Saturday, December 29, 2012

Remembering Dr. Jensen, Breast Cancer Pioneer

Learning your estrogen receptor status is one of the first things you are told when diagnosed with breast cancer.  The doctor who discovered the receptors, and subsequently went on to develop anti-estrogen or estrogen blocking drugs which extend women's lives, has died at the age of 92.

We believe it is important to pause to reflect on this man's life and acknowledge the difference he made in our lives.

Rest in peace, Doctor, and thank you

December 26, 2012/ The New York Times

Elwood V. Jensen, Pioneer in Breast Cancer Treatment, Dies at 92

Elwood V. Jensen, a medical researcher whose studies of steroid hormones led to new treatments for breast cancer that have been credited with saving or extending hundreds of thousands of lives, died on Dec. 16 in Cincinnati. He was 92. 

The cause was complications of pneumonia, his son, Thomas Jensen, said.
In 2004 Dr. Jensen received the Albert Lasker Basic Medical Research Award, one of the most respected science prizes in the world. 

When Dr. Jensen started his research at the University of Chicago in the 1950s, steroid hormones, which alter the functioning of cells, were thought to interact with cells through a series of chemical reactions involving enzymes. 

However, Dr. Jensen used radioactive tracers to show that steroid hormones actually affect cells by binding to a specific receptor protein inside them. He first focused on the steroid hormone estrogen.
By 1968, Dr. Jensen had developed a test for the presence of estrogen receptors in breast cancer cells. He later concluded that such receptors were present in about a third of those cells.

Breast cancers that are estrogen positive, meaning they have receptors for the hormone, can be treated with medications like Tamoxifen or with other methods of inhibiting estrogen in a patient’s system, like removal of the ovaries. Women with receptor-rich breast cancers often go into remission when estrogen is blocked or removed. 

By the mid-1980s, a test developed by Dr. Jensen and a colleague at the University of Chicago, Dr. Geoffrey Greene, could be used to determine the extent of estrogen receptors in breast and other cancers. That test became a standard part of care for breast cancer patients.

Scientists like Dr. Pierre Chambon and Dr. Ronald M. Evans, who shared the 2004 Lasker prize with Dr. Jensen, went on to show that many types of receptors exist. The receptors are crucial components of the cell’s control system and transmit signals in an array of vital functions, from the development of organs in the womb to the control of fat cells and the regulation of cholesterol. 

Dr. Jensen’s work also led to the development of drugs that can enhance or inhibit the effects of hormones. Such drugs are used to treat prostate and other cancers. 

Elwood Vernon Jensen was born in Fargo, N.D., on Jan. 13, 1920, to Eli and Vera Morris Jensen. He majored in chemistry at what was then Wittenberg College in Springfield, Ohio, and had begun graduate training in organic chemistry at the University of Chicago when World War II began.
Dr. Jensen wanted to join the Army Air Forces, but his poor vision kept him from becoming a pilot. During the war he synthesized poison gases at the University of Chicago, exposure to which twice put him in the hospital. His work on toxic chemicals, he said, inspired him to pursue biology and medicine. 

Dr. Jensen studied steroid hormone chemistry at the Swiss Federal Institute of Technology on a Guggenheim Fellowship after the war. While there, he climbed the Matterhorn, one of the highest peaks in the Alps, even though he had no mountaineering experience. He often equated his successful research to the novel approach taken by Edward Whymper, the first mountaineer to reach the Matterhorn’s summit. Mr. Whymper went against conventional wisdom and scaled the mountain’s Swiss face, after twice failing to reach the summit on the Italian side. 

Dr. Jensen joined the University of Chicago as an assistant professor of surgery in 1947, working closely with the Nobel laureate Charles Huggins. He became an original member of the research team at the Ben May Laboratory for Cancer Research (now the Ben May Department for Cancer Research) in 1951, and became the director after Dr. Huggins stepped down. 

He came to work at the University of Cincinnati in 2002, and continued to do research there until last year. 

His first wife, the former Mary Collette, died in 1982. In addition to his son, Dr. Jensen is survived by his second wife, the former Hiltrud Herborg; a daughter, Karen C. Jensen; a sister, Margaret Brennan; two grandchildren; and three great-grandchildren. 

Dr. Jensen’s wife was found to have breast cancer in 2005. She had the tumor removed, he said in an interview, but tested positive for the estrogen receptor and was successfully treated with a medication that prevents estrogen synthesis.

Tuesday, November 6, 2012

Scenes from Sandy

After 8 days without power, heat, phone, running water and cell service, power has been restored.... thanks to Veridian Power from Ontario Canada. Without these men and their ability to repair high voltage lines that were perched on poles that sit on a road that has crumbled into Oyster Bay Harbor, our town and neighboring Bayville and Centre Island would be out of power for weeks.

Sunday, October 14, 2012


Breast reconstruction after mastectomy may not be your personal choice- but we believe you should be informed of your options. Did you know that  7 out of 10 women eligible for breast reconstruction are not being informed of their options? ALL women should know what their choices are.  This needs to be done on many levels. All women should know that there is a federal law that makes it illegal for their insurance providers to not cover breast reconstruction.

Recent studies have revealed that:

    •    Eighty-nine percent of women want to see what breast reconstruction surgery results before undergoing cancer treatment.

    •    Less than a quarter (23 percent) of women know the wide range of breast reconstruction options available.

    •    Only 22 percent of women are familiar with the quality of outcomes that can be expected.

    •    Only 19 percent of women understand that the timing of their treatment for breast cancer and the timing of their decision to undergo reconstruction greatly impacts their options and results.

"We want to bring the topic of breast reconstruction into the larger breast cancer dialogue," said ASPS President Malcolm Z. Roth, MD. "Letting women know their reconstruction options before or at the time of diagnosis is critically important to improving life after breast cancer. BRA Day USA is all about inspiring women who are on the road to recovery to a full life beyond breast cancer."

This year, the U.S. and more than 20 other countries will join an international effort to close the loop on breast cancer, to ensure that all patients are fully informed of their surgical options and supported by a team of medical professionals working together for the patient's best interest. Here in the U.S., supporters and survivors are planning more than 80 BRA Day USA events across the country in cities including New York, Chicago, Miami and Los Angeles.

The No Surrender Breast Cancer Foundation is a proud participant in these events.

Two Chances to Chat!
Gina Maisano, founder of the No Surrender Breast Cancer Foundation and author of “Intimacy After Breast Cancer” will be chatting live on Twitter and Facebook with two world renowned breast reconstruction surgeons:


Join  ASPS Member Surgeon Frank DellaCroce, MD, on Twitter chat where he will answer important questions about breast reconstruction.
Join in using #BRAdaychat.


Join Redbook magazine, ASPS Member Surgeon Ron Israeli, MD, and his breast reconstruction patient, author and non-profit founder Gina Maisano for a Facebook chat on October 17 at 2 p.m. EDT.

Grammy award winning recording artist Jewel has written a very special song about breast reconstruction. She is the ambassador of BraDay USA.

Wednesday, October 10, 2012

7 out of 10 Women are Not Informed of Reconstruction Options

And the American Society of Plastic Surgeons is working hard to make sure that every woman is aware of her choices!

The No Surrender Breast Cancer Foundation is  proud to be a part of Breast Reconstruction Awareness Day, which is October 17th, across the country.

A sneak peak from today's NY Post.

Monday, October 8, 2012

Hi. I'm new.

The Other Awareness...

A scared young woman is diagnosed with a deadly form of breast cancer that no one knows a thing about at the time. They don't even have a name for it. They do now, it is referred to as Triple Negative Breast Cancer.

She doesn't know anyone (living) with breast cancer and has no support to speak of. She's single, lives alone, and feels truly alone for the first time in her life. She has a computer. She never really used the internet before but takes a dip into the cyberpool. Poking around she first finds the most horrifying statistics including how soon she should expect to die. She wanted people. She wanted a woman who had been through everything her doctors are telling her she has to do in order to attempt to survive this thing.

She finds a small group of women on a support forum that is part of a large network. At the time, these women were reeling over the loss of one of their beloved members. All she reads are posts about how much they miss her and how terribly painful their friend's death was. It was terrifying.  She wanted to run for the hills, but she had already posted a "I'm New, Can Someone Help Me?" post before reading about their friend.

In the sadness and fear, through tears and pain, a woman from Texas answered her. Then another, this time from Ohio. Then a woman from Florida joined in, followed by a Virginian. They all reached out a cyber hand to this true newbie -- me. They got me through everything. And I mean everything:  From severe radiation burns  to helping me cope with the three days of hell after chemo when I would have to literally sleep on the bathroom floor because I was so violently ill. I swore I would quit chemo each time, but they always managed to talk me back into going for my next infusion. They became my mother, my sister, my best friend and my coach.

Time passed and I started helping others too and the circle grew. New women, just like me joined... then some of the  members who initially held my hand died. The website that hosted the forum fell apart so they started a new group elsewhere. It wasn't the same. But I still went. It was the first place I opened my computer to each morning and the last place I closed my computer to each night. I branched out and found another large breast cancer support site. This was like going from a mom and pop hardware store to the Home Depot. It was hard to get around so I picked a spot and started from there. I went to the newly diagnosed section and helped a group of women who all started chemo together.

Once I got comfortable I spread out to other sections and fell in love with so many of my sisters. We shared everything. We held each other up through good times and bad. When the moderating of that site got a little shaky, we congregated in a mythical mountainside camp in our covered wagons sharing our lives. It was beautiful. The women there were and are beautiful. I got diagnosed a second time and they were all there for me.  We also started to lose friends, sometimes many in a very short time span. Eventually that website had its own growing problems and it was time to move on.

This time I started a new support forum. It is connected to a comprehensive site that helps women from all over the world understand their disease and by extension, gain the strength they need to conquer their fears.

That never would  have happened if that sassy lady from Texas and the other ladies on that first site hadn't reached out and taught me that it's not about me. It's about who's next and what can we do to make her journey better. I changed my life to accommodate that philosophy and have been incredibly enriched by it.

I have women friends all over the world now. I also have an amazing group of guardian angels who left too soon. I. Don't. Want. Anymore. Guardian. Angels. I want my friends to stay right here on earth. Together we can flood the world with our strength and love so much so that cancer literally drowns in it and we all swim to the top, free from it at last.

Until there's a cure, we are all we've got. No one else gets it like we do. I know this because late one September night in 2001 I got an email from Texas that said,  "Hey! I know we seem a little down right now. But don't run away. Tell me about yourself. We can help you. Stick around, darlin."  I stuck around and an entire new world opened up for me. I thank God for you my sisters. You lift me up each and every day. You are my heart and my courage and when a "civilian" asks me, "Why do you stay in the breast cancer world? Why don't you move on?" I think of all of you and I think of our angels and quietly shake my head wishing I could explain to her: You just don't understand. I hope there never is a day that you have to understand... but if you do, you'll feel a lot of emotions. The one you don't expect is the love. And that is what gets you through it and why you stay.

Sunday, September 30, 2012

Keep the Pink Where It Belongs

It's that time of year again. Oh, how I hate it. I have only had one thing go "viral" in my online life, and that is the photo I made of Ralphie from A Christmas Story dressed in his hideous pink bunny costume with the caption, "It's Here: Welcome to Pink Hell Month." Rather than a photo I think I can finally put it into proper words. It is my greatest wish that people outside of the breast cancer world will now understand.

A dear friend of mine was just diagnosed with advanced stage lung cancer. It has spread to her eyes. She is facing quite an ordeal. At first they weren't sure if the primary cancer was lung or breast cancer. The biopsy revealed the origin and her treatment plan is forming. She has been receiving love, concern, flowers and genuine support from friends and family from all over. Her disease is being taken quite seriously. People are actually thinking about what they can do to support her. Because she does not have breast cancer, she is being spared the easy-way-out form of support.

She is not being demeaned or compartmentalized into a pink box. Not a single polyester  ribbon has crossed her threshold. No one has given her a pink baseball cap with a "cute" saying on it. No one has told her that they bought an extra six-pack roll of toilet paper because it is "supporting the pink." Throughout this entire hell on earth she is living, no one has taken away her dignity.

Just like when a man gets diagnosed with cancer, people are offering her true, meaningful, thoughtful support.

Breast cancer is no less a cancer than other cancers. It spreads. It takes away body parts. Its treatments are harsh. And it never seems to let you alone. What is it about breasts that make it a less serious disease? Is it because you can say "boobies" and "ta ta's" like a sixth grade playground sniggering joke?

In our bodies it is no joke. Our immune system knows only the assault. Just as lung, prostate, testicular, liver, skin or any other type of cancer, the malignant cells rapidly divide, mutate, spread, seek and destroy healthy cells.  So, just like lung, prostate, testicular, liver, skin or any other type of cancer, don't diminish us with the easy way out: a cheap piece of fabric tied to a mass marketing plan orchestrated by a major corporation hijacking our disease. Why? Because that translates into the care we get; the research allocated and the way you make us feel when we already feel like hell. We want a cure. We want better treatments. We want to retain our person-hood. It is not easy to do that when you are being treated like a child playing Pretty, Pretty Pink Princess.

If my words have not convinced you, perhaps this quiz will.
All three of the following slides are actual microscopic views of cancer cells. Which one is the breast cancer?

One of these is breast, one is lung, and one is prostate. Interestingly, they are all pink on the pathologist's slide. Here is my wish for this October:  Let's keep the pink in the lab. Where it belongs. And may God help the researchers finally find a way to save us.

(slide 1 is breast, slide 2 is lung and slide 3 is prostate)

Thursday, September 27, 2012

Prior Chest Radiation Patients Require MRI's

If you have had prior chest radiation for breast cancer or another type of cancer, it is important to get screened with breast MRIs as well as mammography to help identify new cancers that may be caused by the prior radiation.




Recommendation for breast magnetic resonance imaging (MRI) screening for women with a prior history of chest radiation is currently based on expert opinion, because existing data are very scant. The objective of this study was to evaluate added cancer yield of screening breast MRI in this population.



A retrospective review identified 98 women with a prior history of chest radiation therapy who had screening mammography and screening MRI performed at the authors' institution between January 2004 and July 2010. Medical records of these patients and results of 558 screening studies (296 mammograms and 262 MRI) were reviewed. Sensitivity, specificity, positive predictive value, negative predictive value, and added cancer yield were calculated.




Malignancy was diagnosed in 13 patients, invasive cancer was diagnosed in 10 patients, and ductal carcinomas in situ was diagnosed in 3 patients. The median latency from completion of radiation to detection of the breast cancer was 18 years (range, 8-37 years). Of the 13 cancers, 12 (92%) were detected by MRI, and 9 (69%) by mammography. For mammography, the sensitivity, specificity, positive predictive value, and negative predictive value were 69%, 98%, 82%, and 95%, respectively; and, for MRI, these values were 92%, 94%, 71%, and 99%, respectively. In 4 of 98 patients, cancer was diagnosed on MRI only, resulting in an incremental cancer detection rate of 4.1% (95% confidence interval, 1.6%-10%).


The current results indicated that MRI is a useful adjunct modality for screening high-risk women who have a prior history of chest radiation therapy, resulting in a 4.1% (4 of 98 women) added cancer detection rate. The authors concluded that both MRI and mammography should be used to screen women in this high-risk group. Cancer 2012. © 2012 American Cancer Society.

Wednesday, September 26, 2012

Breast Cancer Further Demystified Exposes Importance of Before Forty Initiative

Breast cancer has been further demystified genetically, which will lead to better, more targeted treatments. The take home message is clear: More work needs to be done on the  genomic front lines of breast cancer research.

Important to note: The findings clearly indicate that triple negative breast cancer is found in young women, particularly African-American women. Our Before Forty Initiative has been fighting for four years to promote this fact. Please read more about how you can help Here.

From the New York Times:

Study Divides Breast Cancer Into Four Distinct Types

In findings that are fundamentally reshaping the scientific understanding of breast cancer, researchers have identified four genetically distinct types of the cancer. And within those types, they found hallmark genetic changes that are driving many cancers. 

These discoveries, published online on Sunday in the journal Nature, are expected to lead to new treatments with drugs already approved for cancers in other parts of the body and new ideas for more precise treatments aimed at genetic aberrations that now have no known treatment. 

The study is the first comprehensive genetic analysis of breast cancer, which kills more than 35,000 women a year in the United States. The new paper, and several smaller recent studies, are electrifying the field. 

“This is the road map for how we might cure breast cancer in the future,” said Dr. Matthew Ellis of Washington University, a researcher for the study. 

Researchers and patient advocates caution that it will still take years to translate the new insights into transformative new treatments. Even within the four major types of breast cancer, individual tumors appear to be driven by their own sets of genetic changes. A wide variety of drugs will most likely need to be developed to tailor medicines to individual tumors.
“There are a lot of steps that turn basic science into clinically meaningful results,” said Karuna Jaggar, executive director of Breast Cancer Action, an advocacy group. “It is the ‘stay tuned’ story.”
The study is part of a large federal project, the Cancer Genome Atlas, to build maps of genetic changes in common cancers. Reports on similar studies of lung and colon cancer have been published recently. The breast cancer study was based on an analysis of tumors from 825 patients. 

“There has never been a breast cancer genomics project on this scale,” said the atlas’s program director, Brad Ozenberger of the National Institutes of Health

The investigators identified at least 40 genetic alterations that might be attacked by drugs. Many of them are already being developed for other types of cancer that have the same mutations. “We now have a good view of what goes wrong in breast cancer,” said Joe Gray, a genetic expert at Oregon Health & Science University, who was not involved in the study. “We haven’t had that before.” 

The study focused on the most common types of breast cancer that are thought to arise in the milk duct. It concentrated on early breast cancers that had not yet spread to other parts of the body in order to find genetic changes that could be attacked, stopping a cancer before it metastasized. 

The study’s biggest surprise involved a particularly deadly breast cancer whose tumor cells resemble basal cells of the skin and sweat glands, which are in the deepest layer of the skin. These breast cells form a scaffolding for milk duct cells. This type of cancer is often called triple negative and accounts for a small percentage of breast cancer. 
 But researchers found that this cancer was entirely different from the other types of breast cancer and much more resembles ovarian cancer and a type of lung cancer. 

“It’s incredible,” said Dr. James Ingle of the Mayo Clinic, one of the study’s 348 authors, of the ovarian cancer connection. “It raises the possibility that there may be a common cause."

There are immediate therapeutic implications. The study gives a biologic reason to try some routine treatments for ovarian cancer instead of a common class of drugs used in breast cancer known as anthracyclines. Anthracyclines, Dr. Ellis said, “are the drugs most breast cancer patients dread because they are associated with heart damage and leukemia.” 

A new type of drug, PARP inhibitors, that seems to help squelch ovarian cancers, should also be tried in basal-like breast cancer, Dr. Ellis said. 

Basal-like cancers are most prevalent in younger women, in African-Americans and in women with breast cancer genes BRCA1 and BRCA2. 

Two other types of breast cancer, accounting for most cases of the disease, arise from the luminal cells that line milk ducts. These cancers have proteins on their surfaces that grab estrogen, fueling their growth. Just about everyone with estrogen-fueled cancer gets the same treatment. Some do well. Others do not. 

The genetic analysis divided these cancers into two distinct types. Patients with luminal A cancer had good prognoses while those with luminal B did not, suggesting that perhaps patients with the first kind of tumor might do well with just hormonal therapy to block estrogen from spurring their cancers while those with the second kind might do better with chemotherapy in addition to hormonal therapy. 

In some cases, genetic aberrations were so strongly associated with one or the other luminal subtype that they appeared to be the actual cause of the cancer, said Dr. Charles Perou of the University of North Carolina, who is the lead author of the study. And he called that “a stunning finding.”
“We are really getting at the roots of these cancers,” he said. 

After basal-like cancers, and luminal A and B cancers, the fourth type of breast cancer is what the researchers called HER2-enriched. Breast cancers often have extra copies of a gene, HER2, that drives their growth. A drug, Herceptin, can block the gene and has changed the prognosis for these patients from one of the worst in breast cancer to one of the best. 

Yet although Herceptin is approved for every breast cancer patient whose tumor makes too much HER2, the new analysis finds that not all of these tumors are alike. The HER2-enriched should respond readily to Herceptin; the other type might not. 

The only way to know is to do a clinical trial, and one is already being planned. Herceptin is expensive and can occasionally damage the heart. “We absolutely only want to give it to patients who can benefit,” Dr. Perou said. 

For now, despite the tantalizing possibilities, patients will have to wait for clinical trials to see whether drugs that block the genetic aberrations can stop the cancers. And it could be a vast undertaking to get all the drug testing done. Because there are so many different ways a breast cancer cell can go awry, there may have to be dozens of drug studies, each focusing on a different genetic change. 

One of Dr. Ellis’s patients, Elizabeth Stark, 48, has a basal-type breast cancer. She has gone through three rounds of chemotherapy, surgery and radiation over the past four years. Her disease is stable now and Dr. Stark, a biochemist at Pfizer, says she knows it will take time for the explosion of genetic data to produce new treatments that might help her. 

“In 10 years it will be different,” she said, adding emphatically, “I know I will be here in 10 years.”

Saturday, September 22, 2012

MD Anderson to the Rescue. Thank you.

UT MD Anderson Cancer Center Launches Unprecedented Moon Shots Program 

Effort sets new bar for eradicating cancer; Goal to significantly increase patient survival during the next decade 

HOUSTON — The University of Texas MD Anderson Cancer Center announces the launch of the Moon Shots Program, an unprecedented effort to dramatically accelerate the pace of converting scientific discoveries into clinical advances that reduce cancer deaths. 

Even as the number of cancer survivors in the US is expected to reach an estimated 11.3 million by 2015, according to the American Cancer Society, cancer remains one of the most destructive and vexing diseases. An estimated 100 million people worldwide are expected to lose their lives to cancer in this decade alone. The disease’s devastation to humanity now exceeds that of cardiovascular disease, tuberculosis, HIV and malaria – combined. 

The Moon Shots Program is built upon a “disruptive paradigm” that brings together the best attributes of both academia and industry by creating cross-functional professional teams working in a goal-oriented, milestone-driven manner to convert knowledge into tests, devices, drugs and policies that can benefit patients as quickly as possible. 

The Moon Shots Program takes its inspiration from President John Kennedy’s famous 1962 speech, made 50 years ago this month at Rice University, just a mile from the main MD Anderson campus. “We choose to go to the moon in this decade ... because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one which we intend to win,” Kennedy said. 

“Generations later, the Moon Shots Program signals our confidence that the path to curing cancer is in clearer sight than at any other time in history,” said Ronald A. DePinho, M.D., MD Anderson’s president. “Humanity urgently needs bold action to defeat cancer. I believe that we have many of the tools we need to pick the fight of the 21st century. Let’s focus our energies on approaching cancer comprehensively and systematically, with the precision of an engineer, always asking ... ‘What can we do to directly impact patients?’” 

The inaugural moon shots
The program, initially targeting eight cancers, will bring together sizable multidisciplinary groups of MD Anderson researchers and clinicians to mount comprehensive attacks on:
  • acute myeloid leukemia/myelodysplastic syndrome;
  • chronic lymphocytic leukemia;
  • melanoma;
  • lung cancer;
  • prostate cancer, and
  •  triple-negative breast and ovarian cancers – two cancers linked at the molecular level. 

    Six moon shot teams, representing these eight cancers, were selected based on rigorous criteria that assess not only the current state of scientific knowledge of the disease across the entire cancer care continuum from prevention to survivorship, but also the strength and breadth of the assembled teams and the potential for near-term measurable success in terms of cancer mortality. 

    Each moon shot will receive an infusion of funds and other resources needed to work on ambitious and innovative projects prioritized for patient impact, ranging from basic and translational research to biomarker-driven novel clinical trials, to behavioral interventions and public policy initiatives. 

    The platforms make the program unique
    The institution-wide, high quality scientific and technical platforms will provide key infrastructure for the success of the Moon Shots Program. In the past, each investigator or group of investigators has developed their own infrastructure to support their research programs. Frequently they were under-funded and lacked the high level management and leadership required to ensure that they were of the highest caliber and in particular that they were able to adapt to the rapidly changing scientific and technological environment. The moon shot platforms will be designed and resourced to provide expertise that will support the efforts of all of moon shots teams. The platforms will provide a critical component to the success of each moon shot and of the overall Moon Shots Program. In particular, they will leverage the investment across the moon shots. 

    These platforms include: 

    Adaptive Learning in Genomic Medicine: A work flow that enables clinicians and researchers to integrate real-time patient clinical information and research genomic data, allowing understanding of the cancer genome and ultimately improving outcome.

     Big Data: The capture, storage and processing of huge amounts of information, much of it coming from Next Generation Sequencing machines (genome sequencing). 

    Cancer Control and Prevention: Community-based efforts in cancer prevention, screening, and early detection and survivorship to educate and achieve a measureable reduction in the cancer burden. Interventions in the areas of public policy, public education, professional education and evidence-based service delivery can make a measurable and lasting difference in our community, especially among those most vulnerable - the underserved.

    Center for Co-Clinical Trials: Uses mouse or cell models of human cancers to test new drugs or drug combinations and discover the subset of patients most likely to respond to the therapy. 

    Clinical Genomics: An infrastructure designed to bank and process tumor specimens for clinical tests that can guide medical decisions. 

    Diagnostics Development: The development of diagnostic tests for use in the clinic to guide targeted therapy. 

     Early Detection: Using imaging and proteomic technologies to discover markers that can identify patients with early-staged cancers.   

    Institute for Applied Cancer Science: Developing effective targeted cancer drugs.

    Institute for Personalized Cancer Therapy: An extensive infrastructure that analyzes genomic abnormalities in patient tumors to direct them to the best treatments and clinical trials. 

    Massive Data Analytics: A computer infrastructure that develops or uses computational algorithms to analyze large-scale patient and public data. 

    Patient Omics: Centralizing collection of patient biospecimens (tumor samples, blood, etc.) to profile genes and proteins (genomics, proteomics) and identify mutations that can guide personalized treatment decisions and predict therapy-related toxicity to improve overall patient outcomes. 

    Translational Research Continuum: A framework to facilitate efficient transition of a candidate drug from preclinical studies to early stages of human clinical trial testing so effective drugs can be developed in a shorter time and clinical trials can be quicker and cheaper with higher success rates.

    •  MD Anderson’s “Giant leap for mankind” 

      A year ago, when DePinho was named MD Anderson’s fourth president, he proposed the notion of a moon shot moment. “How can we envision what’s possible to reduce cancer mortality if we think boldly, adopt a more goal-oriented mentality, ignore the usual strictures on resources that encumber academic research and use the breakthrough technology available today?” he asked. Response from the faculty and staff took the form of initial moon shot proposals that targeted several major cancer types and involved large, integrated MD Anderson teams, sometimes numbering in the hundreds.

      Frank McCormick, Ph.D., director of the University of California, San Francisco Cancer Center and president of the American Association for Cancer Research, led the review panel of 25 internal and external experts that narrowed the field to the inaugural six moon shots.
  • “Nothing on the magnitude of the Moon Shots Program has been attempted by a single academic medical institution,” McCormick said. “Moon shots take MD Anderson’s deep bench of multidisciplinary research and patient care resources and offer a collective vision on moving cancer research forward.”
    McCormick added, “The process of bringing this amount of horsepower together in such a focused manner is not normally seen in academic medicine and is valuable in and of itself.”
“The Moon Shots Program holds the potential for a new approach to research that eventually can be applied to all cancers and even to other chronic diseases,” DePinho said. “History has taught us that if we put our minds to a task, the human spirit will prevail. We must do this – humanity is depending on all of us.”
For more information, including backgrounders on the inaugural moon shots, please visit

Friday, August 31, 2012


Friday, August 31, 2001
2:00 PM
North Shore University Hospital, Ambulatory Care Unit
Patient out of surgery, in recovery.

I was the patient. The Friday of Labor Day weekend. Everyone was in holiday mode. I had woken up rather fast because I don’t take pain killers. I really didn’t need them. I had a little bandaid on my left breast where the surgeon had just performed a biopsy for a suspicious shadow that showed up on a mammogram. Mammograms I had been getting since I was 35 because my gynecologist insisted. I was still in my 30′s, had only turned 39 two months before.

I loved my breast surgeon. I had gotten to know him over the years because the same gynecologist  not only had me getting mammograms and sonograms but he had me go to a breast surgeon to have them read because I had really “dense breasts.”  I didn’t know what that term meant back then. I thought it meant it was because I was young and stacked. Nope. I know better now.

There is nurse standing in front of me with a clipboard that is my post-surgical chart. My breast surgeon is standing to my right. I am now in the sitting-in-the-chair mode of recovery. They give you tea and a graham cracker and if you manage to stay upright then you can ambulate your way out the door. I look up at my surgeon and ask him, “Well? Am I OK?” He doesn’t quite look at me, but doesn’t look away either. Maybe he learned that from Professor Clemenza in medical school.

He said, “We won’t know for a few days.”

The nurse quickly looks down at my chart and looks up at my doctor as if to say, “Dude, that’s not what THIS says.” But they make eye contact and the nurse looks at me and then finds a tube to adjust on the patient next to me. Again my doctor says, “We won’t know anything for a while. Go and enjoy your weekend and forget about this.”

That was good enough for me. I wasn’t savvy enough to pick up the clues. I didn’t know about frozen sections and how when mine returned malignant he was so pissed he pushed over an instrument cart. An OR nurse told me that a few weeks later.

I went home with my bandaid. I remember eating dinner, watching some TV and  getting a really good night’s sleep because I still had some of the anesthesia in me. I did the usual weekend stuff and went to the beach. I had a bandeau bikini that covered the bandaid so it was fine. Two cute guys at the next beach blanket flirted with me. They told they were New York Firemen and their names were Ernie and Burt. Most normal human beings immediately think Sesame Street, but since I am an old movie freak, I immediately thought of “It’s A Wonderful Life.” There was a calm about the ocean that day. I was meeting people with names that reminded me of a movie that teaches us how important each of our lives are to every single person we encounter, no matter how fleeting.

The rest of the weekend was quiet. I think I went to a barbeque. I don’t remember telling anyone outside of my family that I had a biopsy for breast cancer. I just let it go. Saying it out loud seemed to make it too real. That was one weekend I will never forget. Not because of what was about to happen, but because I was still free that weekend. Free to live a healthy life. Free to have a child. Free to live in peace without always having to look over my shoulder. What I would give to go back there for just a day and experience true blissful ignorance. But life doesn’t work like that.

A few days passed and I heard nothing. My doctor was off on Labor day and Tuesday he was in the OR. Wednesday he was still waiting for the path report and the one day I didn’t call, they called me. His nurse said he would like to see me. “Could you come in? Say 5:00? Today?” My response was a resounding “But WHY? Why can’t he tell me over the phone?” Denial. Huge. Why the hell would I have to drive all the way over there after office hours for him to tell me I was fine? I still persisted – as if trying to change the verdict before the jury delivered it.

I grabbed a notebook at the last minute in case I had to take notes. Something I would counsel a newbie to do now. Another foreshadowing?

I usually write about my “cancerversary” on the day I was told, because that is what “they” say: “You become a cancer survivor the moment you hear the words ‘You have cancer.” But today, the weather is the same. The date is falling on a Friday, just like eleven years ago, and a lot has gone on since then.

In his office, he turned to me and said, “Let me tell you about your cancer.” Not the classic delivery of “Dear, I have some bad news…” He knew I knew and wasn’t going to pretend this was all some shock. What I didn’t know was that there is more than one type of breast cancer. There is actually a “bad” one -  as opposed to a GOOD one? I got the bad one. Back in 2001, they didn’t have a fancy name for it. It was just the one that had the poor prognosis and early death. I also hit all the top scores on the aggressiveness scale. So now I am an over-achiever? I couldn’t be hitting the top scores back when I took the SAT’s? (I am still ever so grateful for those 200 points they automatically give you for filling in your name correctly.) He told me that my chances of surviving two years, much less the “golden five” were on the slim side.

Many of you know the rest of the story. It was now a race to get things going. Lumpectomy was the way they wanted to go. I had my moments of take them both off NOW! But I was talked out of it. That surgery needed scheduling. I needed to get an oncologist. “Do you have one?” Why in the name of Pete would I already have an oncologist?  Yeah- please put that on my to-do list of Terror.

Speaking of terror, I did find a doctor I thought I should see right away. He was in downtown Manhattan. They fit me in on the next Tuesday at 9 AM. Things were a little busy that day in downtown Manhattan. Suddenly my cancer didn’t seem to amount to a hill of beans when planes were flying over head crashing into buildings. It still haunts me to this day: Were Ernie and Burt, my FDNY friends from the beach, on duty? Did they make it out OK? I’ll never know.

As our nation began a war against terror, I began mine against cancer. God had me there in the city as a witness to 9/11 to toughen me up. I think he thought I needed to get my head out of my self-pitying butt and become a fighter. My chemo started when we invaded Afghanistan. The parallels helped give me the strength I needed.

Since that last, cancer-free weekend the following truths had to be accepted:

1. Nothing would ever be the same again.

2. I would never have children.

3. You learn where you stand with your friends and family. Some are there for you and some forget you ever existed.

4. You never feel entirely safe.

5. Everyone has a story about breast cancer.

6. Pink ribbons, bears, cookies, pins, necklaces and all the other pink shit makes you feel worse. It marginalizes you into what society wants you to be, a pretty little pastel patsy.

7. I am not a pretty little pastel patsy: I am George S. Patton and Michael Corleone rolled into one  and I’m bringing a gun to this knife fight called cancer.

8. Although some may try to make me feel that way, I am no less a woman than I was before all this. In fact, I am better.

9. I know what is important and understand George Bailey on a level now that I never did before.

10. Nobody puts baby in a corner. Especially this baby, baby.
I also found where I believe God wanted me to be in Cancerland. I was to be an active participant, not wrapped up in poor-me, but in giving of myself to every and any woman who needed comfort and strength. I started a support group. I wrote my first book. I turned that into a comprehensive website. I founded my non-profit and started truly helping other women who are not as fortunate as I was to get early detection. I fight every day for young women, especially African-American women, to learn about the “bad”cancer, the one I had, known now as Triple Negative Breast Cancer. That is the kind they are more likely to  get and they get it young. If they wait until they are 40 for their first screening it may be too late.

Also during this time, I managed to fit in another breast cancer diagnosis, this time bigger and more advanced than the first. I had bilateral mastectomies, reconstructive surgery, nine more months of chemo and radiation. I wrote another book to help women live a kick ass life AFTER their treatments are over. I’ve done lots of media and love to give inspirational speeches to women going through this. It can be a hall full of two hundred or an exam room with just one patient. There are a few new things coming up, but I will tell you about them later.

I kept true to the one, deep promise I made to myself: I refused to be the designated cancer patient with my friends, in my community and professionally. The best compliment I get is when people do not believe me when they hear I not only had cancer twice, but chemo and radiation twice as well.

Because of cancer I have friends all over the world who I love with all my heart. I have also lost dear friends to this disease and it is extremely hard. Hard to lose them; hard to try to calm other survivors when they get scared because they think they are next; hard to calm myself down when I think the same thing.

But as I have written in my book and told you here many times: Forward, always forward. Don’t think about the bad thing that may happen- focus on now and the beautiful moments around you that happen every day, because it is these moments that make a life. Living in fear does not.

Be still. Be grateful. Be vigilant. Be forgiving. Be loving. Be sexy. Be unpredictable. Be brave. Be yourself. Just BE.

Eleven years ago on the Friday before Labor day I was just getting home from the hospital. All those years. All the things that have happened.
If you have managed to get to the end of this never-ending post, you’ll understand when I say that “Sometimes the light keeps shining on me; other times I can barely see; but lately it occurs to me: What a long strange trip it’s been.”

Keep truckin’ friends. And never forget:
No Surrender.

Thursday, August 9, 2012

Promising New Trial Results for Metastatic Women

Trial Suggests New Treatment Option for Some Women with Metastatic Breast Cancer

Results from a phase III clinical trial suggest that, for some women with metastatic breast cancer, combining two drugs that work in different ways to disrupt estrogen's ability to fuel cancer growth may delay disease progression and death. The results were published August 2 in the New England Journal of Medicine.

Several breast cancer specialists cautioned, however, that the trial results are not enough to change clinical practice and need to be confirmed.

In the trial, women with metastatic breast cancer treated with the aromatase inhibitor anastrozole (Arimidex) and the antiestrogen fulvestrant (Faslodex) had better progression-free and overall survival than women who were treated with anastrozole alone. Both drugs are already approved to treat metastatic breast cancer.

About 700 women took part in the NCI-funded trial, which was led by SWOG, formerly the Southwest Oncology Group. All of the women in the trial were postmenopausal, had hormone receptor-positive metastatic breast cancer, and had not been previously treated for metastatic cancer. Women in the combination group were given the standard dose of fulvestrant (500 mg) the first time they received it, followed by a lower dose (250 mg) for the remaining treatments. About 40 percent of the women in the anastrozole-only arm began to receive low-dose fulvestrant after their disease began to progress.

Median progression-free survival—the trial's primary endpoint—was 15.0 months in women who received both drugs and 13.5 months in women who received only anastrozole. Overall survival was 47.7 months in the combination therapy arm and 41.3 months in the anastrozole-only arm.
In general, toxic effects were relatively mild and did not differ greatly between the two groups. Nevertheless, 42 patients who received anastrozole alone, and 51 who received both drugs, experienced severe toxic effects, including musculoskeletal pain, flu-like symptoms, and difficulty breathing.

But the results are convincing, said lead investigator Dr. Rita Mehta of the University of California, Irvine, in an interview. "Fulvestrant and anastrozole should be standard for women who would qualify for the study," she said.

But Dr. Jung-Min Lee, of NCI's Medical Oncology Branch, stressed that overall survival was a secondary endpoint of the study and said that several questions need to be answered before the combination therapy is used in clinical practice. "We first have to define the population who might benefit most from the combination therapy," Dr. Lee said. "And we need more data to confirm the overall survival benefit."

The results also conflict with those from a similar international trial, called FACT, which found no difference in overall survival between women who received anastrozole and fulvestrant and women who received anastrozole alone. The trials had several major differences that likely explain the discrepant findings, Dr. Mehta said.

The FACT trial was smaller, she explained, included more women who had received prior tamoxifen (70 percent versus 40 percent), enrolled patients who had completed chemotherapy for earlier-stage disease within the previous 12 months, and was restricted to patients who had suffered a relapse. These differences in the study populations likely "enriched [the trial] for patients with relatively endocrine-resistant disease," she said.
This research was supported by grants from the National Institutes of Health

Thursday, June 28, 2012

The Supreme Court of the United States

Today, June 28th, a decision was handed down by SCOTUS.
You can hear all about it on various news outlets - all with their own spin to suit their needs and agendas.

Here are the facts: The actual opinion and the dissent, annotated and highlighted for ease of reading.

No politics- just the facts.

Monday, June 4, 2012

Worth the Risk?

Today's ASCO Meeting reveals more proof that alcohol increases a woman's risk of developing breast cancer, particularly ER/PR+, post-menopausal breast cancer. In the study, the women affected had an average of 7-14 drinks per week.

The question is, where is the study that establishes that women who have already been diagnosed with breast cancer increase their risk of recurrent disease if they consume alcohol?

Without the data, would you take the risk?

Until the jury comes back with the answers, limiting your alcohol intake may not be a bad idea in your fight to prevent recurrent disease.

Sunday, June 3, 2012


Hope for Aggressive HER2+ Mets:

Sunday, March 25, 2012

The Before Forty Initiative Helps End the Disparity for African American Women


Fear's big role in breast cancer disparity

Doctors and advocates say a fear that keeps possible breast cancer patients from acting quickly is all too common among black women. It is among the factors that contribute to a disturbing trend: Although they are less likely than white women to get breast cancer, black women are more likely to die from it.

The difference in mortality began to emerge in the early 1980s. By 2007, the American Cancer Society found that, even though death rates for both groups were going down, the rate was 41 percent higher among African-American women.

Some health-care professionals and advocates contend that the disparate mortality rates argue for a more urgent effort to reach more black women.

They are frustrated that, with all of the information available about the importance of early detection and treatment, the statistics remain so dire.

In a survey focusing on African-American women by The Washington Post and the Kaiser Family Foundation, 75 percent of black women rated their health as good or excellent, about the same percentage as white women, black men and white men.

Health data, however, tell a different story. Across the country, women of color report higher rates of disease and health problems, are more likely to be uninsured and have had fewer doctor visits for preventive care. A 2009 Kaiser study noted "consistently higher rates of health challenges among black women, ranging from poor health status to chronic illness to obesity and cancer deaths."

For breast cancer in particular, experts cite some additional factors: Black women often get their diagnoses at later stages and appear to be more susceptible to aggressive tumors. They also have a higher rate than white women of a diagnosis before age 40.

Regina Hampton, a surgeon who works with the Capital Breast Care Center in the District of Columbia, which serves uninsured women, said, "a lot of women come in at later stages . . . and what I hear from my patients is they're all afraid."

Besides the fear that most women have that the disease will rob them of femininity or sexuality, Hampton and others think black women also carry angst stemming from a historically unhealthy relationship between African-Americans and a medical system that was inaccessible.

Breast cancer, she said, "is the most treatable female cancer that we have. I think one of the challenges is getting people to realize that the survival rates are very good for breast cancer if you present early. I think that message has not resonated through our community."


Thursday, February 9, 2012

No Surprise for Us About Komen

What can be said that has not already been said?  The blogger army of realistic women, that is, women who really know what breast cancer is, has spoken. For those of us at the No Surrender Breast Cancer Foundation, The Pinkdom's action of shifting hither and yon regarding Planned Parenthood Funding is a blessing. Finally, the pink gel that has been covering the spotlight focused on their activities has finally brought into clear focus who and what they are and have always been. Activist bloggers have been screaming this from the rooftops for years. Now, at long last, The Emperor has no ribbon to hide behind.

Was I surprised that they turned away poor women from screening? No. They have denied our 501c3 a small grant to help us go to under-served areas where we educate young women about their increased risk of developing the aggressive form of the disease, Triple Negative Breast Cancer. Simply stated, they told us that our program of outreach to the less fortunate did "not fit their guidelines." This was particularly true because our program, The Before Forty Initiative, targets young women, under the age of forty. Komen informed us that they do not believe screening should begin until well after forty. Even though their own website states that young women have a greater chance of developing TNBC and specifically mentions African American women - the very women we seek to help. They also fail to mention that Nancy Brinker got her first screening mammogram at age 37. The message? What's good for Ms. Brinker is not necessary for young African American women.

Other large organizations do similar things. They take the pulse of the populace and then suddenly change their focus to fit in better, in order to raise more money.

Whether you agree with the benefits of early detection or not... whether you are pro-life or pro-choice... it doesn't matter. The Komen Pink Kingdom has, in the words of my grandmother, become too big for their britches.  And as such, they lost their focus. Perhaps it got lost in all that pink schmaltz.

I will state, again, clearly and distinctly, what WE stand for and have always stood for since the beginning: We get you through your breast cancer. We teach you about your disease so you can fight it with all the knowledge you need. We take those terrifying first few days and create warriors. We have up to the minute reports on the latest treatment for both early disease and metastatic disease. We spend countless hours educating an entire population of women who mistakenly were led to believe that they are not at risk for breast cancer. We advocate early screening, but don't think mammography is the answer. We believe in MRI's and ultrasound technology. We teach you to never give in, never give up and never surrender to this disease.

Do we get funding? Some. But, to be perfectly honest, we are not very good at fundraising. We simply don't have the resources for expensive campaigns. We have an all volunteer staff of survivors. We were founded by a two-time survivor and if you, too, are a survivor, you know that surviving alone takes up so much time that a choice is made: Spend our time actually helping the women who need us? Or, spending our time thinking up clever ways to incorporate a piece of polyester ribbon into a worthless product to raise money? We choose helping other women and can sleep at night because we know that we have helped someone else sleep  rather than be up terrified and alone. We have taken her under our wing and shown her that she will get through tomorrow and next week and next year.

As the founder of the No Surrender Breast Cancer Foundation, I am damn proud of the work we do and the incredible women and men who make it happen. We may not be billionaires, but we knew we wouldn't be when we decided to give everything up to form our non-profit. Isn't that what non-profit is all about anyway? Perhaps Komen should consider going public, admit they are not truly a non-profit, incorporate themselves like any other huge organization and then put an end to the scrutiny.  Personally, I don't have time to worry about how they should run their organization. I have too many  emails I have to respond to from newly diagnosed women who wrote to me directly.

Komen, a big pink mirror is being held up to you. Do you like what you have become? Is it really what breast cancer is about? If you answer yes, then we must have had a different type of breast cancer. Mine was hell and I am still living with the fallout. But at least I know what's important in this battle.

To every woman battling breast cancer, waiting for treatments to begin, or living with metastatic disease, this post is for you. And so is No Surrender. Any time, day or night. Completely free for your use and always will be.