Today is National Metastatic Breast Cancer Awareness Day. Last Friday, a new collaboration amongst breast cancer organizations—the Metastatic Breast Cancer Alliance—was announced, and the Dr. Susan Love Research Foundation is one of the fifteen founding members. Why?

I have written about my difficulties with the concept of calling people who have completed cancer treatment “survivors.”  This implies that the “enemy” has been vanquished, never to return.  I wish it were that simple. The development of technology that can detect isolated microscopic cancer cells in the blood of people with early breast cancer has made us acutely aware that breast cancer cells “get out” before diagnosis in the majority of people.  Some of the cells that leave the breast probably die in transit, while others find new niches where they hide out, dormant, until you either die of something else or they wake up.  In fact, that is the exact argument for giving people with “early” disease adjuvant treatments with chemotherapy, hormones, Herceptin or some combination of the above.  We are treating the micrometastases that we suspect are there even if our tests and scans cannot show them or even show that they are gone.  Knowing that they are there is just a matter of how hard we look for them.  It wasn’t that long ago that we considered someone to have metastatic disease when a physical exam demonstrated palpable disease in a mastectomy scar or obvious disease in a bone on an x-ray. Now with more sophisticated methods of detection, we consider someone to have metastatic disease when a sensitive PET scan or blood marker test shows evidence of disease.  It is likely that we will soon lower the bar further to include people with circulating tumor cells in their blood but normal scans and markers.  Does that mean that we all have metastatic disease?  Probably!  The question becomes not whether it is there, but rather, whether it is causing problems that need treatment.

I think it is important to realize that the goal for all of us is to live as long as possible with the best quality of life that is possible, whether we have cancer, have cancer but don’t know it, or just haven’t developed it yet!  The cure must not be the measure of success!  And women with known metastatic disease must not be thought of as different than those whose disease may just be dormant.  Think of AIDS.  While we do not have the cure, we have enabled many people who thought they were facing an early death to live reasonable lives with a chronic disease for longer and longer periods of time.  While our goal is often expressed as the cure, control may not be a bad temporary compromise.

So in honor of all our sisters and brothers living with known metastatic disease, let us honor their experience while recognizing that theirs is a much bigger club than we have previously acknowledged. It’s a club that many of us may be members of but just don’t know it yet.  We need to go beyond the artificial separation of stages and recognize that all invasive breast cancer is metastatic from the beginning.  The issue is whether the cells are under control or causing problems!

We need to join together to call for research into the cause of the disease while fighting for better treatments.  And we need to all contribute to research whenever possible to move things forward, not for one subgroup or another, but for all people whose lives have been touched with the disease! Together, we are stronger than the disease.

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26 Responses to All Cancer is Metastatic!

  1. Gloria R Wakefield says:

    Thank you Dr. Love for speaking yet another truth and rarely discussed harsh reality of this disease. I am living with 2 different primary diagnoses, the second diagnosis was 22 years after the first. For 22 years I believed I was a survivor…I no longer hold that belief. I am an advocate with hope that your pleas and your actions will help move us to a community of people living with a breast cancer diagnosis. Your efforts, to help us recognize that we can and must work together to bring about the change in the breast cancer culture that we all so desperately want and need, continue to be an inspiration.

  2. Carol LaRegina says:

    Thank you so much Dr. Love for always telling the truth ad being up front about cancer….As October has become breast cancer awareness month, we are overcome with pink everywhere and we sometimes lose sight of what breast cancer really is ….. I was diagnosed in 2000 and then had cancer return in 2005… I do consider myself a survivor, but I know there is always the reality this can return ….. So thank you for your work, your tireless effort given, I am proud to be a part of the Army of Love!

  3. Roberta McKee says:

    Thank you for saying what everyone else is afraid to say. I am 1-1/2 years post chemo, 1 year post radiation treatment, 8 months past my final Herceptin therapy and 1 year into Arimidex adjuvant treatment. The on-going onocological and surgical checkups and screenings are a testiment to the fact that my team is ever vigilant of a reappearance, although they declare me “cancer free”. My mother’s resurfaced just a few months shy of that all important 5 year mark, and ultimately took her life. It is folly to be lulled into thinking that “it’ll never come back”, but it is important to live as if it won’t. And it is extremely important that the medical community embraces and exhorts the realities of the disease. Thank you, Dr. Love, for you honesty and commitment.

  4. This divide, between Early and Late Stage Breast Cancer, doesn’t exist with other forms of cancer. This barrier must be removed and those of us with Metastatic Breast Cancer are fully accepted within the BC Community. Yes the realities of this disease are tough, but ignoring them won’t make them go away. There is no magic formula to make sure that it won’t return and that fear will not be mitigated until we have effective treatments for Metastatic Breast Cancer.

    By the way, as we make up over 30% of the breast cancer community METAvivor are leading a campaign to claim 13 – 22 Oct for Metastatic Breast Cancer Awareness. I like it!

  5. Kathleen D. Schelling says:

    My husband and I are currently playing “keep away” with my metastatic disease. I have had four PET scans and have never had a positive result, my markers and my CTC’s have never been alarming. However, upon proactively removing my ovaries, to accelerate menopause, breast cancer was detected with the biopsy. My doctors along with myself were completely shocked at this discovery! A year later, without any other symptoms, I passed a small, quarter sized clot of blood. The biopsy showed breast cancer present in my uterus! At that time I had a hysterectomy! No one can tell me if these instances would have ever developed into an active problem for me. No one can tell me what I need to do to “keep these inactive cells” from becoming active, or how many more breast cancer cells swirl within me. I try very hard not to live in fear….but it can be extremely challenging when you feel like a ticking time bomb, because no one really knows what to tell me. I have never considered myself a survivor….because I have never stopped fighting to keep myself from being beaten by what lurks within me. I have six years and 10 months since my diagnosis, I’ve had a bilateral mastectomy, free tram flap reconstruction, 16 weeks of chemo, 34 radiation treatments, an oophorectomy, a hysterectomy, lupron injections, tamoxifen, exemestane and now letrozole. I feel healthy, and I’m told I look healthy….but I would sleep more soundly if someone could tell me what to do to win this game of “keep away”! Thank you Dr. Love, thank you for being the voice and the warrior so many of us out there need! I await your findings! In the mean time…..I appreciate every minute, I spend money frivolously, and cherish my loved ones!! Oh, and when I GET to celebrate another birthday it is truly an event in my house!!!

  6. Teri Revels says:

    Hi that was an uplifting article i have metastatic breast cancer and still going strong! ! Yes we do have to find cure for this disease and more needs to be focused on advanced stages so we can lead longer lives. If it werent for God having Faith and trusting in him he wiuldnt have been blessing this far. Onlythe lord knows wat he has planned for you! !! We all just have to keep fighting !!!!

  7. IreneN says:

    This is what I have thought as a cancer researcher and cancer survivor. If you have enough of a blood supply for the tumor cells to grow, then the cells have already had the opportunity to move. I don’t let my oncologist tell me he hopes I’m “cured”. When I allow myself to think about it, I wonder where those cells are “hiding” and if they are going to “wake up”. It’s a tough reality but that’s what it is, reality. Thanks for bringing the reality of this disease to the forefront.

  8. Brenda Denzler says:

    In all, an excellent blog. I have just one correction to offer.

    You say, “The cure must not be the measure of success!” I would say that “The cure must not be the ONLY measure of success!”

    You do, later in the paragraph, point out that long-term control is good as a temporary compromise. Which I can accept.

    But I am ever cautious that this “temporary compromise” doesn’t drag on and on, for eons and eons, as we settle for “good enough” half-measures and lose sight of the real prize: true cure.

    Having just read an article on the cost of breast cancer, I fear that a temporary compromise is going to cost even more than a cure would, in the long run. And the question is how long the health care system, with all of its many players, would be willing to pay for a costly treatment regimen (the largest share of the cost of BC treatment is for that intermediate period between the first year after diagnosis and the final year of life, according to the article) that drags on and on for years and years…with no end in sight.

    Compromise is good. An intermediate goal is good. As long as we don’t lose steam and motivation as/if we achieve it and thus fail to go after the real prize: complete cure.

  9. Dina says:

    As someone who just finished surgery and radiation for early stage breast cancer (and started a regimen of tamoxifen), I am not tagging myself as a survivor, but I would like to feel like I’m doing all I can to combat the disease. Your blog post takes a little of the steam out of that feeling. I know based on your wonderful book that my treatment is state of the art and that I’ve done everything I can so far. Are you making the point about all cancer being metastatic to emphasize that those long term treatments are important as is research into additional forms of treatment?

  10. Dear Dr. Love,
    When I was first diagnosed in 1997, yours was the first book that made sense. Here it is, 2013, 16 years later, I’ve been through a seven-year remission, a bout of spinal mets in 2004, lung and liver mets in 2010, and a malignant stomach ulcer in 2013. No, I am not cured, but I’m living!
    Thanks for the great message!

  11. Living longer and better – that sounds good to me!

  12. Susan Zager says:

    This is such a great message! You are so inspiring. We are all in this together at all stages. And yes together, we are stronger than the disease!

  13. anita blanchette says:

    I do believe that in saying ‘All stages are the same’, it’s another form of ‘pink washing’. Susan Love’s post reinforces the idea that ALL stages are equal. Well if that were true then the populous would be aware of stage 4, as well as all the early stages. If it’s time to say that we are all the same, then…..
    ………Where are all of the MBCer’s representing the ‘end stage’. Why is all of the impetus on the ‘CURE’. Why is it not mentioned that 30% of those caught early will become metastatic? Where are the funds for an ‘equal’ share……..for stage 4 research? Where are the BC groups that allow the ‘surviving’ stage 4 members to be included? My experience has been clear……….. that in BC groups, the stage 4′s are not wanted…….because it ‘scares’ all of the early stage members. When will the Metastatic members of this universal ‘survivorship’ be represented? We have been escorted out of ‘Pinktober’ events., NOT permitted to speak at BC events, NOT allowed to enter the populous at the ‘pink parade’ nor rallies. When the general public is aware that metastatic breast cancer is part of the entire group and AWARENESS is universal…………….only then will the MBC members feel as A PART of the BC as a whole.

    I do NOT think the MBC is and should be categorized as a ‘chronic’ disease. MBC is NOT like diabetes, NOR is MBC like arthritis. MBC is NOT asthma, NOR is it cardiac disease. I know there are NO other diseases that require never-ending, TOXIC tissue killing poisons for therapy, for the duration of life. NO!!!! MBC is NOT a ‘chronic’ disease………..and it’s offensive to make such statements. Perhaps those who are treated successfully with hormones can temporarily use the ‘chronic’ title…………..But eventually, the ‘chronic’ becomes actively metastatic……..and unpredictable………..and deadly.
    NO!!!!!! MBC is NOT just a ‘chronic’ disease.

    So,…………………..When I mention MBC and no longer get that ‘deer in the headlights stare’ and/or the response,………. ‘Wait. How many stages are there’? …………OR ……..the response of, ‘Don’t worry, you will be cured’?…………..Because nobody is AWARE of……………what MBC is or means.

    If Susan Love wants to ‘glom’ us all the stages together,…………….
    I recall that, of course,

    she is a ‘survivor’ of Breast Cancer…………………..

    She is NOT ‘SURVIVING’ MBC.
    AND……………There IS a big difference.

  14. Anya Silver says:

    Thank you for this fantastic article. I agree that Stage IV women have been shunted out of view during “Pinktober” as the embarrassing failure of breast cancer treatment. But we are here, fighting and living life. Five years after my diagnosis of inflammatory breast cancer, I was told that I was cured. Half a year later it recurred. I don’t believe that the cancer ever went away; it just lay dormant. Since then, I have had three years of high quality of life but continued treatment. During that time, several dear friends of mine have died. So no, I don’t believe that MBC is truly a chronic disease yet, but I hope that it will be in the future.

  15. I think you strike a number of chords here.

    First, the artificial division between stages. I remember when I was first diagnosed in 2002 how I naively prayed I would be put in Stage II rather than Stage III. What was lost on me is that my cancer was what it was – no number was going to change its actual state of existence. In the end I got my Stage II…and 8 years later my mets diagnosis.

    I also understood that I underwent chemo to “avoid” mets – but of course, that makes no sense at all. The whole point of chemo is to destroy errant cells – so chemo is only EVER given on the assumption that it HAS spread (and that it “may have spread” is splitting hairs).

    As for rendering the disease chronic – if we get to a point where living with MBC IS like living with asthma, diabetes or HIV, I’ll take it, but I won’t settle for it. I agree that we aren’t there yet!

    Finally, I have to acknowledge that the investment in distinguishing mets from early stage “survivors” swings both ways. As much as I’ve seen support groups shun mets patients so that they can continue to keep their heads in the sand, I’ve also known a handful of mets patients who insist that no one else can understand them except other mets patients. While I have little patience for the pollyanna “you can beat this” garbage, nor comfort with the early stage “I am cured” language, I try to use both as an opportunity to educate – and sometimes I scare someone out of complacency. But if mets patients want a seat at the table, we too must be open to middle ground. While in retrospect I must admit that in 2002 I really did not understand what living with mets was like, and thought we had a “shared” cancer experience, I see the world differently since my 2011 mets diagnosis. Nonetheless, I think facing mortality because of a cancer diagnosis is a nearly universal experience, and as a mets patient I try to honor the seriousness of those who become NED after early stage treatment.

    There were some interesting conversations about this and more on last night’s #BCSM Twitter Chat. For what it’s worth, another topic I found fascinating was the question of whether physicians should ensure that early stage patients are explicitly aware of the possibility of metastatic disease down the road, even if the patient doesn’t want to hear about it.

    Thanks for this great piece!

  16. Dr Susan Love says:

    Anita Blanchette Thanks for your comments! I think you misunderstood my post and my situation. First of all I am not a breast cancer survivor, I live with the diagnosis of AML or leukemia which actually has a higher recurrence and death rate than breast cancer …80% in 2-3 years!
    The point of my blog, however, was not to marginalize metastatic disease by suggesting that everyone has it but rather to show that there is no difference in fact between those diagnosed with Stage I-III and those with Stage IV. These are arbitrary distinctions because the vast majority of people with invasive breast cancer have microscopic metastatic disease that can reemerge at anytime. The difference between someone who is designated STage I-III and one who is designated Stage IV, is a test that can confirm the microscopic cells that we know are there. As the tests become more sensitive the number of people with the label of metastatic disease increases.
    The goal of my blog was to demonstrate that everyone is in fact in the same boat with a disease that can be controlled for a time but that can also come back at anytime and take your life. If we all work together on finding treatment that will work for everyone then everyone wins. This is the science!
    The problem is not the labels, it is a our culture and media which insists on designating some as winners/survivors/courageous etc and other as ????? By thinking about breast cancer patients as belonging to one of two groups we perpetuate this inaccurate way of categorizing people and their disease.
    It is your feelings of exclusion that prompted me to write the blog in the first place. It is not about us versus them but about a disease which no one asks for, we don’t fully understand can control! That is the enemy and I think we should all work together to vanquish it!

  17. anita blanchette says:

    Susan,
    I had made the correction, regarding your leukemia, but didn’t change the duplicate 2nd post correction.
    Thank you for your response. It’s certainly has opened a topic to ponder.
    We definitely need more ‘awareness’ spread on the difference between the MBC and earlier stage. It could help in many ways. I am constantly repeating the same conversation every time somebody says, ‘Oh, you’ll beat this’. Ughhhhh! It’s unpleasant to talk about ‘incurable’ anything. Not to mention the repetitive energy vaccuum that takes place reinforcing the same conversation. Is like to hear that a spokesperson with MBC at every fundraiser. Sad? Yes………but truthful and educating. I bet that this truthful approach could be very inspiring for many women & men. At the least, the populous will learn what can and does happen realistically.

  18. Margaret Hughes says:

    Thanks Dr. Love. This is a very helpful article which could unite the efforts of all of us with breast cancer and dare I say cancer to focus on finding a cure.
    Margaret

  19. Rachel Becker says:

    Dr. Love, I found your blog fascinating and do have a question that I hope you can answer….to scan or not to scan. I have an oncologist who doesn’t believe in yearly PET/CT and another who feels remiss if they aren’t done. Just wondering what your take is on this in light what you’ve said in this blog. Thanks, Rachel

  20. Carol Magee says:

    Dr. Love,
    As a former public health provider turned epidemiologist, as well as a 10-year post- diagnosis Stage 1-B patient (note I avoid the term ‘survivor’!), I’ve experienced BCA from most angles. Your strong, persistent, and enlightened advocacy for a more realistic, evidence- based public grasp of prognostic facts is so commendable – and not just from the important standpoint of better marshaling of resources to assess and treat the entire spectrum of these genetic aberrations, versus the false categories of Staging. The other benefit will be to help those dealing with advanced, diagnosed Stage IV disease to not have to endure the very prevalent societal implications that somehow they are ‘failures,’ haven’t fought the ‘good fight,’ or otherwise haven’t been fully compliant with medical recommendations. Witnessing these very stressful psychological effects on women with advanced disease, one can only wonder how detrimental this is to both their quality of life and their body’s physical/immunological struggle to contain their metastatic tumor(s).
    Thank you again for your efforts to save BCA patients, both in the operating room and in the research arena!… and my fervent wish for a successful outcome in your personal experience with cancer.

    CAM

  21. Susan says:

    Rachel, there was a randomized controlled study looking at whether it was better to scan regularly or wait until someone has symptoms. The answer was that there was no difference in outcomes. In other words it does not matter if you treat mets early when only seen on scans or wait until there are symptoms. Survival and responses are the same. This could change if we had better drugs. That being said oncologists like to scan and treat. They have trouble getting out of the mindset that early must be better. Some own the scan equipment and all make more money when they treat. I don’t want to imply that they are all in it for the money, because I don’t think that is true! I just think if you could go either way and one way is more lucrative…….

  22. VJ Sleight says:

    I had a relapse after 23 years and realize I will live with BC for the rest of my life whether it is active or not. But my goal is NOT to live as long as possible, my goal is to have the best quality of life for as long as possible. This goal was a major reason why I declined chemo with this relapse. I am not afraid to die, I am afraid of living too long with the devastating effects of treatment, only to gain a little more time. For others a little more time might be their goal regardless of the quality of life, I would not judge them as I ask others to not judge my decision.

  23. Sara says:

    I have to admit, that as a Stage IIIa bc patient – can not say survivor as I feel like it will jinx me and hate when someone refers to me as such, that I actually have had attitudes about those that are “insitu” or Stage I- actually refer to it as “cancer light.” How awful is that?!!! I get so frustrated when they proclaim they are survivors and get up on their pink grandstand. The reason: I feel like they have not put up as much of a fight as I have or have witnessed the strength and tenacity of others with Stage IV. When I was first diagnosed, I had many suggestions to speak to women who “just had the same thing happen to them” only to find out, their diagnosis was not as advanced as mine or just completely different, which lead me to worry more about my outcome. When I finally met people with Stage IV, they scared me as I examined my mortality and at the same time gave me an odd sense of relief – “boy am I lucky it’s not inflammatory or only in my breast and lympnodes.” This disease provokes physical, emotional, and social issues for everyone. It horrifies me that so many women are diagnosed on a yearly basis and that we see so many of the new patients diagnosed at a much younger age. I tend to agree with some of the statments regarding women in Stage IV or Mets, we keep them in the background as if they are a sign of disapointment or will bring down the momentum of whatever, walk, run, row, ski event is bing promoted in the name of the “cure.” When they are the ones that should be out on the pink podium, showing that it is possible to live and thrive with the disease. They are the heroes in this and they are the ones we should be cheering on and supporting and doing research for as there is potential for all of us on the other side of Stage IV to get pushed over the fence. I have been a firm believer in “screw the cure, what’s the cause?” This thought process may be offensive to some, but my feeling is, there are cures (as toxic and painful as they are) but until we find out what is causing it at such an alarming rate, are we making any headway? I gave three years of my life to this disease, adjusting to the diagnosis, fighting it, getting healthy and trying to move on from it. I don’t want to spend one more minute on it but as you said, it probably is in me somewhere, laying dormant waiting for the right opportunity to rear its ugly head.

  24. I’ve always suspected that all cancer is metastatic, for the very reasons that Susan just wrote. I’m not a medical professional, but from the time I knew i had cancer, I identified it as a wily, subtle entity that already fooled me into thinking I was fine, when I was walking around with a large tumor for at least a year before I found it, myself. It’s said: Once, shame on you; twice, shame on me. I’ve had NED since at least 2007, when I stopped treatment (except for tamoxifen), but I’ve never taken my eye off that killer. I see it as a black blob in a corner, capable of seeping out and making another grab for my life. So I take the tests and watch carefully. I also exercise like a fiend. So far, I’m winning.

  25. Donna says:

    I cringe when I hear BC patients told they at ‘all clear’ or ‘in remission’. That false sense of hope makes Mets that much more terrifying. After 7 yrs with MBC, first bone, then brain and now liver, I know it can be slowed or stabilized but not ‘stopped, YET!’. Thank you Dr. Love for your courage and attitude that will be the difference!! I see your efforts leading to the possibility that I may see my 10 yr-old son grow up!! As a Project Lead (2007) grad I do what I can to advocate for research. I am constantly using the Love Foundation and the Army of Women as examples of how to do this the RIGHT way!!

  26. I just wanted to add that a friend, a researcher, became a former friend (his choice, not mine) because I refused to divorce myself from Susan’s view on metastasis. His expertise will be missed on my monthly “Chemotalk” newsletter. So will his friendship.

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