Can you have too much information?
Being a firm advocate of arming yourself with as much information as you can when you are faced with a health crisis, I am intrigued by an article in Cure Today which poses the question, how much is enough when it comes to cancer information? Helen Osborne, a health care provider and health literacy consultant always believed in the power of information, but started to question this belief when she was diagnosed with early-stage breast cancer.
“This diagnosis not only changed me physically but also made a profound difference in the way I think about health communication. ” she writes. “Before my diagnosis, I assumed that more health information was always better than less….Now diagnosed, I spoke at length with my doctors about treatment options and outcomes. I also talked with a few women in situations like my own. Most of the time, that was sufficient information for me. I found that I would get more confused and overwhelmed when I read a lot of articles about research or looked at many websites for patients. I also found that new information often raised my level of anxiety as I would zero in on the worst possible outcome and be certain that it would happen to me.”
I recognise this scenario myself – trawling through websites and online forums my stomach did a loop as I realised that the chemotherapy I was facing into may make me infertile. My medical team had not discussed this with me, or what my options with regard to preserving my fertility were. So armed with the information I had gathered myself, I was now in a position to bring this to the table with my oncologist. If I hadn’t done this research for myself, I would have undergone chemotherapy without having made any decisions regarding fertility preservation, and I know that I would have emerged the other side of this with serious emotional and psychological issues as a result. So as you can imagine, I am firmly on the side of arm yourself with as much information as you can about your illness and its treatment, and don’t rely solely on your medical team to do this for you.
This is what worked for me, but back to the question posed by the Cure Today article. What’s the right amount of cancer information? The conclusion Osborne comes to is that there is no right amount. “Just as our physiology differs, so too does our need and desire for health information…You are the only one who knows how much information is enough. ”
I am interested to know what you think. How much information is enough for you? When faced with an illness do you turn to your medical team and rely on their information and advice? Do you supplement this with a little research of your own? Or a lot of research? Please share your thoughts are on how much information you think is enough.
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this is an interesting question – personally i too like to be armed with as much information as I can in order to make more informed treatment decisions.
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I am shocked that your oncologist didn’t inform you of the effect of chemotherapy on your fertility. Mine was very helpful when it came to this issue – I cannot imagine what it would have been like for me to have to come up with all the necessary information myself at the time.
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I fall into the camp who trust their medical team to give them the information they need. It is just too scary for me to read about my diagnosis on the web.
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As you said in another post once, your life really is in your hands – don’t rely on your medical team to make all the decisions for you – arm yourself with as much informaation as you can.
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Definitely believe we owe it to ourselves to find out as much as we can about our illness or disease – knowledge is power!
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I am always fascinated to read how health professionals react when they become patients – the view from the other side!
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Yes I felt I was drowning in information at the time of diagnosis.
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No, I don’t think you can have too much information – you just need to learn how to filter the amount that is out there.
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I’m all for information but with a caveat: information without perspective can be gibberish. But there are tons, and I mean tons, of general level sites that relate information about cancer. When I was diagnosed I looked for everything I can find. Then I want my oncologist to put those numbers in perspective for me.
Thanks for another great post, Marie!
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Sounds like you struck a good balance there Jody. Thanks for taking the time to comment – I really value your thoughts as always 🙂
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Yes, I like the balance Jody struck – good advice!
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Love your website! Great Post! I am on round 5 out of 6 rounds of chemo for breast cancer. When I first found out I had BC I read everything, every study I could get my hands on because I didn’t and still don’t trust doctors and wanted to be armed with good questions when we were talking treatment. I have an HR background so asking questions and not take things at face value are a part of my being.
I suppose the HR/benefits background also contributes to my being suspecious of the drug companies who make lots of money via treatment etc.
In addition I did lots of reading about curing cancer through nutrition and am highly opposed to all of the extra drugs they wanted to give me with my treatment. My stand was if I need the extra nausia, benadrill, steroids then fine we will consider however I am not going to have you load up my iv “just in case.” We finally preceeding with treatment with the agreement if I did the extra pre drugs I would agree On round 5 of 6 we have not needed anything extra. I just didn’t want the side effects of that also.
I say all of this to say there was a point when I had too much information. And when you present the information you have to the doc…they will say that’s great however go back to what they know. That got frustrating for me!
I must say that God has significantly been the Rock for me as He has no hidden agenda and my best interest at heart. He uses the medical community however has given me dissernment with all of the information. I hope that answered your question…I just love your common sense approach to Cancer!
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What a great comment – you make some terrific points here which I can readily identify with. Thank you also for your kind comments on the blog. Wishing you well on your journey beyond cancer.
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Great comments from everyone!
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A great question Marie and some interesting responses.
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It can be difficult to navigate all the information and options that are available. Take your time, get organized, and if possible, bring a trusted friend or family member to appointments with you. If that is not an option, ask if you can record the consultation – that way you can focus just on listening, and go back and review the whole conversation later. Slowly sort through the information, do some research, and ask more questions if needed before you make a decision on treatment.
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For me it is scary to get more information, but usually it turns out my imagination is more scary:) At the same time, the information can be overwhelming. So somehow timing the amount of information is ideal, and I need to make sure I am emotionally aware for myself to cut off the amount of information I am receiving.
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