• Is anyone interested in being an advocate?

    Asked by Jejik on Monday, November 30, 2015

    Is anyone interested in being an advocate?

    I am a member of a group called MET UP and we are a grassroots organization committed to shifting the dialogue about breast cancer in this country from one of awareness to one about the need for more research of metastatic breast cancer. While many of us in the group are living with metastatic breast cancer (meaning our cancer has spread outside of our breast to a vital organ like the brain, lungs, liver , and/or bone), a lot of our members are early stagers, caregivers, friends, etc.

    40,000 women and 500 men die every year in this country from breast cancer. Almost all those deaths are of patients who have stage IV or metastatic breast cancer. You can not die from a lump in your breast...it must spread to one of your organs first. Despite the high number of us dying and the lack of progress that has been made in the last 20 years, metastatic breast cancer is one of the least understood aspects of breast cancer.

    If you might be interested in helping make change, message me.

    19 Answers from the Community

    19 answers
    • geekling's Avatar
      geekling

      I would be interested in learning to advocate more effectively for ALL cancer prevention as I believe all cancer is related and all tissue cancers can metastacize.

      I believe it is a mistake to separate a single and opportunistic disease into parts.

      Best wishes

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      Geekling.....I so Agree with you. It is really one disease that attacks different parts of the bodies. I believe they are making a mistake concentrating on the different cancers as the mechanism of why the cells don't die on time is really the same. Of course people will get angry at me for saying things I don't have any expertise in but that's how I feel. I'm not a scientist but I'm creative and can think outside the box and maybe the researchers are into Group Think too much and need to look another direction. It's just my opinion. In order for a cancer cell that has colonized it needs to get a blood supply and they have tried drugs like avastin that is an anti angiogenesis. But it had too many side effects. So my ways the system in one organ goes haywire. The way to keep cancer from spreading is to not get the problem in the first place ( Better Prevention techniques) because unfortunately by the time we get a pain or a lump in so many cases a few cells has already slipped into Life's Highway and is out of the barn. At that point we need to eat a LOT of the Plants that can help keep the runaway cells from burrowing to a capillary for food. Just some musings and I don't know if I'm correct or what but it's what I believe......

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      I have posted info here and on my blog about MET-UP. I am a caregiver as well as a cancer patient (I'm early-stage BC, caring for my partner who has MS), so I am not as active as I otherwise would be.

      You may also be interested in the Metastatic Breast Cancer Project:
      https://www.mbcproject.org/
      Spearheaded by the Broad Institute of Harvard and MIT, the MBC Project is direct genomics research focused solely on metastatic breast cancer. This project seeks to be a game-changer on many levels, not least the level of patient participation and collaboration. There will also be a chance for non-metastatic breast cancer patients to participate and contribute.

      The MBC Project is currently collecting spit kits and other data throughout the US and will soon expand into Canada. They handle all the data-gathering.

      There are also advocates from MET-UP and elsewhere over at Breast Cancer Social Media (#BCSM):
      http://bcsmcommunity.org/
      #BCSM holds tweet chats Mondays at 9 p.m. Eastern. I know that at least one of the regulars was at the DC die-in.

      Many thanks for your involvement! Give 'em you-know-what.

      about 4 years ago
    • Jejik's Avatar
      Jejik

      thank you Ejourneys.

      To the other two commenters, as a practical matter, all of our founders are dying of metastatic breast cancer, and it is also easier to lobby for one disease than hundreds of them. Also one of our aims is to end the sexualization of breast cancer, which isn't an issue with other cancers (to my knowledge).

      That said, at our recent meetings on Capitol Hill, I personally lobbied for changes that would impact metastatic cancer patients of all types including chemo drug parity, 30% of congressional funds for metastatic cancer and stronger compassionate use rules. So we are working for all cancers.

      about 4 years ago
    • geekling's Avatar
      geekling

      Firstly, what in the world is a spit sample for, please?

      Again, Jekik, I disagree in that I believe it is all one disease able to attach itself where ever there is opportunity. Im for prevention over cure. Man hasnt ever found a cure for anything but he has learned a bit about prevention.

      Cancer can strike anywhere on a body. It likes t its as well as a$$es and everything in between. I dont actually understand how anyone could think illness is sexy.

      In any case, I hope you get what you are after. I would think that all any of us want is a better, stronger, happier, more passionate and longer healthy life.

      about 4 years ago
    • Jouska's Avatar
      Jouska

      To Jelik's point, one has to start somewhere. I understand that all cancers deserve research and awareness, but lets start somewhere and hopefully what benefits bc patients will benefit all. BC gets a lot of attention with Pinktober but it is misleading because some of the big bc organizations provide an assumption and message that all bc is treatable and once you are done treatment, you're fine. We all know that is not true in many cases, but there is very little research to understand how and why bc does metastasize in some women and not others despite being treated as best we know how today. I applaud the efforts of MET-UP and Metavivor and am excited about the MBCProject. I am early stage but HER2+ so I know recurrence is a legitimate concern and that the research that discovered Herceptin has really improved my prognosis.

      about 4 years ago
    • CAS1's Avatar
      CAS1

      Cancer Dx is going to change..

      It's about the personality of the mutations and not the origin in the body where it starts..

      Lung cancer takes 165,000 to 250,000. People per year in the U.S. L.C. gets less than 1,400. In funding for reserch and B.C. gets 25K..for reserch.

      All funding should be pooled for all solid tumors. We Would Make Far Better progress.

      about 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I am a huge proponent for advocacy for cancer, especially lung cancer. It kills far more women (and men) than breast cancer and receives far less funding.

      I would dearly love to have some advocacy training rather than winging it. But, until I can get formal training, wing it I will!!!!!

      All it takes to get lung cancer is lungs.

      about 4 years ago
    • NNN's Avatar
      NNN

      jejik, helping make change, what kind of time/hours a day are we talking about here? what is expected from the advocate to do? can you please give us more details of what is expected ?

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      @geekling, a spit sample provides genetic information for a genomic analysis. More information on what is done with the spit sample is here:
      https://www.mbcproject.org/faq

      Some other info about metastatic BC:
      1. There is currently no registry of how many and which BC patients progress to being metastatic. The estimate of 20-30% of all BC patients going on to be metastatic is just a guess because we have no concrete data. The only true count taken of MBC patients is those who were diagnosed as metastatic de novo, which is estimated at only about 10% of the total. Within a month after going live, the MBC Project has signed up over 800 people in the US alone. Also, until the MBC Project, there has been no attempt to collect tumor samples to study.

      2. Most money raised "for BC" goes not to research but to events. Of the fraction that goes to research, only 7% goes to research into MBC, the only BC that kills. Source:
      http://www.mbcalliance.org/docs/MBCA_Exec_Summ_Landscape%20Analysis.pdf
      @CAS1, using your numbers, that translates into $1750 (7% of 25K).

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      Why doesn't the money go for a cure.....or am I asking the wrong question.
      IF everybody got cured what would happen to the trillion dollar cancer juggernaut.
      The poor Oncologists would have to go back to real Practice of Medicine....
      It is just awful and I KNOW I'm a cynic but you don't have to be a genius to know that something is rotten in Denmark.

      about 4 years ago
    • sheikhmeup's Avatar
      sheikhmeup

      Jejik I would be interested in helping. I don't have much experience but I could learn.

      about 4 years ago
    • Mikilog's Avatar
      Mikilog

      Jejik,I am on board to participate.
      I am with sheikmeup,don't know much but can learn.

      about 4 years ago
    • CAS1's Avatar
      CAS1

      Ejourney...If we use the same calculation then Lung Cancer gets about 10.00 bucks towards reserch. What I can say for sure is..when I look for programs to support survivors of L.C. there is nothing...B.C...wow..you can get free masssges, weekend trips, wigs, you name it..
      I think all that stuff should be ended and the money put into reserch.
      The 5 year survival for B.C. is 90%.
      The five year survival for L.C. or Pancreatic cancer is less than 12 %.

      L.C. kills more women every year than ALL CANCERS combined.

      about 4 years ago
    • CAS1's Avatar
      CAS1

      Perhaps the first step is to close down Susan B. Koen and the ACS.

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Definitely Komen, especially after this sh*t:
      http://bcaction.org/2014/10/08/susan-g-komen-partners-with-global-fracking-corporation-to-launch-benzene-and-formaldehyde-for-the-cure/

      I agree that we need to focus on quality research above all else. One of the travesties of BC stems from cultural fetishization and misogyny, period, which are behind the focus on things like wigs, makeup tips, etc. Crass as this sounds, internal organs don't "have to be" dressed up. The "male gaze" doesn't alight on (name the internal organ of your choice).

      See, for example, "You are not required to be pretty" by The Risky Body:
      http://theriskybody.com/2014/09/24/you-are-not-required-to-be-pretty-2/
      ("To be clear, I’m not talking about body image issues surrounding mastectomy, chemotherapy, radiation, and/or reconstruction here. I’m talking specifically about beauty standards, the pressure to return to 'normal' femininity and behavior as quickly as possible (or preemptively in some cases), and the ways in which conventional femininity is repeatedly presented as a form of empowerment to women grappling with major health issues like BRCA mutations and cancer.")

      and

      "My Disease Isn't a Cutesy Slogan" by Lara Huffman:
      http://www.huffingtonpost.com/lara-huffman/my-disease-isnt-a-cutesy-slogan_b_5853184.html
      ("These cutesy or provocative slogans offend me because they reduce women to a single body part -- our breasts. The body part that could very well mean our death if the cancer spreads from the breast to other organs (aka stage 4 or metastatic breast cancer). It gives the clear message that the focus should be on saving our ability to be sexually attractive to the opposite sex. Heaven forbid you lose the body part that makes others feel attracted to you, because if you lose your sexuality, you lose your worth.")

      That is what we are also fighting, in addition to cancer. Worse still, it threatens to divide our community because bottom line, we are all in this together. I know that part of the lobbying done at MET-UP's DC event involved funding for ALL cancer research and treatment, not just BC (see, for example, http://cultofperfectmotherhood.com/action-alert-all-caps-freak-out/). I also know that stage IV BC patients often report having more in common with stage IV patients with other cancers than with early-stage BC patients. I understand that, in the admittedly limited way that someone diagnosed at an early stage (but always with the potential to become stage IV) understands that.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      WOW E Journey that was awesome.
      I think a lot of women wouldn't get reconstruction if men
      weren't obsessed with breasts. It is a MESS....
      Plus I don't really understand why men are attracted to breasts but we are.
      They are supposed to be for Milk but somehow along the way men got turned on sexually to them.....very strange but it's the way it is. Then there is the disfiguring of this sex part that men like and oye yoy yoy....I've written some strange songs in my life but I wrote one on this subject a few years ago when my best friend had BC and said that her boyfriend left her because of it and she is 80...can you believe it? Of course this is not the rule.....So I wrote a song called Breast Cancer, Women and the Men who Love Them...I've gotten more comments on that song than almost any other I've written. The Marketing and Money Making Businesses that are making money from all this should all wind up downstairs......Just a mess..

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      @barryboomer, there are those who opt to not have reconstruction:
      http://www.flatandfabulous.org/

      The Play Out underwear campaign increased visibility for women opting out of reconstruction:
      http://www.huffingtonpost.com/2015/05/22/play-out-double-mastectomy-campaign_n_7354038.html
      ("Most people do not realize that over half of post-mastectomy women do not have reconstruction. If we can extend the comfort zones of women who make this choice -- who long to live openly and freely -- without prosthetics, we will evolve well beyond the cancer shame of the past.")

      The Scar Project also increased this visibility:
      http://thescarproject.org/

      A "monokini" project showed the potential for swimsuit design for women who have undergone a single mastectomy -- but note that the emphasis here is still on "sexy":
      http://www.huffingtonpost.com/2014/05/28/monokini-2-breast-cancer-swimwear_n_5405377.html

      I can't think of any other cancer paired with "sexy" -- can you?

      This also gets into another discussion of the economics of breast cancer. One of the reasons some women opt for a prophylactic bilateral mastectomy has to do with symmetry, which is not guaranteed with reconstruction. (Reconstruction is not in any way, shape, or form a "boob job.") Symmetrical clothing is less expensive. In addition, a single surgery to remove both breasts is less expensive than two separate surgeries, which is why some women opt to have a healthy breast removed, "just in case." The role of economics is often overlooked, but it also plays a tremendous role here,

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      PS: @barryboomer, what happened to your friend was disgusting. Shame on her boyfriend. She deserves someone who values her for who she is, not for her body parts. Unfortunately, this sort of thing happens when serious illness strikes; it doesn't have to be cancer or BC.

      about 4 years ago

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