Does Living With Metastatic Breast Cancer Have to Feel So Lonely?

Sometimes I think those of us not living with metastatic breast cancer hesitate to speak out about it for a lot of reasons, primarily perhaps because of fear, but also because we don’t think we have the right to do so. We don’t really know what it’s like, so how can speak out about it?

If you’ve had a breast cancer diagnosis, you have certainly thought about metastatic breast cancer, probably way more than anyone in your circle of family and friends realizes.

If you have observed a loved one suffer and ultimately pass away from metastatic breast cancer, you understand a whole lot, but still you don’t really know.

Until it happens to you and your body, you can’t really know.

This is true of many things in life.

Still, we don’t have to experience something first hand to be empathetic, speak out, become enraged or feel compelled to do something about it.

And I’m feeling more than a little compelled today.

Why?

Well, there is always the experience of my mother in the back of my mind. The memories are always there. Time fades their harshness a little, but only a little. There is much to remember…

On top of my own memories, it’s something else. I’ve been greatly moved by words some “sisters” living (or who lived) with metastatic breast cancer have written.

I’m reflecting on a compelling post I read written by Ann, author of the blog, Breast cancer?… But Doctor I Hate Pink! The post was powerful to say the least. I hope you’ll take a few minutes and read it.

Ann describes how her life feels surreal, almost as if she is living two lives. She concludes her post with these thoughts about living with mets:

“It used to be that cancer took over and we died quickly. Now, we are able to beat it back for a year, for two, or five if we are lucky. But, there is no cure, and everybody eventually does die. This means this new generation of cancer patients must live in a strange kind of purgatory, our brains split between life and death. 

It’s an odd feeling to mourn your life while you are still living it.” 

My friend Rachel, author of  The Cancer Culture Chronicles, wrote an equally compelling post about a year before she passed away called The Well Trodden Path in which she described the incredible sense of isolation that seems to accompany a metastatic diagnosis:

“Living with metastatic breast cancer is a strange  and lonely place to be. Because now there are no real milestones, except the one that no one wants to talk about. There is no definite end to treatment, unless it simply stops working, in which case you move onto the next option. If you still have options.”  

Shelli, who blogs at The Dirty Pink Underbelly, writes about her intense sense of isolation and struggles with depression:

“It hit me this week how awful it is to be in the same rooms all the time and never go anywhere. It’s taken nearly three years, but I’m finally stir crazy. These past few weeks of being sick, the past month or so of not being able to drive myself anywhere have finally made me feel trapped.” 

The fact that these women, as well as so many others, feel/felt alone and isolated is heart-breaking and to me, unacceptable.

This needs to change.

No one living with metastatic breast cancer should feel isolated or abandoned, especially by those who proclaim to be their supporters.

Before this can change, we must ask why do so many feel this way?

Why does it so often seem this segment of the breast cancer community is forgotten?

Why do so many living with metastatic breast cancer feel invisible?

Of course, the diagnosis of a disease that may well be terminal is isolating enough, but I don’t think this is the whole story. I don’t think this is the only reason for the loneliness.

In my opinion, pink ribbon culture is in large part responsible for this feeling of isolation so many of those living with mets feel.

Undoubtedly, the pink ribbon culture has been a vehicle for a lot of good. It has helped to bring breast cancer out of the closet.

However, as almost everyone knows, there is also a lot of discontent today about how the pink ribbon culture has failed women.

Perhaps this lack of attention to those living with metastatic breast cancer is the greatest failure of all.

Pink ribbon culture seems to prefer to primarily portray the feel-good stories. The media has certainly perpetuated this 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 this.

Who doesn’t love a feel good story?

I like them too. I prefer happy endings.

But the feel good stories must also be balanced with a dose of reality; the reality that those living with metastatic breast cancer are probably not living the “hooray pink” life-style. The reality that those living with mets will be in treatment for the long haul and the harshest reality of all; that 40,000 women and men still die from metastatic breast cancer every year.

Why does pink ribbon culture not more fully embrace those who are in greatest need of their support?

It seems we have all failed here. It seems we have all been too quiet.

It also seems to me, until we all more fully acknowledge, embrace and include those living with metastatic breast cancer, we have failed and failed miserably.

As Gayle Sulik, author of Pink Ribbon Blues, surmises:

 “Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is…a disease process that ignites what is all too often a cycle of medical surveillance and interventions…For too many, it will be the eventual cause of death…They deserve better than this, and so do we.”

I say it’s time to bring metastatic breast cancer “out of the shadows.”

Only then will those living with it begin to feel more visible, more heard and ultimately, a little less alone.

Finally, 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.

Do you think “pink ribbon culture” intentionally or inadvertently excludes those living with mets?

If you are living with mets (or know someone who is), do you (or do they) feel isolated or forgotten at times? If so, how can others help to change this?

 

 Photo use with permission via Ronnie Hughes & Being Sarah

 

94 comments


  • Stacey

    April 18, 2012

    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

    • Nancy

      April 19, 2012

      Stacey, Thanks for your insightful comments. Often times the things we fear the most are the things that need to be talked about most. That’s what I find so frustrating. And the sense of isolation those living with mets feel. That’s wrong. It’s like they’ve been left out and not invited to the “pink party.” Crazy.

  • 3laine

    April 18, 2012

    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

      April 19, 2012

      Elaine, I know what you mean. It’s impossible to not think about it at least once in a while isn’t it? You make a good point about the win/lose thing in our culture. Making those living with mets feel like failures is wrong on so many levels, even if it’s done unintentionally. Finally, keep thinking! Your thoughts are always good ones, Elaine. Thanks for commenting.

  • Being Sarah

    April 18, 2012

    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.

    • Nancy

      April 19, 2012

      Being Sarah, Someone commented on my Facebook page the other day that a health care worker made this statement to her – “People don’t really die anymore from breast cancer.” And this was from a health care worker! Incredible. There’s a lot of misinformation floating around. Thanks for sharing your thoughts.

  • Beth L. Gainer

    April 18, 2012

    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!

    • Nancy

      April 19, 2012

      Beth, You’re absolutely right, the best thing to do is to keep being there and keep being there for the long haul. You certainly know all about that. I’m glad your friends have you in their lives. And again, I sorry about your friend, Faun.

  • 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

      April 19, 2012

      Marie, It’s so true, many things cause people to feel alone and isolated. I know you understand that far too well. It’s so sad and somehow ironic that the mets community, perhaps the segment of the breast cancer community in greatest need of support, is so often made to feel invisible. I hate that. We have to care. Thanks for sharing your thoughts.

  • 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

      April 19, 2012

      Renn, Well, I guess we’ll just have to keep talking then won’t we? Thanks for being part of the discussion.

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

    • Nancy

      April 19, 2012

      Kathi, Thank you. Your supportive words mean a lot to me.

  • 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.

    • Nancy

      April 19, 2012

      Ann Marie, The conversation needs to be changed. We need to move beyond the ‘hooray for pink’ mentality, but I don’t need to tell you that! Thanks for your kind words. I’m thankful for voices like yours ‘out there in the bleachers’ or where ever you choose to shout from!

  • Gail

    April 18, 2012

    Wow…excellent post! Thank you Nancy!

    • Nancy

      April 19, 2012

      Gail, Thank you very much!

  • Christine

    April 18, 2012

    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.

    • Nancy

      April 19, 2012

      Christine, Oh my, reading your words is very moving. I’m sorry you grieve daily, but it’s perfectly understandable. “Living in a tunnel that keeps getting smaller as your options narrow,” that’s quite powerful, Christine. You said everything far better than I in that one statement. I’m going to share that on my Facebook page. Thank you so much for sharing such personal thoughts. We need to hear voices like yours.

  • elyn jacobs

    April 18, 2012

    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.

    • Nancy

      April 19, 2012

      Elyn, Thank you for sharing your perfectly stated sentiments. “Cheering for the easy team, instead of being out there fighting for the answers…” that’s a good way to put it. I’m sorry about your mother and I understand about that fear. Thanks so much for adding to this discussion, Elyn.

  • Ronnie Hughes

    April 18, 2012

    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.

    • Nancy

      April 19, 2012

      Ronnie, It seems you and I are in complete agreement. Thanks for your comments.

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

    • Nancy

      April 19, 2012

      ChemoBabe, Thank you for you kind and supportive words.

  • Catherine Morrison

    April 19, 2012

    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

      April 19, 2012

      Catherine, I bet you do understand those limitations on mobility and the feeling of isolation. Your philosophy is a good one! I’m sorry about your husband’s cancer. Is he doing alright now? And you, have you had a diagnosis? I’m not quite sure from reading your words. You’re so right, reaching out and sharing can be very helpful and hopefully lessen those feelings of loneliness and isolation. Thanks so much for reading and commenting. Hugs back to you!

  • Being Sarah

    April 19, 2012

    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.

    • Nancy & Sarah,
      Unbelievable that anyone who’s remotely plugged in thinks women don’t die of breast cancer anymore. Thanks for this remarkable post. Let’s all do our best to keep this conversation going. If we don’t, who will?

      XOXOXO,
      Brenda

      • Nancy

        April 19, 2012

        Brenda, Too many are plugged into the wrong “station” and are getting the wrong or incomplete information. Well, I know you will certainly be doing your part to keep the conversation going. I’m thrilled you are getting a TV slot! When and where will it air? Thanks so much for commenting.

    • Nancy

      April 19, 2012

      Being Sarah, I know. That one surprised me too. And yes, from a health care worker no less. Thanks for stopping by again.

  • 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

      April 19, 2012

      CTCA, You raise a very good point. Often times people with cancer (actually, also those without illness) avoid talking about their true feelings in order to protect others. It’s very difficult to deal with a mets diagnosis as an individual, but also as a family unit. The whole family is so deeply affected. There is a lot of fear involved, but all the more reason to share honestly don’t you think?

  • Pink Ribbon Blues

    April 19, 2012

    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

      April 19, 2012

      Gayle, Thank you for adding your thoughts. I think the quote of yours I used in this post sums up so many things. It’s quite profound. Thank you for your continuing tireless work to bring about change.

  • Liberty

    April 19, 2012

    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.

    • Nancy

      April 19, 2012

      Liberty, That’s a perfect word you used, “hollow.” I’ll have to remember that one! The message has become jumbled hasn’t it? I’m glad your mom is doing alright now. That is wonderful. Thank you for sharing your thoughts.

  • Katherine Malmo

    April 19, 2012

    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.

    • Nancy

      April 19, 2012

      Katherine, There does seem to be this expectation for “relentless positivism,” interesting word choices there by the way. This is fine if and when you do feel positive, but not helpful when you do not. The exclusion of the mets community is really inexcusable isn’t it? Thanks so much for commenting. I’m really glad you found my blog, too, as well as the network of others who feel as you do. Thanks for sharing your thoughts on this important issue.

  • Barb

    April 20, 2012

    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!!!

    • Nancy

      April 20, 2012

      Barb, You are very welcome. I wish I could do more than write a post or two. I think there are a lot of people who have never heard of metastatic breast cancer. That’s pretty incredible when you think about all the “awareness” campaigns out there. Kind of boggles my mind. It’s not just about early detection. All phases of the disease deserve attention. I’m glad you are responding well to treatment and I understand about the fear. Let’s keep talking for sure! Thanks for “talking” here.

  • Meghan M

    April 20, 2012

    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!

    • Nancy

      April 20, 2012

      Meghan, I’m sorry about your diagnosis. It’s terrible to get a diagnosis at any age, but getting one at such a young like you did, does indeed present a whole different set of issues. I’m sorry for all you must face on a daily basis and I’m really sad you feel so isolated despite your good support network. I know I can’t fully understand all your difficulties, but I do care. I admire you for trying to educate and advocate. It seems there a lot of work to do. Thanks for taking time to comment. My best.

  • Ginny

    April 20, 2012

    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.

    • Nancy

      April 20, 2012

      Ginny, Thanks for your supportive words and for posting the link. There is a lot that needs to be changed in the pink ribbon culture. Change is happening, not as fast as we’d like, but I think it’s beginning. We’ll keep making noise. The mets community deserves to be heard, otherwise we aren’t really aware of breast cancer at all.

  • Debra

    April 20, 2012

    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.

    • Nancy

      April 20, 2012

      Debra, Thank you very much for sharing and adding to this discussion. I bet it is like leading a double life for you. That can’t be easy. I’m sorry it’s so difficult to talk about and to have people understand. Do you think it’s because of fear mostly? I don’t blame you for not liking October. There is a lot of misinformation and way to much pink hoopla. And there most certainly is a lack of funding dedicated to metastatic breast cancer research. But of course, you know all this! Thanks for your great feedback.

  • Trudy Samuelson

    April 20, 2012

    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

    • Nancy

      April 20, 2012

      Trudy, Thank you for sharing your thoughts. You’ve been through a lot and yes, you have learned a great deal for sure! I’m glad you are doing alright now. Keep speaking out about what matters to you. We need all voices. Change will come.

  • miriam

    April 20, 2012

    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!

    • Nancy

      April 20, 2012

      Miriam, Stage IV does make people very uncomfortable for a lot of reasons. I’m sorry it’s so tough to find people willing to talk or just merely listen. Sometimes just listening is enough. Just because things are hard to talk about, doesn’t mean we should not do so anyway. Yes, that commercial sounds questionable, so often the whole story isn’t told. Let’s keep talking, Miriam. Thanks for sharing.

  • BlondeAmbition212

    April 20, 2012

    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.

    • Nancy

      April 22, 2012

      Blonde Ambition, I’m glad you decided to comment on this post. Thank you for reading my blog. I appreciate it very much. So much is mind boggling that’s for sure. It saddens me beyond words that the very women who need support most feel so isolated. Something is seriously missing in “pink mania” when this is the case. We simply must do a better job of embracing our sisters living with mets. And it’s so true what you said, no one knows who will or will not develop mets at some point. That message is overlooked in all the awareness campaigns. Thanks for commenting. Hope to hear from you again!

  • ButDoctorIHatePink

    April 21, 2012

    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

      April 22, 2012

      Ann, You are very welcome. Your post was incredibly moving and your message needs to be heard. It saddens me so much to hear you say you feel isolated and that you cannot go to support groups because you are “scary.” To me that’s just wrong. I do blame the “pink parade” mentality for at least some of this “neglect” of the mets community. This needs to change. And getting blamed for being stage IV, well, that’s just cruel, not to mention unhelpful. I’m sorry about that. Good luck with your forum idea. You are doing an amazing job educating many through you candid blog posts. Thank you for writing so honestly about living with mets. My best.

  • Joanna Farrer

    April 21, 2012

    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

    • Nancy

      April 22, 2012

      Joanna, I’m sorry about your mets diagnosis. You make some good points, but I’m not quite on board with your bare breast photo/t-shirt idea. There are countless t-shirts out there with equally countless “catchy” breast slogans that have proved to be totally ineffective as far as bringing more attention/dollars to mets research. Of course, you should do what you feel passionate about doing! Something needs to change that’s for sure. Thanks for your comments. Good luck to you.

  • Marjorie

    April 21, 2012

    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?

    • Nancy

      April 22, 2012

      Marjorie, You’re so welcome. I can’t be silent about this. I completely agree that some of the isolation that is often felt is a direct result of the pink spin being put on breast cancer. Sometimes it does feel almost as if the disease is being celebrated doesn’t it? So the data collectors don’t even count those living with mets? That’s terrible. Thanks for adding to this discussion. I really appreciate it.

  • lopsided_blogger

    April 21, 2012

    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

      April 22, 2012

      Lopsided blogger, More focus definitely needs to be on stage IV. We need to figure out so much… I guess we’ll just have to keep “screaming” won’t we? Thanks for stopping by.

  • Alli

    April 21, 2012

    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

      April 22, 2012

      Alli, How can we not think about it? I’m sorry about your friend. That’s so very sad. You’re right, women and men living with mets do exhibit a lot of courage and they do deserve our admiration and love, but they deserve so much more too… thanks for commenting, Alli.

  • Jan Baird Hasak

    April 22, 2012

    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

    • Nancy

      April 22, 2012

      Jan, You make some valid points. Often people stay quiet out of fear or uncertainty about what to say or do, so they say or do nothing. Also, sometimes appearances can be deceiving and sometimes pressure does come from outside factors/people as you mentioned. It’s just so sad the feeling of isolation that many living with mets so often feel. On top of everything else, dealing with that too, is just heartbreaking. Thanks for your supportive words, Jan.

  • Liz

    April 22, 2012

    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.

    • Nancy

      April 22, 2012

      Liz, Don’t feel badly, many of us (me included) have been “pink washed” in the past. That’s why it’s critical to share what we learn along the way. Thanks for commenting.

  • Jenny (@jaydub26)

    April 22, 2012

    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.

    • Nancy

      April 23, 2012

      Jenny, You are very welcome. That divide should not be there. It just should not. Thanks for sharing how you feel.

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

    • Nancy

      April 23, 2012

      Marie, Yes, the response has been a bit astounding, but then again, it’s not surprising. It’s even more obvious to me now that the points made in my post are valid. Thanks for stopping by again.

  • Maureen

    May 24, 2012

    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!!

    • Nancy

      May 24, 2012

      Maureen, I’m sorry you recently learned you have metastatic breast cancer. I can only imagine what that must feel like. The loneliness factor you and others talk about bothers me so much and is a huge problem I have with the pink ribbon culture out there. Present culture seems to so often compound the loneliness for many. Your journal entry really says a lot. Thanks for sharing your thoughts here and for saying you appreciate my posts on mbc. That means a lot to me. My best.

  • Donna Langlois

    May 29, 2012

    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!

    • Nancy

      May 29, 2012

      Donna, I’m sorry about your mets diagnosis and also for the loss of your sister. I do not know what it’s like to receive a mets diagnosis personally, but I do understand the ramifications of having the gene mutation. I’m so glad you found my blog too. I hope it helps in some small way to make you feel less lonely. Please feel free to chime in at any time. I’m glad you do have support from family and friends. It’s wonderful you are going to Paris! That is truly exciting! Enjoy every single minute. Thank you so much for reading and sharing. Hope to hear from you again soon. My best.

  • Susan

    August 16, 2012

    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.

    • Nancy

      August 17, 2012

      Susan, Thank you for chiming in and for repeating those disturbing facts. It makes me livid when I hear people still saying things like, “No one really dies of breast cancer any more do they?”

  • 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

      October 14, 2012

      Shelli, No need for a red face. Your words were very moving and powerful, they still are. And I probably should have asked you first now that I think about it…Sorry. Thank you for commenting now!

  • 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.

    • Nancy

      December 3, 2012

      Shelli, Well, so I did! Thanks for noticing that, I didn’t. And thanks for commenting again. You rock!

  • sharon

    December 19, 2012

    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.

    • Nancy

      December 21, 2012

      Sharon, Thanks so much for finding this post. I’m sorry about all the cancer in your family. Good for you for taking preventative steps. You make some excellent points. I’m not so sure I’d say thank you pink, a job well done. I think there have been some big mis-steps along the way, but I know what you mean. I completely agree that it’s time to bring metastatic bc the attention/time/energy/dollars for research that it deserves. Thanks for your comment.

  • Susan Zager

    May 20, 2013

    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.

    • Nancy

      May 22, 2013

      Susan, I appreciate the feedback and your kind words. Thank you.

  • Amanda Hayler

    May 20, 2013

    Excellent post Nancy

    • Nancy

      May 22, 2013

      Amanda, Thanks so much!

  • Elizabeth

    July 21, 2013

    Great post, Nancy! You really hit it!

    I feel the “pink culture” led me on and deceived me. I truly thought, from what they at least seemed to be saying, that if I got the “family disease,” I would just get a lumpectomy, maybe some other treatment that wouldn’t be “too bad,” and be on my merry way.

    Well, it works that way for some women, my cousin is one. But, I got a form of breast cancer that is very aggressive and is not detected by what the “pink culture” says you need to do for early detection. I had IBC stage 3. That meant the works – chemo, mastectomy, and radiation, followed by those lovely little “hot flash pills” that make natural menopause seem like a walk in the park.

    Shortly after my diagnosis, one lady at my church walked up to me and said, “breast cancer is nothing. I had it a few years back and you don’t even lose your breast.” By the way, I recently went to her funeral, it metastasized to her lungs and other organs and spread so fast they could not do anything for her.

    That is the failure of the “pink culture,” they are so focused on successes and early stages, that they ignore the women who are diagnosed with advanced disease and the ones who develop metastasis after their initial treatments. They only tell happy endings. I lost count of the people who when they heard I was stage 3 asked me, “didn’t you get mammograms?” It is like they think you only get stage 3 or 4 if you were careless about getting checked.

    And despite the fact that 30% of stages 1, 2, or 3 have recurrences, people somehow don’t seem aware that they happen or think they are very rare. Again, I think that is partly because the “pink culture” puts all it’s emphasis on early detection, rather than stressing the need for a cure.

    One more thing that I don’t think I saw mentioned anywhere above. For many of us with mets, we can keep living for a good while somewhat normal lives between recurrences. We may be dealing with side effects of treatments past and present, get fatigued easily, but overall, many of us can go on for a long time with the cancer not gone, but held in check. People have two reactions to that which really bother me. One is to be afraid of letting you live normally for fear you will overdo or get hurt (usually family members), and the other is surprise if they happen to find out you are still in some kind of treatment since you “don’t look sick.” And whatever do we say to that well-meaning aquaintence who says, “isn’t wonderful you are cured now.”

    • Nancy

      July 22, 2013

      Elizabeth, Well said. Thank you.

  • Elizabeth J.

    August 27, 2013

    I am the Elizabeth who posted above. I got news last week that I am now in remission. I’m happy. I’m grateful. I hope I stay in remission a long time, forever would be real nice. But, I have been warned once it is in your bones, recurrences are common, so there are no guarantees.
    However, it bothers me that so many of my friends and family seem to think cured and remission are the same thing. They are shocked when they find that I still am in hormonal therapy (pills and shots) and that I still will be seeing my doctors so frequently.
    Maybe that is a big part of the problem? People around you assume remission means cured. They don’t realize you live with that threat of recurrence over you.

    • Nancy

      August 27, 2013

      Elizabeth, Some guarantees would be nice, wouldn’t they? I’m so glad you received some good news. We’ll take all the good news we can get, right? And yes, sadly, remission is not the same as cure. We have to keep educating others, so more will understand the big picture – which includes mets and all.

  • Claire

    November 21, 2013

    Your post really resonates with me. I’ve been living with metastatic breast cancer for over 6 years. Ups and downs, but I’m grateful to be alive. This year the NY Times ran a column about people living with BC and invited contributions. Each story was upbeat. One woman whose husband had left her triumphed over that adversity. Everyone else’s story was strong and brave and happy. Sooo, toward the end of Pinktober I ran my experiment. I sent in a contribution which was deliberately downbeat. No great life lesson, no triumph over adversity. Just the unvarnished truth. My contribution has not been published, but several “upbeat” ones have been published since I made my submission.
    Yeah, I know my grand experiment isn’t scientifically valid as it was a sample size of one. But this anecdotal evidence supports my belief that unless it’s all shiny happy people holding hands the story is suppressed by the pinksters.

    • Nancy

      November 22, 2013

      Claire, Sadly, I think you’re right. There is a lot of hesitancy to cover the not-so-upbeat stories. It’s too bad and in the long run it’s also harmful. The entire spectrum of the disease must be presented if there is ever to be a clearer understanding about it. I’m sorry your experiment brought the results you expected… Thanks for sharing.

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