Still working

I am still reviewing and contributing stuff for the new Our Bodies, Ourselves. I am learning a lot more about breast cancer and screening, in the process.

If anyone has any breast cancer or breast screening stories, please feel free to share. Even thought my mother has had several biopsies and ultrasounds, our family has been thankfully free from breast cancer.

In the meantime, I will try to stay on task.

6 Comments

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6 responses to “Still working

  1. My friend Susan is an incredible survivor of Inflammatory Breast Cancer (IBC), the “lump-less cancer.” She has blogged about her fight from when she received her diagnosis through when she finished her last treatment of radiation. You can read her story here:
    http://toddlerplanet.wordpress.com/inflammatory-breast-cancer/
    http://toddlerplanet.wordpress.com/2007/07/23/inflammatory-breast-cancer/

    IBC doesn’t receive the same media attention as more common forms of cancer, yet is far more aggressive with much lower 5yr survival rates. If you haven’t mentioned it for the book already, you should consider at least discussing the symptoms. Since no lump is present, many women don’t know to be concerned when symptoms present.

    • MomTFH

      Thanks for sharing. I coincidentally just added a description of one of the main symptoms of that type of cancer, the orange-peel skin (“peau d’orange”), to their passage on visually inspecting your breasts. It is a devastating type of cancer.

      • Helen

        There’s an excellent, sobering overview at http://www.komonews.com/ibc/

        “And, survivors tell KOMO 4 when they were diagnosed, they called Cancer Centers and couldn’t get help.

        So, we called four cancer help lines in Seattle, and 3 out of 4 didn’t know about IBC.

        “It stands for Inflammatory Breast Cancer, 3 separate words,” I tell one center.

        Even when I spelled it out, they still didn’t know.

        “I just want to be sure, I called the resource desk at the Seattle Cancer Care Alliance, is that right?” I asked.”

        • MomTFH

          Oh, my. Well, I am happy to say Inflammatory Breast Cancer, was covered well at my medical school, with photos, pathology, descriptions of how aggressive and lethal it is, how it can strike at any age, etc. And, there will be detailed information in the chapter, and resources in the resource section.

  2. In case it’s helpful, this post from XUP and its comments share a number of stories related to breast cancer screening:
    http://exurbanpedestrian.wordpress.com/2009/12/03/diti/

    Also, Knitnut has been blogging her experiences through breast cancer and treatment:
    http://www.knitnut.net/category/breast-cancer/

    Our Bodies, Ourselves is a must-have on every woman’s shelf! Keep up the amazing work.

  3. I think I mentioned in a previous comment that I’ve had experience with breast cancer screenings that changed my personal approach to mammograms. I found a lump when I was about 37, so had a mammogram then. They did lots of close ups, not because of the lump (which was just fibrocystic tissue) but because of calcifications. I had several years of follow up mammograms. When I was about 41, they focused even more on a cluster of calcifications and decided to do a stereotactic biopsy, a procedure I found very unpleasant. The result: benign. Went back for another mammogram the next year, and they found more calcifications. The doc this time said the previous calcifications should not have been biopsied–they were visibly unlikely to be cancer–but this new cluster was different. So another stereotactic, another benign result. At this point, I was fed up of annual “I might be dying” scares, did more research, decided that the evidence is not clear that all this testing was beneficial, and swore off more until I’m post menopausal. The relief from feeling like I have ticking time bombs strapped to my chest is huge. I completely accept that there is a tiny chance I might die because of this decision and a slightly larger chance that if I find a lump later than a mammogram would have, the treatment will be more unpleasant and invasive than it would otherwise have been, but I’ve made personal peace with this. I did not appreciate my PCPs brow-beating of me for this very well researched, long-contemplated decision. I’m a survivor of cervical cancer, I do not take cancer lightly. Breast cancer screening is entirely different from PAPs, but docs have done a poor job of communicating this, maybe because many don’t themselves understand that.

    My next avenue of research is colon cancer screening, since I’m 4 years from the recommended age for starting that and my family has a history of digestive tract cancers (though generally stomach, not colon). I *think* colon cancer screening is more on a par with PAPs for risk/benefit, but I need to read more.

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