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    I had visits with two women today who had to push for an accurate diagnosis.

    I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red and swollen before her eyes. She pushed until they knew what it was, and then she searched until she found someone who understood Inflammatory Breast Cancer. She told me that I was the first IBC survivor she had found who was diagnosed promptly and accurately. It was a full morning, and she gave me lots to think about. If you do a Google search on Valerie Fraser, you’ll see what a pioneer she is. She didn’t wait for someone else to give her the last word on her disease.

    As I become more and more connected into the cancer advocacy world it is becoming clear that far too many people are not getting diagnosed promptly, and the story I keep hearing is that people know something is wrong. They know, and their doctor tells them not to worry, to wait. I naively thought that this was most common with IBC, and that other cancers were diagnosed more quickly.

    After having breakfast with Valerie I headed back to San Mateo to teach my kids. Then it was to California Cancer Care to stand with my dear friend Anne for her second appointment with her oncologist. While I was waiting, I ran into another cancer traveler. I recognized her by her “fuzzy head” and we had a lively conversation. She had known something was wrong. She waited five months for a proper diagnosis! She wonders if her ovarian cancer would have been Stage 1 instead of Stage 2 if the doctors had taken her concerns seriously.

    I would love to think that this stuff doesn’t happen anymore, but it does.

    The problem is that none of us wants to believe we have cancer, so it can be the path of least resistance to not worry when deep down we know something is wrong.

    I really don’t know where I’m going with this rant. I’m expressing frustration. Can the “average Joe” know all about stuff the doctors are supposed to know? It is also true that doctors are human and can make mistakes, but I take issue with a doctor who decides what a problem is before eliminating every possibility.

    It still comes down to advocating for ourselves, knowing our bodies well, and taking charge of our medical care.

    And, scary as it is, squirmy as it makes people, I still tell every woman I meet.

    It’s been a long day.


    Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.

    When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.

    I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.

    I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.

    Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.

    This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.

    Sometimes emulating an ostrich is really not such a bad strategy!

    I just posted a blog about Inflammatory Breast Cancer.  Why?

    It’s a rare cancer, so it may not be relevant to a lot of people.  But for those who want to know, it is more than relevant, it is extremely important and unbelievably scary.  Why?

    Stinkin’ statistics!

    When you or someone you love is diagnosed with cancer, it is tempting to look for hope in statistics.  The problem with that is that many statistics are irrelevant by the time they’re published.  Sometimes you’ll find different statistics in different places.  If the statistics are on your side, maybe it helps to look at them and maybe not.

    When I was waiting for my cancer diagnosis, my mom was going crazy on the internet, looking up all kinds of breast cancer and trying to second-guess her fear.  What I had sounded alarmingly like IBC.  She told me she said to herself, “oh please God, not that one!”  Everything she read about it sounded terrifying, the statistics not the least.  She didn’t tell me any of it.  When Dr. Brown gave me the diagnosis of Stage Three Inflammatory Breast Cancer, her tone of voice and facial expression told me it was breast cancer, period.  She told me that I had an aggressive cancer and that we would treat it aggressively, and she was optimistic because she was confident that I could handle the treatments.

    I responded to her optimism with my own.  I was very blessed to have her and the other amazing docs on my team taking care of me.  I didn’t know that I had the bogeyman of breast cancers until later, after  my “phenomenal” response to chemotherapy.

    So, if you or anyone you know is facing cancer, forget about statistics if they aren’t great.  If they are, so much the better.  Each of us gets to choose where to direct our energy, and for me the pursuit of my own happiness and well being was the most important task on earth in 2007.

    I still try to remember that. When Mama’s happy, everybody is happy!

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