Metastatic Breast Cancer

I am a woman with metastatic breast cancer.  My cancer was first detected as inflammatory breast cancer nearly 4.5 years ago, although I’ve also had invasive breast cancer, Paget’s disease, and recurrences as the cancer spread to lymph nodes under my left arm (2010), to lymph nodes in the center of my chest (New Year’s 2011), and then to my bones in March 2011.

Metastatic breast cancer means that cancer cells have spread from my right breast to other sites, made themselves at home, and reproduced so many times that now each cell has become a mass of cells detectable by today’s x-rays, CT scans, PET scans, and MRIs.  I have those tests frequently now, to determine how well my current treatment is proceeding, whether the cancer is progressing or held at bay, and when we should change treatments to something that might be more effective.  Last week’s tests and scans showed that there is still cancer in my neck, spine, ribs, and hips.  The blood tests had been showing a reduction in the total load of cancer cells in my body, but as the numbers slowed to a standstill, they agreed with the increasing pain in my hips, left ribs, and neck, one that agrees with the scans; we will have to change treatments.

Just to survive, I spend a day at the hospital every two out of three weeks now, receiving chemotherapy through the port implanted in my chest.  To lessen the pain of bone metastasis, caused by swelling of the bone as the cancer cells populate the core and push outward against its thin covering, I am undergoing pallative radiation therapy this month:  each workday for three weeks.  It is working – Thank God, it is working! – but it takes the whole morning to go for treatment and back, and then I sleep it off for several hours, waking when my children arrive home from school.  Yes, I have two little children.  It is hard to balance treatment with their care, but I am grateful for the opportunity to try.  I am grateful that my body responded to treatment the first time, that my chemotherapy, surgery, and radiation in 2007-8 beat back the cancer and gave me another chance to live, to be their mom — the baby, after all, is only four-and-a-half.

But, like 30% of other breast cancer survivors, the cancer came back.  I blamed myself, but we now know that the recurrence of cancer was not my fault.  Researchers now say that if a cancer is going to recur, cancer cells have already escaped the breast for other parts of the body even before the primary cancer is detected by today’s best methods of detection, let alone breast self-exams, the most highly recommended method of detection of breast cancers.

I am not alone.  Over 150,000 women and some men are living with metastatic breast cancer in the U.S.  45,000 die each year.  There is no cure.  [In 1980, the median survival after initial diagnosis of metastatic breast cancer (that is, not one that was diagnosed earlier, like mine) was 3 years.  Twenty years later, that number has not significantly changed.]

There are treatments that improve quality of life, like my radiation therapy this month, and chemotherapy to reduce the tumor burden that we have to struggle against, but these treatments are given to improve quality of life, not to cure.  The end result, after all, is the same.

In January of this year, I participated in my first clinical trial, eager to help move research forward, excited about participating in research on metastatic disease.  It was unsuccessful; by February, I was confined to bed, the soles of my feet red hot, skin peeled off, and in terrible shape.  Only then did I *really* understand that a Phase I/II clinical trial first tests toxicity; the amount of drug that the body can bear within reason.  The level that I was given was too much.

I started a new trial in March that compared standard-of-care injections with less frequent injections.  That was fine, except I did worry whether the study would be successful, as I was assigned to have less frequent injections, and was I hurting my chances for survival with this decision?  No one knew, and that was the purpose of that clinical trial.  I continue receiving those injections, but was moved off the trial when the next round of scans showed that the cancer spread to my bones.  My next treatment will be with a different drug.

I believe in research.  I believe in it so much that I have put my body on the line, participating in clinical trials before I even understood the rarity of the opportunity.  Trials for metastatic disease are few and far between — for the FDA mandates that before any clinical trial on metastatic disease start, the drug be shown effective in reducing primary breast cancers first.  But many researchers are now saying that metastatic disease does not behave the same as primary disease, so what good does this regulation do for those of us whose cancer has already come back, despite the drugs we used for our primary disease?

The regulation protects us, yes.  But it also makes the testing of new drugs that might work on metastatic breast cancer much rarer than it might otherwise be.

I have attended two significant events with other metastatic women this year, and each time we have asked the organizers and advocates how we can participate in more clinical trials.  How we can donate tissue, or time, or our very bodies … so that others may benefit from the research, and so that we can see the community actively working toward control of — or even a cure for — metastatic breast cancer.

With everything from groceries to debit cards going pink this month, special coverage on the news and advertisements on the radio, there is money and energy flowing in for awareness, treatment, and research on primary breast cancer.  But the funding for metastatic breast cancer remains at 3% of all funding for breast cancer research in the United States.

Metastatic breast cancer is a variation of the breast cancer we hear about every day; it is a progression of that disease, and a deadly one.  It is what I feared; it is what so many of us cancer survivors diagnosed with Stage I, II, or III breast cancer fear.  While women with Stage I, II, or III breast cancer look for the “cure” and celebrate “hope,” those of us who have had a recurrence or are diagnosed first at Stage IV are not quite so happy and shiny this month of October.  Our “hope” is more desperate, and there is no chance today that we our cancer will ever be “cured.”

We attend the Pinktober events, the celebrations of progress for breast cancer, perhaps standing on the sidelines, quietly cheering our sisters on.  We are genuinely thrilled for the progress that has been made in understanding about the importance of breast cancer self-exams; about follow up testing for everyone, no matter their ability to pay; and in the discovery of 20 or so chemotherapies that can beat back primary breast cancers, alone or in combination.  We smile as our Stage I, II, and III sisters take the stage, thrilled to share their stories and years of survival since that day each found a lump in her breast, and we clap as hard as anyone else for their survival.  It is, after all wonderful news.  We lower our eyes in remembrance of the women that the organization has lost in the past year, and we try to cheer for the hopeful outlook of more awareness, more research that the organizers swear to us will come if we just buy one more t-shirt, sell ten more tchotchkes, write that check before you leave.  We accept the pink ribbon and pin it to our shirts, but we often feel that it doesn’t quite fit.

The pink ribbons and survivor pride and celebrations are parts of a wonderful day, but our day is not done, you see.  When we go home, we take off our ribbons and take our pills and set our alarms, for in the morning, we have a chemo appointment.  Or a follow-up visit.  A scan.  Or we’re just waiting to see the results — has the cancer progressed since last time?

There is often deep reflection on those dark nights.  We support early detection, breast self-exams, mammograms, and we smile when someone shows us their pink ribbons or tries on pin one on us.  But still, we may come away from events like this with a tear in our eye, or mad as hell.  If there are so many reasons to “hope,” we ask, then can we please be included?  If all these walks and collections and special pink hair dryers and vacuum cleaners are being sold “for the cure,” is some of it, at least some of it, going to research metastatic disease?

Why is research on metastatic disease funded at a level of just 3% of all breast cancer research, when metastatic disease is the state that all breast cancer patients reach if their cancer recurs?  Here’s a dirty little secret:  very few people die of breast cancer confined to the breast.  Breast cancer deaths are caused by treatment or metastasis, after the initial cancer has spread away from the breast and into vital organs.  We need to research that end of the cancer spectrum too.

Yes, let’s prevent cancer.  By all means, let’s prevent one more woman from suffering with this disease.

But let’s also research metastatic cancer, more, and faster, and let’s prevent women from dying from this disease.

Over 30% of women diagnosed with Stage I, II, and III breast cancers will suffer a recurrence and become metastatic.   Many more are diagnosed at Stage IV, after the initial cancer has already spread.  There is no cure.  And yet only 3% of the funding is focused on this end state.

How is this right?

For more on Metastatic Breast Cancer Day: this article in the Huffington Post, the Metastatic Breast Cancer Network, Metavivor.org, @ihatebreastcancer Katherine O’Brian, age 45; @ccchronicles Sarah, age 41; @justenjoyhim Judy; @jodyms Women with Cancer, @pinkribbonblues Gayle Sulik, a cancer fighter’s stunning alterego @Chemobabe and the wonderful Twitter stylings of @stales, @talkabouthealth, and others who gather at #bcsm and #mbc.  Thank you for reading; our goal is to increase research funding for metastatic disease and to change the conversation.  When you hear “buy this and we’ll donate to breast cancer!” I hope you’ll wonder, or even ask, “What percentage of your organization’s funds go to research metastatic breast cancer?”

94 Responses to Metastatic Breast Cancer

  1. Thanks for this post, Susan. Wow, an eye-opener, but depressing and frustrating (especially about clinical trials) I was in a clinical trial for early stage (stages 1- 2B) Triple Negative Breast Cancer Survivors. The drug had actually been FDA-approved 3 years earlier for late stage TN, and I was told that that’s the way it often works – drugs approved first for late stage later assessed to see if they can make more difference in disease caught earlier (maybe who they test it on first depends on the kind of cancer and or the drug?) And, btw, the one and only study I could find on the drug, called ixibipilone reported up to 2 months extended life in some of the late stage trial participants in the earlier trials. Lots of intensive side effects and unfortunately a number of deaths tied to the drug (if I recall, the deaths were associated with the severe neutropenia caused by the drug) But you’re right, Susan, trials are important, It’s how we have the drugs we have now.

    Hope you have better days, and it’s wonderful that you are appreciative for the ones you do have. It’s a blessing for your family and close friends. And you know how those who come to this site appreciate all that you share.

  2. Colleen says:

    Hi, Susan. I shared this post AND the article from Huffington on my facebook page. It is the bravery of people such as yourself that will, ultimately, make the difference between wearing pink because that’s what we do in October, and funding actual research. Best regards.

  3. Blue Morpho says:

    A fantastic post – frustrating, but informative and right to the point. I am thrilled that your radiation treatment is giving you some pain relief. I hope the next chemo you try also beats back the cancer cells. Thank you for helping me and others become more aware of metastatic breast cancer, and the realities. I’ll pass this post on as I can.
    Adventures in Anxiety Land

  4. Amanda says:

    You are doing so much to create a crusade, trust that behind you we shall swell and launch your message further.

    Big love and light to you.

  5. Wordgirl says:

    I would love to share this on my FB page — but my best friend, recently diagnosed with metastatic breast cancer — is not in the place to read this — but so many women — so many people — are benefitting from your posts — and I just wanted to thank you for your blog. I am learning so much — and am just so grateful – more than I can probably adequately express here.

    Love,

    Pam

  6. Dorothy Doyle says:

    Susan, what a powerful message. Would you be willing to submit it for publication? Newspaper editorials, magazines… Your message is one that needs to be WIDELY heard. I, for one, didn’t realize that funding for breast cancer doesn’t typically include funding for metastatic disease. 3% is outrageous. Keep spreading the word….shout if from the rooftops! (Especially this month when news coverage is on breast cancer awareness.) You are such a powerful advocate, gather others to help you make some noise and be heard….Many blessings to you, dear Susan.

  7. Stella says:

    The figures are staggering, Susan! It’s incomprehensible that we are fed figures that support certain views – such as making progress against the disease which imply fewer deaths – yet a different set of figures tell the horrible truth that no headway has been made against the real killer – Metestatic Disease.

    I’ve said it before and mean it more and more each day, you are my hero… a real flesh and blood person who’s very existance makes me strive to be a better version of myself. I love you, Susan.

  8. [...] please read Susan’s post – she has a wonderful link to a Huffington Post article — which also lead me to this [...]

  9. I learn so much from reading your blog, though I so wish you had the luxury of simply teaching us about astrophysics. Cancer and it’s stages and types are so complicated, just like other illness labels when you delve in because someone you know has it and it is simply mind-boggling. There does not to seem to be just one trajectory for breast cancer, as I naively thought and this is likely true for other cancers as well. Metastatic breast cancer deserves as much research as other cancers. If anything, it has the potential to be even more life-saving.

  10. Adam says:

    You sure look perky. And I don’t think it’s that Southern, “everything is fine” smile. It’s a real smile. It comes from joy in the heart, even though life is tough. Thanks!

  11. *m* says:

    Another powerful and enlightening post, Susan. I will pass it along to others.

    Thinking of you often and I am so glad that the pallative treatments are helping.

  12. So glad your pain has eased! I am passing your post along to FB also. Hope you feel the swell of support and your smile is contagious!

  13. mommakiss says:

    I know another woman who has had her cancer spread, and she’s also in trials. God bless you, both. I would do the same, to be honest. Anything to help the future of this disease. You are strong, and you are helping others just by posting. Thank you for that.

  14. [...] Toddler Planet Posted in cause, diagnosis, paget's disease, treatment, Uncategorized | Tags: cancer, cause, [...]

  15. Thank you so much for this post Susan. Praying for you always, my friend!

  16. We need these kinds of posts to keep all of us demanding research and funding for these types of treatments — thank you for your bravery and courage and for fighting for so many

  17. nancyspoint says:

    Susan, Thank you for writing this. Like you, I am appalled by the lack of attention in general given to mets in October and all year for that matter. And the lack of funds for research, I simply don’t understand the logic of practically ignoring the deadly end of the spectrum of this disease. There is so much work to be done. I can only imagine your frustration and yes, anger during Pinktober and beyond. Like others have said, there’s nothing wrong with all the pink, it’s just not enough. Good luck with the next treatment.

  18. Thank you for speaking up and speaking out. It was a privilege to pass this along!

  19. Bon says:

    i agree with the others: a privilege to pass this along.

    do you happen to know if the numbers are similar in Canada, Susan, regarding research on metastasis?

  20. AnneMarie says:

    Susan,
    This is why I believe so passionately in being part of a change. I cry when I hear “survivor” because it diminishes the diagnosis of so many. And it’s unacceptable to sit on the sidelines and say nothing. I feel like every penny raised for disease should be dedicated to advocacy or research (and not in that order)….
    Money spent to help those for whom treatment would be impossible-good use of funds.
    Money spent researching drugs to stop mets-good use of funds. Money spent researching why-also, good use of funds.

    Money spent to tell women they need mammo’s-that’s where the 3% should be going…..

    I am glad to hear the rads are helping with the pain!

    AnneMarie

  21. Yanyra Nieves says:

    All I can tell you Susan, is God bless you, always! You are amazing!!!

  22. I thought this statistic spoke volumes: “In 1980, the median survival after initial diagnosis of metastatic breast cancer (that is, not one that was diagnosed earlier, like mine) was 3 years. Twenty years later, that number has not significantly changed.]”

    When I read this: “There is often deep reflection on those dark nights.” I instantly thought of this:
    I will hold the Christ light for you
    in the nightime of your fears
    I will hold my hand out for you
    Say the words you long to hear.

    But as I write, I am reminded that words may offer some comfort but they are not enough.

  23. Anne Marie,

    I do not have mets at this point, and maybe I don’t understand how so many women feel who face this devastating diagnosis, because you are not the first person I’ve heard say they felt the word survivor diminishes those with mets. But the way I personally see it, all of us are survivors through every breath we take. While most late stage, sadly do end up eventually getting their “c” wings, I don’t think it means they can no longer be called survivors -anymore so than those who don’t metastasize and end up eventually passing from something else. All of us die sooner or later though some of us have the fortune of living long first. And I think survivor so well speaks to those with mets who fought, typically harder and often having to be braver, than those who get more time.

    I do wish more would go into the cure for advanced cancers though. Seems like there are lots of drugs out there even for advanced, but sadly, nothing is getting it yet. Let’s just keep hoping and stay united and respecting each other and speaking up for each other. And hope that one day the scientists get smarter than this *#@* disease. Susan, I never know what to say cause everyone else seems to have said it all and said it so well. You are a warrior mom, warrior wife, warrior friend, warrior educator – making a permanent mark. You will live on more than some who may possibly walk this earth longer than you.

  24. Thank you so much for sharing this information, Susan. I am early in my learning curve about all this and am grateful for patient and thoughtful explanations that help me, as much as possible from the outside, get a clue. I’m grateful to you for taking the time to share this with us.

  25. Such a horrible desease. I hope the research money comes. Its seems like a no brainer, but sadly we aren’t much for long term thinking when it comes to research dollars. Thank you for sharing your fight and bringing this to the attention of so many people.

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  27. Susan says:

    What an eloquent post, Susan–I am off to look up contact info for the Inflammatory Breast Cancer’s research program. I am sitting here thinking about how much basic info about the science of women’s lives just never gets into popular discourse. I’ve learned so much reading here about cancer detection, treatment, and research. Seems like much of this really ought to be better known.

  28. NYFriend says:

    The numbers are staggering.

    Wishing you “good days” and peaceful nights.

  29. Susan,
    Thank you, thank you for this post. You have opened my eyes to what needs to be changed.

    Thank you

  30. jr says:

    Thanks for this eloquent, passionate call to action, Susan. I had *no idea* just how little of the funding (and the Pinktober attention!) went to metastatic breast cancer, and was shocked by both the figures and the lack of change in prognosis for women at stage IV over the past decades. How can we work together to change this?

    And yet — if I can throw in my 0.02 here — it’s not just metastatic *breast* cancer that’s an orphan, although it’s a particularly good illustration of the problem, given the success of awareness- and fundraising around breast cancer. It’s metastatic cancer in general. According to an editorial in the European Journal of Cancer, only c. 5 percent of *all* cancer research funding targets metastatic disease. The editorial doesn’t delve into why this is, although it’s tempting to think it’s just much sexier, and hence an easier sell to potential funders, to “cure cancer”, rather than to devote research time, money and energy to managing disease and prolonging life (and quality of life) in those we don’t yet know how to cure. I have also wondered whether research into metastatic disease suffers from the same problem as palliative care, in being something of an embarrassment; after all, if the initial treatment had worked, neither would be needed, right?

    My mother died of a rare, highly malignant bone cancer, which metastasized almost immediately and took her life in less than two months. Tonight my father in law waits in hospital to find out whether his recently diagnosed aggressive prostate cancer has spread past the power of surgery and radiotherapy to contain it. More money for research into metastatic cancer really, truly can’t come soon enough for me.

  31. Lori says:

    Emerging from 9 years without treatment into a recent metastatic diagnosis, it is so interesting to now be facing “the worst” that I’ve feared all this time. As for research and funding, it is staggering when you look at the numbers, and all the while listening to the “early detection saves lives” mantra, and the mammography debate. Thank you for opening our eyes, Susan, and know that you’re not fighting alone!

  32. [...] Blogger Susan Niebur shares some poignant thoughts from a young mother living with metastatic breast cancer in the month of October http://toddlerplanet.wordpress.com/2011/10/17/metastatic-breast-cancer-day/ [...]

  33. Thank you Susan, for such a thorough, enlightening post. You have explained it far better than any of us can who aren’t in it, much as we may be aware that it could be us at any time. I have linked to this post on my blog today, which is about the real people behind the pretty pink ribbons.

    You have enough to deal with, just fighting. Taking the time to paint such a vivid, devastating picture is an act of generosity and love.

    You rock lady. When I want to get lazy and stop scrapping, I think of you and get off my —.!

    So glad the rads are helping.

    Love, Elizabeth

  34. you are amazing and wonderful and I love you babe.

    (and I understand where you are coming from with the awareness. I know it is completely different but I see all the campaigns for early intervention for Autism and while I applaud these gains it is too late for my boy. And we go on to fight the battles that make it easier for those following in our footsteps with less money and less support and sometimes it just gets too damn tiring. So I get THAT part. The rest I can only just sit here and read your words in awe.)

  35. Thank you for taking the time to share your story and info so eloquently.

    The numbers around MBC are shocking. Even though I *know* this, I’m still wrapping my head around the 3% you mention here:

    Why is research on metastatic disease funded at a level of just 3% of all breast cancer research, when metastatic disease is the state that all breast cancer patients reach if their cancer recurs? Here’s a dirty little secret: very few people die of breast cancer confined to the breast. Breast cancer deaths are caused by treatment or metastasis, after the initial cancer has spread away from the breast and into vital organs.”

    Also, I didn’t know about the FDA rule about Clinical Trials and primary breast cancer vs MBC.

    We all need that 3% to grow and grow fast. I’ve “survived” 3 early stage primary breast cancers… I know there’s no cure. I hope it’s not in my future, but I know that like all my fellow early stage sisters, I’m at risk for mets.

    At this point, for “Breast Cancer Awareness” to really mean something, it needs to fully encompass Metastatic Breast Cancer. By sharing your story you’re helping to make that happen.

  36. None of it’s right, Susan. Absolutely none of it is right.

    It almost seems as if the more scientists study cancer the more confounding it becomes. What I’ve personally concluded is that cancer in and of itself wants to live as much as we all do.

    The other day a physician on a CancerCare webinar (on metastatic disease) suggested that it isn’t just the percent of research dollars allocated to metastatic breast cancer per se but research in general that identifies the factors that trigger mutational switches from flipping. So that it may not be an actual dollar amount but greater discernment about the nature of cancer research in general. It is something to think about. All I am saying here is that I think it’s bigger than simply allocating research dollars for metastatic versus primary breast cancer research. We need deeper, better research on inflammatory breast cancer as well.

    I think we also need to take some of those pink dollars raised via yogurt and who knows what else and log them all into a travel fund so that women can afford to travel to locations where a particular trial may suit her particular cancer.

    And on a final, personal note, I’m so glad to hear that the radiation is helping. I am with you all the way.

    Love,
    Jody

  37. I would look in to the Budwig Protocol.

  38. Gill says:

    Thanks so much for sharing Susan. Very eye-opening! {hugs}

  39. Bravo!! And amen.

    Thinking of you… as always. xoxo CGF

  40. Ellie says:

    Thank you for saying something that needs to be said. I have often wondered just how the funds are used, and am extremely disappointed to hear only 3% goes to metastatic breast cancer.

    I fervently hope the radiation therapy continues to lessen your pain. If I could give you the very bones of my body to eradicate your hurt and make this magically go away, I would. You are in our thoughts and prayers.

  41. Hi Susan,
    How are ya today?? Don’t know if you get time to read all of the outpouring from each of us you’ve touched, but am posting this just in case – for you and all those frustrated that metastatic cancer gets too little attention. Hopefully, this will lead to somewhat more aggressiveness, we’ll see …. But NCI has this project called Provocative Questions that’s supposed to stir “the right” questions from the research community. Here is one of the early questions and the accompanying response …

    Given the difficulty of studying metastasis, can we develop new approaches, such as engineered tissue grafts, to investigate the biology of tumor spread?

    Background: Metastasis continues to be difficult to study. We have almost no reproducible systems to study this deadly process. Mouse tail vein injections of tumor cells often leads to tumor growth at various sites in a process that mimics metastasis to some degree. Some genetically engineered mouse models will metastasize, but the process is hard to stage or follow in rigorous detail. This Provocative Question calls for development of new approaches to study metastasis.

    Feasibility: While the range of potential approaches to develop methods to study metastasis is left to the imagination and creativity of the community, one potential exciting approach is the construction of engineered tissue beds that could serve as sites for invasion of metastasizing tumor cells. Such sites could be modified to determine which physical or biological properties promote more successful invasive and subsequent tumor proliferation. Many parameters of metastasis could be measured if it were known when and where to follow this process, and such sites could allow more careful analysis of what events guide the development of metastasis. These types of suggestions also raise a large number of other potential approaches that might make the study of metastasis more controllable and thus more readily compared among tumor types and more readily modifiable.

    Implications of success: In many ways, metastasis is the most important stage of tumor development. Developing new methods to allow its careful study would provide important new avenues to learning about this stage of tumor development.

    • Susan @WhyMommy says:

      Fascinating. What an interesting idea! One of the other early questions was submitted by Dr. Patricia Steeg and a number of us in March, hoping that NCi would take an interest in working to lift the FDA regulation that metastatic clinical trials test only drugs proven to work on primary cancers. Steeg, a working researcher who sat with us metastatic women in a room while we met – with tears in her eyes – is one of our best hopes. If this regulation is holding our best back, then it should be loosened.

      • Awesome that you have been right there, on the front line! Maybe you should tape yourself talking about your journey, not just with the disease, but journaling what’s gone on (or hasn’t gone on) with advancing the science, and what your involvment has been and why you do it.

        Yes, we need to go full force on both early detection AND metastatic disease. Just seems we should be further ahead in both.

        About drugs needing to be tested in front line therapy first: the drug in the clinical trial I was in (xibipione vs taxol which was the control) was already FDA approved for advanced Triple Negative Breast cancer. It was first being tested on Stages 1 and 2 TN. And maybe I heard it wrong, but my understanding had been that the PARP inhibitors now available in clincial trials are only available for advanced stage Triple Negative? Or at least I’d heard those were the only cases it was being used a year or so ago?

  42. katherinembc says:

    Awesome, awesome post!

  43. I had Stage I brca and positive nodes almost 13 years ago and have had several ‘scares’ since then. While I don’t live in constant fear of metastasis, it’s frequently in my thoughts. To live as you do and fight as you do — well you are amazing and make me proud. I will do what I can — write letters, ask questions, make more people aware of the situation regarding research, clinical trials, and funding. I applaud you for your courage to live a full life with your work, your family, and your disease. Bravo!

  44. I love your fighting, advocate soul. Love it.

  45. [...] on you, I just want to take a deep breath and share how wonderful life can be, even in the midst of all that cancer I talked about in my last post.  During difficult times, I’ve had to face the fact that I may [...]

  46. tamariez says:

    You are amazing and so brave. You’re family is lucky to have someone like you in their lives. I wish you the best of luck in your clinical trials and look forward to reading future blogs.

  47. Pam Stump says:

    Susan, I applaud you for bringing this to our attention again. Your wonderfully written post really brings this message out loud and clear. I continue to keep you and your family in my thoughts and prayers and I know your blog is making a difference for many people. Take care and glad to hear that the radiation/chemo is helping manage your pain.

  48. Stacey says:

    Thanks so much, as always, Susan, for this thoughtful and thought-provoking post.

    My mom was diagnosed with metastatic breast cancer almost 7 years ago and she has been cancer-free after a year of surgery, radiation and chemo. She has always talked about metastatic breast cancer being a completely different disease from Stage III and lower.

    I understand people have a hard time understanding that, but your post made it so clear, and your call to action was even clearer.

    Again, thank YOU for taking the time and energy to write and engage and influence. May your influence be as big as your heart!

    Big love to you and your family!

  49. Susan – we need a TeamWhyMommy version of support for metavivors… people standing behind those with metastatic breast cancer — TeamBeyondThePink Ribbon or something. Your blog and the piece in USA Today was totally enlightening. I had no idea only 3% of breast cancer research dollars go to Metastatic Breast Cancer. Let’s do this together.

  50. I’d also like to see the numbers for profits vs percentage given to cancer research or foundation. Like how much did yoplaits profits go up compared to how many people save & send in the pink tops?
    Also, are there charities to donate to where I could designate my money for metastatic disease?

  51. Lisa says:

    Thank you for this post and for bringing awareness to metastatic breast cancer. My friend, who is 38, is dying of the disease, nearly three years after being diagnosed with inflammatory breast cancer in Dec. 2008. She went into hospice 2 wks ago after her disease stopped responding to treatment. It is so hard to understand how there is so much money and consciousness directed at cancer research and breast cancer research in particular, and yet it feels like so little progress has been made against this terrible disease.

  52. Lori says:

    Lisa,

    So very sorry to hear about your friend. For those of us living with mets, we wonder when that day will come..,when the disease will grow stronger than the drugs…all the time. And you’re right about the money, except that the lion’s share of money goes to things like awareness campaigns, and even high salaries for non-profit execs. And of what does go to research, only about 3% is allocated to studies on mesateses, despite the fact that 20-30% of breast cancer will spread, and that spread accounts for 90% of cancer deaths. We must take a critical look at allocations and demand change!

  53. Hello Susan, I live in Spain and was diagnosed Stage IV breast cancer with met. in the liver in July 2010. I had nine months chemo, surgery, radiation and a full remission but keep on taking intravenous Herceptin every three weeks. This drug seems to block agressive estrogen receptors together with other estrogen receptors taken orally daily. The doctor´s line now is that on can go on taking Herceptin as long as the heart can take it. Do you have this drug in the USA? Wish you strenght and love. Rosita

  54. karyl33 says:

    Thank you for sharing. I was diagnosed with thyroid cancer a year ago. I’m doing well but just starting the cancer experience. You seem so upbeat and positive. Keep fighting!

  55. Very informative post, thanks for sharing your life with us!

  56. Anne Schilde says:

    You really expose a fundamental flaw in our health care system, Susan. Research institutions that don’t show results just don’t get money. It’s much easier for them to produce evidence of results in the area of prevention than to fight for the elusive cure that produces thin evidence of results at best. But this is kind of like oiling the squeaky wheel while the quiet one is falling off, isn’t it?

    It is wrong, in so many ways, that budgets, and not love, drive the distribution of these funds, not to mention that probably more than 3% goes into the cost of distribution! God bless you and other heroes like you, and thank you for your amazing gift to this world!

  57. Julia says:

    I just came across your post and decided to read on. Thank you for sharing your struggle with others. My mother was diagnosed with Stage 3 Gastroesophageal cancer. She underwent the chemo/radiation and surgery to remove her esophagus and most of her stomach– and she is one of the miracles. She was in ICU for 6.5 weeks and can’t walk again yet but is making strides. I thank God every single day that I have her for even one more day. I am going to pray for you Susan, I pray that God will heal your body and give you more time with your children. God Bless.

  58. Thank you for this post. It is like a sobering slap in the face – people can enjoy life and rejoice under any circumstances.

    Thank you!

    May God with his infinite love and wisdom be with you every second.

  59. travelingmad says:

    This was a moving post and difficult for me to read. I lost a love one to breast cancer and witnessed the difficulties of everyday life as time went on. Family support is so important.
    Thank you for sharing this and congrats on being freshly pressed.

  60. My wife is a two-time breast cancer survivor. In reading your story I was overwhelmed by your courage and your wonderful spirit of strength. To go through all of this, and still find time to share your story like this. This certainly is the top award for “Freshly Pressed.”

  61. Eva McCane says:

    wow. i commend you. your story is moving. my family has a history of cancer, but up to this point both my mother, my sister, and i, have all somehow dodged breast cancer. i know it’s common, and i know at only 28 i’ll eventually have to deal with somebody close to me (or myself) struggling with breast cancer. i can only hope that the courage and strength you exemplify is something i can exude. a wonderful share. thank you!

  62. midnitechef says:

    My aunt died of this when it entered her brain… my father is a chemist and he was trying to get DCA for her to take but the pharma companies don’t sell it because there’s not enough profit, even though it could help millions with cancer.

    thank you for sharing!

  63. fireygoddess says:

    everyone needs to see this work. not to mention you are a brilliant female role model AND a survivor. awesome. thanks for all your hard work.

    http://www.foundobjectbeachart.wordpress.com

  64. Pressn4truth says:

    Do you know Jesus? That’s really all that matters.

  65. mizunogirl says:

    Thumbs up for this post. I have to admit I am, on occasion, or perhaps often, sort of put off by the “cute and fun” ways to bring awareness to breast cancer. This weekend my gym will be putting pink dye in the pool…do we really need this? Because of it, there are signs posted all over explaining again and again that the dye is safe, though it MAY cause irritation. I’m thinking it would have been easier to just have a bunch of ladies in pink hats ask for donations…
    The money raised will go to help women get mammograms. Like you, I am impressed by the great strides made by awareness/early detection, and research, but it seems that now that some awareness could be raised for Mets, as well as some other very deadly cancers that also affect women, and can be detected early on with proper screens.
    But heack, i did buy my nephews some pink Fire department shirts….which also will help women get mammograms, our county will have the best mammogrammed women out there.

  66. Wow – you are so brave to share your struggle. Research is one of the most vital things, and its so costly. People do not realise!

  67. pryan51 says:

    I can’t add to what has been said above but thank you so much. Very moving and informative, and you have my prayers. I wish I had more.

  68. What courage you have, Susan. Even though you struggle with your disease you think of educating and helping others by describing your treatments and research.

    I hope that all the good will and sincere good wishes shown on the responses to your blog will send enough positive energy your way to help you overcome this horrible disease.

    Sincerely,
    Ronnie

  69. HealingMutti says:

    I have been following you on Twitter since I first heard of BlogHer this year. You are truly an inspiration, and I hope to help in any way I can to improve the amount of discussion that can help get more research.

  70. aparnanairphotography says:

    Susan: We have a family member afflicted with metastatic breast cancer as well. It has become the focus of our family, and this is also part of our new dynamic. As much as I hate it, it is our reality now, and we’re struggling to find a new normal. Looking at you, and reading your words, makes me feel a little bit more at ease. It almost seems as though you have found some sense of day-to-day equilibrium amidst your struggles. I find your strength inspiring. Thank you for sharing this ~ you truly are an inspiration.

  71. I cried as I read you post. I cried for you and I cried for me as I have my mammography tomorrow and I fear the results because of the pain I’ve had for awhile and should have had checked early summer. I pray for you and all women. May there some day be a cure for all forms of breast cancer.

  72. I heard a rumor that (and I am serious) that a mixture of baking soda and something else kills cancer, as cancer is supposedly a fungus, and we all know that baking soda kills fungus. Search YouTube as per below link;

    I would love to know your thoughts on that.

    Also, there is another “source” for a cure to cancer which is the Gerson Institute at;

    http://gerson.org/

    videos on YouTube on Gerson Cancer treatment as well.

    If there is an alternate solution for health, let us spread the word ;)

    All the best, in life and in health

    Ron

  73. Jezzmindah says:

    Oh honey, how brave you are! A total stranger, but by the sharing of your story, someone who I now hold in my heart. I will be praying in fervant faith for you, believing that God will perform the miracle you need. I’m sure you’ve heard things like that so many times it’s now slightly galling, but I’ll be praying anyway. Praying and believing. Thank you for sharing your beautiful story.

    J xxxo
    http://www.jezzmindah.com

  74. cuppachatter says:

    Hi Susan, You are ne of the bravest woman I have come across. I lost my mom to Pancreatic cancer this September, after having fought Cancer for almost a year. I can totally understand being a medical journalist in Canada, that how difficult it is the to participate in trials; fail and succeed finally. Hats off to you dearie…We all hear you!

  75. beautyfull girl… :D

  76. Angie says:

    Susan, you’re amazing. Your poise astounds me.

  77. Feng Shui says:

    You are so brave, you created more aware of metastatic breast cancer, and the realities.

  78. [...] Metastatic Breast Cancer (Toddler Planet) Advertisement Eco World Content From Across The Internet. Featured on EcoPressed High-End Car-Sharing Service HiGear Expanding To L.A. Share this:EmailPrintTwitterDiggFacebookStumbleUponRedditLike this:LikeBe the first to like this post. [...]

  79. Huffygirl says:

    Susan, thank you for sharing your story, and for your work in supporting women and breast cancer treatment.

  80. You are an inspiration! Thanks to women like you, someday there will be advances in treatment for stage IV mets.

    I am a survivor, and I am embarrassed by the pink ribbon which has only come to mean more money for big companies and manufacturers, some who don’t even donate anything but can use the “pink” because they are making women “aware”.

    I wish I could give you a big hug for all you are doing…thanks.

  81. Queen Linda says:

    I worked in Phase I, and would give anything to go back to it so I could support people like you again. I wish you a day free of pain, happiness with your children, and night of restful sleep. Be well.

  82. Liz Benitez says:

    Thank you for your story. I pray you are able to find “hope”.

  83. Susan, thank you so much for sharing. I am currently reading “Emperor of All Maladies: A History of Cancer” and it is very eye-opening to the history of the disease.

    It also talks extensively of former treatments of breast cancer — women underwent mastectomies that rendered their arms immobile – doctors were removing as much as possible in that area. A crying shame, but at least we’ve made (some small) advances in Cancer treatment since then.

    My thoughts are with you, you courageous soul. All the best to you & yours.

  84. lexiconlover says:

    My only wish and hope is for you to feel healthy and be here to continue to be a mommy to your children. You inspire me~

  85. [...] when you buy a pink-ribbon sandwich or eyebrow pencil? And as Amy points out, what about all those underfunded diseases that deserve attention too? “We get a whole month?” she quips. “It’s [...]

  86. natasiarose says:

    Great post. I had no idea about the differences in funding for research for metastatic breast cancer. The information in this post is so moving and informative.

    Stay strong .

  87. gaycarboys says:

    Please take my best wishes. You are very brave. Thanks for sharing this with us so openly.

  88. [...] share what we’re learning with the rest of the world.  The #cancerrebels and pink protesters I’ve linked to in the past and new blogs I find every day are standing up for what we believe in, and [...]

  89. riri82 says:

    Wow. You are a modern day hero. My aunty had the same cancer and watching her deteriorate gave all of us a cancer too.

    I admire your bravery and thank you for sharing your story; I have always considered there to be a cathartic element to writing; I hope you feel this too.

    Best wishes and sending you lots of love and light xxx

  90. [...] If that statistic surprises you,  in the spirit of Breast Awareness month,  I urge you to read this. [...]

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