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Mtngrl 10-15-2011 08:40 AM

Metastatic Breast Cancer and Nancy Brinker
 
Thursday, October 13 was "National Metastatic Breast Cancer Awareness Day." Of the many essays and blog posts that I have seen in connection with the persistent lack of understanding of metastatic breast cancer that gave rise to the desire to set aside one day to focus on Stage 4, this open letter to Nancy Brinker, the founder of Susan B. Komen for the Cure Foundation, is my favorite: http://healthychange4you.blogspot.co...letter-to.html

Hope won't fix this. A positive attitude won't fix it. Elizabeth Edwards had hope, good medical care, and a positive attitude. She died three years after her breast cancer was found to have metastasized.

I do all I can to take care of my body, mind and spirit. I did that before I was diagnosed. I would like to think that doing more of that, or adding something else--another supplement, another spiritual practice, another kind of exercise--will put me in the 2 to 3% of people who achieve permanent remission after hitting Stage IV, but that is, essentially, magical thinking.

Stage IV breast cancer is incurable. Staging is an outmoded concept. Early detection is not really saving lives, it's just skewing the five year survival rate. We need a cure. An organization that has trademarked the phrase "for the cure," and has actually sued to enforce its ownership of that phrase, should be on the forefront of searching deliberately, systematically, and scientifically for understanding metastasis and learning how to stop it. Nancy Brinker recently said in an interview that she didn't think the cure would come from a laboratory. Huh?

She has a huge megaphone, and, for all the good she has done, she nevertheless misuses her position to create misconceptions and to promote both false complacency and false fear. It isn't deliberate. It's just an inevitable consequence of "cause marketing" and "activity based philanthropy." In a market-driven approach to solving public health problems, messages inevitably get distorted to serve the interests of the corporate sponsors. Sponsors want happy, celebratory, feel-good events and stories, so the mainstream version of "awareness" is false. Fewer women are going to get breast cancer than most people think, but far more women who do get it will die from it than most people realize.

I think this letter strikes a graceful balance between gratitude and confrontation. Demonizing Susan B. Komen for the Cure is counterproductive, but we can't let them have the last word on this either.

Ellie F 10-15-2011 09:29 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Hi
According to my onc the number of women (and especially young women) getting bc is increasing? I totally agree that we need a cure now!!
Ellie

rachelhmmd 10-15-2011 10:16 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
I am not Stage 4, yet. But I know I may be one day. That letter so articulately expressed the problem.

Two years ago I participated in a Survivor Ceremony. While everyone else swayed to the song, I found myself getting angry. There was all this hoopla for longer term survivors, as if one should be applauded for being "lucky enough" to have a less aggressive tumor. Breast cancer is not one beast, but many; it is a very heterogeneous. We are not all in the same boat.

The week I was diagnosed with breast cancer, so too was a colleague of my husband's. We became fast friends. Her cancer was super aggressive, and within 5 months she was dead. She was a single mom, and left behind three teenaged kids with no plans in place. It was terrible and sitting in the ICU as she died was one of the hardest things I've ever done, especially given my extreme fears about my own mortality. After her death, I tried to process it in my breast cancer support group. I was shushed down, because others in the group found it too upsetting. They wanted to talk about knitting pink hats. It was ok to talk about lymphedema or side effects to chemo or types of reconstructive surgery or bone density. It was definitely NOT ok to talk about dying.

I agree that we women with breast cancer do ourselves the greatest disservice by focusing on the PINK and denying the BLACK. The real fight is curing metastatic illness, so that when it comes to us, our daughters, our sisters, it will not be our last enemy. I know that it is hard to face the real source of our terror, that we naturally employ denial, avoidance, and even reaction formation ("Let's look at the GIFTS cancer brings us...YIKES!). But all of that candy coating does't antidote the poison.

sarah 10-15-2011 11:10 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
good letter and agree, money should be focused more on metatastic bc than 5%, that's far too little.

Catherine 10-16-2011 10:37 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Good post and great letter. I hope many will read.

ElaineM 10-16-2011 11:08 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Yes. Good letter. I appreciate the opportunity to read it.
Does anybody really understand any disease unless they have it or someone very close to them has it?
People going through treatment for kidney disease, MS, heart disease, Diabeties,and other diseases understand the ups and downs of those diseases better than most people in the general population do. That is why in the thread about the movie Five I thought they should have consulted real people who are/were affected by breast cancer. Perhaps a few people with diseases should be on the boards of drug companies or the FDA too.

Mtngrl 10-16-2011 02:46 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
I just read this article on Komen and the Dallas Cowboys: http://www.nytimes.com/2011/10/16/bu...pagewanted=all

It quotes the announcer at the game as saying "With early detection, your chance of survival is 98%." As the article goes on to point out further down, technically that's true--for five years. But leaving out that little detail makes it a lie. Without early detection, five year survival is still about 98%. All early detection does (for some people--and we don't know which ones) is increase the number of years they know they have breast cancer. Komen wrote the copy for the announcement, and later apologized for the "error." The article also says mammography has lowered the death rate. I'm not so sure that's true either.

I understand why people want to "accentuate the positive" and I actually do think the runs, walks, and so forth are helpful for survivors. They are moving, uplifting occasions. But metastasis is like a dirty secret--at the public events and fundraisers, and in general, but it shouldn't be.

Illness, disability and death are not pathological. Everyone will experience most of those, and we are all going to die. I'm in no hurry to check out, but I realize that as someone with Stage IV breast cancer I probably won't reach a normal lifespan and, barring either a miracle or some other really bad luck, I will die of breast cancer. The more I say that the less weird or frightening it sounds. We need to talk about it. Far from intimidating me or paralyzing me, the knowledge helps me make decisions about my life and how I will live it each day that I have.

Rachel, I'm so sorry you didn't get to talk to your support group about your friend's death. And what a shock that she died so fast. That's really sad, and scary. (And I'm so sorry for her three kids). I agree that we can't simply "think pink" and wish away the rest.

Of course I don't consider myself lucky to have been diagnosed at Stage IV, but I am lucky to have an in-person support group just for Stage IV moderated by a wise, funny, smart woman. My first visit to the group, not long after I was diagnosed, was pretty intense. Three people had just had medical emergencies. One had almost died, but her oncologist (who is also my oncologist) ordered some kind of Hail Mary Pass chemo combination and they beat the cancer back. One member has been living with HER-2 positive IBC for 11 years. When I got over the shocks to my consciousness I realized that the group is perfect for me. I'm not one to hide my head in the sand. I figure you can't really make good decisions unless you have complete information. And I also realized that since all three women had lived to tell the tale (and to fight another day), that the stories were "happy" in a sense.

In the group we can be completely honest with each other. Also, believe it or not, we laugh a lot. There are smart, funny, beautiful, women in the group who are full of life and who I'm glad to know. Of course that's true of this community too.

I'm glad I found you all.

Namaste.

tricia keegan 10-16-2011 02:58 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
I think this is a wonderful letter, I moderate the Komen message boards and when I joined six years ago there was no mention of stage iv and if someone at that stage posted I noticed no one replied. I'm glad to say I had a direct input in beginning a stage iv forum for women who do land there so they have someone to discuss their fears with who undertands, if her2+ I direct them here! I think Nancy Brinker has done so much for bc as a whole but do agree more needs to be done now in research directed towards progression and will send this link on to someone in komen I know in the hope it helps a little.

Mtngrl 10-16-2011 05:07 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Tricia--Thank you for this information. I'm glad you are present in both boards. Thank you so much for advocating for stage iv concerns.

NEDenise 10-16-2011 05:53 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Amy,
I haven't even read the 'open letter' yet, but I am overwhelmed by the eloquence and emotion in your posts. Thank you so much for your openness in sharing this with all of us.
I've enjoyed (and agreed with) many of your posts since joining the forum, but this one is truly exceptional.
Keep fighting! The world needs women like you!
Denise

Mtngrl 10-16-2011 07:45 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Thank you, Denise.

Pray 10-16-2011 10:58 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Hi Amy,

I second what Denise had to say about you. You are amazing! I am so glad there are so many women on this site just like you! It sure would be nice to know one where I live.

Gods blessings to you.

Your Friend,

Nancy

Barbara2 10-17-2011 08:41 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Hi, Amy,
Thank you for taking the time to articulate your thoughts in a way that has so much meaning and understanding for all of us. When reading your message, I kept thinking...hurray... someone who is addressing the hard to talk about topics and facts, and has expressed it so well.

It seems that breast cancer is glossed over for the public and the real message and concern about this cancer gets lost because we tend to hide undesirable truths. It's a hard concept to balance. We don't want to sound negative, but yet at the same time people need to know and understand cancer's realities.

When I was diagnosed, I asked my onc what my survival chances were. He told me, but what I didn't realize until much later...sometime after chemo and when my brain started working again...was that he gave me a 5 year survival rate. If he told me "5 years," I do not recall it.

When Mrs. Edwards became stage 4, the news programs had on doctors and guests that were specialists in the breast cancer field, and it seemed that all of them skirted around the truth. It sounded like she was fine, and always would be.

Your message has been much appreciated.

AlaskaAngel 10-17-2011 09:49 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Thanks for making so much sense in this thread.

At the risk of being redundant, please consider the efforts of this nonprofit organization for working together to produce something real for breast cancer patients and to educate others:

http://www.affinityfilms.org/our_wor..._war/index.php

-AlaskaAngel

jml 10-17-2011 11:25 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Amy~
Thank you so much for your voice & your eloquence!

When I was dx'd @33yo & Stage IV, I went to a couple of different support groups, but found that I was such an anomaly & regardless of how "supportive" the others were, there was definitely an underlying tone of resistance to explore & discuss the unique issues of a Stage IV patient, because no one wanted to cross that bridge if they didn't have to.
Stage IV disease is so different than early stage disease. There is no magical 5yr mark to celebrate. I live from scan to scan, knowing that from one 12week interval to the next, things could change dramatically. I've actually lost the capacity to project into the future, much past a couple of months, to make plans for holidays, visits, travel. I recently got a new cell phone and hesitated when they told me I had to sign a 2yr service contract to get the "sale price" of the phone.
Even a comment like "I hope I look that great when I'm 50 years old" is a luxurious assumption that just doesn't exist in my brain.
I find the commercialization of "The Pink Ribbon" has become so overbearing - especially in October. It's like everyone wants to keep the disease perception nice & tidy & even FUN! As much attention the Ellen DeGeneres Show brings to the disease & as much money that she raises to support the cause, I still feel like it's so oversimplified.
We need to be vigilant about putting this face of BC in the forefront of media and all the organizations that coordinate these big BC walks to really educate all the pink ribbon wearing supporters. But Stage IV disease doesn't have a very pretty "face"...
I don't know what the answer is, but so appreciate of this supportive & intelligent forum to "talk" about it.
As I've said on other threads, had I known that surviving WITH Stage IV disease for 9+yrs was a possibility, at the very least a goal that we could fight for, I might have been able to approach my survival a little differently.

Keeping the Faith~

Jessica

Pmoore 10-17-2011 11:45 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Well said,I totally agree.

Pia

CoolBreeze 10-17-2011 11:59 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
As an aside, it makes me cringe when people say, "I'm not stage IV yet."

Language has power and you don't want to open that door, trust me. I know you can't will a disease by language but people should not be so accepting of it. After my recent liver resection, I'm trying very hard to get back into "cancer-free" mode and to use language that reflects what I hope is the truth - that I'm cured.

rachelhmmd 10-17-2011 04:38 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Sorry for the language. I think it was my fear and maybe magical thinking (warding off) talking.

KDR 10-17-2011 06:10 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
As a side note: Elizabeth Edwards fought a long, hard battle. But it should be known that she decided to end her treatments, much to the amazement and disappointment of her doctors. I think EE is used an example much too much. There were still many options out there for her.
Karen

CoolBreeze 10-17-2011 08:56 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
She did? I hadn't heard that! Is that in her book or how did you know?

KDR 10-18-2011 06:39 AM

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

Trish 10-19-2011 12:23 AM

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

KDR 10-19-2011 06:04 AM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Trish,
Wonderful post. So forward, so truthful.
Karen

Mtngrl 10-20-2011 01:52 PM

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/

Haily 02-28-2012 10:27 PM

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?

bejuce 02-29-2012 10:18 AM

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.

sarah 03-01-2012 05:22 AM

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

chemteach 03-12-2012 06:41 PM

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.

sarah 03-24-2012 11:35 AM

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

Mtngrl 03-28-2012 02:13 PM

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.

Mandamoo 03-28-2012 04:00 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Hear, hear Amy!

Mtngrl 03-28-2012 04:11 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Amanda,

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

Best wishes!

dawny 03-28-2012 04:16 PM

Re: Metastatic Breast Cancer and Nancy Brinker
 
Thanks Amy!

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

sarah 06-03-2012 04:56 AM

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????

Mary Jo 06-05-2012 04:57 PM

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

Nancy L 10-09-2012 10:55 AM

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.


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