Does participation in the breast cancer blogosphere increase anxiety?
I just read an article about eHealth literacy and anxiety and it got me thinking. Actually I’ve been thinking about it a fair bit lately – since my last appointment with my breast surgeon. At that appointment, the nurse practitioner told me “you have been cured”. It is the first time that someone has used the word “cured” about my cancer. I also found myself wondering if it was appropriate. I wondering if “no evidence of disease” is a better term than “cured”. I’m pretty sure my medical record says “NED” rather than “cured”. At my 6 months follow up I made my surgeon say “no evidence of disease” out loud because I needed to hear those words. But this got me thinking. If I didn’t know as much about breast cancer and recurrence, would I feel better about being told I was cured? Would I believe it and would it allow me to move on with my life with less anxiety?
I found that being prepared for chemotherapy helped reduce my anxiety about it. I had read a lot, as had my husband. We had some sense of what I would be experiencing. I had mentors (that is the best word I can think of – peers who were ahead of me in the chemo process), who helped me feel more prepared for chemo. So, being health literate helped reduce my anxiety as I went through active treatment.
But now that active treatment is over, the health literacy isn’t helping me. I know too much about this disease. I know that because of my age I’m at increased risk for recurrence. The information that I have means that I cannot simply accept it when the nurse practitioner uses the word “cured”. I cannot believe it. It does not help me feel less anxious.
I’m left wondering if I would have had the same reaction post-treatment? Would I have found my self as anxious, if I wasn’t so aware. For me, being aware helped me advocate for myself during active treatment – but now it just makes me question. It makes it harder for me to trust my healthcare team. I find myself not believing when they tell me I’m OK. I’m doing fine. I’m cured.
It makes me wonder, does participation in the breast cancer blogosphere make me more anxious? Or is it participation in support groups that is causing an increase in my anxiety? Or is it just that I’m in that post treatment phase and anxiety is something that was going to happen to me anyways?
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- Becky
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Ummmm…. I absolutely think the breast cancer blogosphere is helpful and supportive.It provides truthful information as opposed to random googling of information. It educates as. As an intelligent woman don’t you benefit from more information? It also helps answer those post treatment questions that help us move on with our lives. And it gives us the opportunity to help others and pass along our knowledge with gives us a sense of satisfaction as well.
But I cannot help but wonder, would I have been happier if I were naive, and just trusted everything I was told? I don’t think it would have helped me while in treatment – but afterwards? Does knowing more not lead to more worry?
I’m not in your shoes but I suspect that
A. You made yourself less anxious during treatment by staying informed. This was the time you most needed it and should not be regrettable
B. I suspect all cancer survivors remain anxious all their lives. I imagine those who are medical doctors have it harder than you because they really know how bad it can be…and it’s possible that some really ignorant people get less anxious because they don’t realize the risks of recurrence. But I suspect it’s normal to be where you’re at. I don’t know many uneducated people who have had cancer so I can’t say for sure. Over here, the less educated are likely to get diagnosed too late to survive at all, I think. The anxiety may help you detect (I hope it doesn’t happen but in the worst case scenario that it does) recurrence early enough to tackle it. It’s not a useless kind of worrying. It’s vigilant
Everyone is different. Becoming informed and an advocate for myself was the only way I could get through my own diagnosis and treatment without being terrified. That thirst for knowledge is part of who I am, period. Conversely, someone in my BC support group took comfort in leaving everything up to her doctor. Any info beyond the bare minimum caused her high anxiety.
The only thing I can suggest for a strategy that has worked in the past but that hinders you now is to find a work-around that can give you some peace of mind. I know that’s much easier said than done, but I can’t think of any other solution. Keeping a personal journal (rather than posting publicly) has always helped me. It is a form of meditation and helps me put things into perspective, plus I can rant and vent freely as I need. (((Hugs)))
I have thought the same many, many times. Thanks for putting it into words. I just graduated to only-once-a-year trips to the oncologist, and “cured” was batted around. But I know better.
I have asked myself the same question many times. But anxious as I am about my high risk of recurrence, I firmly believe knowledge is power and would rather know than not know. Best wishes.
I was diagnosed with PTSD after my early stage treatment. My continued involvement in the breast cancer biosphere could have played a role, who knows. I know many women who were told by their medical team that they had been cured, only to find out later that they were metastatic (which made them really mad). I think you have to make sure you are moving on with your life the best that you can (if you have to face recurrence, deal with it then, don’t let the fear of it overtake you).