By now you have noticed that it is October, and that a pink haze has settled on the land. The message of early detection saves lives has been broadcast on every form of media available. But there is a part of the breast cancer story that is less feel good and less frequently mentioned woman living with metastatic breast cancer.

Have we gotten better at detecting breast cancer? Yes. Have we gotten better at treating this disease? Yes. But we haven’t gotten good enough. Despite doing everything that we now can, about 25 percent of the women who are diagnosed with and treated for early-stage breast cancer will later learn that they have metastatic disease. An additional 4 to 6 percent of all breast cancer cases will be in women whose initial diagnosis is stage IV, metastatic disease.

Right now, about 150,000 people in this country are living with metastatic breast cancer. At this stage, the cancer can be treated and women can live for many years with stage IV disease but it is not considered curable. These women connect on websites like BCMets.org, AdvancedBC.org, and BrainMetsBC.org to find support, get the latest research information, and to share their hopes and fears as they try to embrace what many refer to as the new normal living with metastatic disease.

These women, as Roni Caryn Rabin wrote in the New York Times,  are not [leading] pink-ribbon lives: They live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World.” Some will live for years; others won’t be so lucky.  Elizabeth Edwards comes to mind.

Thursday, October 13 is Metastatic Breast Cancer Awareness Day, and I can’t tell you how important it is that there is at least one day in October that is dedicated to acknowledging that not everyone is cured and not every cancer is found early. We need to stop congratulating ourselves on our progress and start focusing on figuring out why these women have not benefited from all the money we have raised. Reach out today to someone you know that represents the other side of breast cancer, the one that is not so pink. We will not have accomplished this goal as long as one woman dies of this disease!

You can learn more about metastatic breast cancer as well as find a list of resources and programs for women with advanced disease here.

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12 Responses to Metastatic Breast Cancer: Telling the Whole Story

  1. danita soqui says:

    Thank you for this article, this needs to be out for all the world to see and hear.
    I am stage 4 on initial diagnosis may 2009 mets to bones many places and ovary, and now liver in less than 2 1/2 years…
    -Dan

  2. Glenda says:

    Thank God for Susan Love and her foundation.I was diagnosed stage IV 16 years after my initial diagnosis and treatments.

  3. Susan says:

    This is an important article, sadly needed to, as NBCC claims, “peel back the pink”. But metastatic disease comes in all flavors, too, and some, believe it or not, are really living despite treatments. Some, probably the ones who do not stay on the Breast Cancer sites, are on easy to take drugs like aromatase inhibitors, for many many years. Every woman is different and there are treatments out there, of course we always want and need more!
    I was first diagnosed, age 41 with DCIS, then 4 years later with invasive, same breast, then 8 years later, with mets to bone. I am now 11 years living wth Mets. Every case is not the same, I do require scans, different treatments, lots of dr. appointments, but I am part of the Metastatic community too.
    Taking active control in our lives is essential, from second, third, more opinions the same as we did when first diagnosed, to going to conferences, to taking the step to learn more about research. There are many ways to get involved, from support groups esp. for mets patients, to speaking on panels, to becoming an advocate on research grant review selection panels. I want to learn all I can and help others and our children and grandchildren.
    And along the way I meet in person or on line or through the words in books and articles written by people going through the metastatic breast cancer journey, intelligent, LIVING women. I know it is hard to think of longer term survival when confronted with a mets diagnosis, but some people are around for years. Often just these words are important when we all see the statistics, the numbers, the problems many have who post on message boards.

  4. Linda says:

    Great article – however in response to a comment – not all on AIs find them easy – I find them totally debilitating. I would love to live that good life – but so far it is month to month chasing the nebulous “stable’ and modality after modality to ease the pain and disability the “easy treatment” brings. Remember that for every woman who is alive at five years. Four died. Even those statistics are acknowledged as not reliable – so few are kept for the Stage IV BC population. It depends on the hospital, authority or oncologist one asks about the yearly survival rates. are.

  5. Dr Susan Love says:

    Thank you all for your comments. Indeed there are different kinds of metastatic disease just as there are different kinds of primary cancer. And some women can indeed live a good life for a long time. I just heard Dr Pat Steeg talk about mouse research where a drug can make the metastases dormant! I offered the AOW to recruit for a trial in women when they are ready. It is time!

  6. Natasha says:

    Why do people say: “women living with metastatic breast cancer” instead of “women dying with metastatic breast cancer”? It is known metastatic BC is terminal. The portion of women who is able to live with mets is so small and insignificant. You can at least say “women living with metastatic breast cancer but not too long.” That would be telling the whole story.

  7. Dana Loewy says:

    I enjoyed the article and the responses to it. Yes, I’m also “pinked out” this month and sometimes despair of the glacial pace at which progress is being made in finding a cure for BC.

    What has bugged me since my diagnosis almost 10 years ago is all the euphemisms surrounding the disease and the pressure to “think positive.” While positive thinking has a desirable effect on a number of diseases, it doesn’t mean DENIAL and proclaiming that a) cancer is a blessing in disguise (it is not!) and pretending that b) it is not an often fatal disease.

    Being realistic and facing the odds is not being negative. Nor is it negative to cry, be angry, depressed, and all the other varied emotions a cancer patient experiences.

    In short, I’m tired of the forced optimism and unrealistic claims in our public debate about BC and and other cancers.

  8. Elaine Lewter says:

    When I was first diagnosed in 1989, many people told me it was important to have a “positive attitude”. I actually asked my husband if I had a positive attitude because I really didn’t understand what it meant and it sounded like if I didn’t get it right, I was more likely to die. Very scary! after 22 years and two mets at years 13 and 21, I think I have my own definition that is more like live every day as it comes and enjoy life when you can. Then no matter if you live short or long, it will be a better life.

  9. Annie Q says:

    thank you for this article, no one every talk about the women who got diagnosed early yet later have mets. It is almost like they are afraid of catching it or it is of some fault of the patient. I have had breast to brain for three years and doing well after gammaknife.

  10. L Follmer says:

    Dear Dr Love, I am a daughter of a mom whom had metastatic breast cancer and died in Oct 1964. I just recently was told she had the breast cancer before I was conceived. Since mom had cancer while I was in utero, do I have more or less chance myself? Do I have any immunity like a live flu shot from her cancer? I have nobody to ask or talk to about my mother. Thank you for any answer you may give me.

  11. Kali says:

    This article hits close to home. Thank you for posting it and allowing others to understand what some of the strongest women in this world struggle with every day.

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