Hi Nancy, brillant post, you’ve asked some great questions. I agree with you on the fear part. The fear of mets is what keeps me up at night, but it doesn’t stop me from reaching out to others with it. But, our perspective is different. We’ve crossed over into cancer’s reality. For those that haven’t, I can only guess they turn away from mets patients so they can avoid the evitable outcome. They don’t know what to say or do, so they do nothing and the mets patient suffers in silence.

I don’t think the pink ribbon culture intentionally avoids mets patients. It’s more like having blinders on. They’re just so focused on portraying the early stages as beatable, they never look past that. Too bad, of course, ultimately mets is what everyone is trying to beat and that should be front and center. How do we get it out there? What can we do? I wish I could figure that out. xoxox

Lovely and thought provoking post. I have to think on it for a while. Like you, I lost my mother to metastatic breast cancer, and one of my greatest fears is developing it. Now that I have breast cancer… well, it’s hard not to think about it.

I think we have a hard time in our win/lose culture finding a place for metastatic breast cancer and so we shove it under a rug isolating those with it, and making them feel like failures. But they aren’t. I have to think more about this, but I thank you for raising this issue – it’s really important.
All the best <3
Elaine

Nancy, you ask some very pertinent questions here. Having so recently lost a dear friend to mets – Rachel – I have now seen the reaction when I tell people my friend died, age 41, of secondary breast cancer. They are shocked, of course, but I wonder if some of the shock is because breast cancer has become a disease that we ‘beat’, where we are ‘survivors’… and dying does not fit into that concept?
As Stacey points out, mets is what we all fear, it’s what will cause death… so why is it a subject that’s not discussed?
It is wrong that mets patients feel so isolated and I welcome you starting this dialogue to include them. Thank you.

Excellent posting, Nancy. You raise some important questions, and I don’t know if there are any answers, but I do know that people with metastatic breast cancer get swept under the carpet because society favors the feel-good stories of the survivor rather than the reality that the survivor may not, in fact, survive, and the fact that so many people are dying of breast cancer.

It’s an epidemic.

I think what can help people with mets cope better and make them feel less lonely is to be a good friend to them. I was a good friend to a person who died of breast cancer mets, and I’m being there for two people whose lives have been turned upside down by cancer that has spread.

More attention for people with mets is in order.

Great post!

You’ve been promising to write this post for some time now … and what a terrific job you did..and I would say that you have every right to write about it after the experience with your Mom..but also, as you so eloquently put it..we don’t necessarily have to have gone through an experience ourselves to be able to have empathy with those who do. There are many things in life that are lonely isolating experiences and knowing people will listen and care is very, very important. Thanks for caring like you do.

Nancy, such a great post! “It’s not wrong, it’s just not right enough.” That sums it up alright! It really does come down to right and wrong, to black and white. Catch BC early, you got it right [cue the happy pink]; get mets, you got it wrong [cue the sound of a door being closed].

What Elaine says above is very true: As a society we have a win/lose culture. Early stage/late stage falls into that judgmental abyss.

Early stage cancer equals hope; late stage cancer equals fear. We gotta eradicate the fear by doing exactly what you (and so many other fabulous bloggers) are doing: Addressing late-stage BC head on, changing the discourse, putting the issues front and center.

By talking, talking, and talking some more, the fear will slowly dissipate. The more we read about late stagers like Ann (and Rachel), the less afraid we all become. It’s kinda like the AIDS/HIV crisis; compassion prevails. We’re just not there yet.

Nancy, a stellar post. That sound you hear is me applauding. xoxo

Ditto what everyone said….. Cue the applause….. ROARING applause. I’m on the bleachers with all the other fearless friends. What the world doesn’t realize? WE are moving from the cheap seats to the seats of distinction flanking the podium. My voice will not be silenced. Yours will not be silenced. None of us who are determined to be Fearless Friends will be silenced. It’s getting very noisy. We owe this to each other, to our sisters with mets, to those whose voices have been silenced forever and to the next generation….. if we can change the conversation, it is incumbent upon each of us to do our part. You do yours beautifully, Nancy.

Wow…excellent post! Thank you Nancy!

Thank you Nancy, it is a tough discussion. I’m living with metastatic BC and I grieve daily for my kids and for my lost future. Having MBC is like being in a tunnel that keeps getting smaller as your options narrow. I did read Ann’s post and found it very true of my experience as well. I despise the perky positive messages put out by fundraisers about how we are going to cure cancer, not likely since only 2% of research funds go to metastatic disease. How can you cure something when you don’t know what causes metastatic disease and how to stop it? Since 30% of women with primary BC go on to metastatic disease it is in everyone’s best interest to talk about it more and push for better research.

Excellent post Nancy. I think fear plays a big role; I lost my mother to the treatment of mets and too many friends to the cancer or the treatment. Fear certainly plays on my mind, everyday.

Difficult questions. Pink is not about mets, it is more of a cheerleading squad, one that is not rooting for the right team. How many stage 1′s have morphed very quickly into stage IV/mets. As was said, we need to bring more awareness to this, to the fact that even when “they got it all”, in 25% of the cases, there are still lingering cells, cells which defy treatment or are even encourged by it as we decimate the immune system. The “fun” and “feel good” of cheering for the easy team, instead of being out there fighting for the answers we all desperately need. Recurrence and escalating stages should be proof enough that we need help, not fanfare.

This is very strong and very true, Nancy. BC organisations doing nothing about metastatic BC are not really BC organisations at all. They are part of the problem, not the solution. And it’s time for them to change or get out of the way, in my opinion.

To read Christine’s sentence ‘Having MBC is like being in a tunnel that keeps getting smaller as your options narrow’ is beyond heart rending.

This is wonderful, Nancy. So passionate and clear. Thank you.

I am legally blind so I am very used to the limitations on mobility and isolation at times. I try to keep the philosophy “Don’t die before you’re dead”. I do agree that the pink ribbon culture is well meaning but isn’t helpful to the most vulnerable.
My husband is a cancer survivor who had lymphoma and was very sick so I am lucky that I have a partner who has been there.

Reaching out to others like ourselves offering our unique insights is also helpful, in my view, giving and receiving by the exchange.

Hugs to you all and thanks for sharing.

Nancy – thanks for your comment here… I was astounded to read this:

“People don’t really die anymore from breast cancer.” And this was from a health care worker!

I wonder what ‘don’t really die’ means?! Women do die of breast cancer. Fact.

Thanks again for this post.

Great post, Nancy. I know so many women who feel isolated but who are scared to talk about their diagnosis or feelings because they don’t want burden or upset their loved ones. Thank you for writing this powerful post.

Nancy, this is an incredible essay, and thank you for sharing the words of those who are living with, had lived with, metastatic breast cancer. I agree with you completely, that “if we are not aware of metastatic breast cancer and the needs of all those living with it, we are not aware of breast cancer at all.” We are the most UNAWARE of breast cancer now that we have all this awareness. The irony is unsettling, tragic, and infuriating. We can and must change this. — Gayle

Nancy, good thoughts that need to be voiced. Your words really bring home the ironic aspects of pink ribbon culture: it fosters this sense of ‘you’ll be fine’ if you’re diagnosed, but turns its back on you when you’re not. At this point, I don’t really know who it’s serving. I’ve never been diagnosed but if I based my knowledge around pink ribbon culture, I really wouldn’t need to be that proactive about my health or educating myself on the disease. And if I was diagnosed: doctors have it all handled and treatment isn’t that bad anyway. Hah! While I can appreciate the good that it has done and the support it has provided to thousands of women, the message is now screwed up and hollow feeling.
Consequently, I have never had BC but went through breast cancer and a metastasis with my mom who is, very fortunately, a happy ending story.

Wow, so well said. I think the “pink ribbon culture” does intentionally exclude those with mets by excluding anyone who has real thoughts and grief about their diagnosis. There’s this expectation of relentless positivism and prevailing over all, but many people (most?) who face mets have to deal with some really hard truths. Hard truths are not allowed in the pink ribbon culture. Even though I do not have mets (as far as I know) I felt isolated when in treatment because I was not able to put on a front of relentless positivism. I could see how its that much harder for those with mets. I’m so glad that I’ve found your blog and the network of women who feel the same way I do.

Thank you, thank you, thank you for bringing mets to the forefront. What a fantastic post!
Thanks to the pink ribbon culture, I had not even heard of the word metastatic until I was diagnosed with bc (mets detected a week later). I sure learned a lot in a hurry.
I am thankful to be responding well to treatment thus far, but there is a very real fear lying just below the surface that only a fellow metster can understand. It truly is “an odd feeling to be mourning your life while still living it”
I think that we definitely need to keep talking and educating. With so many “reality” shows on tv, it is time to bring reality to real life.
Let’s get noisy!!!

Thank you so much for this post. I was diagnosed with metastatic breast cancer at the age of 29. I am grateful for the amazing support network of family and friends that I have. However, this disease – particularly for those of us that are very young – can be extremely isolating. It has been very difficult for me to relate to early stage survivors – as they cannot possibly understand what living with mets is like. It’s also sometimes hard to relate to women with mets that are twice my age – they were able to have children and raise them – they were able to have a career – move into their dream house – have many years with their spouse, etc. I am trying my best to educate others and advocate for all of us living with metastatic disease and I cannot thank you enough for doing the same!

Thanks, Nancy for your very thoughtful and insightful post. I posted a link to it on the MBCN facebook page because I think a lot of our metastatic members will identify with it and draw strength from your commitment to change the pink ribbon culture. We are trying to put a more realistic face on metastatic disease and dispel the misinformation that the media and the pink ribbon culture has fostered.

Thank you very much for your powerful and insightful article. I too have been living with metastatic breast cancer for nearly two years and can relate to the double life, fear of the known (death) yet unknown (when), at the same time hoping to beat the odds with a long and productive life, mourning my previous (wasn’t it just yesterday) life while still living it, not being able to truly talk about it because most people just really don’t understand advanced bc. These things are all too true. I agree that it remains a very misunderstood stage of the disease and that all the glitz, glamour, and happy pinkness in the month of October isn’t really is true reflection on the realities of advanced breast cancer. Personnally I’ve come to hate October and the constant bombardment of media ads which only portray a small portion of early stage disease success stories. Every commercial, every newscast only serve as a constant reminder of something that is already difficult to live with on a daily basis. If it were tempered with true education/information on the disease as a whole I don’t believe there would be nearly the amount of resentment felt by apparently quite a few of us.

I’m Liberty’s mom, and I have such compassion for you! Breast cancer has so many dimensions. The average person thinks all breast cancer is the same. They don’t understand the difference between a stage 1 or 2 diagnosis and a stage 3 or 4 or a metastsis or recurrance. If you pick up a magazine in the oncologists office, you see pictures of women, some with and some without hair, but they look well, healthy – like they feel good. Cancer has to look good, afterall they are selling treatment. They are not focused on prevention, surviving treatment or helping us survive the long term. The pink ribbon campaign is just one of the “wrongs”. Research dollars funded by big pharma aimed at finding a drug that will impact a cancer cell but nothing to prevent. The over treatment of many women who have a “easier” diagnosis – this did not used to happen and the stats don’t support the treatments used on many women – mastectomy (many times a double mastectomy), raditation and chemo used for a localized cancer that can be surgically removed and has not spread. They say it is “chemo – prevention”. If you have had a met, you know that once you shoot the radiation and chemo bullet, it’s spent. They have come up with new chemo drugs, but the old stand by – adriamycin – the red devil – is still the most effective for many BC’s and you can only take it once. If it is used as a prevention, if your cancer comes back, you have limited your choices. Tissue can only be radiatied once. After having been through BC twice, 3 years apart, surgeries, radiation twice and chemo, I have learned a lot. The newest research finds a cause of BC (and others). Fungus. It is present in grains, many nuts, corn and antibiotics! How many antibiotics do we have during the course of treatment? A lot! Many times scientists cannot tell the difference between fungus and cancer. Doug Kauffman has substantial info on the fungus/cancer connection. The doctors don’t know about this and some that do don’t want to help cancer patients with fungal treatments, it would cost them business – money. There are many things wrong with our current system and it will take women like you to talk about it, share it and bring attention to the serious side of BC – metatastic being one of the most serious. The medical community will change, but very slowly. It needs to hurry up – women like you are too precious to lose. I wish a group like Komen would get on board, the reality of metastic BC would come to the surface and they could put their research dollars where it would make a bigger difference. My prayers will be with you, Trudy

thank you so much, for your eloquence and understanding. It hasn’t even been a year yet when I felt that lump and thought “no problem, breast cancer isn’t fatal anymore”. Indeed, many tell me that same thing until I tell them about Stage IV. Most then become very uncomfortable…few are able to say something not offensive to the patient…most don’t know what to say. We don’t know how to talk about the inevitable end of everyone’s life and when confronted with someone with a more defined calendar-they have no ready reply. In Spain there’s a comercial with a young woman explaining her panic when dx with bc and how she beat it and how she and her family are now happily out of the shadows…and I find it offensive because it totally and absolutely ignores the rest of us, does very little to truely educate the public and projects a false sense of security-(everything is taken care of with early dx etc) We need to be talked about!

As always, you captured the irony completely, Nancy. I’ve not commented previously, but I’m a regular reader of your blog & FB page.

I’ve never been comfortable with pink culture and resented being swathed by it when I was diagnosed 3 years ago. While I’m grateful to have received an early stage diagnosis, I met several women along the way (mid-30s) who developed mets and two of them sadly passed away. That is both tragic and sobering and it only intensified my growing animosity towards the pink ribbon and all that it represents.

Having become a little vocal on the heels of the Komen funding fiasco, what struck me was the over the top behavior of Komen’s supporters who have NOT had BC. Their behavior is the most alienating of all as they are drunk on the pink Kool-Aid (apologies to Kool-Aid) and only perpetuate the perception that BC is pink, frilly, and in some cases sexy (heaven forbid)!

It just boggles my mind how clueless and ignorant people can be and think that swathing someone newly diagnosed in pink will ‘make it all better’. That said — you articulated it very well. Even someone who has had BC cannot truly know how someone with mets feels and by the same token, I’m guessing that these overzealous women can’t possibly understand being diagnosed and they are just trying to help. But sadly, they’re not — and instead, only deepening the divide in a mission that should be uniting women, not isolating them based on the severity of their diagnosis.

I hope that came out the right way — but I think it’s an injustice and the more I’ve learned, I know that many other early survivors share this sentiment and are at a loss as to how to put this pink genie back in the bottle.

Anyone who has had BC is (unfortunately) at risk of developing mets at some point, and that is frightening. All the statistics in the world are meaningless because there is currently no means to test or prevent it and if you’re on the wrong side of the statistic, that’s all that matters.

It saddens me to hear that women feel so isolated and I hope we can all begin to change that reality and the dialogue.

Thank you so much for pointing out my post. I did know that I spoke for a lot of women with metastatic disease when I wrote that.

Part of the reason that we feel so isolated is, as you pointed out, we are not supported by the breast cancer community itself. No, the pink parade is not for us, and the money doesn’t flow to us. But also, within our sisterhood, we are ostracized. We cannot go to support groups because we scare the early stage women – we are their worst nightmare; forever in treatment until we die. Online support forums, like breastcancer.org, while having a Stage IV section, allows all to post there, which does not allow us the privacy we crave. We are subjected to comments and questions, sometimes ones that imply we have done something wrong to be Stage IV.

Other forums mix all the stages together, yet there is a big difference between being afraid you are going to die, as all women with breast cancer are, and knowing you are going to die.

So, we are alone, or we are in the gaze of critical others who are inspecting us to discover what we did wrong so they don’t do it – ignored. We are living in the hardest place, between life and death and nobody will support us as we do it.

I am working on a place where metastatic women will be able to go and talk among each other. While all will be welcome, there will be a sacred space where we are allowed to share our fears with each other, without criticism or complaint and where nobody can post without the diagnosis.

So far, I’ve created a forum at http://www.butdoctorihatepink.proboards.com but it is very new and we’ll see if the women who need it – metastatic women, can find it.

Thank you for a compelling post, Nancy.

Nancy you have hit the nail right on the head. I have MBC with mets to my spine and live in constant fear of the unknown.
Ever bewildered by the fact that the world gets so upset by the relatively few soldiers that die in the various war zones while simultaneously ignoring that more than 40,000 people (in the US alone) are allowed to die from MBC annually.
Pondering this thought I was reminded how well the AIDS people were able to raise awareness to their plight… it occurred to me that we need to be more visible and I wondered if perhaps we should all take our tops off and demonstrate bare breasted in the streets. I then thought that while that would certainly catch attention some may be shy and others offended. SO I thought perhaps we should photographs some breasts (could be our own) and transfer then life size or even bigger onto a Tshirt with the slogan something like “HELP PLEASE These babies are killing me!!!”

We need something as attention grabbing, MBC has been ignored by the Pink Campaign so we need to fight for ourselves.
Articles like yours go in the right direction BUT we need to get in peoples faces and make them listen.
Thanks for your article…look out for bared breasts =)
Jo

Thank you for not being silent!
I believe some of the isolation women living with breast cancer experience is the result of the hopeful pink spin being marketed out there. When a disease is celebrated, something has gone terribly awry. How exactly do we celebrate metastatic disease? It’s the mirror no one wants to look at for fear their reflection is there. Even the data collectors count only the diagnosed and the dead, never those living with it. Exactly how more invisible can it get?

Yes, yes, yes and YES!!! How can our focus not be on those who are Stage IV?!!! I’ve survived my treatment for a lesser stage breast cancer (for now), but how could part of my “new normal” not be screaming as loud as I can to find the cure? It’s not right that one more person should die of breast cancer–or any cancer. Let’s go; cure any of them, and we’ll cure them all. Cure NOW!!!!!

Nancy again we seem to be in the same page in many ways. It has taken me several days to write my blog because of emotions getting in the way… I do think of METS. in fact frequently due to my poor pathology reporting during the time my breast was not preserved after surgery.
I can’t say how anyone feels I didn’t know anyone who had Mets apart fromm my girlfriend that died rather quickly after giving birth to her 3rd daughter.. I’m the first and only one im my family to have breast cancer. But for myself over these last three years I do know these women have more courage, a fighting spirit like no other they have my admiration and love.

Nancy, kudos to you for giving a voice to those who don’t have one, and even those who do. It’s amazing how isolated people with mets feel, isn’t it?

I can’t tell if the pink ribbon culture deliberately ignores the plight of those with advanced breast cancer–or if they are hopelessly ignorant. But whatever the motivation, the pinkwash sentiment really has to change.

I don’t have mets. But I do believe that many of the folks with mets are forgotten because people don’t know what to say. Instead of saying the wrong thing, they say nothing. Also, it’s too uncomfortable for many with early-stage cancer to think about those with mets: it reminds them of their possible fate.

I remember my spouse advising me to quit a breast cancer support group in 1999 because it was too depressing for me (one person had died and another had been diagnosed with lung mets). This goes to show that some people may shun those with mets because of pressure from a partner or other loved one. It may not even be the patient who is in denial.

Great post, and great ensuing discussion. On behalf of all of us, thanks so much. xxx

Terrific post, Nancy. My understanding of breast cancer was (I’m ashamed to say) very much ‘pink washed’ before I was diagnosed. I do think there’s a very real danger that ‘pink ribbon culture’ disguises and minimises the reality of metastatic breast cancer. Thank you for directing me to these posts.

Thank you Nancy, just thank you for a beautiful written post that illustrates so well the divide between the rah-rah survival sisterhood that the public persona of breast cancer has become and the reality for those of us living with metastatic disease.

Just popped back to your post Nancy to read some more of these wonderful comments – wow you really got a response with this one!

I have recently learned that I have metastatic BC. I am feeling fine and of course seeing an oncologist. But it is lonely even though I have the support of family and friends.
As I am not feeling sick, I go along as if nothing is wrong and then a little voice says well you have a disease. Wonder how am I going to die, not wanting my family to see me dying etc.

I goo shopping and then think do I really need this maybe I won’t be here to use it, something for the house..well just another thing my husband will have to get rid of. It is a very strange feeling.
As far as care….they are just doing things to keep you alive longer (which I appreciate)
I wrote once in my last journal “everything is different, yet nothing is different”!! I have never liked the pink stuff. I said once “how do you know if you are a ‘survivor’ and was told I was as I was taking care of my cancer I guess.
Thank you for all the postings on here..I appreciate it. I don’t think I made a lot of sense but at least I was able to share some of my feelings to those who will understand..God bless you all!!

Like Maureen, I too have found out this year that I have metastatic breast cancer. I have had cancer twice before over the years,(breast and endometrial) but for some reason never thought it would return. I suppose I just didn’t want to ‘go there’. I lost my sister in 1994 to this same disease. I also have the breast cancer gene, which I suppose she likely did as well. I am thankful that I found this blog and the people here who are writing such heart-felt posts. This is a very lonely experience, but I have wonderful support from family and friends that I couldn’t do without. My husband and I are finally going to Paris….a place I have always wanted to go to. We are going next week and I can’t wait!! It’s my little piece of GOOD news after dealing with a year that has been total hell in so many ways. I often wonder why this is happening to me. Such a surreal experience and so incredibly scary! But, I am also keeping a very positive outlook, (when I can manage it!), and am keeping my own form of hope alive! Meditation, journalling, prayer, and reading spiritual books by people like Carolyn Myss and Wayne Dyer have helped me immeasurably. I have my second bone scan tomorrow so I am hoping for a good result. All the best to everyone here and thank you to Nancy for this blog!

I really could relate to this post. I also get so upset when people don’t realize that we have not had much progress when it comes to the death rate from metastatic breast cancer (MBC). In 1991 there were 119 deaths a day in the US due to MBC. This year it is expected to be 108 deaths. That’s one death in the US every 14 minutes. This is unacceptable. The public perception and lack of knowledge about the truth of breast cancer has got to change. Thanks to social media and blogs like yours we have a chance of seeing a change. Thank you for this wonderful post.

Thank you for using a part of one of my blogs in this. Red faced that I didn’t see it the first time I read through, when you wrote it! I am reposting this today, MBC Day, 2012.

Nancy, you used “women and men” back in April! And then when I re-read in October I still didn’t notice it. You rock!

Thanks for re-sharing this today on FB. Thoughts have been swirling in my head along this vein.

This is an excellent post. As a pre-vivor of hereditary breast cancer as well as having 9 women in my family and 3 girlfriends diagnosed it is a subject that needs to be out in the open. Out of these 14 women only 4 our alive today.

Many people don’t know what to say nor how to approach someone with metastatic breast cancer. It’s a pink elephant in the room. You actually have to face your own mortality. People in general are uneducated in how to do that.

The Pink culture has focused on early detection and awareness. They have done a great job at it.

Now it’s time to take the next steps and address other issues. Specifically metastatic breast cancer. How do you live life all the way to the end of life? How do create healthy mindset to do that?

We get empowered, and we stand in that power.

We are not born with a toe tag that has the date of our death written on it. However, we can create a life tag. Even in difficult, challenging and painful times.

So, I say life tag and untie the toe tag. I say thank you pink, a job well done. Onto the next task of taking metastatic cancer out of the closet, into the open. And last but not least put some actions and energy into it.

Wow Nancy I just read this over again and it’s just so well written. You make so many important points about metastatic breast cancer. The MBC community should never feel that they are in a tunnel and I think it’s so important that we continue to speak up and be vocal. I also understand your points about the difference of having early stage breast cancer and MBC on top of all the sadness that comes for you having your mother die from the disease. I too am haunted by having watched and been with my best friend as she went through treatment for MBC and died a year and a quarter ago. There are other deaths that have also happened that have really upset me, and so many fearless friends with mets. We must do everything we can to make sure they not in a tunnel, and change the awareness away from the pink culture mistakes of the past plus the fact that so many well meaning people are not aware about the truth involved with this cruel disease.

Excellent post Nancy