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
MBCNbuzz 
Well said Honey !
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.
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.
Rita, Did you have chemo? What has been your care/approach in the years since you became stage IV, it moved to your bones? My mother just received this diagnosis, and we are very uncertain about whether chemo is worth it for her (she is 67…but in excellent health..otherwise). Thanks, Tara
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.
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.
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
Thanks Carol…..for saying that…even though I don’t know you I found it comforting somehow as so many of my friends with and without BC have disappeared from my life since my initial diagnosis (at stage IV at age 39). What I find most disconcerting is that because I don’t “look” sick….people seem to think my life is a breeze despite bone/liver mets since I am not bald from Xeloda. Some have even gone so far as to question whether I even have BC and think I am collecting SSD because I don’t WANT to work. There is nothing I would rather do as I was about to get my first teaching job when I was diagnosed and I miss working with the kids so much! I don’t want sympathy but acknowledgement and understanding of the physical limitations I have as a Stage IV survivor, which are mostly invisible, would help!
Lisa, please reply….I would love to get in touch with you! How can I contact you? Maybe I can help…vice versa 🙂
Ani….I’m hesitant to put any personal info here…..can’t figure out just how to connect privately…sorry but too many trolls out there! Any ideas on how to?
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.
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.
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.
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.
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.
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.
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.
‘
I agree. Also, the statistic that I know is that 30% will become metastatic. Have you heard 20%?
I think I have heard 25 to 30%; 20 percent is probably too low…
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
http://hashtags.symplur.com/healthcare-hashtag-transcript.php?hashtag=BCSM&fdate=03-19-2012&shour=18&smin=0&tdate=03-20-2012&thour=19&tmin=30&ssec=00&tsec=00&img=1
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!
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.
Oddly I have not seen Giuliana, probably because I religiously avoid those BC talk show sound bites…they are just noise to me. It’s not that I don’t sympathize with early stagers….my older sisters and my mom all were treated successfully….but I worry every day that they will have a recurrance. I know the statistics and can’t fool myself into thinking they are in the clear. I just wish those with Stage IV were more represented in the media and all around. As far as make a wish for clothes, I am glad I did not see that…I would have punched the TV! How about make a wish for money to pay medical bills for basics like food, toilet paper, rent….so many women are bankrupted by this disease and are forced to seek government support. Having worked my whole life, this was and is humiliating. The current climate if the health care debate scares the help out of me on a daily basis! I run out of money for food every month despite having food stamp assistance…and I am lucky enough to collect a moderate SSD income because I did make some good money in my 30s for a few years. What about all the low income women already living in or forced below the poverty level (I hover just above it). That’s the reality of even many women with an early stage diagnosis. When you live paycheck to paycheck as so many do…this disease changes the entire course of your life! Struggling with treatment in an environment that offers little in the way if assistance in how to get financial help…including figuring out the complexities of health insurance and public assistance is so fairing! This is an area where more resources and support are needed, no matter what stage of diagnosis!
I hate my keyboard..it constantly “corrects” me inaccurately inserting wrong words…anyway you get the point.
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
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
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.
I am so sorry. I’m new to breast cancer. It came in November, and so I am quickly learning its language and its politics. There’s more to learn every day, especially when I find myself having to go beyond the surface to get the truth.
I don’t want to return to the life I inhabited before my diagnosis, because that would mean returning to a place where, shockingly, one kind of cancer has actually been chosen over others – for more attention, for more research dollars, for more social ‘acceptance.” So I am here to help.
It was so moving and powerful to be part of the #BCSM tweetchat on Monday. It truly opened my eyes to what is essentially a humanitarian crisis. I firmly believe that the only way to force a change of mind, nationally, is to first change hearts. With stories, one at a time, and unrelenting pressure on those who have the power to make decisions about our health.
I will do what I can to make sure I tell your story and the stories of the women of the Metastatic Breast Cancer Network.
We need to make a huge ripple.
yvonne
With no family history, no positive genes, I was dxed with stage III lobular triple positive breast cancer at 29 and mets at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours one day being interviewed for a video they do about the honorees breast cancer story. My onc selected me bc when I found out I had mets, everyone I knew from working in a hospital and covering oncology at times, had died quickly it seemed. She said because the ones doing well just go about living their lives. I wanted to show people that was true.
Komen edited out every reference to my mets in the video. If that isn’t pink washing I don’t know what qualifies. That experience was March 2003. I’m still here with mets to stomach, ovaries, pleural lining now with effusion, adrenal gland and countless lymph nodes. Just started seventh chemo regime yesterday. But you know what I’m still here, still living my life as a mom to a wonderful 11 yo son, wife, daughter and friend.
With no family history, no positive genes, I was dxed with stage III lobular triple positive breast cancer at 29 and mets at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours one day being interviewed for a video they do about the honorees breast cancer story. My onc selected me bc when I found out I had mets, everyone I knew from working in a hospital and covering oncology at times, had died quickly it seemed. She said because the ones doing well just go about living their lives. I wanted to show people that was true.
Komen edited out every reference to my mets in the video. If that isn’t pink washing I don’t know what qualifies. That experience was March 2003. I’m still here with mets to stomach, ovaries, pleural lining now with effusion, adrenal gland and countless lymph nodes. Just started seventh chemo regime yesterday. But you know what I’m still here, still living my life as a mom to a wonderful 11 yo son, wife, daughter and friend.
Kelly
I have read and reread your post. I am so sorry.
I personally pledge to you that I will do my part to “edit IN” your story and the stories of those who live with metastatic breast cancer.
I am dismayed by Komen’s treatment of you. I am dismayed to know that I didn’t know about mets until I joined a tweetchat last Monday evening. Now I know better, I will do better …
yvonne
You go girl!
Thank you so much for speaking out on behalf of those of us with MBBC. I get so tired hearing about the “hell” that these celebrities have had to go through in dealing with ‘a diagnosis of cancer’ after finding a small lump and having it removed. Whatever! I’m sorry for not being more compassionate but this happens with a lot of brave women and you don’t see them whining about it. The real heroes are those fighting MBBC, TNBC, IBC, etc everyday of their lives never knowing if they will conquer the beast!! Our lives will never be the same and we will never be able to enjoy the status of “survivor.”
Keep up the fight my brave sisters!
Cat
Thank you
I was first diagnosed in 1996, went through surgery, 6 months of chemo, and 5 years of tamoxifen. I thought I “made it out alive” when diagnosed as Stage IV in May of 2007. I am now one of the many living on the dark side of the pink ribbon, as I call it. I don’t begrudge anyone how they feel or choose to live with their diagnosis, no matter the stage. What is distrubing to me is that I choose to live with my disease but good information is a struggle to find because my reality is not glamorous or pretty. I would urge every woman to take care of yourself and keep one step ahead of this beast.
Gigi
I so applaud this discussion! Several years ago I worked for an insurance company that was invited to have an info booth at the mall on the day “Walk for the Cure” packet pickup was scheduled. Our booth was in center court of the mall and as people walked toward center court and recognized what the information booths were about they would then avoid center court, walking around in the outside area. That is how I feel when people find out I am being treated for Stage IV mets to the spine. People talk about the weather even thought nothing can be done about it, but don’t want to talk about BC – especially Stage IV even though something can be done about it. Just talking helps patients deal with it, and talking can get the info out that more research needs to be done.
Susan
My friend Irene died 6 years after diagnosis of ‘early stage’ breast cancer-she was considered a ‘survivor’ because she made it beyond 5 years. My daughter, Chris, was rediagnosed with metastatic breast cancer after 6 years-she is considered a ‘survivor’. When she went to a Breast Cancer Support group meeting in her area, the women present were ‘shocked’! ‘shocked’! that breast cancer could come back after the initial treatment (every physician had told them they were ‘cured’ after the initial treatment). The women present sort of ‘shunned’ my daughter after that meeting-she never went back. THERE IS NO CURE TO THIS DISEASE! We who have it live with it every day of our lives.The physicians should emphasize follow-up checkups and to be alert to symptoms of reoccurrence-I still see my oncologists 14 years after breast cancer treatment. I am thankful for the new research drugs which are being used to treat my daughter-she never gives up & is a HERO in my eyes, not some young
TV star!
I am a woman who has lost friends to MBC. I am a counselor who wants to support my clients who are living with MBC. I am a researcher who wants to identify ways to best support women living with MBC while we pursue funding for a cure. What are the questions that you have NOT been asked? What information needs to be told?
I am listening…
Women living with MBC have been given a death sentence. The question needs to be asked—why does about 95% of research money goes to prevention and early stage BC. We need desperately to find a cure. About 152,000 women and men have MBC with that number projected to be 164,00 in 2015. 40,000 of us will die this year. Yet most people have no idea what the word metastatic means and how we are the ones no one wants to discuss—especially in the media and especially when celebrities say they are cured.
If BC organizations want to raise monies, of course you talk about successes and not failures. But here we are and we need everyone to know about us.
The women that have primary breast cancer have about a 30% chance of developing MCB. So, you are never really cured of breast cancer unless you die from something else. The oncologist that says after 5 years you are cured perpetuates a myth. Mine returned after 12 years. We would like people to know BC is not pretty and pink. But that is the way it has been portrayed.
We live from scan to scan never knowing when treatments are going to fail us. It is a constant roller coaster of emotions. We get help from other MBC patients, support groups and counselors to get through the terrifying times and to celebrate the words shrinking or stable. The worst is when friends abandon you because they do not know what to say. If you have a metastatic friend, ask them, what do you need from me right now, I am happy to do it. Our needs are many, but sometimes we don’t feel up to talking about it.
Another myth is that MBC occurs in older women. It breaks my heart to see young women in their 20s and 30s, some with young children, facing this.
So we need people to know about us, donate money to MBC research to help us find a cure, understand the pink-washing of BC and that we are not even close to a cure until people stop dying.
I could go on and on, but if you visit our website mbcn.org and you can read about our mission, read the stories of some of our members and see how much we need our voices to be heard.
Thank you Deb for spelling it out, especially for indicating that many of us are diagnosed at a younger age than most believe occurs. (I was diagnosed AT stage IV when I was 39.) I even had prior mammograms but that doesn’t guarantee an early stage diagnosis). I know there are some woman much younger than I as well. More support for younger women would be nice…as initially I faced a vacume when seeking out others that shared my experience. That has improved over the years within the BC community but the public remains painfully unaware that this is not a disease that strikes middle aged and older women. Another issue that needs to be publicized is the need for us Stage IVs to have insurance coverage for new, perhaps less “tried and true” treatments like Avastin, which the FDA saw fit to remove from its approvwx treatment
Oops! ….approved MBC treatment list. It saved my life once but now many women who it may help are denied access to it by insurance companies. (Anyone reading this post can simply google Avastin/FDA to get more info).
Six years in before recurrance with Avastin/Taxol at diagnosis….nothing to sneeze at!
L
Breast cancer at any stage is scary. I had stage II cancer ten years ago, node negative and was diagnosed with stage IV in 2010. At the end of 2011 I had surgery which removed a fallopian tube cancer. Sometimes in my breast cancer support group I begin to lose patience with those who have early stage cancer but try to consider that hearing a diagnosis of cancer is frightening no matter what stage. What I would like is for the entire cancer community to remember that being a survivor is not just a name for those who complete treatments and “beat” cancer. For those of us without a cure, we may not get off treatments or beat cancer in the end, but we are still survivors. I am a three-time cancer survivor. I am still here!
[…] fairy-tale-ending type portrayal. It seems every time you turn around another celebrity is putting a “happy face on breast cancer.” In and of itself, there’s nothing wrong with […]
Just the other day I was talking to a friend about the problem with celebrity breast cancer stories. I support these women and applaud their honesty, yet feel they don’t tell my story or the story of many of the almost 300,000 women each year diagnosed with breast cancer.
I don’t hear about these celebrity women fighting with their insurance companies about covering yet another scan or new medication, or about the issues of ongoing treatment.
There are so many books and blogs for women focused on looking glamorous for chemo or how a spa trip can change your outlook after surgery. If I see one more zip-line as metaphor segment, I’m going to lose it!
We need more focus on women like us. Those who fight a daily battle for their lives.
I have always said when I hear a celebrity talk about being diagnosed with breast cancer “what about the “regular women who are diagnosed who are not celebrities”. A few of the celebs that have come out and said “I have breast cancer” have not gone through chemo or treatments that most of us have. They did a big story on Christina Applegate and how she had bi-lateral masectomies. So what. I had bi-lateral masectomies at the age of 34 back in 2001 to ensure the breast cancer didn’t come back. I wasn’t so lucky. 2010 i was diagnosed with stage 4 metastatic bc. I get tired of hearing about the celebrities who are diagnosed. They are not any different than us but yet, it’s a big deal when they have breast cancer.
I agree with Andrea, we need more focus on us who fight the battle every day.
I was just diagnosed with metastatic b.c. in March. I’ve had radiation of my brain and bone. It’s also in my lungs. Anyone who has breast cancer (new or metastatic) has a challenge to face. Granted, metastatic is not something I wanted to hear; however, I’m a fighter…and I WILL beat this. My girlfriend was diagnosed last week with a 1mm tumor in her breast…she’s going to be fine. Her’s was just as devastating to her when she heard the words. God bless anyone with breast cancer, regardless of the type.
I guess I’m not the only that was feeling the same way you were. Even though I’m a tnbc survivor, some of us still have lingering health problems after chemo and radiation and we can be in your shoes at any momemt. My heart is with you.
ok, I don’t understand this letter to the editor. The MBCN is sponsored by KOMEN!!!! And KOMEN uses celebrities for fundraising to tell their stories.
MBCN has never been sponsored by Komen. We are a totally independent organization. We wish that Komen would get the message and support those of us with metastatic disease. However, we are not “survivors” and we do not have a “cure”, 2 of their important by-words. We do not fit their message and have never been supported by them
Komen absolutely DOES sponsor the MBCN. If you go to the home page, look under the “about us” section and click on sponsors. Scroll down and you’ll see Komen listed as a sponsor. I didn’t know this either until I read it in a scientific journal, so I decided to log back on here and check it out myself. And sure enough, it’s true. I am NOT a Komen supporter at all!!! In fact, their practices actually infuriate me. But I don’t understand why they get bashed on this website, when they are sponsoring this website and this foundation. Seems like a conflict of interest.
Your absolutely right. Komen does sponser Metastaic Breast cancer, but only 10 % of the donations collected go towards research for Metastatic Breast Cancer.
Actually, Larry it’s less than that. But my point is that Komen sponsors this website and this foundation. They sponsor the Metastatic Breast Cancer Network. Like I said, I am NOT a Komen supporter. I am far from it. I try to distance myself from them and that’s difficult since I have stage IV triple negative.
Hi and Thank You for your response. My wife and I are not against Komen whatsoever. Any time a persons quality of life can be made better or longer, we are all for that. It’s just that the Metastatic patients, we feel, are just push aside and forgotten about. Very few people have any idea about Metastatic Breast Cancer. Many have never even heard the word, much less know the meaning. All we are trying to do is just let people know that there are other Brest Cancer patients that are just sort of pushed to the back of the bus and forgotten about.
My wife and myself will keep you in our prayers.
Larry
Alamik:
I am also a member and board member of MBCN> We are an all volunteer organization and have never launched large fundraising events. We instead rely on donations and apply for educational grants from foundations, pharmaceutical companies and other breast cancer organizations, such as Komen. Komen gave us an educational grant for our 2009 and 2010 conferences. However, we did not apply for grants for either 2011 or 2012. We have also accepted educational grants from Pharma companies, but we maintain our own independent point of view. There are no strings attached to these grants on our message or what we include in conferences or on our website, just that the grants are spent on what we say we want the money for. In the case of Komen, both grants supported individual scholarships and travel grants for those who would not have been able to attend our annual educational conference otherwise.
That’s a valid explanation. But I don’t understanwhy Mrs. Tincher would even deny that Komen sponsors you at all. In my opinion, that is deceptive.
I am so tired of everyone giving this type of cancer the precedent over more fatal cancer. Breast cancer and prostate cancer are very similar in cases and deaths. Let’s be honest, breast cancer gets all the “chic” people because it impacts women’ and you can look “cool” on the runway wearing pink and saying it is for cancer…blah blah blah.
Lung cancer kills more women every year than breast cancer.
Seriously? Take a look at the comparative funding available and amount of research being conducted for lung cancer vs. METASTATIC breast cancer. In any event, WE are not about taking dollars or publicity away from lung cancer patients. WE are about fighting for our lives. If you are dissatisfied with lack of publicity about lung cancer, speak out and get active where your message will be heard! WE support ALL cancer research! Did you get the part in the article that mentions that breast cancer commonly metastasizes to the lungs? More research with respect to this kind of metastasis will only serve to compliment the research being done for primary lung cancer patients! Working together is the whole point!
Also, you are correct that breast cancer and prostate cancer are biologically similar forms of cancer. Ovarian cancer is also believed to be similar in many respects. Any research being done with respect to one cancer, impacts the other.
As far as being chic goes, I am a stage IV BC survivor. I do not wear pink, nor parade down fashion runways. I lost all my money to my disease and live on social security and food stamps. While I have metastasis at multiple sites, my current chemo has not taken my hair or caused weight loss. If you saw me, you would have no idea how sick I am. I am invisible. I have had people call into question my inability to work and my diagnosis, some have accused me of straight out lying about my disease. There are more and more of us out there, you just can’t see us, or our pain and suffering. Does this have to mean we should continue to be ignored by the
Oops….BC community and the communities in which we live? I can sense your anger, believe me I understand it, but perhaps directing it at a more appropriate target would give you some real peace? We are all in this together. I send you prayers for your health and the health of those you love.
P.S. Gimmeeyourmoney……
Men get breast cancer too, another invisible part of the BC community. I can’t imagine how hard it must be for them!
Hey, if we can get the rich and famous to support our cause using their vanity as a lure,
why blame us?
,a
cancer advocates out in Holywod
Ugh..bad phone..bad, bad
I am sure there are some rich and famous lung cancer advocates out in Hollywood. Go get em!
I just got my pathology report – not that the doctor would even give it to me – didn’t want to scare me – after have a mastectomy – well its Stage III/III lobular invasive bc – 3 nodes infected so far – back on monday to remove the rest – its metastatic – its seems like a death sentence although I’m not ready to accept this – pain in my back for over 4 weeks but the surgeon said I was just imagining aches and pains – it was all in my head – can you believe I still have not been referred to an Oncologist! I bet if I were a celebrity I would have had a bi-laterial in a heart beat – but again I had no choice in the matter the doctor refused to remove both – he said my tumor was 2cm well it was 7cm! All the doctor kept saying is I can have reconstructive surgery – like I care?! I just want to live – the public and doctors seem so superficial – its not about how we look – its about how we feel – and believe me the pain I have had for months and on oxi – is not great – never mind not knowing my future. I want to live to see my 3 kids grow up and have kids of their own. I want to be with my great husband – who is going through hell right now – he couldn’t care less about breast reconstruction or celebrity positive chats – its about keeping positive and fighting every step of the way – these celebs make me sick – I had to listen to Kate and Will – she is hospitalized for morning sickness – I should be so lucky – I had day mastectomy surgery with complications for a removal of a 7cm tumor and breast – and was told there were no beds and discharged 8 hrs after surgery – ended up in Emerg the next day for complications – and oh no beds available so I got to sit with my drain in Emerg with coughing and sneezing patients and wait 8 hours for tests for a blood clot – easy to see its not your condition that matters its who you know and how high up the ladder you are! Oh yes and see if a celeb waits 3 weeks for their pathology results – I think not
! Sharon Osbourne was lucky she got to have a bi-laterial mastectomy without cancer – I had to fight for on mastectomy of my left breast as they would only do a lumpectomy! I paid for the MRI to convince them to do a full mastectomy – but could convince them to do a bilateral to give me peace of mind.