Where is the outrage?

Anonymous

Now that everyone is aware of breast cancer, where is the sense of urgency? Why do people with MBC have to complacently accept that what they have is a death sentence?

More than 40,000 people die each year of MBC in the United States alone. This number has not changed since the '70's.

How did the AIDS' advocates do it? I remember reading about ashes of loved ones being thrown into the White House lawn. That's just one of the things they did.

30% of early stage BC develop into MBC. Shouldn't 30% of Komen funds go to MBC research? Last I heard it was 2%.

Where is the outrage?

Beachbum1023

Great question! I'm Stage IV, and there ain't no 5! And I am triple negative on top of that. I guess they feel it is better to save the masses, it probably gives them better stats. Oh well, I march forward one step at a time. So what can we do??

NineTwelve

Right. I feel like we've been pinkwashed, co-opted by the "Catch it early and get cured" mentality. Well, it doesn't always get caught early, and when it is, it doesn't always get cured.

We need more research. We need more studies. We need more options.

Anonymous

Beachbum,

There ain't no stage 5. I'd like your permission to use that phrase!

Brenda

Tina2

Brenda,

Our outrage waxes and wanes, like the moon. Search "Komen" and "pinkwashing" on this site and I'll bet you'll find plenty of of it! The good news is that there is more media coverage of Stage IV issues these days. And organizations like MBCN are working hard to raise awareness of the immense gaps in research funding and services.

If Stage IV folks and their advocates could somehow band together as activists under one banner, we might begin to see some real change evolve more quickly. In the meantime, we must be vigilant, speak up, and do what we can individually to make sure awareness of Stage IV and research is moving in the right direction.

Tina

Anonymous

John Smith requested me to post for him as he did not think he was allowed to post in the metastatic thread. Per his request, here is his post, verbatim:

"If my wife ever goes Stage4, I'm going on a warpath.

What the BC community needs is a powerful voice that can mobilize the community and start a revolution. An evangelist.
Push for change and overhaul the medical system (especially the clinical trial system).
I assume most have already seen the video, survivingterminalcancer.com. It's over two hours and focuses on brain tumors, but worth watching as it easily applies to this community.
If the content is truly objective, than it's absolutely mind blowing. You'll hear about how the AIDS patients did it right by making it a chronic disease, instead of a death sentence."

Anonymous

Thank you, Tina. So far I am also hearing that a powerful spokesperson and a grassroots movement might be in order.

Brenda

Romansma

Love your enthusiasm! Yes, we need outrage. We need a voice. Sign me up!

Mzmerz

Has anyone seen a newer 3-Day commercial, where these two ladies are at a coffee shop and the one tells the other that she has breast cancer, and the voice over says something about the friend needing to do something, and the first things she thinks about is going on a 3 day walk. Yeah, because that's going to help.

NineTwelve

I imagine that lady starting a Go Fund Me campaign, with a cut to researchers sitting next to their microscopes and the V.O. saying if we all (who can afford it) send in money... maybe half of what we are spending on our cell phone plans...

And ALL the money they get will go to finding a cure, a vaccine, and better diagnostic tools.

In my fantasy, zero is spent on frigging "awareness."

MusicLover

Here is an idea, someone builds a trailer for am 18 wheeler out of Lucite and then they load it up with 40,000 mannequins and they write on the side of the trailer 40.000 people die of breast cancer in the US every year, we need a cure!!! I am not certain if we need more then one trailer.  We can drive the trailer(s) across the country and also park them near the great lawn in DC.  Maybe I sound like a nut but we need something dramatic that will catch everyone's attention. 

Or 1,500 people die of cancer in the US every day, we need a cure!!!

 

Nel138281

Absolutely there is so much to be done.  Check out the Metastatic Breast Cancer Alliance.   They issued a report last year on where things stand currently and where we need to go.  It is a group of BC related organizations.  Strength in numbers. 

We need to make more noise in October and throughout the year!

Maureen813

count me in.

Anonymous

I just completed a survey emailed to me by metavivor.org. I was trying to create a link, but I kept getting the message that I already completed the survey. If you get emails from metavivor, you may want to complete this survey. Doing so almost gave me a feeling of catharsis.

fujiimama

Thanks for this. Komen at least didn't p(%($( me off as bad as the National Breast cancer foundation did last year. They were at a free community event. Teaching women self exams blah blah blah, but they had really cute BC reusable grocery bag. Went through the line. Said no I didn't need to learn a self exam, I have tummy boobs (they were brand new to me). One woman had the nerve to tell me I couldn't have a bag. I hadn't done the self exam. Excuse me I'm a flipping survivor with stage IV and have been for several years. How about setting up a table with stage IV people and other survivors. A talk to one so you know that we are damn strong. Oh she gave me the bag all right. Komen I'm okay with. They covered my mother-in laws friend when she didn't have insurance coverage. In my local area they help pay for travel expenses, wigs, etc. I don't like everything they do, but hey that's my rant. So yes I would love someone who focuses on my problem.

Anonymous

Fujimama,

Good to know that you know someone who received valuable help from Komen. With billions of dollars, though, they can do a lot more.

What you experienced at that community event was awful. It reminded me that not too long ago people like us were not allowed to be called "survivors" because we had not survived. We had failed the survival test.

As long as we are living with MBC we are survivors.

Take care.

Brenda

Anonymous

Here is a link that metavivor.org is asking you to fill out if you have MBC. I actually felt good completing it. Hope you all find time to do it as well. It will keep the public informed of our unique needs. I think you will need 20 minutes.

https://www.surveymonkey.com/s/SQHB3DC

Rosevalley

I think we should have signs and put them in our yard every October. Heck every month. Big bold signs like they have for political campaigns. 40,000 women die of breast cancer a year. 30% of all breast cancers will evolve to stage 4! When I first got breast cancer in 2007 the stats were 1 in every 8 women will get breast cancer in their life time. I think the stats are even worse now. People are ignorant and don't know. What they see is that ED is a national epidemic (on every night in commercials) and captures HUGE pharmaceutical dollars and 40,000 women dying of BC is invisible. Or as someone posted above- 1,500 people die of cancer a day.

Fund Cancer Research!

Allyme

Adnerb,

I agree! Everyday I am outraged! So many things have changed/improved since the 197 0 ' s, but no closer to a cure for mbc? I don't understand! It's almost like people don't even really care, unless they're affected by it. But the numbers grow daily, and one day there will be plenty of people affected by this. I can't just roll over and accept this as okay. I don't understand why I'm just supposed to accept it and be okay with it. Why isn't there more being done to cure this horrible disease that can't be prevented, no matter how hard you try? It doesn't make sense to me that we should have to die, just another statistic!!

Bestbird

Each time I read of another person dying from this disease another piece of my heart breaks off while my fury mounts. 

That said, each of us is capable of effecting change.  We can write articles about MBC, help Metavivor in their initiatives, and assist the Metastatic Breast Cancer Alliance (MBCA) in their goals.  As an individual member of the MBCA, I recognize firsthand that the MBCA is in the process of effecting change for us.  For example, they're looking at improving access to clinical trials, and making MBC information more accurate and available to patients and providers.

Some may recall the "Exceptional Responder" survey which was undertaken in Feb.:

 https://community.breastcancer.org/forum/8/topic/828854?page=1#post_4316137

The input from those who responded to the survey was enormously helpful, and ! reported the results this past week to the MBCA, who were very interested. 

In the future there will probably be additional MBCA - and other - initiatives that peoples' input and participation will help to bring forward!

 

MusicLover

I like what Dr. Susan Love says on her site, "Wouldn't it have been better not to have gotten cancer in the first place?"  If we get there some day that would be amazing. 

Rosevalley, I had to look up ED, my brain just wouldn't go there I guess.  You are so correct.  Along with weight loss commercials, another thing we are inundated with.

dlb823

Lots of great comments here (I wanted to "Like" several of them!), and I do think the tide is starting to turn. For the past few years, it was just bc survivors railing against pinkwashing, but by 2014, it seemed like people in addition to us were jumping on the anti-Komen-awareness bandwagon. And I was thrilled to see a mainstream news outlet just this week run a story about Stage IV bc. http://www.huffingtonpost.com/news/stage-iv-breast... Last night at a dinner party, when the talk turned to charitable giving (because some of us there had collectively donated to Wounded Warriors) and someone mentioned Komen, a woman with no affiliation that I know of to the bc community snapped, "Oh they don't do anything except promote awareness!" I wanted to reach across the table and hug her because her realization of the problem seemed huge to me!

I think the public mindset truly is starting to shift, but now more than ever is the time for us to put the pedal to the metal and beat the drum about metastatic bc and the need to redirect every dollar possible to research to stop the 40,000 deaths a year, which hasn't changed in spite of awareness, Herceptin, aromatese inhibitors, and all the other wonderful advances in recent years.

ML, I love your mannequin idea, but I suspect 40,000 would require more than one semi load. But that's what we need to do -- provide a visual -- plus maybe (IMO) enlist a passionate celebrity spokesperson who will trumpet the cause because, sadly, celebs seem to get the most attention no matter what the situation or need.

I am seriously ready and willing to team up to work on this. Deanna

Anonymous

When we lose our breasts we lose our ability to nurture. I may be waxing poetic, but aren't our breasts, literally, the instruments for nurturing? On top of that we are depleted of estrogen through anti-hormonals and surgeries. Isn't estrogen what makes us supple, youthful and feminine?

There are so many young women dying of MBC. Last year I had 4 friends between the ages of 40 and 50 who succumbed to MBC. Are women just drying up and becoming extinct?

To the powers that be: You don't have to be female or afflicted with MBC to be concerned about our plight. You have every reason to be concerned about humankind as a whole. So stop allowing MBC to killi grandmothers, mothers, sisters, aunts, daughters and nieces. When you kill us you kill humankind.

MusicLover

Deanna, Thank you.  I came up with that crazy idea because I was thinking we all need to go down there and demonstrate and someone mentioned about the AIDS patients demonstration and then I thought about the Vietnam Memorial and I thought this might be something that can be used again and again without the need for people to keep demonstrating in person.

Adnerb, You are absolutely correct! In addition, many women are not able to conceive after having chemotherapy.

There are several celebrities who have lost their mother's to this disease, I believe Madonna, Patti Lupone, Rosie O'Donnell, Bill Clinton and there are probably several others.  I wonder if an organization like Stand Up To Cancer has reached out to them for support?

 

208sandy

My birth mother and my adopted sister both passed away from MBC and I am next on that list - while we wait for a cure could someone please explain to me why we still have drugs with such horrendous se's? Honestly, the "living with cancer" meme makes me crazy - would love to see these "pink" people find out just what "living with cancer" means - it is sheer torture for some of us. I think the general public believes that breast cancer is a walk in the park because of Komen and all that "pink".

On the 40,000 mannequins why not ask some celebrities to pose say on the Washington Mall surrounded by the 40,000 - it could be all computer generated and then posted online - it'll go viral for sure and that way perhaps the National News in the U.S. and Canada will cover the story - think it's worth a try - too bad I am computer illiterate.

Shutterbug73

I'm outraged every time an ad for Koman "walk for a cure" comes up on my Pandora. Apparently I've googled breast cancer enough times that they think I'm their targeted audience. It sets a fire in me every time and I usually rip my headphones off in disgust. I'm thinking of firing off an angry letter to Pandora for not allowing me to opt out of the ad. First of all, I don't want to be reminded of my breast cancer while I'm listening to my favorite tunes at work. Second of all, the ad is insulting! "The greatest strides you can make in the fight against breast cancer" Aghghghghgh!

...andI agree with Deanna....BCO needs a "like" button!

DiveCat

I do not have breast cancer. But I am the daughter, granddaughter, etc of wonderful women who have all had or have metastatic breast cancer and whose lives were, or will be, cut far too short. I just found out this weekend my mother has had rather significant progression since her last scans, and she is going on chemo starting today, so I am particularly sensitive right now, but I saw this topic come up a few days and wanted to sign in and say *I* am outraged, and I also wish it would not take people to have personally go through metastatic breast cancer in themselves, or to see it in a loved one, to be outraged or to speak up. As sad as it is, I don't think there will be major, major change until those without metastatic breast cancer, or without loved ones with metastatic breast cancer, also speak out and make it a more universal, widespread, issue. Until the message gets out that it is not JUST strangers dying. That those 40,000 women are not just numbers. That they may or may not be you, or a loved one, but that they are SOMEONE and SOMEONE's loved ones. Until then, I think it is too easy for people to brush it off as "not me", or to buy into the "early detection = cure" fallacy.

I know it is not much, but I do my best to inform anyone who shows the least bit of interest or naivety about breast cancer about the truth of it, as well as the misleading info from Komen et al about stats and early detection. That even 30% of "early stage" cancers metastasize. That the 5-year stats are horribly misleading. That there is no cure for metastasis. That "catching it early" as some seems to think does not mean a cancer free future is guaranteed. Even before my mother's recurrence, I remember having to tell people that while yes, technically my mother was "early stage" (Stage III) that did not mean it was curable - I know for many this is due to the messages out there and not their fault, and it is great and fortunate they have never had to have the up and close experience with breast cancer - but it still amazes me how much misinformation about breast cancer, and particularly metastatic breast cancer, there is. Nothing can get me ranting more than hearing something like "buy yogurt lids and save lives!" or seeing some commercial where someone decides the best way to support a friend with BC is to walk in a pink feather boa.

I don't mean to creep anyone out, but I keep an eye on these Stage IV forums, to understand more what my mum is going through, her treatment options, and so on. I don't know if she is on here or not, though I do know she is also quite outspoken about MBC, and regularly posts articles on MBC on her Facebook and so on. If she is here, I certainly don't want to intrude in her safe place so I also don't try and figure out if she is here (but I certainly do think I should recommend this place just in case, you are all wonderful). But every time I see a member first coming here after having a metastatic recurrence, or see threads about progression, or about going into hospice, or passing on, it breaks my heart. It also angers me. For many reasons that are a bit too complex emotionally for me to explain very well right now.

I wish I could do more than just inform people at a "local level". I wish I had the resources and funds to do more. But then I think, I wonder if we are ALL thinking that, and the reason more is not being done is no one thinks they can be that person to do more...strength in numbers. I don't know, I don't have any solutions. I will keep doing what I can to raise awareness on a personal level, but believe me, if I can do more I will.

leggo

People will be outraged......and then they'll go back to eating their dinners.

dlb823

This thread had made me realize that perhaps being outraged here or within my own circles isn't enough. I know there's currently a petition asking that Komen and other bc non-profits commit more funds to research, but perhaps the answer or the impetus for the answer depends on us more than we realize? Maybe there's something more we can be doing as a force?

Romansma

Agreed, we should be doing more. Not sure what I have the energy for, but sign me up. The thought that my daughters or granddaughters will have to deal with this disease makes me crazy mad

AmyQ

My outrage is directed at the Susan G Koman Fund and all their "feel-good" propaganda. I think they've been around too long and have been directly responsible for the complacency the general public has towards BC. Their initial mission, awareness was successful but it shouldn't have started there. It should have started with a CURE and research for a CURE. But because symbolism over substance is easy and makes people feel all warm and fuzzy, I don't think SGK will ever change. They feel they're accomplishing their misplaced goals but they should take a cold, hard look at a meaningful goal and campaign. I am so disgusted at all the dollars misspent on pink-washing when it could be going for research towards finding a cure. I think SGK is criminal.

My dream would be to have a sit-down with the CEO and try to "educate" her to the real faces of BC, especially Stage IV. In fact, I think I'll make it the top of my Bucket List.

Amy