Breast Cancer

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    Idiotic and tactless comments #medical #surgical #BreastCancer #Recovery #cowdens Syndrome #Caregiver #Mastectomy #Laugh

    Some ppl feel the need to fill the air with words. Some feel the need to reassure themselves that whatever challenge you have is your fault and they are protected, and some are just stupid tactless and mean. Whatever the reason ppl sometimes say things that are rather jarring in their sparkling incredible….. instead of crying let’s laugh at it
    I’ll start
    1. Post mastectomy and reconstruction: is that really the size you wanted? If you had the option???
    2. My cowdens kid exhibits some symptoms consistent with autism: “ is he vaxed?”

    2 reactions
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    Depression and Advanced/Metastatic Breast Cancer

    Today is an up kind of day for me. I’m 2-months post diagnosis for metastatic/invasive lobular carcinoma. At first, I was scared, then angry, then a depressive episode (DE).

    Recently, I flipped a mental switch from “Am I going to die soon?” to “How shall I live with this long-term illness?” I’m emerging from the depressive episode, and want to reconnect to the supportive people I ghosted during the darkness. But, I find it almost impossible to call people.

    My world looks exactly the same, but I have more appointments and more uncertainty to deal with, and I am tired. I am glad to find a community that understands differently abled people. Thank you.

    12 reactions 7 comments
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    What do you find to be the most challenging about a cancer diagnosis?

    Getting a cancer diagnosis is many things — heartbreak, anger, pockets of simplicity, grief, even gratitude. But there are parts of it that straight up suck.

    What’s been the #1 challenge for you or a loved one?

    #Cancer #BoneCancers #BreastCancer #OvarianCancer #LungCancer #ThyroidCancer #lymphoma #ChildhoodCancers #MentalHealth #ChronicIllness #ChronicPain #Caregiving #Grief

    1 reaction 2 comments
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    In need of some good vibes

    I was dumb and mopped the house yesterday. Having a rough painful day today. Plus, I’m at the latest breaking point with my chronic pain getting to me. # fibromyalgia #BreastCancer #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Anxiety #Depression

    19 comments
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    Conflicting Risk & Recommendations

    Yesterday, I had a telehealth appointment with the NIH about my CDH1 gene mutation. The information that I got in those 30 minutes was completely different than what the genetic counselor and surgical oncologist had told me. And now.... I'm at a loss about what to do about my surgery date coming up.

    Basically what I've been told was my risk for diffuse gastric cancer was between 56-85%. But what the doctor from the NIH for the clinical study I entered said since my family history of cancers doesn't include stomach cancer, my risk was more like 30%, and instead, my breast cancer risk was more serious. That is a huuuuuuuuge difference. I have scheduled a Total Gastrectomy under the assumption that my stomach cancer risk was the more pressing issue. Getting it done and over with was how I was tackling this. I came to terms with the fact I was going to have major surgery...

    But now what? Do I cancel my surgery and hope that the endoscopy I'm getting doesn't show any signs of cancer? Wait a bit later on to do the surgery rather than next month? Or should I go thru with it anyways? What am I supposed to trust: information from the military hospital system or the NIH?

    I have no clue. But I have to find one before my surgery date creeps too close. Otherwise, I might be making an unnecessary life-changing decision out of fear that may or may not be accurate.

    1 reaction 1 comment