Lol. I knew you were saying that . And I was trying to agree with you, unsuccessfully. It's so difficult to type ideas instead of speaking face to face. Sorry I confused you....just ramblin' today. 

Here is a link to a table based on stats from the CDC:

cause of death by age/gender

BC is the 6th leading cause of death in women ages 25-39, 2nd in ages 35-44, and 1st in ages 44-54 (my age group). I was surprised to see that being killed in a car accident, was way down on the list at #21. 

"Breast cancer awareness" is not doing a good job of making us aware of the statistics that matter. 

Agree with you all on the outrage.  But another outrage IMO is when new meds become available and approved by the FDA for MBC and is not offered worldwide.

Linda

Oops, sorry MusicLover. I misunderstood. Yes, I truly believe I know what did cause my cancer, but that's just me. I only blamed myself for about a minute though because I was young, immature and stupid. I didn't know any better. I'm sure most people have regrets and that's mine. But like I said, I try to look forward, a lot older and wiser. I was young when diagnosed (not quite 30), and honestly, even at that age, I was to immature to make all the right decisions following that initial diagnosis, so here I am. Would it have happened anyway? Maybe, but having no genetic predisposition to the disease, I doubt it. I certainly don't expect anybody to feel the same so I completely understand what you're saying. We all have to navigate our way through this nightmare with whatever works for us.

I have a few friends who blamed a woman in our town because she chose to use a chemotherapy which was on clinical trial, this chemo was supposed to not cause hair loss.  Those are the only details I was given, I don't even know if they are correct or not. In any case, she was clear of cancer except for her brain and she did pass away from the disease.  But my friends blamed her for using that chemo.  I said wait a minute, she trusted her oncologist I would think that he would not have suggested it if he thought it wasn't sufficient.  We are not cancer experts and if we can not trust those who claim to be the cancer experts then what is the sense.  I know that it is good to be our own advocate and to do a lot of research but ultimately it is our doctors who are responsible for our treatment. (I don't think that this lady would have signed a waiver going against her oncologist wishes nor do I think that they would even allow that sort of thing.)

You asked the important question -- how did the AIDS advocates do it?

The answer is the ACT UP Campaign known as the AIDS Coalition to Unleash Power (ACT UP) campaign. If you google this subject the Act up campaign was so successful because their goal was to be "IN YOUR FACE". They brought in so much money so fast and stopped a disease from being a death sentence is less than 30 years. I remember the campaign well because the men were marching all over the place and were unrelenting, unwilling to be calmed. Men got the research money in by being "out there" non-stop unlike the weak campaigning that is done for women's health research. There are documentaries that show how they campaign was managed which probably really would be the learning tool these organizations need to motivate something beyond another chemo or another hormonal -- to effect some real change. Two of the documentaries that may highlight their methods are:

United in Anger: A History of ACT UP" and "How to Survive a Plague".

Women just don't get loud enough. You just could not avoid the ACT UP noise. It was easier to give money to keep people happy.

As one of the people engaged in AIDS activism at the time, I'll add that a topic of discussion in my various women's groups was "Will the gay men's communities show up en masse for breast cancer action as the feminist and lesbian/bi women's communities have shown up for AIDS?" Unfortunately, that reciprocity hasn't occurred in an organized, movement-related way. Part of that is, of course, that 50,000 people still become infected with HIV every year in the US, so the need for AIDS advocacy hasn't gone away. Still, it's concerning to me that breast cancer advocacy isn't more universal in our population with so many family members and friends affected by it.

We need something better than the pink ribbon, and we also need to push for women being treated as competent adults in our medical care. My male friends and family are aghast at some of the things medical professionals have either said to me or have glossed over and not said, and I've gotten pretty good care. The informed consent for these treatments is inadequate, the research base on side effects is inadequate, and no, losing my hair is not the thing that worries me most about a cancer diagnosis. The pinking and infantilizing I've experienced or read about from others on this board are disease-specific and gender-based. If testicles were the issue, the approach would be different. If testicle treatment included a high risk of lymphedema, lymphedema would at least be mentioned in informed consent and there would be more lymphedema research.

From Medscape (requires a free membership): http://www.medscape.com/viewarticle/848080?nlid=84...

Cancer Patients Start Protest Group Like ACT UP

Nick Mulcahy

The pink culture of breast cancer is about to get an infusion of red hot.

A small but growing group of women with metastatic breast cancer and their supporters have formed MET UP, an activist group modelled on the confrontational AIDS Coalition to Unleash Power (ACT UP) and sharing the same inspiration of anger, rebellion, and fellowship/sisterhood.

"MET UP is…committed to direct action for a viable cure for breast cancer. We protest and demonstrate," reads a portion of the group's mission statement, which was recently posted online.

A changing of the guard — and of attitude and tone — is needed in advocacy, suggests the group. "The time for honey is over. Break out the vinegar. It's our turn now," the group states.

MET UP has its eye on some major powers-that-be: the federal government, Komen for the Cure, and sexploitative breast-related charities, said founding member Beth Caldwell, 38, of Seattle, Washington, a married mother of two small children whose initial breast cancer diagnosis was metastatic disease.

"We're very much in our infancy, but we have big plans," she told Medscape Medical News.

One of the roots of the rebellion is frustration over the fact that, despite 40 years of "breast cancer awareness," the average survival with metastatic breast cancer has not changed and remains 3 years. "We're not making any progress in keeping people alive," said Caldwell.

"There are many members of our group who are very angry at Komen," she continued, referring to the influential and controversial breast cancer organization.

Here's one of the reasons for the rage, said Caldwell: In 2013, Komen had $125 million in revenue but gave away only $38 million in grants (and even then, some grants were not for scientific research). "As an organization that pitches itself as 'for the cure,' they are not doing enough to actually seek the cure," she summarized.

Komen has also reportedly kept women with metastatic disease off the podiums of its rallies because the specter of death is an emotional downer, as highlighted by Medscape Medical News.

"We are excluded from the club," says Caldwell about the general aversion that pink culture — with its mantra of "beating" breast cancer — has for the people who are inexorably destined to die of the disease.

So, is MET UP — à la ACT UP — planning to storm Komen headquarters in Dallas? Not now, said Caldwell, but "Komen is definitely on our radar." The activists recognize the group has new leadership and they are waiting to see whether grant funding priorities change.

The first major direct action planned by the fledging organization is a nonviolent "die-in" on October 13, which is Metastatic Breast Cancer Awareness Day, in Washington, DC, on the lawn of the US Capitol with 1430 men and women to symbolize the daily death toll of the disease worldwide.

There's a lot to protest at the federal level.

Only 7% of all federal breast cancer research funding is earmarked for metastatic disease, despite its accounting for at least 30% of all breast cancers (either at diagnosis or by progression).

Also, last year, NRG Oncology, which enrolls about one third of all patients with cancer in clinical trials sponsored by the National Cancer Institute, said that it would no longer regularly conduct trials in metastatic disease (including that of the breast). The prominent trials group is now devoted to early-stage disease, as reported by Medscape Medical News.

[...]

Their website is http://www.metup.org/

Yes, THANK YOU!!!

If you're on Facebook, more information on their page: https://www.facebook.com/metupexchange?fref=ts

We really need to get the real statistics out to the public that 7 % are initially diagnosed with stage IV Breast cancer and over 30% of the supposively cured early stages 0-3 well develop stage IV that is the awareness that needs to be brought to the public view.   Look on the Stage  IV forum and see for yourself almost all were diagnosed with early stage breast cancer 2yrs, 5yrs,8yrs1 15yrs... after the original diagnoses.   We have to join as one force!!i Every  stage of Breast cancer has to stand up together and demand a true cure.   We want transparency these organizations have to give more money  to the cause not administrative costs!  If we join together as one  we are stronger and our numbers are astronomical   (stage 0-IV) they will have to listen!   We must DEMAND A CURE!!!! How many more lives do we have to lose, How many mothers, fathers, sisters, cousins, daughters, sons, friends, neighbors  and coworkers do we have to watch die!!!  Our voices have to be heard!!! No more pink we all should show up at the pink rallies wearing black to honor all the lives that have been lost and show everyone that this is what cancer truly is not pretty and pink get our message out there let them know we demand a cure!   United we can win a true cure for breast cancer!