Where is the outrage?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    You do not even have to have BC to be outraged! Everyone is welcome to rage. We need a grassroots movement with a charismatic spokesperson, preferably someone who will not die in 2 years.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    Sorry for the boldness (font).

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    I don't make the rules about who can post here. I'm not clear about what the moderators think. Anyway, here is another private message that I'm reposting:

    Hi Adnerb, I've read your "Where's the Outrage" thread and would like to post there but I'm stage 3 and not stage 4. When I first heard of survingterminalcancer movie, I included a link on the HBO special thread here. I don't know you but you are correct...where is the outrage regarding breast cancer.

    I believe we must group together (all breast cancer stages, not just stage 4) and demand change...like the AIDS/HIV movement...but I don't understand why it's not happening. It needs to happen.

    Treating breast cancer with a multimodal approach (like AIDS/HIV) is needed. Access to various diagnosis methods for a woman's specific tumor type is needed for this approach (ie Caris, proteomics).

    Anyway, I stand with you on being outraged.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    Another repost:

    "Organize a physical march / protest to Susan G. Komen headquarters in Dallas, Texas."

  • AmyQ
    AmyQ Member Posts: 2,182
    edited March 2015

    Organize and demonstrate in October at SGK headquarters

  • chanah
    chanah Member Posts: 366
    edited March 2015

    Let's get a national figure(s) to join us as we dump 40,000 Barbie's (with their boobs and hair removed) onto the Whitehouse lawn or the Senate's steps.

  • Romansma
    Romansma Member Posts: 1,515
    edited March 2015
  • 208sandy
    208sandy Member Posts: 2,610
    edited March 2015

    If you want a wider audience may I suggest you move this topic out of the Stage IV forum.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    How do we move it out without losing all the posts we already have?

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Hi ladies and gentlemen, we have moved this Topic out of Stage IV area to here at the request of OP and suggestion of other posters so that a wider spectrum of members feel free to post here. We hope that being in the Advocacy Area suits this Forum better.

    The Mods

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    Thank you for opening this up to the rest of us. I'm "only" stage II but understand how little that means. Basically, "there but for the grace of God go I - for the moment" is how I view stage IV.

    I find it absolutely appalling that there's so little understanding, so little concern, so little outrage and so few $$ spent regarding metastatic cancer. I do feel that SGK has done ALL of us a huge disservice by trivializing breast cancer with pink ribbons and runs.

    Nor am I inclined to accept cancer as a chronic condition. That seems to me to be admitting defeat.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    Thanks, moderators!

  • 208sandy
    208sandy Member Posts: 2,610
    edited March 2015

    Thanks mods! Ah yes, Cancer as a chronic condition "just like diabetes or arthritis" guess what, AIs can and will give you both of those diseases to add to the mess we're already in - the only people I hear saying "chronic condition" are oncs.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    "Women (and men) do not die from breast cancer. They die when their breast cancer metastasizes and spreads to other parts of the body. There has been a huge push for breast cancer awareness in the past two decades, with a tremendous focus on prevention and early detection. We wish these efforts had been successful. But the simple truth is that after two decades and billions of dollars, breast cancer has not been prevented and early detection has proven no guarantee against metastasis and death. And while these billions have been focused elsewhere, almost 1,000,000 American women and men have died while waiting for research funds to finally be shifted to metastasis research. This tragic truth is lost in the sea of pink promotions. We cannot and will not allow this to go on."

    quoted from metavivor.org

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    It feels like I made a mistake requesting this thread to be moved to another forum. Less people seem to be interested in the advocacy forum (compared to the stage 4 forum). I am basing this on the number of views and posts.

  • MusicLover
    MusicLover Member Posts: 4,225
    edited March 2015

    Maybe if we keep it active we will see more activity on the weekend.  In addition, I think we should see what MBCN thinks of all of this.  I wonder if they have gone through this thought process already, they must have.

  • gypsyjo
    gypsyjo Member Posts: 304
    edited March 2015

    No Abnerb, you did not make a mistake in moving the "Where is the Outrage" to an open forum. I had seen the posts under Stage IV and wondered how we could ever get more support  if all couldn't post. We are all in this together. This discussion along with the petition for Cancer Charities to put more money for funding let me know what we are up against. I just really started learning about cancer after my diagnosis in late February this year. I had been pinkwashed in my thinking too. I have posted the petition on my facebook page while telling my network of friends of my diagnosis. My husband has also posted to his. We do need to get the word out one by one. We are putting a face to the issue that our Stage IV sisters know too well. Yes, 30% of those with early stage need to find it out now and get the word out to their friends. I was also thinking that this is a much broader issue that needs to be raised.

  • AmyQ
    AmyQ Member Posts: 2,182
    edited March 2015

    I agree, posting in a location with a larger audience is better. We need to bump the thread to keep it on the front page of active topics. But rather than just bumping, constructive comments would be educational.

    Amy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    Thanks! We'll keep it here.

    There's no stage 5.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    Dallas is too far away from San Diego.

    If I could I would go and stand outside the SGK office right here in San Diego, and hold a big placard stating facts on my original post. Only 3 months ago I could have physically accomplished just that. Today, however, I have extreme vertigo from chemo yesterday and my MO just said I may need a blood transfusion next week because my hemoglobin level is very low. My spirit is not weak, though! I have the will to go out there skinny, bald and sitting in a wheelchair if necessary!

    Brenda

    P.S. It really looks like the advocacy forum is not the right place for this discussion.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    Hi, Brenda - I'm sorry that you're dealing with low counts, etc. I appreciate your tenacity on this topic though.

    I think one of the problems with the Advocacy forum is that it's just too far down the list. I suspect that people literally don't scroll down that far unless they're really looking for it. I wonder what would happen if it became a sticky somewhere near the top of the discussion boards?

    Like you, I HATE to see this wither away. It's an issue that EVERY ONE OF US should have very strong feelings about!

    Being stage II now is no guarantee that I'll stay stage II, and I know it. I don't like to sound like I'm expecting trouble but I certainly don't want to deny reality, either. Elizabeth Edwards was dx. at stage II, also.

  • gypsyjo
    gypsyjo Member Posts: 304
    edited March 2015

    Hopeful, I feel the same way. So many of us catch it early then still go on to Stage IV. We all have a vested interest in this and so do our families and friends. So does our nation, what a waste in losing such talented loving women.

    Adnerb, I love your spirit. I travel to San Diego to see my grandbabies a few times a year. Maybe I should plan on picking you up and the two of us stand out there with signs. I am sure there would be others to join us.

  • MusicLover
    MusicLover Member Posts: 4,225
    edited March 2015

    I just watched the preview for the Emperor of All Maladies which airs on PBS from 3/30-4/1 (look for the thread on it for more details) but in the preview they state that they are going to discuss what the public can do.  I plan on watching and I hope several others here do too.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015
    Thanks, Music Lover. I'm not sure I can deal with watching it but plan to get it from the library sooner or later. I WOULD like to know what they think the public can do, however. BTW, I REALLY like your tag line. It's all too true.
  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    I've had this on my mind since you originally posted it Adnerb. I wanted to respond in more detail than my previous post, but I didn't think my response would be very popular. It just makes me sad that we all care so much and get nowhere, so I'm just going to spill my guts and get it off my chest so I can stop wallowing in it.

    I don't know about what kind of ads get run in the US, but here in Canada, we're inundated with the dumbest ads you can imagine by the Canadian Breast Cancer Foundation, almost daily. The latest of which depicts all these women biking, hiking, swimming, running to that Natasha Bettingfield song "UNWRITTEN". The graphic that appears on the screen in big letters is " 1/3 of breast cancers can be prevented by living well". That alone annoys me, because I DID live well and it's going to kill me anyway. Point is, all these ads, whether that is their intention or not, blame us for our own breast cancer. Like lung cancer getting a bad wrap regarding smoking. We all know that non-smokers get it too, but the message is that it's their fault. It's a stigma and people are always going to read into it that way because of how is portrayed..... It's Your Own Fault.

    In response to your initial post, and the AIDS advocacy, people's minds didn't really get on the bandwagon until sweet Ryan White made his story public. It gained more momentum after Elizabeth Glaser made her story public, even though the choice to do so was ripped away from them. In no way, shape or form could they be blamed. That's when people realized we had better stop assigning fault to AIDS and cure the damn thing.

    As long as the public gets these "blame the person ads" thrown in their face, nothing is going to change and we only have the Breast Cancer Foundations to blame. They're supposed to be there to help (not unlike Komen), but instead they send out that subliminal message that we did something wrong to get this disease. If we can't rely on them to help, nobody else is going to.

    I mentioned this in a prior post years ago. For almost 15 years, I canvassed for cancer. When I started, people were throwing money at me like you wouldn't believe. In the last couple of years, I barely got anything. People like to think it's the economy or whatever, but I know deep down in my heart, people are sick of funding a lost cause...they just don't say that's the reason. We are in a time where everything is possible yet a cancer cure eludes us? Don't buy it. Something else is going on but that's a post for another time.

    While I was posting this, that moronic commercial came on twice. I want to barf.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    Leggo, you raise some excellent points; thank you.

    And while we DON'T all necessarily KNOW this disease will kill us, the problem is that it has the potential to do so and no one can tell us what makes the difference in who recurs, who doesn't, who experiences metastasis and who doesn't. That is a huge part of what's so darn frustrating to me. (Along with the loss of so many women, the huge expenditure of energy, personal funds, time, toll on the family, etc., etc.) It seems to me that in this day and age we should be farther along than we are. And instead, we're told to accept the brutality of the treatments ('We're saving your life! You should be grateful!') and the idea of cancer as a chronic disease. I don't buy it.

  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    Agreed Hopeful. You know what else is outrageous? My dad died of lung cancer in 1969 (non-smoker). I was diagnosed with bc in 1996. Our treatments were exactly the same. Surgery, radiation and mustard agent poisoning. Some progress.

  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    I also remember crying in my doctor's office after diagnosis. He said "hang in there, we're so close". 19 years later and I'm still waiting for that prophecy to come true. Pffft!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    Leggo, I understand and share your frustration. It's even harder to watch a parent go through cancer than to be dx. ourselves, at least for me.

  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    Thanks for your understanding Hopeful. I miss my daddy. I was only 5.....never even got a chance to know him. Frickin' cancer. I've never liked the word "hate" but when it comes to cancer, I find it highly appropriate.

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