Posted By: Support55 Prognosis question from new caregiver - 06-20-2022 03:01 PM
I am going to be helping my friend, age 40, who is Stage 4 throat cancer. It was not caused by HPV and she has no risk factors (doesn't smoke/drink). It has spread to her thyroid and lymph nodes.

She is being told by multiple doctors that the survival rate is 38%. Just wondering if that is accurate since she is so young and seemingly healthy, or if that statistic is skewed towards older patients?
Posted By: Brian Hill Re: Prognosis question from new caregiver - 06-20-2022 03:34 PM
No doctor can tell her what her survival percentage rate will be. Pulling a number as specific as that out is bad doctoring. Every person is a unique biological entity, and no two are the same. Perhaps in some study of a large group of people you could extrapolate estimates of what happened to the group, but you could not predict what happens to any singular person in the group. There are two good articles about this specific idea in the treatment section of the OCF web site under diagnosis. They speak to probabilities and statistics.

The danger in telling patients anything is that no matter what you tell them, you can create a situation that damages them emotionally and leads them to believe and behave in a way that impacts their outcomes. A self fulfilling prophesy. Every patient wants to know two things, why me and what are my odds of surviving this. Both these questions are a waste of intellectual and emotional energy.

Please reinforce in her that the future is not preordained, and that outcomes are dictated by individual genetic biology, and quality of care. One you have no control over so thinking about it is a waste of time. The other is something you can impact by getting treatment in the best facility and by the best treatment team you have access to. And yes, where you get treated makes a difference. Peer reviewed published studies have shown this repeatedly. Do not let geography and convenience dictate that team.
Posted By: Stephie75 Re: Prognosis question from new caregiver - 10-28-2022 06:20 PM
Brian,

Thanks for that comment. I really needed to read it after I found out I had ENE and looked up what it was, and found out what stage I was. I was diagnosed with a second cancer (primary cancer) in my soft palate (HPV -) a couple months after finishing radiation for HPV+ cancer on my left vocal cord. It affect on ipsilateral node on the same side. I've just been bummed and I needed a reminded I have no control over what it decides to do one way or the other. With that said, I am eating pretty healthy, and I am not drinking any alcohol and quit smoking long before the cancer diagnoses.

Thanks again for everything you do!

-Stephanie
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