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Identification of Prognosis-Relevant Subgroups in Patients with Chemoresistant Triple Negative Breast Cancer

Identification of Prognosis-Relevant Subgroups in Patients with Chemoresistant Triple Negative Breast Cancer | Breast Cancer News | Scoop.it

"Purpose Triple-negative breast cancer (TNBC) patients with residual disease after neoadjuvant chemotherapy generally have worse outcome; however, some patients with residual tumor after neoadjuvant chemotherapy do not relapse. We hypothesize that there are subgroups of chemoresistant TNBC patients with different prognosis."

Susan Zager's insight:

For triple negative breast cancer patients chemoresistance is very important to study while they try to find new treatments that will work.

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Government laments 'disappointing' fall in breast cancer screening rate

Government laments 'disappointing' fall in breast cancer screening rate | Breast Cancer News | Scoop.it
Health minister Sussan Ley calls on Australian women over 50 to make sure they are up to date with screening appointments
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Atomic force microscope advance leads to new breast cancer research - Phys.Org

Atomic force microscope advance leads to new breast cancer research - Phys.Org | Breast Cancer News | Scoop.it
Researchers who developed a high-speed form of atomic force microscopy have shown how to image the physical properties of live breast cancer cells, for the first time revealing details about how deactivation of a key protein may lead to metastasis.
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Value in Cancer Care | ASCO.org

Value in Cancer Care | ASCO.org | Breast Cancer News | Scoop.it
ASCO Releases Value Framework

ASCO has released a conceptual framework for assessing the value of new cancer therapies based on treatment benefits, toxicities, and costs. The initial version of the ASCO Value Framework was published on June 22, 2015 in the Journal of Clinical Oncology.
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Breast Reconstruction, and Why 'Living Flat' Is an Acceptable Option

Breast Reconstruction, and Why 'Living Flat' Is an Acceptable Option | Breast Cancer News | Scoop.it
This group has been invaluable in helping me come to terms with my post-surgery body. Being part of this community I know I am not "militant" as one of the hospital nurses described me, but just a woman who was absolute in her resolve to avoid any additional surgery. For me, getting back to normal life after cancer is not about getting a new breast but getting as healthy as possible, as quickly as possible. The truth is I have lost my breast to cancer and no surgery will replace it.
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Stimulating Data-driven Innovation in Breast Cancer Research - The HHS IDEA Lab

Stimulating Data-driven Innovation in Breast Cancer Research - The HHS IDEA Lab | Breast Cancer News | Scoop.it

"Research suggests that genetic factors play a key role in determining who is at increased risk of developing breast cancer, as well as the type of breast cancer they develop. Genome-wide association studies (GWAS), which compare the genome of healthy individuals to those affected with breast cancer, have helped to identify more than 90 common genetic variations that are associated with breast cancer risk. Although GWAS have greatly enhanced our understanding of the genetic component of breast cancer susceptibility, the results to date explain only a small portion of the estimated genetic contribution to breast cancer risk.

NCI, a part of the National Institutes of Health (NIH), wants to increase the number and diversity of minds tackling this problem.  They teamed up with SAGE Bionetworks, to inspire novel cross-disciplinary approaches to more fully decipher the genomic basis of breast cancer.

NCI will award up to $50k in prizes based on identification of novel findings, replication of findings, innovation of approach, evidence of novel biological hypotheses, and collaboration. Challenge organizers aim to shift the focus of analysis from individual genetic variants to genetic pathways, and explore the heritable contribution of breast cancer disparities.

The U4C will make breast cancer genetic epidemiologic data more widely available."


Susan Zager's insight:

To apply and for more info go to: https://www.synapse.org/#!Synapse:syn3157598/wiki/


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Pinpointing the Onset of Metastasis

Pinpointing the Onset of Metastasis | Breast Cancer News | Scoop.it

Within the oncology community, a debate is raging about two controversial topics. The first is overdiagnosis. According to a recent report in The Wall Street Journal, some leading cancer experts say that zealous screening is finding ever-smaller abnormalities that are being labeled cancer or precancer with little or no justification.

Boston, Mass.-based MetaStat Inc., whose Scientific and Clinical Advisory Board is chaired by Oscar L. Bronsther, MD, is aiming to provide more clarity for patients and oncologists when deciding what’s next after a tumor is removed. The company has developed new tests to analyze whether a specific individual’s cancer has metastatic potential, MetaSite Breast and MenaCalc. These tests are intended to potentially allow clinicians to customize cancer treatment decisions by identifying and differentiating high-risk patients who need aggressive therapy, and by possible sparing low-risk patients from the harmful side effects and expense of additional treatment….

MetaStat’s researchers have identified the important predictive role of the Mena protein. Mena is found in the developing embryo where it is an important actor in the developing nervous system among other functions. It facilitates and organizes formation, extension and navigation of growing nerve fibers through tissue to link with other neurons, forming the proper circuits needed for a functional nervous system. Its expression decreases from embryonic to adult life. However in metastatic cancer cells, high levels of the Mena protein accumulate and influence a number of intracellular signaling programs. "

Susan Zager's insight:

The work they are doing to see if they can identify an individuals cancer and predict whether it will become metastatic, appears to be worthwhile research. While they have not competed the  MedaSite Breast test (immunohistochemistry-based test performed on FFPE tissue from a biopsy), this research is something to watch out for in the future. By furthering this research we hope it leads to how mets can be reversed so it can also help those who already have mets.

To learn more go to: http://www.metastat.com/pipeline/metasite-breast

Another article: 

http://www.sciencedaily.com/releases/2014/06/140603161932.htm


For the study reference go to: http://jnci.oxfordjournals.org/content/106/8/dju136



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Cryopreservation Helps Breast CancerPatients Conceive After Treatment

Cryopreservation Helps Breast CancerPatients Conceive After Treatment | Breast Cancer News | Scoop.it

"Breast cancer patients can achieve pregnancy rates comparable to those for women in the general population undergoing in vitro fertilization (IVF), thanks to embryo cryopreservation after ovarian stimulation with letrozole and follicle-stimulating hormone, according to a study published online in the Journal of Clinical Oncology.

Investigators led by Kutluk Oktay, MD, a professor of obstetrics and gynecology at the Innovation Institute for Fertility Preservation and In Vitro Fertilization in New York City, reported on fertility preservation in 131 women no older than 45 years with stage <3 breast cancer who underwent ovarian stimulation with cryopreservation of IVF-generated embryos before receiving adjuvant chemotherapy. Estrogen-receptor-positive tumors were present in 69% of patients, 18% carried a mutated BRCA gene, and 57% had received tamoxifen."

Susan Zager's insight:

To see the study go to: http://jco.ascopubs.org/content/26/16/2630.long


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Vascular ALK1 May Be Biomarker Indicating Breast Cancer Metastases

Vascular ALK1 May Be Biomarker Indicating Breast Cancer Metastases | Breast Cancer News | Scoop.it

Medical Research: What is the background for this study? What are the main findings?


Dr. Pietras: Breast cancer is the largest malignant disease among women with 1.7 million new cases worldwide each year (25% of all new cancer cases for women). The prognosis for breast cancer patients is relatively good when the disease is detected at early stages (close to 90% of patients are still alive 5 years after diagnosis). Nevertheless, metastatic disease is the cause of 90% of all cancer-related deaths. Thus, learning more about the metastatic process and finding new cures for widespread disease is justifiably at the center of clinical attention.

The current study is part of our ongoing efforts to map support functions performed by the various cell types comprising the tumor stroma with the premise that decisive treatment benefit can only be achieved by targeting multiple, but distinct, cell types and pathways that collectively sustain the growth of tumors. The development of a rich vascular supply  is recognized as a key hallmark of a growing tumor necessary for the development into a clinically relevant disease.

Our focus is the role of the tumor vasculature in preventing or promoting metastatic dissemination from the primary tumor. For a metastasis to form, a cancer cell must,

1) detach from its neighboring cells in the mother tumor,
2) traverse the vascular wall to escape into the blood stream,
3) exit the vasculature to enter the metastatic site, and
4) colonize the metastatic site.

Our results suggest that the presence of high levels of ALK1 in the breast cancer vasculature is a prognostic biomarker for metastatic disease.

Susan Zager's insight:

To see the study go to: http://cancerres.aacrjournals.org/content/75/12/2445.full?sid=bc79cbf4-a9f5-43f6-ae6a-6d4a9c44bd50


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Ribbons Are Not a Cure

Ribbons Are Not a Cure | Breast Cancer News | Scoop.it

"I appreciate the power of the ribbon. It is an easy-to-recognize symbol, and an important tool in promoting cancer awareness. Early detection and prevention is the key in several cancers.  My gynecologist once remarked, "Almost no one dies of cervical cancer if they get regular pap smears." And if colon cancer is caught early, during a routine colonoscopy, pre-cancerous polyps can easily be removed and debilitating progression prevented. But some cancers, like breast cancer, are lurking beasts. Breast cancer, even after successful treatment, can sit silently for years, sneaking back to penetrate bones, brain, lung, or liver — ultimately killing the unlucky victim.  

 
Cancer survival rates are reported based on five-year survival. The five-year survival rate of breast cancer is 91 percent.1 The truth, though, is that 30 percent of those diagnosed at an earlier stage of breast cancer will eventually develop stage 4 metastatic breast cancer. Stage 4 breast cancer has a survival rate of zero. But in spite of the prevalence of metastatic breast cancer, the disease gets very little funding for research — roughly 7 percent of the breast cancer research investment.2
 

 
Susan Zager's insight:

This article is filled with excellent links for breast cancer advocates including:

 
Here's also research organizations often seek patient/consumer perspectives on proposed or ongoing research. 
 
  • The DOD CDMRP has its Consumer Reviewer program where consumers read and evaluate research study applications for relevance to the consumer community's needs and concerns.
  • NCI's Research Advocacy program looks to incorporate the collective patient perspective into NCI research and help keep NCI research focused on patient benefits and outcomes.
  • The FDA Patient Representative Program allows patient representatives the opportunity to advise regarding drugs, devices, and biologics currently being considered for approval.

 

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Skyrocketing drug prices leave cures out of reach for some patients

Skyrocketing drug prices leave cures out of reach for some patients | Breast Cancer News | Scoop.it

"Sophisticated drugs are opening the door, scientists say, to an era of "precision medicine."

They're also ushering in an age of astronomical prices.

New cancer drugs are routinely priced at more than $100,000 a year -- nearly twice the average household income.

Experimental cholesterol drugs – widely predicted to be approved this summer – could cost $10,000 a year for life. That's a huge increase from the price of statins, the dominant cholesterol-lowering drugs, whose generic versions cost just $250 a year.

A drug for a subset of people of cystic fibrosis – a lung disease that kills most patients by their early 40s -- commands more than $300,000 a year.

Even with insurance, patients may pay thousands of dollars a month out of pocket.

For many people, care for cancer and other serious diseases is "a doorway to bankruptcy or poverty," said Timothy Turnham, executive director of the Melanoma Research Foundation. "It's a tremendous economic burden."

But patients aren't the only ones paying.

Taxpayers underwrite the cost of prescription drugs provided by Medicare, Medicaid and other public insurance programs.

Spending on prescription drugs last year reached a record-breaking $374 billion, up 13% from 2013, with the largest percentage increase in more than a decade, said Clare Krusing,spokeswoman for America's Health Insurance Plans. Almost half of that increase came from drugs launched in the past two years."

Susan Zager's insight:

For more information see the Journal of Economic Perspectives- Pricing in the market for anticancer drugs at: http://pubs.aeaweb.org/doi/pdfplus/10.1257/jep.29.1.139 

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Senate Amendment Threatens DOD Breast Cancer Research Program (DOD BCRP)

Senate Amendment Threatens DOD Breast Cancer Research Program (DOD BCRP) | Breast Cancer News | Scoop.it

Take Action!

The Senate is currently considering the National Defense Authorization Act for Fiscal Year 2016 (HR 1735). Sen. John McCain (R-AZ) has filed an amendment (#1483) that if passed, would severely restrict the types of medical research that could be funded by the Department of Defense and would serve a devastating blow to DOD funding for Breast Cancer Research. Contact your Senators and urge them to oppose McCain amendment #1482.
Susan Zager's insight:

This is a prewritten letter that you can send to let your Senators know how important it is that we don't lose funding for the very successful Breast Cancer Research Program. funded by the Department of Defense. It only takes a minute to put your name and address in and your email will be sent to Congress. 


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Heather Swift's curator insight, June 17, 9:19 AM

[TAKE ACTION]

The Senate is currently considering the National Defense Authorization Act for Fiscal Year 2016 (HR 1735). Sen. John McCain (R-AZ) has filed an amendment (#1483) that if passed, would severely restrict the types of medical research that could be funded by the Department of Defense and would serve a devastating blow to DOD funding for Breast Cancer Research. Contact your Senators and urge them to oppose McCain amendment #1482.

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Don't “Fast Track” Away Our Health

Don't “Fast Track” Away Our Health | Breast Cancer News | Scoop.it

"Tomorrow, lawmakers will vote on a bill that would allow the President to quickly pass, i.e. “Fast Track,” an international trade deal that would be extremely detrimental to both breast cancer patients and breast cancer prevention.

This “Fast Track” bill would give the President the authority to push multinational trade deals, like the Trans-Pacific Partnership (TPP), through Congress by restricting lawmakers’ ability to debate or amend these deals.

The TPP is a sweeping “free trade” deal negotiated in secret by the United States and 11 other countries, with the “help” of more than 600 corporate advisors, including institutions and corporations that produce policies or products linked to breast cancer like the American Chemistry Council and Chevron.

Leaked texts of the TPP shows that the trade deal threatens access to affordable, effective treatments for women who are diagnosed with breast cancer and undermines efforts to reduce toxic exposures that increase our risk of breast cancer in the first place.

This "Fast Track" bill has already passed out of the Senate. The House plans to hold the final vote on “Fast Track” tomorrow. Thousands of activists are mobilizing against this bill.

Please join them and contact your Representative now to tell them not to “Fast Track” away our health!"

Susan Zager's insight:

This is about making sure we have innovation with pharmaceutical companies, access to medicines and stop the use of toxic chemicals in products that cause disease especially cancer. 


To TAKE ACTION go to: http://cqrcengage.com/bcaction/app/write-a-letter?0&engagementId=108537


To find out more about the issue here are some articles. 

http://www.democracynow.org/2015/6/11/backlash_against_tpp_grows_as_leaked


http://www.nytimes.com/2015/06/11/business/international/us-shifts-stance-on-drug-pricing-in-pacific-trade-pact-talks-document-reveals.html?_r=0


For nfo on the bill go to: http://www.nytimes.com/interactive/2015/06/10/business/international/document-annex-of-proposed-pacific-trade-accord.html







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Susan Zager's curator insight, June 11, 5:19 PM

This is about making sure we have innovation with pharmaceutical companies, access to medicines and stop the use of toxic chemicals in products that cause disease especially cancer. 


To TAKE ACTION go to: http://cqrcengage.com/bcaction/app/write-a-letter?0&engagementId=108537


To find out more about the issue here are some articles. 

http://www.democracynow.org/2015/6/11/backlash_against_tpp_grows_as_leaked


http://www.nytimes.com/2015/06/11/business/international/us-shifts-stance-on-drug-pricing-in-pacific-trade-pact-talks-document-reveals.html?_r=0


For nfo on the bill go to: http://www.nytimes.com/interactive/2015/06/10/business/international/document-annex-of-proposed-pacific-trade-accord.html

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DOD BCRP in Jeopardy TODAY– Ask your Senators to Oppose McCain Amendment #1482

DOD BCRP in Jeopardy TODAY– Ask your Senators to Oppose McCain Amendment #1482 | Breast Cancer News | Scoop.it

**URGENT**: Call your Senators RIGHT NOW to save the Department of Defense ‪#‎BreastCancer‬ Research Program (DOD BCRP).
Senator John McCain (R-AZ) is offering an amendment to the National Defense Authorization Act (NDAA) on the Senate floor TODAY which would do irreparable damage to the Department of Defense Breast Cancer Research Program. Please call your Senators NOW and give them the following message:
1. Please vote against the McCain Amendment #1482 to the NDAA
2. This amendment would do irreparable damage to the DOD BCRP – one of the most efficient, innovative and successful government programs.
3. As a breast cancer survivor/activist, the DOD BCRP is incredibly important to me and has produced results which have directly benefited survivors like me, including those who have served and currently serve our country in the armed forces.
Find your Senators here: http://www.senate.gov/senators/contact/

OR use this Link: http://www.capwiz.com/aacr/dbq/officials/


Learn more about the DOD BCRP: http://www.breastcancerdeadline2020.org/…/priority-2-150-mi…

Susan Zager's insight:

Find your Senators here: http://www.senate.gov/senators/contact/

OR use this Link: http://www.capwiz.com/aacr/dbq/officials/


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How Three Innovative Physicians Use Periscope | Common Sense

How Three Innovative Physicians Use Periscope | Common Sense | Breast Cancer News | Scoop.it
Periscope, the live-streaming app, launched nearly three months ago. Owned by Twitter, the app can be used with either a Twitter account or a phone number and

Via Marie Ennis-O'Connor, Heather Swift
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Measuring the Impact of Live-Tweeting a Chronic Disease

Measuring the Impact of Live-Tweeting a Chronic Disease | Breast Cancer News | Scoop.it
An analysis of live-tweeting chronic disease advocacy campaigns including #dayofdiabetes, #chroniclife, and #cf1day

Via Marie Ennis-O'Connor, Heather Swift
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The New Cancer Survivors

The New Cancer Survivors | Breast Cancer News | Scoop.it
Extraordinary advances have turned cancer from an apparent death sentence into a manageable chronic illness for many. But what does it mean to live with a terminal disease...interminably?
Susan Zager's insight:

Great Article- thought provoking. 

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Recording Available: Report from ASCO 2015 with Dr. Don Dizon

Recording Available: Report from ASCO 2015 with Dr. Don Dizon | Breast Cancer News | Scoop.it

"If you missed the webinar with Dr. Dizon, watch it here!

Dr. Don S. Dizon presents news from the annual meeting of the American Society of Clinical Oncology (ASCO) as it relates to those living with metastatic breast cancer. Dr. Dizon is board certified in medical oncology and is the Clinical Co-Director of Gynecologic Oncology at the Massachusetts General Hospital Cancer Center."

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The 'wonder drugs' that cost thousands of dollars and do almost nothing at all - Science & Medicine

The 'wonder drugs' that cost thousands of dollars and do almost nothing at all - Science & Medicine | Breast Cancer News | Scoop.it

"The often tenuous relationship between the clinical effectiveness of new cancer drugs and their exorbitant cost is a worldwide problem. Over the past decade, more and more such drugs have come onto the market and into national health systems.

“It happens in waves,” said Prof. Raphael Katan, a senior oncologist at both Sheba Medical Center and Shaare Zedek Medical Center and the former head of oncology at Sheba. “Every time there’s another drug that’s considered good and desirable, it creates hope. Then it turns out that it’s not so good, or that it’s only good in very specific situations.”

Impressive presentations about the latest clinical trials aren’t confined to the annual meeting of the American Association of Clinical Oncology, attended by some 40,000 oncologists from all over the world (the most recent was in Chicago a few weeks ago). They quickly find their way to the international media, and from there to patients and national health systems.

The drug companies are commercial enterprises and they’re trying to get the best price,” Katan said. “Over the last few years, the public has evidently been willing to pay higher amounts for drugs, even if the benefit is small.

“Even wealthy countries like the United States and some European countries have begun to be aware of this and are trying to limit it,” he added. “But it’s not simple. When there’s a new drug, even if it’s not so effective, but just a little better than another drug, we feel obligated to recommend it.”              

             

Susan Zager's insight:

This is another article from Israel related to ASCO's article about drug pricing at: http://www.onclive.com/web-exclusives/asco-tool-shows-price-does-not-indicate-value/1

To further see info about pricing in the market for anticancer drugs go to: 

http://pubs.aeaweb.org/doi/pdfplus/10.1257/jep.29.1.139

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ASCO Tool Shows Price Does Not Indicate Value

ASCO Tool Shows Price Does Not Indicate Value | Breast Cancer News | Scoop.it
ASCO unveiled a drug valuation methodology that found no added health benefit from a $9200 per month trial chemotherapy regimen compared with an $800 per month standard-of-care therapy.
Susan Zager's insight:

ASCO and other Drug Valuation Systems  look at how the cost for chemotherapy medications  does not indicate the value. 

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Everybody's talking at me, on health on Twitter - HealthNewsReview.org

Everybody's talking at me, on health on Twitter - HealthNewsReview.org | Breast Cancer News | Scoop.it

"Maybe you’ve heard about patients discussing breast cancer or other diseases on “chats” in social media. Whether you are fluent in the language of Twitter or not, the thousands of people who meet on that social media platform on a weekly basis are an important trend. They don’t just talk about cancer, but diabetes, mental illness, and hundreds of other health issues.

Physician Matthew Katz, a radiation oncologist, thinks this trend is so important that he’s conducted research on it and presented a poster (about hashtags) to the recent American Society of Clinical Oncology conference earlier this month. Katz and a team of others gathered information about how cancer is discussed in these “chats.” The word “hashtag” refers to an identifying marker or word, for example, #bcsm, which people use to find each other to chat on Twitter. BCSM stands for “breast cancer social media.” You can read a list of many hashtags here. Some hashtags feature organized weekly live discussions. Some have websites you can visit – even if you aren’t on Twitter.

What Katz and others are wondering: Do recently diagnosed patients use Twitter to help them make treatment decisions? Who participates and what is the quality of information there? Do social media chats perpetuate myths and bad information, or does the lively debate online help get higher-quality information to people who need it? What impact does conversation itself have on health literacy?

Katz himself participates online. His Twitter address is @subatomicdoc."


Susan Zager's insight:

Great article by Sally James about great websites and Twitter handles through social media to follow.  

Included is #BCSM (Breast Cancer Social Media), Alicia Staley @stales, and Mathew Katz @subatomicdoc, who presented his research at the ASCO (American Society of Clinical Oncology) conference earlier this month. 

See his poster related to this at: http://bit.ly/1cxy9Bp

It's fantastic that doctors and patients have the ability to communicate on social media and organizations like ASCO recognize the importance of this communication for patients, doctors, researchers and other medical professionals. 

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Study Highlights Social Factors Affecting Breast Cancer Surgery

Study Highlights Social Factors Affecting Breast Cancer Surgery | Breast Cancer News | Scoop.it

"A new study sheds light on social and economic factors that influence whether women with breast cancer get lumpectomy or mastectomy. The JAMA Surgery report reveals a positive, albeit slow-to-pick-up trend: Between 1998 and 2011, the proportion of U.S. women with early-stage breast cancers who had lumpectomy increased from 48.2% to 59.7%.

The large analysis draws from the National Cancer Database (NCDB) and includes information on nearly 728,000 women with breast cancers that, by staging, are generally small enough to be removed by lumpectomy. The researchers, based at MD Anderson Cancer Center in Houston, interrogated the database for links to lumpectomy, over the 14 year period.

Conversely, women with breast cancer who have private insurance, are more educated, earn more, receive care at academic medical centers, and live near a radiation treatment facility are more likely to have lumpectomy. Women in the Northeast were most likely to get this smaller surgery, followed by those in the West. (Obviously, these are big U.S. regions; rates vary among cities and smaller communities; this analysis looked at geographic variation over large areas.)."

Susan Zager's insight:

Great article by Elaine Schattner. To see the Jama Study that Elaine cited (but does not include all of issues related to social factors) go to:  http://archsurg.jamanetwork.com/article.aspx?articleid=2322835


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ALK1 protein may play a role in breast cancer metastasis

ALK1 protein may play a role in breast cancer metastasis | Breast Cancer News | Scoop.it
Breast cancer patients with high levels of the protein activin-like receptor kinase (ALK1) in the blood vessels of their tumors were more likely to develop metastatic disease. This makes inhibition of the ALK1 pathway a possible new target for the treatment of metastatic breast cancer.
Susan Zager's insight:

For more information go to: http://cancerres.aacrjournals.org/content/75/12/2445.full?sid=25416f81-f643-41a3-a2b5-9c069675e624


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FTC, All 50 States and D.C. Charge Four Cancer Charities With Bilking Over $187 Million from Consumers | Federal Trade Commission

FTC, All 50 States and D.C. Charge Four Cancer Charities With Bilking Over $187 Million from Consumers | Federal Trade Commission | Breast Cancer News | Scoop.it

"The Federal Trade Commission and 58 law enforcement partners from every state and the District of Columbia have charged four sham cancer charities and their operators with bilking more than $187 million from consumers. The defendants told donors their money would help cancer patients, including children and women suffering from breast cancer, but the overwhelming majority of donations benefitted only the perpetrators, their families and friends, and fundraisers. This is one of the largest actions brought to date by enforcers against charity fraud.

Named in the federal court complaint are Cancer Fund of America, Inc. (CFA), Cancer Support Services Inc. (CSS), their president, James Reynolds, Sr., and their chief financial officer and CSS’s former president, Kyle Effler; Children’s Cancer Fund of America Inc. (CCFOA) and its president and executive director, Rose Perkins; and The Breast Cancer Society Inc. (BCS) and its executive director and former president, James Reynolds II.

CCFOA and Perkins, BCS, Reynolds II and Effler have agreed to settle the charges against them. Under the proposed settlement orders, Effler, Perkins and Reynolds II will be banned from fundraising, charity management, and oversight of charitable assets, and CCFOA and BCS will be dissolved.  Litigation will continue against CFA, CSS and James Reynolds Sr.

“Cancer is a debilitating disease that impacts millions of Americans and their families every year. The defendants’ egregious scheme effectively deprived legitimate cancer charities and cancer patients of much-needed funds and support,” said Jessica Rich, Director of the FTC’s Bureau of Consumer Protection. “The defendants took in millions of dollars in donations meant to help cancer patients, but spent it on themselves and their fundraisers. I’m pleased that the FTC and our state partners are acting to end this appalling scheme.”

Virginia Attorney General Mark Herring said, “The allegations of fundraising for personal gain in the name of children with cancer and women battling breast cancer are simply shameful. This is the first time the FTC, all 50 states, and the District of Columbia have filed a joint enforcement action alleging deceptive solicitations by charities and I hope it serves as a strong warning for anyone trying to exploit the kindness and generosity of others.”

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When Pain Persists After Breast Cancer Surgery

When Pain Persists After Breast Cancer Surgery | Breast Cancer News | Scoop.it

I could hear the anxiety in my sister’s voice. A week after her double mastectomy and breast reconstruction for breast cancer, she had developed a burning sensation under her right arm where her surgeon had removed several dozen lymph nodes for a postoperative biopsy. The throbbing and itching were so intense it felt “like poison ivy lit by a blowtorch.”

The physician assistant at her reconstructive surgeon’s office told her it was probably “neuropathic in origin” — probably arising from nerve damage during surgery — and that the condition, known as postmastectomy pain syndrome, or PMPS, would subside over time. And luckily for my sister, five weeks out from surgery, the pain began to wane.

But for many of the estimated 20 to 50 percent of women who develop pain after a mastectomy, it may never go away.

“Quite frankly, women are not always informed of the risk or the strategies that are available to reduce the risk,” said Rosemary Polomano, a professor of pain practice at the University of Pennsylvania School of Nursing. “It’s a widespread problem.”
Susan Zager's insight:

According to the study quoted done in 2011, (http://cancerres.aacrjournals.org/content/73/24_Supplement/P3-10-03.abstract) "About 20-68% of patients who have undergone surgery for breast cancer experience chronic postoperative breast pain, commonly known as post-mastectomy pain syndrome". 


That's a lot of patients.

Many people don't talk about the devastating side effects including pain after surgery. because there's so many other problems as a result of treatment.


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Comments to the FDA re: Patient-focused Drug Development for Breast Cancer

Comments to the FDA re: Patient-focused Drug Development for Breast Cancer | Breast Cancer News | Scoop.it

"On June 2nd, we submitted our official comments to the Food and Drug Administration on patient-focused drug development for breast cancer. 

Dear Acting Commissioner Dr. Stephen Ostroff,

Breast Cancer Action (BCAction) is national education and activist organization working to achieve health justice for all women at risk of and living with breast cancer. Since our founding 25 years ago, we work to ensure that women have access to evidence based information about breast cancer, free of industry influence. BCAction has over 60,000 members across the U.S.

BCAction offers neither treatment nor medical advice. However, we do provide accurate, unbiased information that allows patients to make well-informed decisions about available treatments based on personal needs. We advocate for treatments that put patients’ interests before those of corporations.

We expect the FDA to fulfill its mission to protect the public’s health. Patients and consumers depend on the FDA to ensure that medical drugs and devices are safe and effective.

We believe that any new drug approved for the treatment of breast cancer must be able do at least one of the following three things:

  • Should be more effective in that it extend the life of a patient which is shown by improved overall survival (OS) or
  • Be less toxic in that it improve the patient’s quality of life or
  • It should cost less than therapies already available.

No one is more concerned than patients with bringing effective new drugs and devices to the market as quickly as possible. And, as the watchdog of the breast cancer movement, we are the voice of safety and will demand the strongest standards, but we recognize that this must be a balanced approach. Any effort to streamline the FDA’s approval process must also uphold the strongest safety standards. Patients and their physicians need adequate data to make informed decisions. For that reason, BCAction is alarmed by 1) the increased use of surrogate endpoints, 2) accelerated approvals based on limited data and failure to conduct post-market studies, 3) the limitations of the 510(k) pathway for device approval, 4) the lack of diversity in clinical trials and 5) the high cost of drugs and the financial burden for patients.

Susan Zager's insight:

Breast Cancer Action is a great organization not afraid to take on any important issue and big organizations. They strive for a world where lives and communities aren’t threatened by breast cancer.  For more information about them go to: http://bcaction.org/


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