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What do you wish you had known when you (or your loved one) were first diagnosed?

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  • moderators
    moderators Posts: 8,185
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    @texasmama, @luvdbyhim and @ChrisD we so appreciate you sharing here! Yes, @ChrisD so important to know you're not alone in your feelings!

  • moderators
    moderators Posts: 8,185
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    So very true, @zen1028! The lack of control is one of the hardest adjustments for so many.

  • caseylait
    caseylait Member Posts: 1
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    I wish my oncologist educate me on what all this would do to my sex life. I also wish that I had know that chemo would put me into menopause (53 and still having fairly regular cycles at diagnosis) and how to deal with it. I blamed all my problems on chemo when it was actually menopause that made me feel so bad (after recovering from all my treatments). I’m now feeling better than ever by managing my menopausal symptoms with safe and effective HRT. There is SO much MISINFORMATION regarding HRT, including on this very website. Get educated on what is safe for you and make your own educated choices. I choose quality of life! I’m saved by the blood of Jesus, so when He is ready to take me home, I’m ready to go and I don’t care if it’s breast cancer—it won’t be because I ignored my bone health, cardiovascular health and brain health. God bless y’all and keep fighting for yourself!

  • m0mmyof3
    m0mmyof3 Member Posts: 9,519
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    I wish that I had been told that treating breast cancer was a marathon, not a sprint.

  • quiltycat24
    quiltycat24 Member Posts: 2
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    Hi everyone,

    So, I ended up missing my first appointment and rescheduled. Just had the imaging done last week, and fingers crossed 🤞🏻 all is well. They found some lumps and weird things but the doc says they're likely benign. I go back in October for follow-up imaging just to be sure but other than that, I'm good. Thank you for all your support, you are an awesome community. 💖

  • 2019whatayear
    2019whatayear Member Posts: 468
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    I wish I had known that the biopsy results are preliminary and that it's not til after surgery that you know exactly where things shake out as far as treatment to come.

  • anne_resmini
    anne_resmini Member Posts: 1
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    I wish I had known How badly some doctors communicate with patients. I just recently got diagnosed and had surgery with a sepsis inflammation in the background that consumes me and I approach every step of the way with 12 different providers for my sepsis that I feel think I am crazy for thinking about it. Doctor communication is killing me!😔

  • moderators
    moderators Posts: 8,185
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    Hi @anne_resmini, and welcome to Breastcancer.org. We're so very sorry to hear of your diagnosis and the struggles you've had post-surgery, as well as your communication issues with your care team. We're sure you'll find our Community a wonderful source of advice, information, enouragement, and support — we're all here for you!

    We wanted to share some links with you that you might find helpful:

    https://www.breastcancer.org/managing-life/staying-on-track-with-treatment/communication-with-heathcare-team

    https://www.breastcancer.org/videos/building-supportive-communication-with-your-doctor

    https://www.breastcancer.org/treatment/planning/finding-the-right-doctor

    We hope you can get some help in communicating your concerns to your providers and that you get well-cared for soon! Please keep us posted.

    —The Mods

  • kotchaj
    kotchaj Member Posts: 212
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    Hello  @anne_resmini,

    Welcome to the group and I mean that sincerely. None of us want to be here, but this sure does help to have a place where others are familiar with what we are going through and can relate.

    I used to be Director of Patient Experience at a 3 hospital system in upstate New York until we decided that it was time for me to retire and do something a little more fun for work. I work at a junior college now in the Midwest in my hometown. Anyway, when I was working so closely with the doctors, if there was a struggle getting an answer out of them, I'd ask them what would THEY DO, if they had my same situation and it has helped me immensely, still now when I'm being a patient. I also used to remind them that there would be a group of different physicians, with all different priorities, speaking to ONE patient. Tell them to name a spokesperson for all of them or ask them who they've spoken to in the group taking care of you. Put them on the spot, it's your health that matters. REMIND them why you feel the way you do, they forget, not because you're not important, but because they see so many people.

    Hang in there.