Breast Cancer Research: Where We Are and Where We Should Be

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C.J. (Dian) Corneliussen-James

Editor’s Note: October 13th is Metastatic Breast Cancer Awareness Day. We are honored to share this guest post written by C.J. (Dian) M. Corneliussen-James, president and founder of METAvivor Research and Support, Inc.

Every year at least $1.5 billion is spent on breast cancer research.  Some of this money comes from an ever-growing number of breast cancer non-profit organizations, but the vast majority comes from government organizations such as the National Cancer Institute (NCI), the National Institutes of Health (NIH) and the Department of Defense (DoD).  The funds go largely to prevention and early detection.

As a metastatic breast cancer (MBC) patient and advocate, I wanted to know why funding was directed to prevention and early detection—which do not help women like me with metastatic disease—so I did a bit of checking.

Here’s the answer: In 1998 the NCI convened a Breast Cancer Progress Review Group (PRG) that established prevention and early detection as the national focus. A formal review of the program in 2004 recommended more of the same. In 2007, the Avon Foundation held its Collaborative Summit on Breast Cancer Research and established a goal of eradicating breast cancer through prevention and finding a cure.  And in 2010, the National Breast Cancer Coalition (NBCC) announced it would end breast cancer by 2020 through the development of a preventive vaccine.

In short, for more than 14 years there has been an enormous effort, seemingly across the board, to concentrate the bulk of breast cancer research on prevention and early detection.

Has the expenditure been worth it?Advances in early detection have led to mitigated success.  It is no longer unusual for breast cancer patients to be diagnosed at stage 0 and many patients are diagnosed at stage 1.  But even stage 0 patients can and do metastasize; in fact, patients can have metastatic cells before they even develop a stage 0 tumor.  As for prevention, it remains elusive.

Given that even this enormous, highly targeted research effort over a long period of time has been unable to achieve the hoped-for success, are the main players re-thinking the allocation of funds?  Much to my great dismay and frustration, it appears that quite to the contrary, the intent is, once again, “more of the same.” It is an incomprehensible decision for many of us in the MBC community.

Roughly 41,000 American women and men are dying of metastatic breast cancer every year. This, and the fact that 30% of breast cancer patients continue to metastasize, makes it clear that there could be no greater impact in the field of breast cancer research than to find solutions that would either significantly extend life for those with metastatic breast cancer or end death from the disease altogether.

Can this be done?  Career metastasis researchers state that this is indeed within the realm of possibility if the research would only be fully funded.  The reason we have seen such miniscule improvement to date is because the bulk of the breast cancer research funds go elsewhere, leaving only the paltriest share of funds — estimated at 2% — for metastatic breast cancer.

Why are other organizations not funding stage IV research?  Here are my thoughts:

1. Image and Turn-Around. Grant-givers prefer projects of short duration with a relative certainty of success.  That is good for the image and encourages future donations.  Mets research is enormously complex and the best chances for significant improvement tend to be out of the box ideas. Such research takes longer to accomplish and the predictability of success is shaky.

2. They are Getting Away with It: Cancer organizations have used token advances to claim they are making great strides forward with metastatic cancer.  The advances they speak of are rare and normally involve extending life at best for several weeks or months, but this is not made public.  Even those who know the truth keep giving, including some of those dying of the disease.  They are caught up by the glamour, the big names and the enticing events.   There is no need to take the difficult road.

3. Money .. Money .. Money. Metastatic cancer research is enormously expensive, especially if sufficient models (animal or otherwise), which are critical to much of the research, are to be developed. What is needed is a comprehensive plan that optimizes the use of funds, promotes collaboration, and devotes research funding proportionate to the percentage of patients, who metastasize –30%.  This must exclude research for the prevention of metastasis, which is a separate issue and must be treated as such.  If we do this, we can indeed bring about significant change.

17 Comments

  1. Posted October 13, 2011 at 2:49 pm | Permalink

    Thank you for bringing this information to light! Metastasis has fallen into the limelight of breast cancer awareness, yet it is wholly responsible for breast cancer deaths. It is also crucial to note that the prevention research that is done is primarily focused on individual behaviors and lifestyle factors rather than environmental exposures. Stopping breast cancer before it starts and reducing mortality from the disease must be the new priorities. The typical awareness campaign isn’t cutting it.

  2. Phyllis Evans
    Posted October 13, 2011 at 3:16 pm | Permalink

    I never really understood why women were dying of breast cancer. Everything I knew had to do with early detection, removal of lump or breast, or BRACA. I don’t think the general public understands that metastasis can happen to anyone after surgery. More information needs to be available, other than “check for lumps”. This is the scary part of having breast cancer.

  3. Posted October 13, 2011 at 4:19 pm | Permalink

    My sister has Stage 4 breast cancer, and I really try not think about what it could mean for her. I don’t understand why women who are “aware” have to keep dying from this disease. There certainly should be more money dedicated to the cause.

  4. Christina
    Posted October 13, 2011 at 7:35 pm | Permalink

    I first stumbled upon BCA’s website several years ago because of my frustration with the blind eye the breast cancer “society” seems to turn to metastatic breast cancer. Like Dee, I also have a stage 4 sister, and I am glad I have found people willing to speak up. Even harder than trying to take on a group-think mob is trying to take on a group-think mob of mainly well-intentioned people (as I see the Komen supporter base), but it is a challenge worth rising to.

  5. Dorothy Wood
    Posted October 13, 2011 at 9:08 pm | Permalink

    I’ve been “cancer challenged” — and yet I have thought in terms of curing cancer as the end goal rather than thinking in terms of that means being able to cure cancers that have metastasized!

  6. Christine
    Posted October 13, 2011 at 10:24 pm | Permalink

    Thank you for this concise article. It drives me crazy that they can blithely write off 30% of the BC population. As long as the myth that nothing can be done to stop metastatic disease persists it will be a self-fulfilling prophecy.

  7. Posted October 14, 2011 at 7:06 am | Permalink

    You have nailed it! Thank you for this well-written article. It is so essential that research is allocated to Metastatic Breast Cancer. Having lost 2 friends at young ages, I find that investing in awareness doesn’t make a real impact. We need answers and more of a cure than early detection.

  8. Anita Fiessi
    Posted October 14, 2011 at 12:03 pm | Permalink

    My mom died of Metastatic Breast Cancer and I never hear of any research being done. I think detection and prevention are fine goals but people still die from all cancers not just breast cancer. Since October is pinkwashing month, the other cancers don’t get a chance to tell there story. Pinkwashing is terrible and should be stopped.

  9. Posted October 14, 2011 at 7:02 pm | Permalink

    Excellent article! I agree on every point but one: The National Breast Cancer Coalition has indeed devoted energy to working on a preventive vaccine, but that is only one of their two major initiatives. The other is the prevention of metastasis. NBCC convened a Summit this summer comprised of advocates and scientists whose sole research focus was on metastatic breast cancer, with many of the top minds in the field, like Pat Steeg, Danny Welch and Suzanne Fuqua. Only through a scientific understanding of metastatic cancer itself, including dormancy, the micro-environment and the role that stem cells may play–as well as other under-researched areas–will we finally begin to effectively tackle the form of the disease that is actually responsible for those 40,000 deaths. Our goal is to end deaths from breast cancer.

  10. Janice
    Posted October 15, 2011 at 8:29 am | Permalink

    Excellent article, thanks!

    I’d like to know more! What needs to get funded but is not?

    We need to raise these funds and get the research funded!

    Can there be a central website that lists projects that cannot get the funding they need?

    Women have been powerful to get the Pink going… we can be just as powerful at changing the focus to be on research for a CURE for cancers, metastatic and otherwise.

    -Janice

  11. caitlin
    Posted October 17, 2011 at 9:46 am | Permalink

    Thanks so much for your comment, Janice. We are inspired by your passion! Two great places to start are http://www.metavivor.org and http://www.mbcn.org.

  12. Robin in Texas
    Posted October 18, 2011 at 4:34 pm | Permalink

    Thank you so much for the excellent article. I am one of those who are in that 30% group and would love to know why so many of us are still dying of metastatic breast cancer. I wonder what it will take for this situation to change. My initial breast cancer diagnosis was supposedly caught early when I was 32 years old. Yet ten years later I was caught off guard by a diagnosis of metastatic disease. Catching it early does not ensure cure. For that I am living proof.

  13. Posted October 21, 2011 at 4:52 pm | Permalink

    Having been the care giver to my wife battling MBC and now devoted to building and supporting mbc clinical trials over the last several years I remain optimistic, notwithstanding the complexity of the disease, that the science and biology advances coupled with the pipeline of new drugs will begin to show meaningful progress in the treatment of suffering patients. One impediment that I have found is accruing patients to participate in mbc trials which is essential to accelerate progress.

  14. Bev Jo
    Posted October 26, 2011 at 3:27 pm | Permalink

    Thank you so much for this blog and information.

    What they do not tell us is that mammograms cause breast, thyroid and other cancers, as well as heart damage. If you ask them, they lie. One mammogram or x-ray is NOT like a plane trip. John Gofman, one of the original nuclear physicists says it’s like a thousand plane trips or more. I told this to a friend who’s father is a famous oncologist, expecting her to protest. She simply said, “I know. All doctors know this.”

    The “Breast Health” industry is a huge business. They make money from cancer. Of course they sell cancer-causing perfume and push cancer-causing mammograms. (And actually heart disease kills more women, so how many have died from hearts damaged by mammograms? Why does almost no one talk about this?) They discourage us from having safe thermograms, and of course insurance does not pay for them.

    After TV doctor Oz said he believed that most thyroid cancer is caused by mammograms, the horrible pink breast clinic I was forced to go to had statements posted about how that was not true. I was given no thyroid protection and only given other protection during the mammogram when I insisted. That place is so obviously about money, and so disturbing. They pretend to be a community place, and even have cancer survivors volunteering.

    I just had surgery for possible ovarian cancer (I was fine, but ovary and uterus are gone now.) My gynecological oncologist said she would not do the surgery she recommended if I did not get another mammogram. I had sworn never to again.

    So if metastases are a suspicion, what do they do? CAT scans cause even more cancer. A Physician’s Assistant recently told me that he was taught at Stanford Medical school that 20% of all US cancers are now caused by CAT scans alone!!! When I told a doctor that, she refused to believe it. But he had no reason at all to lie. And Stanford Medical school? Why is this not common knowledge? Money.

    It is very hard to say no to doctors. They terrify and intimidate. Do they tell cancer patients that they lie about “cure” rates for chemotherapy and radiation? Do they tell you they cause cancer, as well as severe damage, from brain injury to neuropathy to hearing loss and more? A friend who just finished chemo for breast cancer was told she was cured by her oncologist. That is criminal. Usually they wait 5 years. And then the secondary cancers appear from the “treatment,” but are not recorded in the statistics.

    Another friend who had two separate rare and fast-growing cancers, survived with surgery, alternative methods, and by saying no to radiation, chemotherapy and CAT scans. She says that after the 5 year mark, she saw every woman in her cancer support group get secondary cancers from the radiation and chemo. But they are not included in the statistics. Her surgeons had been incredibly cruel to her to try to bully her into those “treatments,” but she survived, 18 years, and 8 years later (from clear cell adenocarcinoma of the uterus and a rare colon cancer.)

    It is VERY hard to say no to doctors without support. My friend’s doctors did NOT want to know what alternative means she used to survive, Her survival is not recorded or in any statistics. She is available to women who want to cal her to get support.

    Please spread the word.

  15. Stacey Kearney
    Posted November 3, 2011 at 6:06 am | Permalink

    The Cancer Society and most foundations toward the “cure” for cancer is fraud. How can we ask for a cure from a multi billion dollar industry who wants to continue bringing in the big bucks. They dont want to find a cure, its all about profit. There has been amazing treatment stories from homeopathic medicine that helps with true prevention. They on the other hand, support toxic medications and food with perservatives in it. They tell women to get mammograms which cause cancer….why can’t they just use themography which senses heat to find cancer and causes no harm.

  16. Rose Eneri
    Posted November 17, 2011 at 11:11 am | Permalink

    Why does the cancer industry push for early detection? The answer is simple. Let’s say you have a cancer that inevitably kills you in 10 years. If that cancer is detected in year 7, your survival is 3 years. But, if that cancer is detected in year 4, all of a sudden your survival time has doubled from 3 years to 6 years. But, your actual survival from the time the cancer started has not changed. You still die in year 10, except that now you live for 6 years (instead of 3) knowing you have cancer and getting futile, harmful, painful and costly treatments. The cancer industry has raked in big bucks for your treatments and gets big donations based on the false “progress” of a doubling of survival time.

  17. Gloria FISHER
    Posted October 6, 2013 at 10:57 am | Permalink

    41 years ago I had a simple mastectomy for intra ductal cell ca.
    in situ, followed by 6000 rads of radiation therapy, as was the protocol way back then. The research I was aware of at time (I was in the medical field) was focused on early detection. Over the years, for which I am grateful, nothing much has changed, considering the amount of money being donated. I am convinced that more can be done for women, but is it that donations are being magically diverted for prostate cancer”?
    I read more about the success and variance of treatments for this part of the anatomy than for breast. And yes, it was 41 years ago,and yes, I was not misdiagnosed! It has been a wonderful life,even with no breasts……..

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