Giving up on hope

Changing the conversation...

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.

You can read some background to the conference from Gayle Sulik, author of Pink Ribbon Blues, who says:

“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”.

And, recently voted our favourite disruptive breast cancer blogger, Anna Rachnel at The Cancer Culture Chronicles, writes:

“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.

33 thoughts on “Giving up on hope

  1. WOW. Sarah, this posting is so powerful. The bloggers you discuss are all awesome and tell it like it is.

    Your voice is making such an impact in the world. And the NBCC is also telling it like it is. We do have reason to be scared if we don’t find a cure for breast cancer soon.

  2. Wonderful post!
    Now imagine how I feel as an ovarian cancer survivor. We don’t have a screening test, our 5 year survival rate is < 30% for late stage diagnosis, and we are almost guaranteed a recurrence -it is just a matter of when .

    I am please with this new initial because research on breast cancer may lead to advances in ovarian cancer research especially for those with BRCA1 & 2 mutations.

  3. Powerful post Sarah! Thank you for stepping into the mud puddle. I am also a young(ish) “rebellious” breast cancer survivor. I wont be quiet about how our society pushes a body image on us that is not applicable to our post-cancer selves. We gloss over the repercussions of breast cancer on our psyche, instead choosing another false image of femininity (pink everything) to cover up our loss. I also do not participate in the Komen-type events because they seem to have turned fundraising breast cancer into a cheer-leading event instead of a search and destroy mission. There was nothing pink ribbon-y about my cancer – treatment was brutal, violent and difficult physically and emotionally. We are warriors, lets act like it instead of hiding behind the passive concept of “HOPE”. I will make sure I do my part to find a way to keep my daughter from experiencing this, thank you for doing your part yours.

  4. Sarah,
    Thank you for this ‘full-bodied’ post containing so much info. Hope is such an intangible thing that means different things to different people. I don’t want to take away anyone’s hope or stop hoping myself, but I want so much MORE. I want a better kind of hope. I do think this conversation is shifting. Thank you for your voice in all this, and you are not isolated, not in the ways that matter anyway. Here’s to meaningful hope, not the fake pink kind.

  5. You are not a lone voice, Sarah! I wish you had been able to join us at the conference. It was heartening to hear panelists go beneath the hype to give a real portrait of breast cancer along with evidence and information about the barriers to progress. Removing the barriers to progress requires changing the conversation. That is exactly what we’re doing. I’m glad you’re with us, even though we’re separated by an ocean. I love how the virtual world gives us a chance to flatten time and space. Now…we’ve got more work to do!

  6. Although I’m not a pink hater, I applaud all those who are pushing for the cure for breast cancer.

    I thought I was the only one that didn’t have a bubbly view of breast cancer treatments and survival. It feels like there is a huge silent push for survivors to just suck it up and move on with whatever they’re dealt with. Take the chemo, take the surgery, take the radiation, don’t complain and “you’ll be just fine.” To act otherwise means you’re not “strong.” ugh! I wish the general public would realize it’s Komen for the Cure not Komen for the Cured. There are still women dying from breast cancer.

    Thanks Sarah and all you ladies for speaking out and bringing to light real issues and facts. Progress…that sounds wonderful!

    • Hi prettygirllost, thanks for reading and commenting. I completely relate to your feelings of ‘being the only one that didn’t have a bubbly view’ – but as you can see from the comments here there are many of us who are now prepared to start changing the conversation. Please join in!

  7. So well informed, powerful and critical! Yes we all need to make sure the conversation is changed, and that the volume turned up high. Big shouts from this side of the globe

  8. What a great post Sarah and isn’t it wonderful to know that no matter where we are in the world, we can be connected online with those voices that resonate the most with ours!

  9. the five year survival rates don’t tell us that much.
    my mother was diagnosed at stage one.At five years she was counted as a survivor,then
    she died two years later from brain mets

    thanks for bringing this conversation to people’s attention,for speaking up loud and clear

  10. I don’t consider myself an angry or combative person, so I have to admit I’ve been turned off by a lot of the anti-pink blogs I’ve been reading. My blog is all about hope because as a survivor of metastatic cancer, it’s one of the few things I can hold on to. So my focus has been on sharing hope that healing can happen and how we can take care of ourselves in body, mind and spirit so we can beat the odds.

    However, I’ve been looking more closely at your blogs and am seeing the good you are doing. I can’t be that person fighting because frankly I’m just focusing on being here for as long as I can for my daughter and husband. But I’m glad you are out there fighting for us.

    I was one of those people diagnosed fairly early, but it came back 5 years later as metastatic. We need funding not only to prevent metastastes but cure them once they have spread. That is my hope and perhaps if you all keep lighting a fire under those who fund research, we can meet the 2020 deadline. I plan to be there to celebrate when they do.

    • Thanks Tami for reading and for your comment. I understand how difficult it is for all women who’ve had a breast cancer diagnosis, whatever stage they are at, to balance their lives between various commitments. As you can see from my blog I spend large parts of my life enjoying nature, because I enjoy it enormously and also because I am free from worries when I do that. I also spend other time writing about prevention, about challenging the status quo, about changing the conversation on breast cancer that hasn’t changed for too long and we’re not seeing breast cancer mortality change very much. That does make me angry, so I’m doing what I can to raise awareness of that so that it can change in the future.
      When it comes to funding you are right – yes we do need more research into both prevention of metastatic breast cancer and treatment for it; funding is there, but not enough is used for these particular areas. If I become stage IV in the future I too would like to ‘hope’ that there are actually treatments that would stop me dying of breast cancer, or at least extend my life.
      Wishing you continued good health, all best Sarah.

  11. How did I forget to comment on this wonderful and powerful post??? The conference was an incredible validation of everything we cancer rebels have been talking about in the blogosphere for quite some time now. It was also a somewhat sobering reminder of how much work lies ahead to really change the conversation about breast cancer in the hope that the nbcc’s mission will yield the promised results. But I’ve never been one to refuse a challenge, and this is certainly a case where mine and so many others lives depend on our uniting as a collective voice to see this thing through. Let’s do this. Now.

  12. I just want to wake-up and say ok .. I went threw it but my two daughters don’t have to. People don’t realise the anger is not just for ourselves, but tho’s that will join this treadmill of if’s,but’s and maybe’s. Whilst you hear the words, ‘Oh it’s just a bit of fun.’The world of BC is not fun…. I have had to seriously rethink all what I thought I knew into I don’t know half of it. I admire you ladies that sift threw the fact from fiction.. keep up the good work

    • Thank you Sarah. We all know BC is not fun, we just need to get people to listen to our authentic narratives, so things will change, so the world will be different for your daughters. I ‘hope’ so.

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