UPDATE: HUFFPO’S JACOBY REVERSES EARLIER MBC STATEMENTS
On 3/19/2015, HuffPo columnist Barbara Jacoby again addressed the topic of metastatic breast cancer. Her most recent column is called “Metastatic Breast Cancer Patients Need Help” and essentially completely reverses all of the assertions she made in her December 2014 post.
At no point does Jacoby acknowledge the previous column or MBCN’s rebuttal. The earlier column–with all of its misleading/false assertions remains online. Jacoby did not reach out to MBCN or acknowledge our complaints. Nonetheless, we are confident she read this blog–as a 100-percent volunteer, 100-percent patient advocate led group we are pleased to have changed her mind. We only hope the people who read her prior column will read her more factual 2015 take on metastatic breast cancer.
“We need to do more,” Jacoby writes in her 2015 post. “We need to allocate more money and resources to research and education. We know that the researchers are out there looking for answers but often do not have the funds necessary to pursue certain theories or do the clinical trials necessary to determine the success of a certain treatment. We have lots of efforts throughout this country raising monies to find the cure and every single donation made and all of the funds raised are needed for so many programs to help those in need. But we need the research to make the long-term difference.”
We couldn’t agree more.
Here is MBCN’s December 2014 rebuttal.
Recently, Barbara Jacoby wrote a blog post entitled, “What Are We Doing about Metastatic Breast Cancer?” In it, she made five assertions that need to be corrected with facts.
JACOBY’S ASSERTION #1
- Public support and and research funding for those with metastatic breast cancer is more than adequate
THE FACTS: According to an extensive analysis by the Metastatic Breast Cancer Alliance, metastatic breast cancer research makes up only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. See www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf
JACOBY’S ASSERTION #2
- Though a great amount of money and research is dedicated to early detection, people should do everything they can to get treated early because that will prevent a metastatic breast cancer diagnosis
THE FACTS: Breast cancer is an extremely complex disease. Some breast cancers will never become life threatening, even without treatment. And many others will metastasize, sometimes many years out, even when caught early. Some cancers are so aggressive that current treatments are ineffective, no matter how early the cancer is detected. Mammograms can’t tell us which breast cancers need treating nor can they overcome the shortcomings of our current treatments.
The majority of newly diagnosed metastatic breast cancer patients had early stage disease 5, 10, 15 or even 20 years earlier. They took advantage of mammograms. Many patients chose to have one or both breasts removed when they had early stage disease “to prevent the cancer from coming back.” The fact remains that research has not yet been able to explain for all patients which early stage breast cancer will return as metastatic disease. Research cannot yet explain the causes of metastasis and why cancer cells travel to particular organs. Metastatic breast cancer patients should not be made to feel guilty because “they did not do enough to be tested or checked.”
JACOBY’S ASSERTION #3
- All research in early breast cancer applies to Stage IV or metastatic breast cancer and all major research groups studying early stage disease are also studying metastatic breast cancer
THE FACTS: It is not scientifically correct to say that “all the major work” in breast cancer research applies to both early stage and to Stage IV breast cancer. Early stage disease and metastatic disease are very different in their complexity, molecular makeup and mutations. Also, breast cancer is not one disease and research about what drives one subtype of breast cancer does not apply to other subtypes. Clinical trial endpoints such as tumor shrinkage may not have relevance to tumor spread or metastasis.
JACOBY’S ASSERTION #4
- Survival rates of those living with metastatic breast cancer are improving because the author “has seen people who are living for 5-20 years with the disease”
THE FACTS: “Seeing” metastatic patients who survive 5 or 10 years does not accurately define the survival rates for the breast cancer community. The fact is that 40,000 women and men still die of breast cancer every year in the United States with metastasis the cause of virtually all deaths from breast cancer. Also, while some progress with research and new treatments has been made in reducing mortality rates from breast cancer, median survival after a metastatic breast cancer diagnosis is 3 years—and this has not increased meaningfully in more than 20 years!
JACOBY’S ASSERTION #5
- Everyone, including metastatic patients, should be optimistic about the future because research will permanently eradicate breast cancer
THE FACTS: Since only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom focused on metastatic breast cancer research (cited above), we cannot feel confident that research in the near future will permanently eradicate breast cancer or end deaths from the kind of breast cancer that kills—metastatic breast cancer.
The very low percentage of research spent on metastasis research also contradicts Jacoby’s assertion that major research groups “everywhere” are “vested in finding the answers needed to treat and eradicate Stage IV cancer.” The field of metastatic breast cancer research is relatively small. Most funding goes to support basic research. There is little research in metastatic breast cancer control or outcomes.
Finally, Jacoby informs us that we can easily confirm her assertion that there has been a lot of progress in metastatic breast cancer. All we need to do is to “check out the progress that is being made.” She evaluates progress based on the metastatic patients she has seen.
Knowing a few patients that have survived the odds does not make for accurate conclusions for the entire metastatic breast cancer community. The existence of “many” treatments and drugs does not mean they are appropriate for all subtypes. Sadly, researchers have not been able to identify the drivers of triple negative metastatic breast cancers, and for patients with this subtype, chemotherapies remain their “best” and usually “only” options. Such treatments with significant toxicities greatly impact patient quality of life.
Metastatic breast cancer is very different than early stage disease. There needs to be more research funding to combat this unique and deadly disease. In addition, in the United States, we lack accurate statistics on incidence, prevalence, and survival. And patients are challenged to find information and support services to help them live with this deadly disease.
Metastatic Breast Cancer Network
Reblogged this on ihatebreastcancer and commented:
MBCN is a founding member of the Metastatic Breast Cancer Alliance. On October 13, 2014, the MBC Alliance revealed the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer. You can read a summary here: http://mbcalliance.org/docs/MBCA_Exec_Summ_Landscape%20Analysis.pdf.
As one of the 29 cancer organizations working together under the Alliance’s banner, MBCN wants to transform and improve the lives of people living with metastatic breast cancer. One of our goals is to increase the understanding of MBC and how it differs from early stage breast cancer. Reading Barbara Jacoby’s recent HuffPo blog on progress and metastatic breast cancer reinforces the need for the MBC Alliance as well as the ambitious scope of this project. Clearly, we have much work to do. Read on for MBCN’s rebuttal of the HuffPo piece.
Reblogged this on Sherri Fillipo and commented:
Thank you so much for addressing these assertions. It is imperative that inaccurate information be addressed, no matter how well-meaning.
[…] Separating the facts from the fiction – a must-read on metastatic breast cancer by the Metastatic Breast Cancer Network. […]
Thank you for this very important post.
Kudos! I responded to the original article with many of the same points you made … and my comment was deleted. Not once, but twice! There is fear in hearing the voices of metastatic breast cancer patients and deleting comments such as mine reflects that fear. The truth hurts … and Barbara Jacoby needs to acknowledge the truth. There is NOT enough being done about metastatic breast cancer.
Thank you for responding and in such a concise, factual manner.
Inaccurate information like this is pervasive and continues to spread through the media.
Thank you for all of this vitally important information.
On behalf of those living with MBC Thank you for this great reply with more accurate information.
I like the method of step-wise discussion of assertions versus facts on Metastatic Breast Cancer.
Yea at last, I’m in my twelfth year of stage 4, being treated as cured! But it took 12 years to reach stage 4, and when asked why I’m classed as cured was told they just have no research to do otherwise. Why?
Update: on Jan 28, 2015 HuffPo published Marc Hulbert’s article on metastatic breast cancer. He clearly spells out the need for urgent action: http://www.huffingtonpost.com/marc-s-hurlbert-phd/quantity-and-quality-of-life_b_6535758.html