Mixed messages

Anyone else getting mixed messages from your docs?  I saw my surgeon for my final postop visit. Everything is healing well so he has discharged me, except not… I can call if I have any further problems without waiting for referral, I have a “Fast Pass”.  My followups will be at the Cancer Center when my treatments are done, except I should see him yearly to remain an active patient, but there really isn’t any need since my follow ups will be at the Cancer Center, but I can, but I don’t have to.   Clear as mud. Since there are obvious changes in my breast from surgery I asked if there would be more and when I would know the “new normal”  as far as doing self breast exams. He said there was no proof that self exams did any good.  (WHAT???) or mammograms for that matter.  I reminded him that I found this lump myself. So I should do them. Or not. Apparently it’s up to me.  I skipped my mammo last year based on the new protocol that every other year is sufficient and look where that got me.  It wouldn’t have changed the reality of the cancer, but it would have been caught earlier and maybe it would not have spread and I could have avoided the chemo. We’ll never know.  I’ve had similar conversations with Oncology.  For instance, when asking about side effects I get the standard “Everyone’s different” and then in the next breath.. “You WILL experience (fill in the blank)”.  And usually it’s the one side effect you hope to be spared .. like hair loss.

I’ve heard of chemo brain, but I thought that was supposed to affect the patient, not their providers. That being said, I really do like my doctors and my surgeon ended the visit by telling me I look remarkably well for someone undergoing chemo and pretended he didn’t know I was wearing a wig by asking if I had experienced any hair loss yet. You gotta love that.

12 comments

  1. Cancer Warrior · January 13, 2012

    Congratulations! You have been nominated for The Versatile Bloggers Award. To accept, you must do three things:
    1. Thank the person who nominated you (that would be http://www.perksofcancer.com)
    2. Tell 7 interesting things about your self
    3. Nominate 15 fellow bloggers.
    You can learn more at this link:
    http://perksofcancer.wordpress.com/the-versatile-blogger-award/

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    • mainelyhopeful · January 13, 2012

      Thank you. I’ll have to put some thought into my acceptance speech 😉

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  2. Herdy · January 13, 2012

    I’m a black or white girl…though I realise that life just isn’t like that. However, I had always thought Doctors lived in a black or white world….like you, I am increasingly coming to the conclusion that they don’t. Complete confusion and frustration are a daily side order with any cancer diagnosis I feel! Glad you’re doing well though xx

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  3. rachturner · January 13, 2012

    Mixed messages can be frustrating, but I do think they try their best to give us the best information – at least that’s been my experience. Each patient is so different that I’m sure the experiences, though similar in many ways, are quite different, too. I love that your doc asked if you were experiencing any hair loss! That’s priceless.

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    • mainelyhopeful · January 14, 2012

      I thought that was so funny. Then when I said my hair was gone he said “well maybe it will grow in bushy”. Then quickly corrected to curly when I said I hope not! 😀

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  4. eddiesandcurrents · January 13, 2012

    I get mixed messages, too. I think it’s because there is so much variety in how our bodies handle treatment and how our souls handle treatment. For me, it’s refreshing to hear a doctor say, “I don’t know.” Because I’ve always known that they didn’t. They just give you their best educated guess.

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    • mainelyhopeful · January 14, 2012

      That’s true. I’m not sure I would feel comfortable with someone who claimed to have all the answers.

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  5. Air Jordan · January 14, 2012

    Very good insights! I have been previously trying to find something such as this for some time now. Thanks for your insight! Air Force 1

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  6. lebenalsfilm · January 15, 2012

    Thank you for writing this blog and sharing your experience. I cannot imagine what a rollercoaster it must be; every cancer is so different.
    Answering your opening question: Yes, getting mixed messages from doctors here as well! I am in Switzerland and currently taking chemotherapy after my second brain surgery in December.
    After initially having received positive forecasts, I have really come to appreciate the more honest ‘We don’t know’ from my doctors.
    Cancer and life are so random, regular check-ups are a good call for sure!
    Most of all we both seem to have likeable doctors.
    Wishing you all the very best, hope the side-effects are tolerable, and that you recover well and will be healed.

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  7. beautywithoutblog · January 24, 2012

    In my little pea brain, I feel that the more methods used and the more frequently applied the better chance of finding something sooner.

    I applaud you for maintaining your sense of humor and for sharing your experience as you face this new challenge.

    Wishing you all the best.

    Gregg

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