Thursday, March 22, 2012

NO MORE STAGE 4 ~ STAGE 5 = NOT ALIVE

In keeping with my promise to be a Fearless Friend, I am reblogging an entry from the MBCN Buzz Blog.  The Metastatic Breast Cancer Network.  I had this blog planned because I think the message is important.  And then, it became personal again.

Last evening, I was at an event on behalf of Army of Women.  On the way home, I received a text message from a dear friend.  Her sister has a recurrence and it’s likely NOT local.  In other words, metastatic.  I am sickened over this.  We really MUST change the conversation and we MUST get the right research funded and get the studies filled.

Times are tough, finances are tight everywhere but one thing we can do each day is cast our votes for METAvivor at The Pink Well.  Each Day.  Every Day. While the reblog below is from MBCN which is a different organization, they are not in the Pink Well "contest" ....  And I am sure they would support all votes going to METAvivor.  They fund research.  

Coincidentally, the Monday night tweet chat was about Metastatic Disease.  The chat is referenced in the comments so I am providing a link.  OR, if you are not a twitter-er..and you would like to see what a tweet chat looks like, here is the link: BCSM Chat March 19


Metastatic cancer is the cancer that kills.  The numbers remain unchanged despite decades of "research."  Metastatic patients are "inconvenient."  They taint the pink ribbon and its symbolism of ummm, I'm not sure what?  Hope?  Victory? Surviving thanks to the same barbaric slash, burn, poison treatment that's been around forEVER.  We've gotten better meds to control the side effects and we've perfected surgical techniques.  


We've come to accept Detect and Fix.  Why is this okay?  Why aren't we screaming that we are NOT happy.  That we have SO far to travel.  Early detection so we can make horrible choices like amputating body parts, poisoning our bodies, ceasing hormone production so we can age rapidly inside and out?  NO.  This is not okay with me.  Enough is enough. 


How about, PREVENT and toss all the detection tools into a junk heap.  Surely, our sisters with mets feel like they are as insignificant as that pile of junk.  That has to change.  WE have to change it.  WE can't be thrilled about our own good fortune-existence in the Land of NED while others are waiting for the next big thing... the thing that will stop the progression of their cancers, that will eradicate what is left in their bodies, that will save their lives.


Do you remember that commercial with Lynn Redgrave?  "I want to die from eating too much chocolate, I want to die from........ but I REFUSE to die from breast cancer."  Diagnosed at 60, dead at 67.  And it wasn't the chocolate.  Research, Research, the RIGHT Research.


And now, the blog as it appears on the MBCN website:




I am so tired of celebrities putting a happy face on breast cancer.


A Letter to the Editor of US magazine:


It is wonderful that Guliana Rancic has a positive, uplifting story to tell.   But unfortunately for us, it isn’t all pretty pink ribbons and cures. The celebrities that fight breast cancer and win are the public face of this disease. We need a platform to educate people about the progress that has not been made in finding a cure.


A lump in the breast does not kill anyone. When breast cancer cells travel or metastasize to another part of the body—usually bone, liver, lungs or brain—it is incurable. Those of us with metastatic breast cancer aren’t and will never be the survivors. The cure has eluded us.

Much has been done in the areas of prevention and early detection and that is wonderful. It provides women with more choices in their treatment. Although people think we have come a long way, 40,000 people will die of this disease this year.–just as many as in the year 1995. Yet, less than 5% of research funds go towards metastatic breast cancer.


Many breast cancer organizations don’t recognize those of us who are living with stage IV breast cancer – they serve the ‘survivors’. We are scary to them and we are pushed into the shadows.
We need government and private research funds to find treatments to extend our lives. We need for everyone, including the breast cancer community, to be aware of us.


The Metastatic Breast Cancer Network, mbcn.org, is made up of all metastatic women. We are all volunteers and are unpaid, and we are passionate about helping each other and advocating for our disease. We are desperate for our story to be told.


Deb Tincher
Hamilton, Ohio
MBCN Board member


23 Responses to I am so tired of celebrities putting a happy face on breast cancer.
  1. Larry Tincher says:
    Well said Honey !
  2. Sandy Kugelman says:
    Fantastic! Thank you. The only thing I disagree with is that there has been much research on prevention. There really has been minimal research on this since corporations like Ford are in bed with Komen and wouldn’t like publicity about environmental links. But all else that you point out is so right on. I get so tired of people holding Cheryl Crow up as a role model for me. I think she had stage 0.
  3. Rita says:
    I have lived with breast cancer for over 15 years, (Stage 2, node negative)and soon it will be 11 years with stage 4 disease. (Bone metastasis.) PFS-progression free status is my label and I am thrilled to still be here.
    I have watched many lose their fight with breast cancer. No known cause, no way to prevent it still after all of the research and money spent.
    Celebrities that gush over how lucky they are and make it seem as if B.C. is nothing have not a clue.
  4. Reblogged this on ihatebreastcancer and commented:
    MBCN board member Deb Tincher is glad Guliana Rancic shared her uplifting breast cancer story in US magazine. But she reminds us that celebrities with early stage breast cancer are not just like US. “I am so tired of celebrities putting a happy face on breast cancer,” writes Deb.
    Me too.
  5. Cheryl says:
    It seems to me that a lot of people (men and women),go along for years after having stage 0 breast cancer,then have bone,liver,or brain mets pop up.Saying you are “cured” because of a mastectomy,chemo,and rads is,in my opinion,naive.
    From the reading I’ve done on breastcancer.org ,there isn’t anyone who can be sure they are “cured”,even after many years.
  6. Carole says:
    You are not scary to me because first of all I know that it could be me at any time. I worked for a national organization as a counselor and in training we were asked this question “Do I or did I have breast cancer?” I know that there is always a chance that a rogue cell is sitting dormant in my body and could burst into action at anytime, so my answer medically is yes I still do have breast cancer. NEOD is nothing but a statement my doctors can make annually and maybe one day they won’t be able to say that. But you do not scare me, I don’t run from my Stage IV friends, I am not uncomfortable around any of you. What I wish is that your voices be heard because the next celebrity to come forward may not be so cavalier about their staging
  7. Count me as another who is more than a bit tired of the ‘happy-face celebrity version’ of the cancer experience. While I applaud any celebrity for going public and trying to make a difference, such stories don’t tell the whole story. Unfortunately, the public latches onto such stories and remains in the dark as to breast cancer’s other realities, and that’s a disservice.Thanks for writing this.
  8. So glad to know I’m not alone in my dislike of celebs touting BC as such a happy, pink-ribbon-wrapped gift. I wish more people knew that that morbidity rates for this disease remain relatively unchanged; thanks for spreading the word.
  9. It’s one thing when Betty Ford, Happy Rockefeller, and Elizabeth Edwards stepped up and talked about their breast cancer, and the realities of their respective cancers.
    These women were true celebrities and used that status to educate and empower others.
    But Guliana Rancic? Give me a break. That is not a cancer story; it’s self promotion masquerading as public service.
    Until we understand that “breast cancer” encompasses up to 20 (I’ve heard of that many) diseases this kind of “celebration” will continue to confuse the issue.
    Thanks for really good post.
  10. hjelmstd says:
    I have long been upset how the media uses the “happy” stories. It trivializes breast cancer for all of the metastatic women and even for those of us who have not yet had a recurrence or metastasis. Breast cancer is not a lark.
  11. reenie says:
    I think this is an unfair dig at women who don’t have metastatic breast cancer. I really think we should be here to offer support no matter what the diagnosis or possible outcome. I was diagnosed with triple positive stage I breast cancer. I had no lymph node involve. I am currently undergoing six chemotherapy treatments and 52 weeks of Herceptin. I am sure I can speak for every women that has ever been told she has breast cancer. I am afraid of metastasis, I am afraid that breast cancer could ultimately take my life. We all feel aweful when some of us end up suffering and dying of our disease. We should be happy for those of us that do not. We are all survivors. If you are living with it, you are surviving. We all want a cure, we all want to see those most affected be saved. Celebrities bring much need vigor to our fight. We should be glad that they are brave enough to share their journey with the world.
    • Sandy Kugelman says:
      Reenie, I do understand how scary it is, regardless of your stage at diagnosis. I was originally diagnosed Stage II, and I was raw-nausea-terrified. Three years later (8 years ago), I was diagnosed Stage IV. It probably sounds like sour grapes when you hear us criticize, but I would like to illustrate and hope I can articulate what I feel: I think the issue is that it seems that 95% of media coverage is about happy stories of “recovery” and “beating cancer” but in reality, no one dies of Stage I, II or even III cancer. Those of us with metastatic disease feel frustrated that we are swept under the rug even though we’re the ones dying. So it’s not that I don’t want to celebrate someone else’s good news. This isn’t a dig at women, it’s about the media. I want the media to accurately portray the scope of the experience of having breast (or any) cancer. They do not do this. Showing only the happy pink ribbon stories is like interviewing only white people about the civil rights movement.
  12. Reenie –you are correct that all cancer of any stage sucks.
    Specific to breast cancer, about 20 percent of those with early stage disease will go on to join the metastatic breast cancer ranks.
    Elizabeth Edwards was the most visible face of metastatic breast cancer–she was honest and accurate in her comments about the disease.
    Can you think of a celebrity who had Stage IV breast cancer? Sheryl, Melissa, Olivia and Guiliana don’t.
    Guliana Rancic’s early stage treatment didn’t require chemo or radiation. She had immediate reconstruction following her double mx.
    At no point (that I know of) has Rancic ever explained that she has early stage breast cancer and has an excellent chance of not dying from breast cancer, and, in fact was never in any danger of dying from her early stage dx.
    Not so for those of us with MBC.
    Rancic has been on the Today show at least twice to provide updates on her breast cancer. Bear in mind that most people with early stage breast cancer never see an oncologist. I see mine every month as do most people with metastatic breast cancer. Guliana Rancic has spent more time on the Today Show than in an ocologist’s office.
    What vigor is Rancic exactly bringing to the fight against breast cancer? In her case, breast cancer has been something to exploit to get on tv and in magazine’s to FURTHER HER OWN CAREER.
  13. Nan LaGow says:
    I have been fighting breast cancer for seven years. I just went through radiation for a spot in my spine and I just had a brain tumor zapped with radiation. This plus daily chemotherapy bears no resemblance to celebrity success stories that further their careers. I am happy for them, but I am happier for every morning that I wake up and can see my family. The pitiful amount of research dollars and the often unavailability of drugs we need are terribly sad and depressing realities. But we move forward every day and we all should be proud of ourselves and grateful we are not alone. I applaud you all and hope for many, many more days for us all.
    Nan LaGow
  14. That is the link to the Monday evening #BCSM tweet chat. It was all about the lack of funding for metastatic disease. 2% of research funding goes toward mets research. And, according to METAvivor, 30% of BC patients will become Stage IV.
    This is a GREAT conversation. I am reblogging this right now!
  15. BeenThere2009 says:
    With all due respect, I was diagnosed in 2009, early Stage 1, ER+, invasive BC with no node involvement. While I was fortunate not to require chemo or radiation, I felt very judged and/or ostracized by certain women that I met in support groups and along the way — as though I did not “suffer” as greatly as they did. Forget the fact that I had a double mastectomy with reconstruction due to strong family history (without the BRCA gene). For anyone thinking “I got off easy” I’d welcome you inside my head — I don’t have the extra layer of protection offered by chemo and while I trust my doctors that deemed it unnecessary, it scares me to death.
    That said, I have been offended by the endless parade of celebrities (particularly Giuliana Rancic) that have minimized BC on every level — from the unrealistic expectations she set for women prior to her surgery — to having hair and make-up people as well as stylists to help her dress during with her tissue expanders. Giuliana was even quoted in Chicago magazine saying she wanted all women to enjoy all her luxuries, including fancy shoes, and was going to start a type of ‘make a wish’ foundation for adults. I nearly lost my lunch.
    Because yeah … all a woman with BC wants (particularly with Stage IV) is a pair of Manolos. What planet does this girl come from?!?
    Giuliana is NOT the face of BC and brace yourselves … she and Bill will be pimping her surgery out on their reality show when the new season airs in April. Yes. For PROFIT. There are simply no words.
    I’m glad she is okay (as I would be for anyone) but she is still the vapid and shallow person she was before this happened and I resent her making a buck off a horrible disease. You didn’t see Christina Applegate, Robin Roberts, or Sheryl Crow doing this.
  16. ginny says:
    Reenie and BeenThere2009:
    I don’t think the intention of the post was to drive a wedge between women with early stage and those with metastatic breast cancer. Rather, as others have said, it focuses on the media, the choice of stories and the fact that although we have more than enough pink ribbon breast cancer awareness, it is sadly misguided and we have very little true understanding of breast cancer as a devastating disease. Why isn’t that story out there?
    I see on Twitter that there is a discussion group called #fearlessfriends, early stage “survivors” who are willing to confront their fear of recurrence and discuss the unmentionable topic of metastatic disease, which I think is just fantastic. Fear of recurrence has to be the greatest single legacy of “surviving” early stage cancer. Most of us, as metastatic patients, were there once and understand the fear.
    But, breast cancer is one disease we all share and we should be bonding together as earlystage and metastatic to end the fear, support research that will control metastases and make a breast cancer diagnosis a manageable, chronic disease, until a cure is found. ( or as Jody points out, 20 cures are found). Be our fearless friend, support us and help end recurrences.
    Ginny
    MBCN
    • Yes, Ginny and Deb!
      There are a whole group of us called #fearlessfriends and some of us left responses above. I have this scheduled to appear on my blog tomorrow. In its entirety. Comments and all…..
      I wrote a blog a few months back about medical advice from celebrities and I just went back to peek at my own post. What got me? The FIRST comment under that post was from Rachel. Now, I sit here with tears in my eyes.
      The conversation MUST change. Researchers should be enticed if they are not coming up with some cutting edge thoughts and ideas. We all need to to make our voices heard and to let it be known that 40,000 lives that are STILL being lost each year and that is simply unacceptable to ALL of us.
      I am a fearless friend and a five year stage one “survivor” and none of this is okay with me. Mets patients are breast cancer’s “dirty little secret.” I hope we can push that ribbon aside so people can see the true (lack of) progress on so many fronts.
      Best to all,
      AnneMarie
  17. Deb says:
    Wow! I can’t believe all the great responses and the dialogue that is taking place. US mag. and Guiliana may ignore my letter, but it is a start for enlisting anyone in the public eye to promote our platform. We need more awareness in our community, the cancer community and surely the nation. So let’s rally the troops! Posting on celebrity facebook pages, writing letters to newspapers, and rallying the bc groups on our need for research $ is something we can all do.
    My intention was not to minimize primary breast cancer–I was there for 12 years–but to emphasize how much we are ignored or forgotten. Thank you so much for reposting and blogging. We need to keep pushing for our voices to be heard.
    Deb
    MBCN
  18. ginny says:
    Thanks, Anne Marie. I think the best way to honor Rachel and her wonderful voice is to keep on fighting for what she believed in and what she so eloquently expressed for all of us.
    Looking forward to following you on your blog and twitter.
    thanks!
    • I couldn’t agree with you more! Tonight, I was at the Avon Foundation Breast Cancer Forum evening reception where I was trying to get women to join Army of Women. On the way home, I got a text message from someone who is VERY dear to me. Cancer recurrence in her sister. Likely not local. It became VERY personal again. I don’t think it ever stops being personal but when it hits so close to home so soon after I watched my 39 year old friend go from stage I to death in UNDER two years…… I am determined to change the conversation.

5 comments:

  1. This is a powerful post, AnneMarie. Thanks for enlightening us. Stage 4 is not acceptable.

    ReplyDelete
    Replies
    1. Thanks, Jan. You are absolutely right. Stage 4 is not acceptable. Neither is the permanent damage done to those who remain NED even after a Stage 1 diagnosis....... in fact ..... let me correct myself... a stage ZERO diagnosis. I think it's up to all of us to make sure we are heard. The status quo must change.

      Delete
  2. Fabulous post, and as a Stage IV "survivor" you know how grateful I am for the awareness. I can completely relate to those who feel we are all one club, and I believed the same for the 8-10 years I was NED. We can, together, be angry about the "Pink Ribbon Culture" and how the research funds are or aren't distributed and the face that celebrities put on breast cancer. That is, I believe, what this post is about, and we share those frustrations with many others, men and women, who have never had cancer.

    However, when it comes to fighting mets, I have quickly learned that treating symptoms to grasp another ten years, two years, two months and knowing there is no cure in sight, is a very different thing. What has amazed me most about the online breast cancer community, and most especially #bcsm, is that it is the first group of early stage survivors I've found prepared to embrace everyone on this journey, even at the risk of their own loss.

    AnneMarie...thanks, as always, for your special way in getting to the heart of the matter!

    ReplyDelete
    Replies
    1. Lori,

      Thanks for validating my words with your thoughts and your feelings. Together----that's the way to get things done. Together. There are many different diseases under the breast cancer umbrella. Who knew? Certainly, not me until, like you, I was told "lobular carcinoma."

      Skewing statistics is terrible. Technically, you are a five year survivor. To that I say, BullSHIT with the statistics and this is why we need to replace awareness with true understanding and education. The population at large is being sold a bill of goods, fed less than half truths and presented with a bucket of carefully crafted words. None of this helps.

      It's time for those of us who are the supposed "beneficiaries" of the pink ribbon to raise our voices so everyone understands. I do stand beside you. Frankly, I am not interested in learning that "we can administer this chemo at two week intervals rather than three week intervals" to minimize the time of active treatment. We are spending funds to find ways to cut treatment times (among other things) rather than spending funds to control and stops mets. Reducing treatment time is more important than extending life? I think not.

      Love to you.....

      Delete
  3. Cancer is very harmful diseases for health. It is a tumour type diseases. Cancer 4 stage in risk is very higher level for the patient. These reason than mostly people are dead for cancer disease. This is useful information share.


    Stage 4 breast cancer

    ReplyDelete