Awareness Revisited

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October is Breast Cancer Awareness Month and the Pink Ribbons are unfurling once again. A year ago today, I wrote and posted the following  blog. I reread it again...and found that regrettably not much has changed, save for my own personal circumstance. That is, my cancer has advanced. My awareness IQ has been broadened to understand that the proliferation rate of breast cancer is increasing. And, profoundly, despite Susan G. Komen - known as the "largest" funder of breast cancer research, spent a whopping[?] 23.5% of total revenue raised on research for the "cure" in 2007; and an impressive [?] 26.7% in 2008; and a staggering[?] 20.2% in 2009; despite Susan G. Komen's total revenues for 2010 reportedly at $311,855,544.00; and despite spending over $22M in salaries. . . 

The American Cancer Society's most recent estimates for breast cancer in the United States are for 2011:

• About 230,480 new cases of invasive breast cancer in women
• About 57,650 new cases of carcinoma in situ (CIS) will be found (CIS is non-invasive and is the earliest form of breast cancer).
• About 39,520 deaths from breast cancer (women)

Breast cancer is the most common cancer among women in the United States, other than skin cancer. It is the second leading cause of cancer death in women, after lung cancer.

The chance of a woman having invasive breast cancer some time during her life is a little less than 1 in 8. The chance of dying from breast cancer is about 1 in 35. Breast cancer death rates have been going down. [REALLY? not if you look at 2007 figures from the CDC...see below] Right now there are more than 2½ million breast cancer survivors in the United States.

As compared to 2009, when 192,370 new cases of invasive breast cancer were diagnosed among women, as well as an estimated 62,280 additional cases of in situ breast cancer...
. . .

As compared to 2007

• 202,964 women in the United States were diagnosed with breast cancer.*†
• 40,598 women in the United States died from breast cancer.*†

*Incidence counts cover approximately 99% of the U.S. population. Death counts cover 100% of the U.S. population. Use caution in comparing incidence and death counts.

†Source: U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2007 Incidence and Mortality Web-based Report. Atlanta (GA): Department of Health and Human Services, Centers for Disease Control and Prevention, and National Cancer Institute; 2010. Available at: http://www.cdc.gov/uscs.

Last Revised: 06/20/2011

So again, I continue to ask the question...what does AWARENESS...really mean? I have added a few updates for 2011.

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 15 years prior to my initial diagnosis in 2009 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!!!!)

But it wasn't until I was blind-sided with a diagnosis of breast cancer in the summer of 2009 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 prior to my own personal diagnosis...acquired through my "pink" involvement ever even hinted at the depths of my naiveté.

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 the risk for women under 50 years of age in developing cancer was and is increasing each year

I did not know that breast cancer specialists have not figured out how to "write a new textbook" for the under 50 crowd

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 could develop breast cancer

Metastases in lymph

I did not know about sentinel node biopsies

I did not know about drainage tubes ("d-bombs")

I did not know about tram flaps

I did not know about the severity of long term effects of chemotherapy and radiation

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)

Metastases in brain

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 Mamma Print 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 buildup estrogen in the body is toxic

I did not know that there is tangible link between iodine deficiency and breast cancer

I did not know about E-cadherin and protein tests and saliva tests and hormonal balancing

Metastases in liver

I did not know that breast cancer research is focused on early stage breast cancer and not advanced stage & metastatic breast cancer

I did not know that women don't die of breast cancer, per se, if only the cancer stayed in the breast

I did not know that women die of breast cancer because because of the multitude of sites where it can metastasize

I did not know that a full radical mastectomy is not a guarantee against breast cancer metastasizing

I did not know about mouth thrushes, or lymphedema, or neuropathy

Metastases in bones

I did not know that an acidic imbalance in our body chemistry gives a fertile ground for cancer cells to proliferate

I did not know that when the CDC and other entities cite statistics on death by breast cancer it does not include those women who died from the complications and side effects of treatment (heart disease, heart failure, pulmonary disease, stroke, uterine cancer, stomach cancer, cervical cancer, etc.

and so it continues to go on, . . . and

I do know now what an insidious and pervasive industry breast cancer has generated in the U.S.

I do know now the difference between a "CURE" and a "PROTOCOL".

I do know now that the med pros 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 do know now that even though 100s of millions are raised for research, awareness, marketing and merchandising that we are still no closer to a cure.

I do know now that some of the pharmaceutical companies that produce & distribute cancer treatment drugs consciously include cancer-causing carcinogens in the household products and foods they heavily market and consume as a society...check out all the variants of benzene products....they are in every commercial sunscreen and most store-brand and high-end cosmetics.

I do know now that even Susan G. Komen is heavily invested in contributing to the proliferation of breast cancer...check out their requisitioned perfume, PROMISE ME, that contains a well-known hormone disrupter and neurotoxicant.

I do know now that I have to continue to be my own "lay expert" in order to direct the discussion regarding my own health and treatment.

October is Breast Cancer Awareness Month. And, I am a little more aware now than I was in October of 2009 -- and worlds beyond my breast cancer IQ when I too was a Pink Ribbon accomplice. I am also excruciatingly aware that my continued search to be enlightened, educated ... aware ... has nothing to do with the flying of little Pink Ribbons and all its accouterments.

Tie a ribbon...around my ...??? or "Awareness": Are you color blind yet?

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Talk is Cheap - Ribbons, Rallies & Campaigns...now that is profitable!

Pink Ribbon :
Meaning: Most commonly associated with breast cancer awareness, this ribbon is also a symbol for birth parents, and childhood cancer awareness (alternative color: light blue)

Yellow Ribbon :
Meaning: We've all seen this symbol used to support our troops, but it is also a symbol for MIA/POW, suicide prevention, adoptive parents, amber alerts, bladder cancer, spina bifida, endometriosis, and a general symbol for hope. A yellow ribbon with a heart is used to represent the survivors left behind after a suicide.

Pale Yellow Ribbon :
Meaning: This color is a symbol of spina bifida

Red Ribbon :
Meaning: Most commonly associated with the fight against AIDS and HIV, this ribbon also is a symbol for heart disease, stroke, substance abuse, MADD, DARE, Epidermolysis Bullosa, Reflex Sympathetic Dystrophy

Burgundy Ribbon :
Meaning: This color is a symbol of brain aneurysm, Cesarean section (worn upside down), headaches, hemangioma, vascular malformation, hospice care, multiple myeloma, William's syndrome, Thrombophilia, Antiphospholid Antibody Syndrome, and adults with disabilities

Purple Ribbon :
Meaning: This color is a symbol of pancreatic cancer, testicular cancer, thyroid cancer, domestic violence, ADD, alzheimer's, religious tolerance, animal abuse, the victims of 9/11 including the police and firefighters, Crohn's disease and colitis, cystic fibrosis, lupus, leimyosarcoma, and fibromyalgia

Lavender Ribbon :
Meaning: This color is a symbol for general cancer awareness. It can also be a symbol for epilepsy, and rett syndrome

Periwinkle Ribbon :
Meaning: This color is a symbol of eating disorders and pulmonary hypertension

Blue Ribbon :
Meaning: This color is a symbol of drunk driving, child abuse, Osteogenesis Imperfecta (OI), the victims of hurricane Katrina, dystonia, acute respiratory distress syndrome (ARDS), alopecia, Education, Epstein-Barr Virus, Save the Music, colon cancer (alternative ribbon color: brown), colorectal cancer (alternative ribbon color: brown), and anti-tobacco - particularly anti-second hand smoke (in Canada; alternative ribbon color: brown), I Love Clean Air/ILCA Campaign (Japan)

Dark Blue Ribbon :
Meaning: This color is a symbol of arthritis, child abuse prevention, victim's rights, free speech, water quality, and water safety

Light Blue Ribbon :
Meaning: This color is a symbol of childhood cancer (alternative color: pink), prostate cancer, Trisomy 18, and scleroderma

Teal Ribbon :
Meaning: This color is a symbol for ovarian, cervical, and uterine cancers as well as sexual assault, polycystic ovarian syndrome, and tsunami victims

Green Ribbon :
Meaning: This color is a symbol of childhood depression, missing children, open records for adoptees, environmental concerns, kidney cancer, tissue/organ donation, homeopathy, and worker and driving safety

Orange Ribbon :
Meaning: This color is a symbol of leukemia, hunger, cultural diversity, humane treatment of animals, and self-injury awareness

White Ribbon :
Meaning: This color is a symbol of innocence, victims of terrorism, violence against women, peace, right to life, bone cancer, adoptees, and retinal blastoma

Pearl Ribbon :
Meaning: This color is a symbol for emphysema, lung cancer, mesothelioma, and multiple sclerosis

Black Ribbon :
Meaning: This color is a symbol of mourning, melanoma, and gang prevention

Brown Ribbon :
Meaning: This color is an anti-tobacco symbol as well as a symbol of colon cancer (alternative ribbon color: blue), colorectal cancer (alternative ribbon color: blue)

Grey Ribbon :
Meaning: This color is a symbol of diabetes, asthma, and brain cancer

Silver Ribbon :
Meaning: This color is a symbol for children with disabilities, Parkinson's disease, and mental illnesses such as severe depression, bipolar disorder, schizophrenia, and anxiety disorders.

Gold Ribbon :
Meaning: This color is a symbol for childhood cancer

Jigsaw Puzzle Ribbon:
Meaning: This style of ribbon is a symbol for autism

Lace Ribbon:
Meaning: This style of ribbon is a symbol for osteoporosis

Pink and Blue Ribbon:
Meaning: This style of ribbon is a symbol for miscarriage, stillbirth, and infant death due to SIDS or other causes

We are being "clockwork oranged" with "awareness." Too many "causes" to be "aware" of with little substance forthcoming or sustained. Too many "baubles" on the retail shelf designed to manipulate our "concern" into retail therapy. Far far far too many awareness weeks, months, days...lifetimes. Eyes glaze over, brain shuts down, and all we are aware of is how fatigued we are about the myriad of ways we can die.

Personally, I am tired of the platitudes and pandering. Pom poms, feel-good rallies, and "Promises." It is time that the cancer industry put its dollars -- all of the raised dollars, into achieving tangible results. And less into the next profit-breaking marketing campaign. 

Breaking Pink "Promises"

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Carcinogens and Pinktoberfest...strange, yet profitalbe bedfellows.  ~TC

 

We’ll keep saying it: less talk, more action

Posted by caitlin on September 28, 2011 – 6:19 pm

By Karuna Jaggar, Executive Director, Breast Cancer Action

Two days after Breast Cancer Action publicly announced the findings of independent lab testing of Komen’s commissioned perfume Promise Me, we want to thank BCAction members and supporters who have sent almost 1,200 letters to Komen urging them to recall the product.

Instead of directly addressing consumer concerns about the ingredients in the perfume, Komen has responded to our action with more talk; but for all their explanations, they have yet to address any of our concerns.

Komen said they will not recall the product nor will they assure us that they will take the highest standards of precaution when it comes to women’s health. They did, however, talk:

• about the money the perfume will raise, noting a minimum of $1M to be donated by TPR Holdings;
• about the burden of responsibility for health safety resting with “intelligent consumers who make informed decisions about the use of products based on evidence;”
• about how much they care about research and prevention;
• about their intention to continue selling Promise Me.

Komen’s talk poses more questions than it answers:

• In highlighting the money raised by the perfume, is Komen suggesting that regardless of any health risks, the ends justify the means?
• How can consumers make informed decisions about Promise Me when Komen hasn’t publicly disclosed the list of ingredients on the product label?
• Is Komen really suggesting “buyer beware” by putting the burden on “intelligent consumers” to make “informed decisions”?
• How can Komen’s Medical and Scientific Affairs team conclude that it is okay to include Toluene in Promise Me when the International Fragrance Association bans its use?
• The FDA has notorious loopholes in its regulatory policies. In citing FDA guidelines as a resource on the safety of cosmetics and fragrance, is Komen unaware of the work by several national breast cancer organizations, many working in coalition with the Campaign for Safe Cosmetics, to close these gaping regulatory holes?
• If Komen is committed to funding research on causes and prevention of breast cancer, why do they allocate less than 4% of the $1.9 billion (yes, billion) they have raised to these areas?
• And finally, if Komen cares deeply about women’s health, about the prevention and cause of breast cancer, why won’t they commit to taking every precaution to ensure that the products they sell and endorse are safe by signing the Pledge to Prevent Pinkwashing?

Komen is asking women to trust their good intentions. In essence, Komen is asking us to look at what they say, not at what they do. To which we can only reply: Action speaks louder than pink. Komen talks a good line about “ending breast cancer” and ”funding research on prevention.” Komen has an opportunity to talk less and act more: recall Promise Me and sign the Pledge to Prevent Pinkwashing. It’s that simple.