prognosis

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stephenaudrey
stephenaudrey Member Posts: 32
in Head and Neck Cancer #1

If you are diagnosed with cancer its only natural that you would want to find out what is likely to happen to you.  I also read many places to stay off the internet because you'll only be misinformed because every person is different and every cancer is different and looking on the internet will tend to make things look blacker than they are.  I guess I agree that looking on the internet is pretty useless.  What do you think?

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    #2
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    To know or not to know..

    It's a very personal decision. As a surgical oncologist, my husband wanted a realistic assessment of his prognosis, so he did research NPC, but only on websites that are valid like the National cancer institute, world health organization etc.

    At the same time...I think it's crucial to remember that you are 1 of 1. statistics don't define you and how you will fare. Our modus operandi has been to prepare for the worst and hope for the best.

    Barbara

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
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    Depends

    It depends on how you use the information...

    If it's for statistics and survival rates and time... I find that pretty negative research, and mostlyn useless as much data is old, out dated, or not applicable as much concerning HPV derived, cure rates, etc..

    If it's just to get a better understanding, treatments, surviorship and positive support.., I'm all for it.

    That's one thinh that makes this board so valuable...

    Usually, there's nothing that you can ask, that hasn't been covered, or went through, by someone before you.. Many here have gone through it, are going through it.., or are caregivers of those that have or are..

    After being on here for six plus years.., I have to say that amongst those here, and that I've known.., survival is very high....

    Best,

    John

  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
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    Good and bad \ bad and good

     

    There is a lot of bad information that is true, but there is also a lot of very good information. There is always someone whose only interest is to make money on someone else’s misfortune that is a sad part of life. The way I am I want to know all I can about my cancer this helps me to know how to fight it best. As you said we are not all the same so what might work on you might not work so well on me just need to be careful of what you are reading and ask as many questions as you can.

     

    Just my take

    Tim

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #5
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    from Matt's H&N mouth

    SA,

    The internet is full of scary, depressing and useful information, but how do you know where you land before treatment starts, you don’t.  If you press your doctor for the information, you will probably get it, but you may not believe it or like it.

    I can tell you, for me, my wife and I started reading the posts on this form one month before my treatment began.  When I read drinking water helps a lot I thought I can do that, that won’t be any problem.  That was some of the best advice I received and it was easy.

    You are not left with a lot of choices, you either fight it or you don’t.  I certainly know a lot more about cancer today, enough to make me uncomfortable, but what are you going to do?

    Think happy thoughts,

    Matt

     

  • ratface
    ratface Member Posts: 1,337 Member
    #6
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    It's a double edged sword

    I think doctors are quick to dismiss internet research as not valid unless it comes from a  peer reviewed formal paper but the reality is that there is much useful information by way of the internet. It's a tool to be used properly. Used properly it leads to informed and appropriate decision making. Used poorly it can instill great fear. I think overall it's positives outweigh it's negatives. There is one caveat I would mention and that is that most of us go through a period of emotional turmoil where we are susecptible to interpreting some perceived fact as truth. If we just get multiple souces of informatiuon we will make fairly good decisions. This is but one source only and bearing that in mind the internet is helpful or at least has been for me.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
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    After joining this board...

    I quit making internet searches....For me, I don't want to know stats, and percentages.....I have a bad habit of letting something negative stick in my brain for years, and the positive stuff seems to slide off my back....This is just my personal way of avoiding the anxiety that has already affected how I view life in general. 

    In other words....it's a personal choice of how much they want to know....I pay attention to my body, I do all the footwork required, and try to take care of myself....if I have a question, I'll ask one of three Drs. who are still in my life.

    p

  • wmc
    wmc Member Posts: 1,804
    #8
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    I can depend on you. How you do research........

    I did all my research on mine and found out great information so I was prepaired. I found where I was going to have my surgery and picked my doctor as well. I do not recomend that to others because I don't know them or there ability to research and which sites are helpful and which ones will only make it worse and scare them that much more. I have been doing research on the internet for 28 years+. Did it as part of my job at times. I use YouTube as well. For me, it works, you just have to understand when they put up numbers it in general and you have to know all the varables to add to them. HPV +/- and localized or not, did it spread, is the primary known or unknown, and then you have to add your "other medical conditions". I found this three months after and had returned to work more that two months. It still helped, as everyone on here understand and have lived it, or were the caregiver to it. The best place to find answers is here, and the Superthread. Just my thoughts.........

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
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    stephen, most of the info on

    stephen, most of the info on the internet is OLD and very outdated.  personally, i'd much rather get my info from sites like this and by real people who have walked in my shoes.  the info is current and one has experienced what i am so they truly understand.  i hope you feel satisisfied with the info you get here.  take a look at the superthread, it is filled with great info.

    God bless you,

    dj

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