that there are some hopeful stories out there. We will seek out a second opinion and ask about immunotherapy. Again, thanks for your reply.

    Hi robinsok,

    Hi robinsok,

    Of course. I wish I could provide with more reassuring evidence. But all I have is know on stories I read on this forum or on other places. 

     

    There are many trials going to treat these recurrent or basically what's traditionally thought to be helpless conditions. The outcomes can be surprising. You never know. 

     

    Wishes for the best!

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