Another "Lens" in Which to View the Dreaded "PINKTOBERFEST"

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By: Dawn

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink. Why would I want to put all this effort into writing a blog entry just to have it unreadable? Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren’t that happy. Sure, it’s not the death sentence other forms of cancer are. Let’s face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn’t “if” but “when.” I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don’t know what the one year survival rate is, but it’s not great. Another of my friends was told she’d live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?

For starters, when we talk about “surviving” with breast cancer, we speak of surviving five years. The term is “the five year survival rate.”

Pardon me for not being too chipper about that. I’m coming up on my second cancerversary.

If a woman happens to be Hispanic, which I am not, she’s more likely than other women to get aggressive breast cancers and die from breast cancer . Were you aware of that?

I’ve heard people, endurers as well as the non-effected, say, “At least the tumor is estrogen (or progesterone) receptive. There’s a pill for that.” Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication . In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn’t aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It’s called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, “you just do herceptin treatments for the rest of your life.” Well, that’s probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn’t work, either. And, the woman dies.

We are also all aware that breast cancer is curable. And that’s true. To an extent. Most women don’t die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we’d be fine. Cut it out, chop ‘em off, radiate ‘em. End of story. However, that’s not how breast cancer works. There’s never, ever a guarantee that even the smallest spot of cancer hasn’t sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.

Many of us are aware that there are things we can do to “prevent” breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn’t anything that “prevents” breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not “preventative” as we’d like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person’s life time risk of getting breast cancer. It’s not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn’t have to still screen and hope for the best. Many women aren’t aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as “preventative” had the gall to ask me if I had a family history, as if…whatever. She said she was counting on nursing to “protect” her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.

Let’s talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let’s face it, when you are in your late 60s or your 70s or older, “long term” takes on a whole different meaning than when you are in your 20s or 30s or 40s.

And none of this takes into account the negative effects of cancer treatment on a person’s general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There’s a double-edged sword. Better yet, there’s the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, “sometimes fatal.” Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn’t that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!

There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don’t think most people are aware of this. That to “survive” does not mean to “get better” and that life isn’t always pink and rosy are not parts of awareness.

Yet, we are aware that there’s a “cure” out there. In fact, when it comes to breast cancer and pink, “awareness” seems to be synonymous with “cure.” However, one would think that if an organization were really, truly concerned about a “cure” their money and focus would go to what…awareness/education? or research? prevention or parties? I’d like my money to go to research and prevention. Check out these charts to see where it really goes.

Just so you are aware.

~Desiderata

Awarenes

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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!