I’m not sure exactly why the topic of metastatic breast cancer is so neglected. Obviously, it’s a tough topic, but that doesn’t mean we shouldn’t talk candidly about it. We can’t just sweep it away or dress it up nicely in pink.
For clarification purposes, recurrence and metastatic breast cancer are not necessarily the same thing. A recurrence can be local, regional or distant.
A local recurrence means the cancer has come back in the breast, or in the scar (in case of mastectomy).
A regional recurrence indicates the new cancer is in the lymph nodes of the armpit or in the collarbone area.
Metastatic breast cancer means the cancer has spread to other organs of the body typically the bones, lungs, brain or liver. This is also referred to as distant recurrence.
A diagnosis of any of these is, of course, devastating though treatment and outcomes are not the same for all.
When you hear the words, “You have cancer,” you might think you’ve heard the worst three words you could possibly hear in regard to your own health. In reality what’s far worse is hearing the words, “Your cancer has come back or your cancer has metastasized.”
Roughly 25-30% of women diagnosed with breast cancer, will have a recurrence at some point. Each year around 40,000 lives are lost to metastatic breast cancer. The fact remains that two years, five years, ten years, even twenty years passing does not guarantee that a woman (or man) is in the clear for good.
Despite these statistics, words like recurrence, metastatic breast cancer, stage IV and incurable often remain unspoken. They are “heavy” words. Even bloggers like me often hesitate to write about them.
Why is this?
The biggest reason in my view is fear.
Facing a recurrence or metastatic cancer of any kind, even as a possibility, is scary and hard; but this is also exactly why we do need to talk about it.
Perhaps subconsciously we feel if we just keep quiet, it won’t happen to us or our loved one. Of course, we all know this isn’t true, but the mind works in mysterious ways.
Another reason might be because we don’t want to offend those already living with metastatic breast cancer. There is a certain amount of guilt involved when you know others who are living with mets and you are not. Again, this self-imposed guilt makes no sense, but that doesn’t mean we still don’t feel it.
One huge reason many of us hold back and don’t speak of recurrence or metastatic breast cancer is to protect our loved ones. Facing cancer once is bad enough for everyone. No one wants to think of putting loved ones through it a second or third time.
Another discussion barrier is that people often automatically equate metastatic breast cancer with a death sentence. While it’s true there is no cure, metastatic breast cancer is treatable. It doesn’t mean the person will be gone in X number of days, weeks, months or years.
We can’t just “write these people off.”
And while this is true, it’s also true that talking about metastatic breast cancer forces us to grapple with the topic of death, and in my opinion, society “doesn’t want to touch that one with a ten-foot pole.”
One thing I do know is this: just because recurrence and metastatic breast cancer aren’t discussed much, it doesn’t mean those of us with an initial diagnosis aren’t thinking about it.
Anyone who has had a cancer diagnosis thinks about recurrence, even if they never speak of it. Keeping quiet doesn’t equal not thinking about it.
This is not to say we dwell upon it, are pessimistic or live life in constant fear. That’s not the case at all.
In fact, this potential for recurrence is the exact reason so many people say they have been transformed (for the better) by cancer and live life differently after a diagnosis. Perhaps this is even why some (not me!) go so far as to call their cancer a gift.
On a related note, one of the biggest reasons so many of us in the breast cancer realm are dissatisfied with all of the October madness and the prevalent pink ribbon culture with its almost cavalier attitude, is because the mets community doesn’t seem to be included enough, or even at all.
Metastatic breast cancer doesn’t fit in very well with all the pink.
Metastatic breast cancer doesn’t fit in very well with the “everything’s going to be OK” message that is often conveyed via all the well-intentioned pink hoopla.
Metastatic breast cancer is not the reality October wants to “talk about.”
Still, metastatic breast cancer is a reality to many. There are about 155,000 men and women living with metastatic breast cancer.
We owe it to them and all those lost to it to talk about it, even if it’s hard.
Not talking about it is just plain wrong.
Why do you think the topic of metastatic breast cancer is so “off limits?”
Have you had a recurrence or do you know someone who has?
Are you living with metastatic breast cancer and if so, what would you like people to know about it?
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Angela
Nancy, this is such a great blog. Thanks for getting the conversation started about metastatic breast cancer.
Nancy
Angela, Thank you for the compliment and thank you for joining the conversation.
ChemoBabe (@chemo_babe)
I think you hit the nail on the head, Nancy. People don’t talk about metastatic cancer because of fear. People don’t talk about the 20-30% recurrence statistic because of fear. But we are not doing ANYBODY any favors by sweeping this under the pink rug. Thanks for calling this out.
Nancy
ChemoBabe, Fear is the great inhibitor for sure. You’re exactly right, keeping quiet or turning a blind eye helps no one, especially those living with mets. Thank you for commenting.
Christina
I was diagnosed stage 4, with liver mets, in July of 2010, while I was still being treated for my original stage 3 breast cancer. I never got a break. Even now, I’m preparing for liver resection surgery in a few days, because it grew back again. I would want people to know that Komen isn’t the only charity out there to donate to for THE CURE. I want them to know that some of us want to talk about it, and take the stigma out, and we KNOW you don’t know what to say, and that’s ok. I want them to know that anyone, at any age, at any stage, can get metastatic disease… and you aren’t alone. There are lots of us. I want them to know that this disease didn’t care that I’m 38, in great health, and with 4 kids and a husband… it’s a horrible monster that needs to be erradicated.
~Christina Bonazelli
http://www.caringbridge.org/visit/christinabonazelli
Nancy
Christina, I’m sorry your cancer metastasized. I’m sorry you got cancer at all. You most certainly never did get a break and I’m sorry about that too. Good for you for talking about mets and for being understanding of those who are unsure of what to say and do. People absolutely need to know mets can happen at any age and at any stage. Cancer does not care if you have a family to raise. It is a horrible monster. Thanks for sharing your truth. It needs to be told.
Nicole
Thank you for this frank and important post, Nancy. One of the biggest regrets I have about my mother’s last bout with breast cancer and subsequent death from metastatic disease is that NONE of her doctors ever even used the words “metastatic” or “terminal” or “treatable but not curable.” In April of 2003, my mother told me that her doctors had told her that her cancer was “chronic.” Educated women that we were, and having been on the cancer rollercoaster (in my mother’s case, anyway) since 1981, neither of us put together the concept that “chronic” meant “terminal.” This was at a time when my mother had so many mets they couldn’t count them all. Yet not one of those lily-livered doctors was willing or able to speak up and say what they were really thinking, what was really happening. My mother was suffering from an incurable form of cancer, and although she’d beaten the beast 4 times before, it wasn’t likely that she would this time.
We would have done things so very differently had we known the truth. Like I said, she was and I am a smart chick, but we just didn’t understand. We needed someone to level with us and call a spade a spade, but no one ever did. Three days before she died, the damn doctors still hadn’t uttered the word “terminal” continuing to hide behind what I now understand is a (dangerous) euphamism “chronic.” As a result, my poor mother, who was by that point being eaten alive by tumors growing wildly all over her body, was still not in hopsice. Why would we put her into hospice? Nobody had uttered the word “terminal” and they were still flogging her body with chemotherapy. That was on a Thursday night. They sent her home, with me, and nobody else to help. She died on Sunday.
People, especially doctors, need to be willing to tell the truth. They need to stop dancing around the facts and using misleading words like “chronic.” Diabetes is chronic. People live their entire lives with diabetes. Metastatic breast cancer is terminal, not chronic.
Nancy
Nicole, I’m very sorry you lost your mother to this disease. I’m very sorry for the lack of proper communication between you and your mother’s doctors. I can feel the resentment and anger in your words. Try not to be too hard on yourself for things you think you might have done differently. I agree there needs to be truth telling, especially when it comes to dealing with a serious disease. I’m not sure what terms are proper and which ones aren’t, but I do know you should always be able to ask your doctors anything and you should always expect nothing but the truth from them. If they let you down, I’m sorry. Thank you for sharing your heartbreaking story. Wishing you peace as you continue to grieve and heal.
Marie Ennis-O'Connor (@JBBC)
I really appreciate you writing about this topic and agree that people don’t want to talk about mets out of fear, or what my late mother would term “ostriching”. Although we don’t want to face the possibility, we cannot hide our heads in the sand like the ostrich – we have to educate ourselves about all aspects of cancer. Having walked this path once, we also owe it to those for whom metastatic cancer has become a reality to be educated and speak on their behalf too – after all, this could be our story too. Marie
Nancy
Marie, You’re absolutely right and so was your mom! We must educate ourselves and speak up to educate others as well about all of it; even the hard parts, in fact, especially the hard parts. Thank you for sharing.
Ronnie Hughes
I too don’t think cancer is any kind of a gift, Nancy, ever. But my partner’s diagnosis shocked me so much that I finally had to get through my fear of death, and face up to the mortalities of Sarah and of myself.
We are all fragile beings, who will not live forever. And I think what you’re doing this week will really help more people to understand the fragility and exclusion often felt by people with mets. And therefore not exclude them any more. We are truly all in this together. Or else we are nowhere.
Nancy
Ronnie, You know that’s the part that bothers me so much, the fact that so many people living with metastatic disease feel so alone and excluded. On top of living with such a serious illness, being excluded as well, that is just too much and completely unacceptable. Thanks for adding to this discussion, Ronnie.
Carrie Anne
Shining light where people are afraid to look. No one should feel excluded. Well done, Nancy.
Nancy
Carrie Anne, Thank you for your beautiful comment.
Beth L. Gainer
Nancy,
This is an outstanding post on a very taboo topic in our culture. I agree with you that people don’t want to know about mets or discuss it because of fear. Our culture is all about the rah rah of survivorship.
We are a society that likes “feel-good” stories.
As you know, I had a close friend who died from breast cancer mets, so I got to see it firsthand. Now a good friend is battling leukemia and I’m bracing myself.
And I do think of the threat of recurrence, almost every day, although I don’t dwell on it.
Thanks for an informative post and for doing what you are doing: informing the public about mets.
Nancy
Beth, You raise a good point. Our society, perhaps our world, prefers the “feel-good” stories for sure. I do remember about your dear friend and also that you have yet another good friend battling leukemia. Again, I’m sorry. I do know you’re the kind of friend that will stick it out no matter what. Like you, I think about recurrence often too, though I don’t dwell on it either. It’s always somewhere in the back of the mind isn’t it? Thank you so much for reading and adding your thoughts to this discussion. I always look forward to your comments, Beth.
Amanda
Nancy,
Thank you for your post. I appreciate your bringing this to light. I was originally diagnosed at 31 with breast cancer and was metastatic at the time, though they didn’t biopsy that spot o n my bone until over a year later. Like Christina said, cancer didn’t care that I’d already had “my share” of tragedy (my only sibling and dear brother was killed in Iraq in 2005), that I’d just gotten married, promoted and was looking forward to starting a family…
Since my diagnosis with metastatic cancer, I’ve gotten angry at the pink ribbon culture and the fact that people are not aware at all about the fact that women are still dying of this disease. There doesn’t’ seem to be much dialogue and when I tell other survivors that I have Stage IV cancer, they look at me with fear, pity and pretty much seem to want to get the hell AWAY from me. I have gone to 2 support groups — one of other young women who are grappling with living with and after cancer, and another for women with Metastatic Breast Cancer. They are all much older than me, but they get it.
I am all to aware, and do know that people die — all the time — of what I have. At the same time, I do not agree with what Nicole said, that “chronic” means “terminal”. I am very sorry that it did for your Mother, and that the doctors weren’t honest with you.
The fact is though, that there is a full spectrum of metastatic cancer, and though I will always have cancer, and I may not be healthy tomorrow, I am right now, living a full and healthy life with metastatic cancer — I have one met — only one — and it is stable, not growing. I absolutely REFUSE to call it “terminal”. PErhaps you will think I am being naive, and I know there are plenty of people out there who think that I am.
I do feel that i am realistic, and know and am reminded all the time that I can die of this disease and *that I probably will*, but I also think that though there isn’t ENOUGH money being spent on researching what I have, medical advances are made all the time… that there are people who live for a very long time with this disease (chronic) and that I can live a full life, with a job, a husband and a baby.
Thank you Nancy, for bringing this important and often ignored topic up — i really appreciate the opportunity to tell my story.
Nancy
Amanda, Thank you so much for sharing your story. It’s definitely one that needs telling over and over. I completely understand your frustration with the pink ribbon culture that seems to exclude the mets community, even if unintentionally and I’m sorry many other survivors look at you “that way.” That’s so hurtful. I believe you are entitled to grapple with your journey in your own way. You are healthy right now and stable. That’s the most important thing. I don’t think you are being naive, you are trying to live your life. I’m sorry you are living with mets and I admire your candor and willingness to share about it. Thank you again and I’m hoping for continued good health for you.
Jill Cohen
Hardly anyone understands what we with mets live with every day. Kudos to you for spreading the word.
There is personal, 1:1 support from mets-sters to mets-sters at Club=Mets-BC on http://www.acor.org. I found this listserv when first re-doagnosed with mets in 2002 at age 42 and it’s been good for me to be with others who have metastatic breast cancer.
For sure, very few in the “pink” world want to see or hear about us. And the government funding for all metastatic cancers is, I believe, less than 1% of ALL cancer-related funding. More info at METAvivor.org.
Nancy
Jill, It makes me really sad to think people don’t seem to understand mets and it makes me even sadder to think the “pink world” has turned a blind eye. That must change. Thanks for sharing this information. My best.
Renn @ The Big C and Me
This is why I love the blogging world. Where else can you find such an honest and open discussion about a topic people dance around, jump over and otherwise avoid talking about?
I know I have felt dismissed and ignored, as an early-stage BCer; I can’t even imagine how isolated later-stage women and men must feel.
Nancy, thank you for giving voice to a too-often silenced subject.
Nancy
Renn, I know what you mean. This is one reason I love it too. Honesty, is there any other way?
NancyE
I stumbled upon your blog tonight as I was searching for metastatic breast cancer references. The thing that has always amazed me is that there are so few.
I was diagnosed with Stage 4 breast cancer in October 2007. (really know how to celebrate breast cancer awareness month!) It was my initial diagnosis, not following a recurrence. After a couple of years, I have finally gotten over most of the shock, and total disruption and reorganization of my life. I had to take unplanned disability retirement from my career and am living on the financial fringe because of this. I can barely afford the health insurance that I MUST have. Yet, I am alive, as I approach 5 years, and according to the statistics, that is rare.
My doctor says I am doing incredibly well, and could be a 10-year survivor. But she has been clear from the begining that it is most likely I will die of breast cancer at some point. My family and friends seem to be writing me off daily, yet if you met me and did not know, you would never guess I have a terminal illness.
It is so hard to find information, or others in this situation. Everything is directed toward the first 3 stages. You are basically written off once your cancer is metastatic.
And I have come to HATE pink. If one more person gives me some pink ribbon jewelry or T-shirt, I cannot be held responsible for my actions!!
Nancy
Nancy, My goodness that was indeed a shocker to get such news in October of all months! I’m sorry. People sometimes do forget that women (and men) are sometimes diagnosed as Stage IV at the time of initial diagnosis. I’m so glad you are doing incredibly well. That’s just wonderful. I don’t blame you for being more than a little disillusioned with “pink.” The mets community does sometimes seem to be almost written off doesn’t it? That’s just wrong. I’m glad you stumbled upon my blog and thank you very much for commenting.
Judith christensen
Hi Nancy,
Thank you for your thoughtful and important post. I too was diagnosed with stage 4 right from the beginning with mets to the liver and bone. My mother had breast cancer and I always thought I would get it but I was in no way prepared to hear the surgeon say “there is nothing we can do for you”. The surgeon referred me to a medical oncologist and I wound up on a clinical trial. I am happy to say that was 7 years ago. I am living a full and wonderful life but I am never free from the fear that things are about to change. People, especially family members, do not recognize the seriousness of my condition and I am really afraid that they will be totally shocked if my condition progresses. I too hate the pink hoopla.
Nancy
Judith, I’m sorry for your stage 4 diagnosis, but thrilled you are doing so well! I can’t begin to imagine all you’ve gone through since hearing those words from your surgeon, which I find to be rather insensitive words by the way. I find it interesting that you say your family members do not recognize the seriousness of your condition. Why do you think this is? This must add a great amount of stress for you. And yes, the pink hoopla has not done nearly enough for the mets community. That saddens and angers me. Thanks so much for commenting. Thank you so much for sharing. My best to you.
Alli
I did a blog on Metastatic Cancer this week too.
I’m not afraid to talk about it. In fact I at times am very outspoken about it. I don’t have METS but there is always that possibility I could in the future And I’ll be damned if I’m going to sit back not talk out of fear. When you confront your fear you will come to know there are hundreds, thousands just like you. If we can’t be tough about it how do we expect others to understand? We need to be loud vocal screaming women. I don’t want to wear the label TERMINAL!! We have lost friends we’ve come to know through blogging, but we have to also remember those nameless faceless women who die every day because of the disparity in research along with funding….
Love Alli…..XX
Nancy
Alli, I’ll be checking out your post when I get a chance. Thank you for not keeping quiet. It’s not like I thought you ever would! Ha ha. And thanks for bringing up the disparity in funding for mets issue. That, too, must change.
CJ (Dian) Corneliussen-James
Nancy – it is extremely rare for someone outside our community to speak out on our behalf and promote our cause. As you are well aware, the MBC community struggles to be heard and the strong voices among us pass away far too quickly. It is heartening to have people like you, who our outside our community, pick up and promote our cause. Thank you!
Nancy
CJ, I want to speak out as much and as often as I can on behalf of my sisters living with mets. My reasons are many. I wish I could do more. It means a lot to me that you took time to leave me this comment. Thank you. I will not be quiet. Thank you for all the work you do. You have truly made a difference.
NYHolly
Hi Nancy!
I am another woman with metastatic breast cancer who is a long time (10 years) survivor.
I appreciate your article so much! Thank you for writing it and speaking of so many things people are afraid to say out loud about this topic.
There are 4 points I would like to touch on here in particular.
1) I was already Stage IV when I was originally diagnosed, at age 48. I’d already been battling heart disease acquired through an undiagnosed case of rheumatic fever for 7 years before that. Unlike some other responders here, some of the doctors I had at the time couldn’t seem to wait to let me know that I was terminal. Some of them threw up their hands and thought I was a lost cause. No one still breathing is a lost cause. I strongly believe in hope–I doubt I’d still be here otherwise.
2) Death, disease and fear are nondiscriminatory. Yes, life can be unfair. But, a 38 year old’s life is not more valuable than a 68 year old’s life–at least not to that person and those who love them. It is a waste of time and energy to rail against fate, no matter what age. There will always be someone better off and worse off than you.
3) Joining groups either on line or off can be beneficial to some people. At the time of my diagnosis, I was encouraged to join groups. But, I chose not to for one main reason. I hadn’t come to terms with my own diagnosis yet. I couldn’t face the thought of making friends with someone with the same diagnosis and then losing them because of it. I am still not a joiner as now I don’t even belong to the average group of metastatic breast cancer patients either.
Joining is not for everybody and we shouldn’t be made to feel guilty if we choose not to join.
4) There is a small group of long term metastatic breast cancer survivors in the world. No one seems to know why we are still here compared to so many who are not. And yet, very little research has been done on this group. I can’t understand why. Doesn’t it make sense if everyone is clamoring for a cure for breast cancer to study the one group who is thought to be incurable and yet surviving? Wouldn’t you want to know why? I know I do.
Wishing everyone the best.
Nancy
Holly, Thank you for making such important points. It sounds like your doctors were more than a little insensitive. I’m sorry. I agree with you that no life is more or less valuable. There is no ‘better age’ for any of this cancer crap. As far as support groups, I guess each person must find and decide what works best for them. Everyone is not a joiner, but for me, online support has been a godsend. There certainly should be no guilt here. Whatever works. And as to your last point, there should be more studies around women with mets who are surviving. That’s a good point. There needs to be more research on an awful lot of things. More dollars on research, less on awareness in my view. Thank you for sharing your thoughts.
Ronnie Hughes
This is a very good discussion, Nancy. You’ve really touched a nerve this week. So glad to see so many of us with such varied experiences of breast cancer coming together in this way.
Nancy
Ronnie, It is great to see this topic discussed so openly. Thanks for being part of the discussion.
Jan Baird Hasak
This is a spark-generating topic if there ever was one. Metastatic cancer to most people equals death, and people are uncomfortable with that subject. Yet we must address it. We must help people remember to care about those living with the disease. I have had a recurrence but it was early stage, just like the first diagnosis. Still, I wouldn’t wish a recurrence on anyone. Thanks for the discussion! XOXO
Nancy
Jan, It is a very neglected topic in my view and that’s very sad. Cancer is lonely enough without making those living with mets feel even more isolated. That’s a burden they shouldn’t have to carry. I remember about your recurrence from your book, that must have been so frightening. It’s good you’re sharing about that as well. Thanks so much, Jan.
Sharon W Jensen
I started a blog a few years ago when I retired and soon after was diagnosed with Fibromyalgia. It included my trials with Fibromyalgia, but the bog was mainly about my life and Fibro was in it.
In January 2012 I was diagnosed with Metastatic Breast Cancer to the Bone.
I was so very angry. I was diagnosed with Breast Cancer in 1998, so that was FOURTEEN years ago. I was told it was very small/new and the likelihood of it coming back was a small 1%. So after 10 years I considered myself a survivor. HA!
Angry at all my doctors who should have talked to me about the possibilities. Angry at all the pink ribbons walking and enjoying their survivorship.
It took me a few weeks to let go of the anger and try to figure out what I was going to do: for myself and others.
My life plan was to live into my nineties. Most women in my family live quite long. My plan now is to feel”hope, happiness, peace and joyful” the majority of time.
There are lots of Fibro Support Groups on Facebook. I haven’t found any for Metastatic Breast Cancer. Yet.
So glad to see your post and blog. If you should have the time to look at my blog, I would so like to hear from you.
I’ve just finished my radiation treatment (for quality of life, not a cure). I hope my resulting fatigue will diminish so I can write more often.
Thank you again, Nancy, for writing about MBC.
Nancy
Sharon, I’m sorry for your recent mets diagnosis. I would say you have a lot to feel angry about. That’s a pretty normal reaction. I’m glad you were able to channel it in some way and are trying to figure out your own path. That will take some time, so be gentle with yourself and give yourself ample time. It hasn’t been very long yet at all. I hope you can find a mets support group online or off that fits your needs. You’re always welcome here and on my Facebook page. I just discovered a new Facebook page (for mets) today and shared the info on my Nancy’s Point page. Check it out. Thanks so much for commenting and good luck with everything. Keep me posted.
The Accidental Amazon
MBC is what is always in our minds when we hear the News, for ourselves or others. Our hearts clutch with fear. We need to turn that fear into true awareness & action. That’s the rub. Keep writing, dear Nancy. xoxo
Nancy
Kathi, Well said. And I plan to keep writing when I can. Thanks for commenting and being part of the discussion.
Mary
I am so happy to have found this discussion. I think we have to be part of the solution when it comes to MBC. I was a stage I survivor for 4 years and have been living with stage IV cancer for almost a year. I do not like sharing my story and try my best to shield my children, but I was recognized this year by my local Komen affiliate as their survivor of the year. I got to do tv and radio interviews and was featured in a front page story in this morning’s entertainment section of the paper as our race is tomorrow. I am doing my part to show people what a metastatic babe looks like. And when I address ten thousand people from the stage tomorrow, I will remind that sea of pink that we honor not just survivors but those we have lost and those still living with cancer. Be the change you want to see. Let’s go down swinging! http://theadvocate.com/features/people/2238848-123/patient-honored-for-fight-.html Not to hijack the blog or anything, but here’s the story link. Keep writing and keep talking about your personal stories. We can be the difference.
Nancy
Mary, I’m glad you found this discussion too and decided to be a part of it. I’m also glad you are sharing your story in the venue(s) of your choice. Good luck with your race and all the rest. Thanks for sharing.
Liz
Hi Nancy. I’m new to all this – have just finished 8 mths of treatment for Stage 2 breast cancer and am at the point of trying to get my head around ‘where to from here’. Am also trying to get a better understanding of breast cancer (and the fraught world of ‘pink ribbon’ issues!) more generally – I must confess that I’m only just feeling ready to do so. I must admit that I’d previously shied away from reading about Metastatic Breast Cancer, but I know that this needs to change. Inspired by your post, I read the material on the (very good) Breast Cancer Network of Australia website today. It’s a beginning. I realise that I need to be informed, both for my own sake and because I will no doubt meet many women with Metastatic Breast Cancer as I make connections in the breast cancer community. Thanks for this post – and I’ve really enjoyed discovering your blog!
Nancy
Liz, I’m so glad you discovered my blog too! Thank you. I’m happy to hear you have finished your treatment. As you said, trying to get your head around where to go from here, is the next phase, and it’s one that often is overwhelming and difficult as well. Don’t expect things to simply return to normal. Adjusting to this new phase of post-treatment has its own set of challenges. Good luck. I hope you find my blog helpful. Keep me posted on how things are going. Thanks for reading and commenting!
Ginny
Hi Nancy
Thank you for bringing up this discussion. As a member of the Metastatic Breast Cancer Network (mbcn.org) we often wonder how to include people with early stage cancer in our struggle. We know that we represent their worst fears, but we also wonder why this message doesn’t resonate with early stage survivors: We understand that worrying about recurrence is your number one fear. Wouldn’t it be a better world if you knew that, even in the worst case scenario that you are diagnosed with mets, that there were treatments available to allow you to live a good quality of life for another 20 or even 30 years? Yes, we all want a cure (or cures, since breast cancer is many diseases) but fighting for treatments to extend our lives and make breast cancer a truly chronic disease just makes so much sense! Don’t give up on us. Join us in the fight for more research and more treatments to control metastases! I would love to see this message get out.
Thanks, Nancy, for all your thoughtful posts.
Nancy
Ginny, I’m not sure why so many early stagers fail to understand or become informed about mets. Yes, it represents their worst fears, but that makes it even more important to face up to it in my opinion. I place some of the blame for this on the pervasive pink ribbon culture that has failed the mets community miserably, again in my opinion. Yes, we definitely must keep fighting for better and less harsh treatments to extend lives. We need lots more research about all aspects of mets. Your message definitely needs to get out. I won’t be giving up on you! I’ll keep trying to do my part. Thanks for commenting and for the work you do through MBCN.
Deborah
Thank you for discussing this. Yes, I too, at 46 years of age, have metastatic breast cancer HER2+. Have been receiving herceptin now for just over two years. Had four and a half months of taxol at the beginning. Thank you for speaking the truth. Everyone prefers a feel good story, they just don’t know how to see that a metastatic journey is just as empowering. I’m stronger that I though I could be, because I’m still standing, I’m still living and loving. I still have faith and hope even with this diagnosis. The most difficult part of this journey for me is that their fear of facing my situation, keeps them in a behaviour of denial. I am tired of hearing people say, ‘we’ll, just put all that behind you now. You look good’ (got my hair back) so they prefer to relate as though everything is back to normal. Life is never normal after cancer no matter about living with metastatic cancer. It seems to me if your not ‘bald’ from chemotherapy, then it’s not such a big thing. The thing is though, you live with the possibility of cancer being on your doorstep at anytime. It is a stress, it’s a managed stress, but wouldn’t it be great if others could actually recognise what we go through and see the grace and beauty that we stand in along the way. It’s time we had a voice!
Emma Barnes
Nancy amazing writing.
I often feel like the party pooper having liver mets.
It’s not always a story of death mine is a story of living.
Nine years down the line I am still here, always on treatment but alive.
I know this is not always the case having lost a very very special friend who I nursed along with her family I have been on the front line.
Well done nancy x
Nancy
Emma Barnes, Thanks so much for sharing about your situation. You understand about being on the front lines. So glad you are doing well!
Kim
At this time I dont have any known “mets”. But I do worry. Tomorrow will be my 4Yr cancerversary. I think the reason why friends that havent had cancer, or any other life altering experiences, think we are crazy to worry about the possiblity of cancer returning is that:
1) They dont want to think about having to go through what we have been through.
2) They cant really see the loss we have been through. They dont realize that the levels of grief and anger fluctuate.
3) If we look “fine” we should be over “it” by now.
Besides truly compassionate people, I dont think that many people can really understand. I even see this phenomenon with a co-worker that had radiation to correct a brain annureysm and is experiencing severe side effects in her body. Her other friends and co-workers dont “get” her frustration with the process of healing, that her world is not the same as before, that her body doesnt work. She is seen as feeling sorry for herself which is crap. I dont think she feels sorry for herself. But the people who arent in her body just dont get it. I let her lean on me cause I have been “there”. She has me for a cheerleader and I think it gives us a unique bond for sure. I hope you and your readers can see why I share this story.
I am also a cancer veteran who does not see cancer as a gift or a blessing. I did not need cancer to “wake” me up to the fact that life is what you make it, or that today is the last day of the rest of my life. Now I just have to worry about cancer returning and making my life hell again. Who wants to look forward to tests, worry and sleepless night? Cancer sucks!
Thanks for bringing up a delicate “issue”. I dont think it should be delicate either. I will keep checking your blog, I enjoy your candor!
Nancy
Kim, Thanks so much for your well thought-out comments. Mets is an ongoing concern even if we don’t speak of it. It’s a topic that simply must come out of the closet in my view. You’re right, most people do not understand. I’m sorry about your friend, but glad you are there to be her cheerleader. I’m sure your bond is unique for sure. Don’t even get me started on that cancer is a gift thing…just read my post I guess! Thanks for finding my blog and I’m glad you appreciate my candor. I appreciate your supportive words very much.
Becky
Awesome!! Thank you for this! We need you!
Much love-
@Planethealer
Nancy
Becky, Thanks for reading and you’re very welcome. Everyone’s voice is needed here.
Barb
Hi Nancy – I have had your blog on my favourites list for a while now but have just revisited it today. I am very glad that I did. I too am a metster (from the get go) and am coming up on one yr from dx. I must say that I am very encouraged by the women/men who have lived for years with mets. Thanks to those who have shared their stories!
I can’t say that I am mad at the “pink society” because I was once one of them until I had a better understanding of breast cancer and all of it’s ugliness. I thought I was doing my part by participating in events, raising $$, and buying pink. I have learned a great deal in the last year. I have found two sites that have been quite informative – mbcn.org and metavivor.org
I will still partake in the Relay for Life but my focus will be changing to that of MBC awareness rather than just “hooray for pink” Education must be brought to the masses.
Thank you so much for your support!
Nancy
Barb, I’m so glad you revisited again too! Thank you. I’m also glad you feel encouraged by the stories of others. That’s why it’s so nice when people do openly share their personal experiences. It can really be helpful to others. I guess I am “mad” at “pink society.” To me the mets community has not been included much. As you said, there always seems to be a lot of “hooray for pink,” and not a whole lot more. That’s not good enough anymore. Actually, I have a new post coming on this tomorrow. I agree, the two sites you mentioned are great resources. Thanks so much for sharing, Barb.
Maggie McDee
Thank you, Nancy – this is another great topic. I agree that fear is probably the reason metastatic disease is not often discussed. Yes, it often ends with death (LIFE ends with death), but it often also results in many years of living a more appreciative, joyful life. People don’t like being reminded of their own mortality – it’s like going to a funeral. That’s always a good reminder of one’s mortality, but we metsters are still walking around, still living our lives.
I, too, am not a big fan of the whole ‘pink’ movement. Most of my pink gifts have been donated to charity. I have had several recurrences over the last 15 years and maybe I’ve become accustomed to how people respond to me. I did lose some fearful friends early on, but now I have some truly wonderful and supportive friends and family members who help me to live life to its fullest. Two of my friends are young mothers and I really enjoy spending time with them and their beautiful children. Others are people who just love me and let me know that they love me regularly.
I would like people to know that:
(1) we are all mortal, some of us are just more aware of it than others,
(2)death is a natural part of life – no one escapes it
(3) the essence of who we are is so much more than our physical bodies – we are magnificent spiritual beings currently living in human bodies
(4) we can love and need to be loved just like everyone else
(5) love, joy, passion, support and laughter are all great medicine
(6) healing can occur, even if remission does not
maggie mcdee
Nancy
Maggie, This is another great topic isn’t it? Fear hinders an awful lot of dialogue and in this case it’s really sad. I hate it when my sisters (and brothers) living with mets feel isolated and alone. Thank you for sharing what you would like others to know about living with mets. It’s so important to share. Thank you.
Mandi
Wow, you really hit the nail on the head. I try not to talk about it because it freaks out my family, I don’t want to offend those with mets and I am scared that it could be me next. Thanks Nancy.
Nancy
Mandi, It’s great to hear from you. It is a tough topic isn’t it? We must try to be fearless instead of fearful – talk about it despite the fear. Our sisters living with mets deserve nothing less. Thanks so much for commenting.
sunil srivastava
Hi, my wife has been diagnosed with stage 4th breast cancer since Aug.2012. First chemo was of six cycle of 21 days gap. now on DEc. oral chemo has been started. im afraid.. she is weak with capicitabine..plz guide
Nancy
I’m sorry to hear about your wife’s stage IV diagnosis. It’s certainly understandable that you are feeling afraid. Please visit my mets page, which is located on my home page, for a few resources/links to visit online. The Metastatic Breast Cancer Network has a free booklet with answers to 15 questions most frequently asked about stage IV. Please discuss your wife’s fears as well as your own with someone, preferably a professional, but a good friend might work too. I wish I could “guide” further. I am not a medical professional, but I am here to offer some resources, posts, online links and my words of encouragement. I hope you find some of it helpful. Supporting your wife through this will mean an awful. Good luck with things. Keep me posted.