Sunday, October 4, 2009


October is Breast Cancer Awareness Month and the Pink Ribbons are flying!

What does that really mean ... AWARENESS???????

Before I was diagnosed with Invasive Lobular Carcinoma, I was aware of the prevalence of breast cancer. I knew it was a disease that struck mostly post menopausal women. I was aware that women who have family histories; who smoked; who took oral contraceptives for prolonged periods of time were more likely to be stricken with breast cancer. I was aware of mammograms and lumps and lumpectomies and mastectomies. I was aware of the existence of radiation and chemotherapy treatments.

I was aware of our local news station and its "Buddy Check 12" campaign. I was aware of the Pink Ribbon campaigns. I was aware that every October there was a hub-bub about the Susan B. Komen Race for the Cure. I was so aware that for the last 15 years I ran the Race for the Cure; ironically shaving off up to 8 minutes in my pace time each year. (As it turns out, I guess I wasn't running fast enough!!!!)

It wasn't until I was blind-sided with a diagnosis of breast cancer this summer that I became aware of the breadth of my ignorance. There was, and still is, so much that I did not know about the disease and its treatment. And, none of the information I received over the last 15 years of my "pink" involvement ever even hinted at the depths of my naivete.

For example . . .

I did not know there were myriad of causes of breast cancer - the majority being environmental
I did not know that women without genetic predispositions could get breast cancer
I did not know that women who did not live a high-risk lifestyle could develop breast cancer
I did not know that there were subsets to breast cancer (ductal, lobular, inflammatory and Paget's Disease)
I did not know that as a pre-menopausal woman in good health I could develop breast cancer
I did not know about sentinel node biopsies
I did not know about drainage tubes ("d-bombs")
I did not know about tram flaps; or that as a 100+/- lb person I am not a candidate for one (And thank the Creator for that one - not a procedure I would have wanted!)
I did not know about the long term effects of chemotherapy
I did not know about Adriamycin (aka "Red Devil")
I did not know about Tamoxifen (or that outside of the U.S. it is listed as a cancer-causing carcinogen)
I did not know about Herceptin and Aromatase
I did not know that the medical community treated pre-menopausal women differently than post menopausal women
I did not know about Oncotype DX and MammaPrint tests for chemo efficacy
I did not know about how a cancer is "staged"
I did not know that mammograms are not a reliable or effective way to early-detect Invasive Lobular Carcinoma
I did not know that a Vitamin D deficiency can be a contributing cause in the development of breast cancer
I did not know how key Vitamin C is in preventing the occurrence and recurrence of breast cancer
I did not know that a build up estrogen in the body is toxic.
I did not know that the only way the body effectively disposes of unneeded estrogen is through daily waste elimination
I did not know about E-cadherin and protein tests and saliva tests and hormonal balancing
I did not know about the vast discrepancies in how breast cancer is approached and treated in the U.S. as compared to Europe - and that stateside we are not on the higher road

and so it goes on, and on, and on . . . . AND

I did not know what an insidious and pervasive industry that breast cancer has generated in the U.S.

I did not know that the med-pros really do not have a "CURE" for breast cancer, but rather a "PROTOCOL" - that they are vociferous in the application of their established protocol; that the protocol has not changed much in 50 years; and that despite the protocol women are still dying - at times as a result of the protocol.

I did not know that even though 100s of millions are raised for research, awareness, marketing and merchandising that we are still no closer to a cure.

I did not know that some of the pharmaceutical companies that produce & distribute cancer treatment drugs consciously include cancer-causing carcinogens in the household products and foods we consume.

I did not know that I would need to become my own "lay expert" in order to earn a voice in the discussion regarding my own health and treatment.

October is Breast Cancer Awareness Month. And, I am a little more aware this October of 2009 than I have been in all my previous years. I am also excruciatingly aware that my new found knowledge and the continuing pursuit of knowledge has nothing to do with the flying of little Pink Ribbons!


  1. Be angry... you have every right to be. Especially living in the US. OK call me biased. But I've experienced the healthcare of the US, UK, CH, ES, and FR. FR was the best experience (and just so happens to be on the WHO's list as #1 in healthcare worldwide), but my experience was only for a broken foot. No idea how France or the UK treat breast cancer. I suspect both countries are more "pro-active". Afterall, the sicker a patient, the more expensive it is to treat that patient. Cynical, I know, but true.

    More to the point WHERE are you TC, in your treatment? We know you are angry. We see you are educating yourself on a daily basis (who would guess that your small size may work against you, if indeed it actually does), but please give us clue on the current prognosis. Does anyone know?

    I love and miss you,

  2. I heard Joni Mitchell singing throughout your Pink Octoberfest: "Woke up, it was a Chelsea morning, and the first thing that I knew There was milk and toast and honey and a bowl of oranges, too And the sun poured in like butterscotch and stuck to all my senses

    Oh, won't you stay We'll put on the day And we'll talk in present tenses

    When the curtain closes and the rainbow runs away
    I will bring you incense owls by night
    By candlelight
    By jewel-light
    If only you will stay
    Pretty baby, won't you
    Woke up, it is a Chelsea morning"

    According to best theory, we all get cancer many times each day. Simply stated, as the billions of individual cells divide and multiply, some lose their coherence with the rest of the body and the ability to maintain their relation with the organ they are in is destroyed. We then have cancer. This happens repeatedly, but the cancer-defense mechanism - quickly takes care of the situation. The strength of this defense mechanism, which is part of the immune system, is originally set by our genetic inheritance and the strength can be weakened by a number of factors, a few you have taken the time to illuminate.

    From both an inside and outside viewpoint, we all need to wake up to the complexity and multivalent nature of diagnosing, treating and healing. ~Coffey Cakes

  3. Vic - not angry. On Sunday evening I sat down and started thinking about the "Race for the Cure" coming up next weekend, and how, despite running in the race for the last 15 years that my true knowledge about breast cancer was painfully lacking. So, I started writing about all the key things that I have learned, not because of October's Awareness campaign, but because I was flung into the vortex. It is at those time you either figure out how to swim or you succumb. I like swimming.

  4. Coffey Cakes - Joni Mitchell tunes are nice to "whistle" while storming the castles. ;+P

    You are right on regarding the daily microscopic battles going on in our respective bodies. That is why my inclination, as I told yet another Onc today (who BTW, was incredulous that I had not started on a regimen of Tamoxifen), was to limit the amount of synthetic drugs dumped into my system and focus instead on (re)modulating my own "5 foot 1 inch" macrocosym.