If you’re following blogs in the breast cancer world you’ll probably know that five of my fellow bloggers recently attended the National Breast Cancer Coalition (NBCC) advocacy conference in Washington DC, along with 700 women and men. Out there in cyber space I have friends, including these five women, who are writing about breast cancer culture, sharing their opinions and challenging the status quo. I am very grateful to them for that and for their support, because I am also very opinionated about breast cancer myself, and it can feel fairly isolating for me here in the UK. And I am extremely grateful that my friends have written about the conference and have shared what they’ve been finding out.
“I believe it’s time for a change.”
The Accidental Amazon reported back from her hotel room telling us exactly why she is at the conference:
“I am here because all the pink product marketing and all the awareness groups and all the gazillions of dollars spent on research have scarcely nudged the real bottom line for breast cancer — namely, mortality and incidence.”
And she reminds us that we don’t have to accept the status quo:
“I am here not to behave myself. I am here because well-behaved women rarely make history”.
“Imagine if we acknowledged the truth about breast cancer and paid as much attention to the DEAD, as we do to celebrating the so-called achievements of the mainstream breast cancer movement at all those pink parties and pink events…”
Katie at Uneasy Pink has written several pieces about the conference, and in this piece reminds us how little we actually know about breast cancer:
“We should be scared. We should be angry too. All of the billions of dollars we’ve given in good faith and we still don’t know who is going to get metastatic breast cancer that accounts for 90% of all cancer-related deaths.”
The National Breast Cancer Coalition (NBCC) has boldly set a deadline to end breast cancer by 1 January 2020. Jody Schoger was initially skeptical about this deadline but has come back from the conference on a mission to ‘seek and destroy’ breast cancer.
NBCC’s moving short film about the work they do says:
‘We are giving up on hope. For decades we’ve been fighting breast cancer with hope. For decades the lives of our daughters, mothers, friends, have been in the hands of hope. It isn’t working.’
Hope isn’t working. I’ve often wondered what ‘hope’ means to a cancer patient. I mean, of course I have ‘hoped’ that my treatment will be successful, I have ‘hoped’ to finish my surgery, I have ‘hoped’ to be free from pain; but hope as a wider concept has felt a bit empty for me. Along with the pink ribbons and the popular culture of breast cancer, I don’t think hope will change the reality of breast cancer or eradicate it.
Extract from Being Sarah:
I hear the pink brigade defend their stance by saying they are giving hope for newly diagnosed women. Hope? I don’t want hope. I want determination, courage, spark and, most of all, I want facts. Tell me about this disease. Tell me the causes. Help me stop a recurrence. Show me the results so I can decide what treatment I want. Don’t give me a pink t-shirt, a pink product, a pink anything, I do not want anything pink. I feel that this whole pink thing will push aside any serious debate about options or a real look at the causes of breast cancer. And I feel it forces me to be an obedient patient, accepting of this ‘nice’ pink association of breast cancer. No. I won’t do that. Not that I won’t, but I can’t.
So, when I read what these five women are writing, you know, it does give me some hope. Some hope that we’re starting to change the conversation. That we’re challenging the status quo. That I’m not a lone voice wondering if anyone can hear me. That I’m not just ranting to myself. So a big thanks Gayle, Kathi, Anna, Katy and Jody.
And just to finish, for those of you who like the information behind the facts here’s some research. The following statements come from the report produced by National Breast Cancer Coalition (NBCC) – Ending Breast Cancer: A Baseline Status Report. The following statements appear on pages 18 and 19 in the section on ‘Mortality and Survival’ – the red highlights are mine. Please see the full report for the references to the statistics.
Despite fluctuations in breast cancer incidence, and dramatic increases in the use of mammography, there has not been a significant change in the rate of breast cancer deaths, or breast cancer mortality, over time. Between 1975 and 1990, the mortality rate increased by 0.4% annually, but began decreasing in 1990, at rates of 1.8%, 3.3%, and 1.9% between 1990-1995, 1995-1998, and 1998-2006, respectively. The reason for the slight decrease in mortality during the late 1990s, which was greatest among white women, is subject to debate among investigators. Many believe that some of the decrease in breast cancer mortality may be due to improved treatments, rather than any shift to earlier detection. A 2010 study from Norway demonstrated that the majority of improvements in mortality after the introduction of a screening program were because of the increased focus on the disease which led to prompt attention to lumps, and improvements in multidisciplinary treatments and treatment teams, rather than increases in screening itself.
There is also belief that the decrease in breast cancer mortality, as well as both the recent decline in breast cancer incidence, and the sharp decline, particularly in women aged 50-69 between 2002 and 2003, are likely due in part to decreased use of hormone replacement therapy following the results of the Women’s Health Initiative (WHI) randomized trial in 2002. After 5.2 years of follow-up of healthy postmenopausal women in the WHI trial of estrogen plus progestin versus placebo, the researchers reported a 26% increased risk of breast cancer in women taking estrogen plus progestin.
Breast cancer survival statistics, particularly five-year survival data, do not portray the impact of breast cancer, nor the progress or lack of progress over time, as accurately as mortality statistics. Survival statistics are often used by policymakers, advocates, and the media to make the case for broad-based and routine mammography screening for women, despite the lack of evidence that screening has led to any significant decrease in breast cancer mortality.
NCI data show that five-year breast cancer survival is 98% for localized disease, 84% for regional disease, and 23% for distant-stage disease, and this is often used to encourage women to get regular screenings to catch their cancers before they are at later stages. However, this is misleading. There is no evidence that the screening tools we currently have prevent later stage diagnoses. The false assumptions are that all breast cancers are the same, that they all can be caught early with the tools we currently have, and that catching a breast cancer early prevents eventual spread or metastasis of the cancer. These were the same assumptions made about breast cancer several decades ago when mammography screening was first introduced, but we have since learned that breast cancers are not all the same, and that some breast cancers can be caught “early” and still be life-threatening after treatment. Some breast cancers grow slowly and are found by mammograms and treated, but never would have been life-threatening. Still other breast tumors are fast-growing “interval” cancers and are detected in between regular mammography screenings.
An estimated 20% to 30% of women will have a recurrence of their disease, and may go on to die of the disease, but are included as survivors in the five-year survival statistics. Between one-half and two-thirds of American women diagnosed with Stage II and Stage III breast cancer will develop metastatic disease within five years of diagnosis, though they may still be alive and considered “survivors” at five years after their initial diagnosis. We still do not know how to prevent recurrence and metastasis or how many of the women reported to have survived five years will go on to recur.
Convincing enough? Do you see now why we are scared, angry and why we won’t be well behaved or obedient? That’s why we’re giving up on hope.