Re: Metastatic Breast Cancer and Nancy Brinker
 

CoolBreeze,
You zeroed in on it. I know doctors in and around her circle. I thought about posting it, weighing their confidentiality in telling me vs. patients measuring themselves against EE as a guage (to a certain degree) and decided I will post. I'm sorry I can't divulge my sources, but I can assure you, it's accurate.

Hope you are feeling well, and will look forward to your continued NED posts.
Karen

Re: Metastatic Breast Cancer and Nancy Brinker
 

RACHELHMD
Don't apologise to me for using "yet" after not being stage IV. I read it as a gracious way of saying "There but for the grace of God go I"-I was brought up a Catholic and some things stay with you! You actually made me feel less stigmatised so I am grateful to you for your consideration of those of us with Stage IV disease.
I don't think your use of "yet' has made it at all more likely you will get mets. I am very hopeful that you will stay cancer-free but I very much appreciate your grace and support.
Amy, I thought your contribution was very measured and open minded.People do die from this disease even when they take advantage of every treatment that is available to them. I don't really see the point of using high profile people as role models either as inspiration or as cautionary tales. Breast Cancer is heterogenous and even those of us with very similar tumour profiles (on the features that we currently know about and can be characterised) vary in our response to treatments. I believe we all deal with this disease in the best way we can, and it isn't always the same way. While we are probably nowhere near a cure there are a lot of hopeful treatments on the horizon. Bring 'em on!
Trish

Re: Metastatic Breast Cancer and Nancy Brinker
 

Trish,
Wonderful post. So forward, so truthful.
Karen

Re: Metastatic Breast Cancer and Nancy Brinker
 

Thank you, everyone, for your contributions to this conversation.

I've been thinking about how everyone has her/his own coping mechanisms and ways of grappling with difficult situations. There's no "right" or "wrong" way. We have different personalities, differing levels of support from others, different strategies for taking care of ourselves, and, yes, Trish, different diseases. I love you all, and I'm happy we have each other to talk to.

I think some of the "push back" that Komen has been getting may be helping steer the conversation in helpful ways. The article that Nancy Brinker recently published seems, to me, to be acknowledging some of the other aspects of breast cancer besides the pink, fluffy ones. Here's a link to it: http://www.usatoday.com/news/opinion...men/50815702/1

She calls herself a breast cancer expert, and while I don't challenge her right to call herself that, it seems to be part of our "celebrity" culture. People appoint themselves thought leaders on various subjects, and somehow they get a lot of air time. It seems to me that sometimes they are simply people who are good at raising money.

Money is not unimportant, and being able to run a nonprofit well is challenging and admirable. But I've seen Nancy Brinker in many settings, and she keeps saying the best thing we have is mammography, and pushing for more of it, and she keeps talking about that 98% five year survival rate for early stage breast cancer. To me it looks like she's letting people assume that the situation is better than it really is. I certainly had no idea, before I was diagnosed, how awful even a "successful" course of breast cancer treatment can be. I've learned so much from all of you.

Of course funders need to feel good about their donations. But I have a problem with trying to solve public health problems with "free market" techniques. It doesn't work as well as a concerted, centrally coordinated, truly public effort would. To put humans on the moon we created NASA and got it done in 10 years. The "war on cancer" has been going on for 40 years, and it's a hodgepodge of research groups, for-profit companies, universities, and even the U.S. Department of Defense. One aspect of the "privatization" that should interest many of us is that Taxol was discovered by publicly funded research (National Institutes of Health), and then the rights were sold to a private company, Bristol Meyers Squibb, which makes a huge amount of money on it. http://www.cptech.org/ip/health/taxol/

I don't think anyone deliberately sets out to make an "industry" out of a horrible disease. I don't think anyone has deliberately decided to make breast cancer a "chronic condition." But the financial incentives for doing that as opposed to finding a way to prevent or definitively cure it are stunning.

GE is doing a survey of women for suggestions of how to make it better. I told them I'd prefer that they put money directly into prevention and cure research. Of course, GE makes mammography equipment. This article repeats the 98% five year survival meme, of course: http://www.healthymagination.com/blo...of-the-future/

Here's a link to a blog post by Gayle Sulik that provides food for thought on the breast cancer "business:" http://gaylesulik.com/2011/10/19-birth-of-the-perpetual-fundraising-industry/

Re: Metastatic Breast Cancer and Nancy Brinker
 

Sir/Madam:I had a mtmeactosy in January 2010 at the age of almost 82 (Feb. 1.) I had been healthy most of my life. I only missed two days of teaching school over a 20 year period. We only ate sweets away from home. I didn;t make a practice of pie and cake baking.A health problem of weakness began in the late seventies. It was occasionally and maybe once a year happening. My doctor suggested eating a deli meat when it happened. By 1996, it began to happen more intense. I made three trips to the ER over a period of perhaps three years, but nothing showed up to be wrong. I decided it was low blood sugar which proved wrong. For three years I walked three miles a day until in the summer of '07 when I began to get weak while walking. By the summer of '08, the doctor wanted to know what I ate. He found that I didn't have protein for breakfast. So I started eating close to 20 grams of protein each meal. This stopped the weakness.When I found my cancer, I couldn't believe it as we measured our food that we ate. Yet we did gain weight with the protein diet, but we ate carbs, too. I wondered if the protein caused the cancer. My mom and dad ate the same foods which were raised on a farm without sraying fpr pesticides. My dad died with prostate cancer and my mom died with diabetes. Is food the problem?

Re: Metastatic Breast Cancer and Nancy Brinker
 

Just found this thread. WOW! I never asked for cancer but I'm glad mine was HER-2+ just so I could know and be inspired by you. I wish I had more time (I'm at work, last day of the month, etc.) to write an extensive post today but I'll try to do that later. I could go on and on about how these breast cancer organizations upset me. When I was diagnosed and went on disability to focus on getting well, I decided I was going to be an advocate and try to do something about it. I joined a research advocacy group to try to understand the research going on and even went on a panel at the DoD to review breast cancer research grants.

I remember quite a few seminars on research going on how to understand the metastatic process. Unfortunately, there seemed to be many more grants I reviewed on environmental causes of breast cancer or on basic fundamental research to understand cellular pathways. I think the more advocates we have out there on these panels trying to push the research agenda, the more we'll get our message across to the researchers.

I think our advocacy needs to be at the research level (Yes, Nancy, in the lab!) rather than at the Komen level if you know what I mean. I too am angry at the pinketization of breast cancer and agree that there's nothing pink or rosy about it. I also think that the breast cancer community needs to grow up and face issues head on - like, for example, discussing death among us regardless of stage.

I have an example of something that upset me a couple of months ago in the breast cancer community. A local state senator here in CA tried to pass a bill forcing the radiology reports to contain information about breast density and forcing the radiologists to discuss this with the patients. I supported the bill and wrote to my fellow advocates asking them to provide their support, but I was perplexed that a lot of them thought that breast density information shouldn't be something that the government should force the doctors to discuss. I think people put their political agenda (e.g., Komen and the Planned Parenthood issue recently) ahead of the patients.

I recommend you all read the book "How We Do Harm" written by Dr. Otis Brawley of the ACS. He talks about the disparities in cancer care in this country starting his book with a story of a woman in Atlanta who came to the hospital with her breast in a ziploc bag. She had had an auto-mastectomy - basically her breast fell off because her tumor had gotten so large that it cut off all vessels and support for the tissue. She didn't have insurance and was afraid to go to the doctors, having lived with the tumor in her breast for 9 years before her breast fell out. Where is detection for these women? Where is the Komen outreach for these women? These women are still out there, dying of their cancers. We recently saw two brilliant young women - Rachel Moro and Susan Niebur - die of their cancers. They were strong advocates online trying to support more research into metastatic cancers. The money needs to go to the research, not to push political agendas or to try to pinketize the disease.

Gotta go back to work now, but I'll try to join in the discussion later.

Re: Metastatic Breast Cancer and Nancy Brinker
 

You put it clearly and correctly when you said "the money needs to go to research, not to push political agendas or to try to pinketize the disease."
We all agree with you.
Sarah

Re: Metastatic Breast Cancer and Nancy Brinker
 

Sarah, you said it well. There is so much mor to this disease than the layman sees. I was a layman, and I thought pink was helping and made me feel so good. But now I am a part of this disease and pink is no longer the answer. Knowledge is power. I didn't want this knowledge, but I was faced with it.

Re: Metastatic Breast Cancer and Nancy Brinker
 

Hi Chem,
agree. research, research, research and a cure.
good luck and continue good health
health and happiness
love sarah

Re: Metastatic Breast Cancer and Nancy Brinker
 

Dear Ms. or Mr. Suprakash,

Most of the people on this site have breast cancer, so the risk for us is 100%. Consequently most of us don't spend a lot of time discussing risk factors. That being said, birth control pills and abortion have not been proven as risk factors.

I had zero risk factors, other than being female and living in North America. Focus on individual risk factors lets environmental causes (toxic chemicals, radiation, etc.) off the hook. It blames the victim.

Komen directors don't get larger salaries than most comparable nonprofits. In fact they're relatively small. The issue, for me, is the "hope" and "cure" rhetoric for a disease that has a 50% recurrence rate, and 40,000 deaths a year in the U.S. Most people ending up at Stage IV (metastatic breast cancer) die from it. Early detection doesn't seem to do much good. But Komen keeps deliberately citing its 98% five year survival statistic. All early detection does in most cases is increase the number of years you end up being a cancer patient.

If metastasis could be stopped or prevented, doctors could be conservative about treating primary tumors. They could just monitor them and respond if necessary. No "slash, burn and poison." It's the metastatic stage that kills, not the tumor. Yet the percentage of Komen's funds going to research has dropped steadily over the years.

GE plans to spend $1billion on making mammograms less hellish. I told them I'd prefer they put the money into research. Not gonna happen--they make mammography equipment. But I had my say.

Re: Metastatic Breast Cancer and Nancy Brinker
 

Hear, hear Amy!

Re: Metastatic Breast Cancer and Nancy Brinker
 

Amanda,

Good to hear from you! I was just thinking about you today!

Best wishes!

Re: Metastatic Breast Cancer and Nancy Brinker
 

Thanks Amy!

I was thinking of you too Amanda - nice to "see" you.
Dawn

Re: Metastatic Breast Cancer and Nancy Brinker
 

spend the money on researhc ONLY. why not give the money directly to people like Slamon and the person who came up with TDM1 (I forget his name unfortunately but he's with Immogene). Forget the pink ribbons, forget getting the word out - it's out unless you live in a cave. give it to the talented researchers that's what counts now and support the things that work that maybe won't make anyone any money!!! because I'm convinced they are out there but hey if you can't make billions, no point in making them. like alternative energy, no mega profits, no incentive. Cancer is a very profitable disease so how can we trust the pharmaceuticals to work for us??? they want to sell more drugs. yes they want to help us but cure us??? I wonder. Only governments have the incentive to end cancer and they don't have the means or support because there's too much corruption. Energy and cancer could be solved with all the money thrown at them but......is it profitable enough????

Re: Metastatic Breast Cancer and Nancy Brinker
 

Amy,

What a well written and truthful post. I couldn't agree more.

I was not diagnosed at stage IV nor was I ever (thank God) stage IV. I was diagnosed at stage 2B....went through my surgeries, chemo, herceptin and radiation and here I am, 7 years later NED! Why? Definitely not my wishful thinking or me doing everything right......(cause I don't) - I just am.

I know so many (Fighters by every sense of the word) who have lost their battle. Yes, many are surviving this disease but way too many still die from it. I pray a cure is found.

Thanks Amy for speaking out....

Mary Jo

Re: Metastatic Breast Cancer and Nancy Brinker
 

It's October again. I don't know about you but I am sick of everything pink including pink shoes on football players that later get auctioned off to fans as well as BC clothing from Ford Motor company. I am posting to this tread to raise visibility to an informative discussion last year on the state of metatastic research in case some of you missed it. Until the funding model changes to focus on understanding and stopping metatasis, very little will really change. We need to move past awareness campaigns to supporting efforts to end this disease once and forever. Ending diseases like breast cancer is the only way health care costs will ever be controlled. I have read a three week treatment of TDM-1 will cost more than $5K. Each new drug is more expensive than the last and these costs are unsustainable.

I agree with Phil that that the FDA approval process needs to be reformed but I think the govt grants for BC research do too. If Romney wins, maybe we can write a letter to Ann with all our names and see if we can get an advocate in the white house. Yes, she was lucky to have only stage 0 breast cancer but I can tell from when she talks about it that it is still on her mind.

I will add the following information which I read today. This is what prompted my post.

Metastatic Research Funding: government sources
Danny Welch, PhD, a researcher on metastasis at University of Kansas Cancer Center (previously at University of Alabama) says only a few hundred scientists in the world are trying to understand the process: “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget.” click here. see page 4. Quote is based on European studies and appeared originally in the Journal of European Cancer.
*
Metastatic Research Funding by Susan G. Komen Foundation
2012 ad campaign SGK states: “In just the past six years, over $35 million in funding has been awarded to help interrogate why cancer spreads, discover which genes can suppress tumor growth, develop therapeutics to target metastasis and find ways to help the immune system fight metastasis.*
Using the Komen Audited Financial reports MBCN calculated the total Public Support & Revenue raised for the same last 6 year period which totalled: $2,012,000,000 or about $2 Billlion dollars. 36 million for metastatic research as a % of the total revenue raised = 1.7% (round up to 2%) In other words, $200 goes to metastatic research for every $10,000 raised by SGK.
Metastatic Research Funding: government sources
Danny Welch, PhD, a researcher on metastasis at University of Kansas Cancer Center (previously at University of Alabama) says only a few hundred scientists in the world are trying to understand the process: “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget.” click here. see page 4. Quote is based on European studies and appeared originally in the Journal of European Cancer.
*
Metastatic Research Funding by Susan G. Komen Foundation
2012 ad campaign SGK states: “In just the past six years, over $35 million in funding has been awarded to help interrogate why cancer spreads, discover which genes can suppress tumor growth, develop therapeutics to target metastasis and find ways to help the immune system fight metastasis.*
Using the Komen Audited Financial reports MBCN calculated the total Public Support & Revenue raised for the same last 6 year period which totalled: $2,012,000,000 or about $2 Billlion dollars. 36 million for metastatic research as a % of the total revenue raised = 1.7% (round up to 2%) In other words, $200 goes to metastatic research for every $10,000 raised by SGK.