Tired of seeing pink? You're not alone, says Dr. Barron Lerner in a piece on Pink Ribbon Fatigue in the New York Times. While cancer awareness campaigns have heightened awareness about this condition, lessened women's fear of the disease and helped raise needed funds for research and care, some are finding the whole pink thing a bit too much.
But for more than 160,000 women living in the U.S. with advanced, stage IV breast cancer, the situation is not one they can turn off on their TV sets, or avoid by skipping out from pink-decorated malls: they're living and coping with the metastatic form of the disease, active treatments, side effects and, still, no known cure. Their outlook is tempered, maybe best portrayed in a spectrum of gray.
In October, 2009, the U.S. Senate and House voted to support the designation of October 13 as a National Metastatic Breast Cancer Awareness Day. The point of those proclamations was to draw attention to the needs of the metastatic breast cancer community.
"We want people to know we exist, that we're still alive," says Ellen Moskowitz, president of the Metastatic Breast Cancer Network. The day is not about general cancer awareness; it's about acknowledging the distinct needs of people who have the advanced, incurable form of breast cancer. "We've been hidden in closets," she says.
Sharon Heimerl of East Bethel, MN, has experienced both sides of the breast cancer experience: five years after she completed her treatments for in 1999, she thought she was cancer-free. She's 56, with a son in the marines, a daughter and three grandchildren. When her disease came back last year, in the form of painful, bony metastases, her outlook on life changed.
"Well, whoop-de-do," she told me. "I don't think there's much to celebrate about having terminal, stage IV breast cancer." Still, she's optimistic in trying new treatments. "I'm going to be one of the two percent who make it out in the tail end of the curve," she says.
Kathy Albain, M.D., an oncologist and professor at Loyola University Chicago, has performed research and cared for women with metastatic breast cancer since the mid-1980s. "I applaud the emphasis on this population of survivors because the public doesn't usually have their needs on their radar screen, unlike women diagnosed with early stage disease," she says. Nonetheless, she's optimistic about the future.
"We're light years ahead of where we were a decade ago," she considers. "Now, women with metastatic breast cancer are living longer and better lives." There's a crucial need for more research dollars to find new treatments for these Stage IV patients.
Patients like Jennifer Bockey of Blissfield, MI, would agree. She's a 44-year-old single mother with metastatic breast cancer who works full-time and run two miles in most evenings. She's frustrated by the October awareness campaigns. "There's a perception that this is a curable disease, and it's not," she told me.
People are plenty aware of breast cancer, she considers. "Now, we need to put the money toward science and research, and not so much about awareness," she says. "It's treatable, but for people like us who live with it as a chronic condition, we want to see treatments developed that are effective and tolerable."
The prognosis for women with advanced breast cancer is highly variable, Albain emphasizes. Overall, the numbers are getting better: "Median survival for women with Stage IV disease has progressed from one, to two, and now three years on average, at least," she says. "But it depends on the individual, based on the biology of her tumor." Therapy and prognosis has to be tailored in each situation, she states.
In this context, some might ascribe the lack of research on the needs of metastatic breast cancer patients to the lack of precise information on their numbers. Some suspect the number of women living with metastatic breast cancer exceeds 160,000, now that median survival is lengthening.
"One hundred and sixty thousand is an estimate only," says Musa Mayer, an author and advocate for patients with advanced breast cancer. "Nothing more definitive is available," she said, explaining that because the NCI and SEER database record only incidence, initial treatment and mortality data, what happens in between -- in terms of recurrence and the exact number of women living with metastatic breast cancer -- is undocumented.
"It is as if these metastatic women are invisible, that they literally don't count," she indicated. "And when we don't count people's needs, we can't provide or plan for them."
The reality of metastatic breast cancer can be frightening to patients and their families who want to be positive, Moskowitz suggests. "We are definitely out of the pink spotlight. All the stories are about survivors, 'rah, rah,' who everyone applauds."
"It used to be the C-word," she says. "Nobody said they had cancer. Now it's the M-word nobody mentions. The word is metastatic."
Follow Dr. Elaine Schattner on Twitter: www.twitter.com/medicallessons
Christiane Northrup, MD: The Best Breast Test: The Promise of Thermography
David Katz, M.D.: Mammograms Before 50: Worth it?
Lisa Copen: Why Are We Expected to Be Brave in the Face of Illness?
Metastatic Breast Cancer Network's 2010 National Conference set for October 16
It might sound outlandish, but the Vital Vitamins Mixed with Other Nutrition seem able to initiate us into the world of Vitality, improving resistance to depression.
Plus, as we are all aware , taking a bath day-to day is best for improving immunity to depression as our body is also taking a breath.
2. We are living in an age of Automation , naturally so the excess diet is more likely to work against our wellness since the residues lingering in our body should act as a hot bed for all forms of germs, bacteria, virus and the likes, which I think spread to a variety of diseases.
But you cannot detect it when it is at a microscopic size. So it is easier to prevent it before you have it or can detect it. "An ounce of prevention is worth a pound of cure." Ben Franklin said that and he discovered electricity. There are many things that a person can do to prevent breast cancer like avoiding being overweight, getting exercise, drinking green tea and having a healthy diet. http://bit.ly/eco-c Even adding the spice tumeric to food can help you to prevent cancer.
You have some excellent points there. I've been doing a lot of research as well on how to prevent many different chronic diseases including cancer and I keep finding one common theme... eat a nutrient rich, whole foods, plant-based diet that is low in fat and sodium. It has been shown time and time again to ward off so much suffering.
Great post!
Dustin Rudolph
www.PursueAHealthyYou.com
meditation ...
however necessary breast cancer awareness is the catholic church approach of commisserating with suffering
read " answer to cancer " Hari Sharma MD professor emeritus
consult with Nancy Lonsdorf MD http://ayurveda-ayurvedic.net/nancy_lonsdorf.html
the herbal rasayana MAV amrit kalash dramatically reduces noxious toxious side effects of chemo
the best prevention is tm.org and MAV
http://pursueahealthyyou.blogspot.com/2010/10/new-approach-to-fighting-cancer.html
Dustin Rudolph
www.PursueAHealthyYou.com
To all those amazing women out there, I applaud your courage and ache for your fight. Hang in there my sisters.
Jackie Fox
Author, From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer