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.

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

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.

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.

Re: Metastatic Breast Cancer and Nancy Brinker
 

Good post and great letter. I hope many will read.

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.

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.

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.

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.

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

Re: Metastatic Breast Cancer and Nancy Brinker
 

Thank you, Denise.

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

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.

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

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

Re: Metastatic Breast Cancer and Nancy Brinker
 

Well said,I totally agree.

Pia

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.

Re: Metastatic Breast Cancer and Nancy Brinker
 

Sorry for the language. I think it was my fear and maybe magical thinking (warding off) talking.

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

Re: Metastatic Breast Cancer and Nancy Brinker
 

She did? I hadn't heard that! Is that in her book or how did you know?