News from ASCO 2011

June 16, 2011

The American Society for Clinical Oncology (ASCO) held its annual meeting in Chicago from June 2-7, an extraordinary gathering of over 35,000 cancer experts and advocates from around the world. This year, according to TNBCF Medical Advisory Board Member, Eric Winer, MD, there was no study presented on TNBC that represents a major step forward or will have a significant immediate impact on clinical practice. That statement is true for the meeting as a whole in which the majority of studies were focused on incremental advances, especially in the area of targeted therapies.

Iniparib Phase III Study fails to show an Improvement in Survival
The biggest news for TNBC patients actually relates to a study that failed to meet its two primary endpoints. In 2010, data from the Phase II study that added iniparib to the standard chemotherapy regimen of gemcitabine and carboplatin suggested a real advantage to the iniparib arm—and generated a surge of excitement. The buzz died quickly in January when the Phase III trial results didn’t showed no statistically significant advantage in either overall survival or progression free survival when iniparib was added to the standard regimen.

In a special briefing for breast cancer advocates, Charles Hugh-Jones, VP of US medical operations for Sanofi-aventis which makes iniparib conceded that overall the trial had been disappointing. He also pointed out that the data do appear to indicate an advantage to for TNBC patients receiving who get the iniparib/gemcitabine/carboplatin after failing one or more previous chemotherapy regimens. He also noted that laboratory research now indicates that while iniparib has anti-cancer activity, it is not as previously believed a PARP inhibitor. PARP inhibitors are a relatively new group of anti-cancer agents that work by interfering with a cancer cell’s ability to repair damage to its DNA—thus potentially greatly enhancing the effect of chemotherapy and radiation therapy. Hugh-Jones told the advocates that Sanofi is committed to ongoing work with iniparib both to understand its exact mechanism of activity and to determine the subsets of TNBC patients for whom it is effective.

From Eric Winer’s perspective, the iniparib trial is a strong testament to the value of rigorous clinical trials. He notes that, as in usually the case, the Phase II trial was small, enrolling a total of 122 patients in both arms. Phase II trials are used to generate data to drive the much larger Phase III studies—but smaller sample sizes, shorter time frames and the lack of stratification among the patients on the trial can in some instances lead to results that are not borne out in future studies.

“It’s all about expectations,” he says. “All of us—patients, doctors and the pharmaceutical companies—were excited by the Phase II results, and disappointed by the Phase III negative trial. But that’s why we it is so important to do these randomized trials.”

Study shows advantage for regional node radiation
Women with node positive or high risk node negative breast usually receive whole breast radiation therapy following their surgery. A Canadian study indicates that expanding the area irradiated to include regional lymph nodes improves disease free survival, reducing cancer recurrences both near the tumor site and in other part of the body. Regional node irradiation also improved overall survival but not a level that reached statistical significance. Women who received the RNI did have a low but statistically significant increase in grade II lymphedema .

“These results will encourage physicians to offer all women with node-positive disease the option of receiving regional node irradiation,” said Timothy J. Whelan, BM, BCh, lead investigator of the trial.

Prevention study significantly reduces risk of invasive breast cancer
For women who are already confronting a diagnosis of TNBC positive results from a prevention study may seem too late and too little—but for all of us the real hope for the future is no one will have to hear the words “you have breast cancer.” A study presented at ASCO offers the real possibility of reducing the risk of invasive breast cancer using the aromatase inhibitor exemestane. In this large randomized, double-blind trial, (MAP.3 conducted by the National Cancer Institute of Canada), post-menopausal women who were at high risk of getting breast cancer who took exemestane had a 65% reduced risk of developing invasive breast cancer compared to the group receiving a placebo. Women receiving the exemestane reported more symptoms, including hot flashes, fatigue, sweating, insomnia and arthralgia—all known effects of aromatase inhibitors—but according to the study leaders, these did not affect overall health-related quality of life.

While the results were highly significant and the potentially impact on public health is enormous, some experts expressed doubt as to whether women and their doctors would begin using an aromatase inhibitor as a preventive measure.

“It’s an important study,” said Winer, “but we know that a percentage of women being treated for breast cancer discontinue aromatase inhibitors because of the side effects, so it may be difficult to persuade healthy women to take these drugs. It’s not for everyone but for women who are truly at high risk for getting breast cancer, it could be very significant.”

Focus on TNBC and the future
There is no question that researchers are increasingly recognizing the importance of TNBC as an entity and focusing their efforts on several key areas, including:

• Defining exactly what comprises TNBC and developing more sensitive biomarkers for identifying which patients have this disease.
• Within the TNBC patient population, identifying which subsets of patients will benefit from specific targeted therapies
• Identifying new agents and combinations of existing agents that improve the treatment outcomes for TNBC patients.

It was notable at this year’s meeting that TNBC was the topic of a number of international presentations focusing on patient characteristics and treatment approaches in countries around the world. The key to progress is to having the best minds—both in the lab and the clinic—focused on understanding the biology of TNBC and using that knowledge to develop effective, targeted therapies.

Link to ASCO abstracts relating to TNBC:


Peace, Love and a Cure 2011

May 23, 2011

Last week, the rain in the tri-state area stopped long enough for a few rays of sunshine to fall on New Jersey as the Triple Negative Breast Cancer Foundation celebrated its 4th “Peace, Love and a Cure” event.  It was a beautiful evening, attended by over 300 supporters, with the highlight being our wonderful honorees: Karen Wittweger of Genentech, Dr. Lisa Carey and Jennifer Griffin.  Many of you are undoubtedly familiar with Jennifer through her work as a Mideast correspondent for Fox News.  Others may know her through her work as a tireless advocate for triple negative breast cancer, since her diagnosis almost 2 years ago.  Jennifer has brought new visibility to the TNBC cause through her many appearances, her blog and her determination to spread awareness.  We were honored to honor her with the Champion Award!

It is my pleasure to share Jennifer’s inspirational words:

When I was diagnosed with Stage 3 Triple Negative breast cancer on September 28, 2009, I was still nursing my son, Luke. He was just six months old. Our two daughters were 7 and 9 and I immediately realized that if I was going to beat my diagnosis that I was going to have to use all of the skills that I had developed over the years as a journalist covering other people’s wars. I had covered famine in Somalia, Mandela’s release from prison, nearly a decade of fighting between the Israelis and Palestinians, the Iraq and Afghan wars after 9/11. This, too, was a war. It just happened to be in my breast. Seventeen rounds of chemo, a double mastectomy, 6 and a half weeks of radiation and word from my oncologist on April 20, 2010 – my 41st birthday – that I had had a complete pathologic response to the chemotherapy and that there was no sign of cancer. My surgeons had rebuilt me and I felt like the bionic woman with my new breasts. I never would have gotten through my months of chemo and fear that I wouldn’t see my children grow up without the love and support of my friends and family and my extended family at Fox News. My mom, herself a breast cancer survivor, gave me a pep talk and told me I was going to survive. Greta Van Susteren gave me a video camera so that my girls could document the fight. My girls, Annalise and Amelia, kept me laughing and came with me to shave my head and buy my wigs, which they aptly named “the Miley” or after various American Idol stars. My husband Greg did what he does best – remained positive and diverted me by making me pen certain chapters in our book, “This Burning Land” about our years in the roiling Middle East while the doctors gave me chemo. My friends got together and hired a personal chef to start feeding me ultra healthy food because I soon learned that while Triple Negative patients don’t have a tamoxifen or herceptin, we do have a low saturated fat diet and 45 minutes of exercise a day that can lower our chance of recurrence by nearly two-thirds. My friends didn’t trust me to kick my bagel and cream cheese habit so they began food deliveries and nursed me back to health. I learned that food could be medicine and I took up Pilates, which gave me crazy core strength going into the mastectomy. My doctors at Georgetown University’s Lombardi Cancer Center saved my life. I don’t know how to thank them except to do what you all are doing tonight, raising awareness and funds to help the brilliant researchers out there find a cure for Triple Negative Breast Cancer so that no young mother or any woman for that matter will have to go through what I went through. I am the luckiest girl in the world. And with your help, we will find “Peace, Love and A Cure.”

Visit Jennifer’s blog for more on her life as a news correspondent, and about her TNBC journey.

Living with Metastatic Breast Cancer Conference

May 13, 2011
I recently attended a Living With Metastatic Breast Cancer conference in Philadelphia by LBBC (Living Beyond Breast Cancer)., April 30-May 1, 2011.
I think LBBC did a marvelous job with this conference and I also feel we owe a great debt of thanks to the Komen organization for their sponsorship program which enabled over 100 women to attend the conference through a special grant program for those who would have had to struggle financially to attend. Thank you Susan G. Komen for the Cure.

I believe this was the 5th annual conference and there will be another one next year and I would urge anyone who would like to attend to do so. The quality of the speakers was excellent and especially the different workshops were important but the major impression I had was a feeling of hope that was pervasive.

The women I spoke to were all very intelligent, very realistic and were there to learn and to share with each other. I had some absolutely wonderful conversations with many women and heard their stories and was so impressed with their courage, spirit and smarts. One woman, who was volunteering her time at a booth is a 20+ Stage IV survivor and yes she has gone through hell with multiple surgeries and chemo treatments but she is here.

Having just lost a friend to Metastatic Triple-Negative Breast Cancer, last week and others over the last months I know that sometimes nothing seems to work. To be honest, I am still reeling from those tragedies. But I heard a lot of other stories where, at least, disease has been somewhat stable for years. In the Metastatic Breast Cancer Stage IV world there is no cure, so ‘stable’ is, often, about as good as it gets. One survivor who spoke said “I have learned to not fear the thunderstorms but to learn how to dance in the rain.” I keep hearing her words and they continue to resonate with me. I am always telling folks with cancer, to, “try to find the beauty in each day” and I think her advice is the same, expressed a bit differently.

I attended two workshops and felt they were both excellent. One was on brain mets and was led by Dr. Carey Anders at UNC. She is the Principal Investigator of a new clinical trial for TNBC women with brain mets. She explained that one of the main sites for metastasis for TNBC is the brain and there are no FDA approved drugs for brian mets. One of the major problems is that many chemotherapies do not penetrate the ‘blood-brain’ barrier. She went over several that do and her clinical trial combines a parp inhibitor, INIPARIB and Irinotecan, an approved drug for other cancers. There are 11 sites open around the country now. I am not suggesting that anyone here with brain mets join these trial. I am not a medical professional but I would suggest you speak to your oncologist about it and if your oncologist would like to speak to Dr. Anders I have her contact information. If any patient wants information you can call Madlyn at UNC. I spoke to her yesterday and she has been an oncology nurse for 30 years and is very experienced and has a beautiful heart as well. 

Madlyn Ferraro, RN, OCN, CCRC

Network Coordinator

UNC Cancer Network

Clinical Protocol Office

Lineberger Comprehensive Cancer Center

University of North Carolina at Chapel Hill

3rd Floor Administrative Tower, CB 7295

Chapel Hill, NC 27599-7295

phone: 919-966-7359

pager: 919-216-1693

Fax: 919-966-4300

Here is the link to the trial on

Also, please note that in January sanofi announced that INIPARIB in combination with Gemzar and Carboplatin did not meet its endpoints for first-line TNBC patients and first-line patients can no longer join the Expanded Access Protocol (EAP) but it is my understanding that if you had the EAP trial and it was not effective for you it does not exclude you from the INIPARIB–Ironotecan trial. Again, I am not a medical professional so please do not rely on anything I say. If your oncologist is interested he can contact the folks at UNC or at any of the other sites where the trial is being offered.

As an aside, I spoke again with Dr. Anders at the conference and I am so impressed by both her knowledge and her heart. There is, in my opinion, a patient-centered, caring culture at the Lineberger Cancer Center at UNC-Chapel Hill that is very profound. I have met Dr. Lisa Carey and Dr. Chuck Perou there. They are both deeply enmeshed in research regarding TNBC and also Dr. Carey is a medical oncologist, as is Dr. Anders. Again, they do not possess a magic wand but are working hard to unravel some of the mysteries.

On Sunday, I attended Dr. Cliff Hudis’ presentation on TNBC. He did an excellent job in explaining things to a lay audience and patiently answered our questions. One of the things that has been troubling many of us is that, in recent years, scientists have identified the fact that TNBC is not just one disease but has many subtypes. We have been wondering why in addition to testing for HER2neu, PR and ER further testing e.g. to see if the tumor was basal-like was not being done currently. Dr. Hudis explained that, in his opinion, we need clinical trials to prove that doctors can actually use this information to select more effective treatment options.  For example, they would need better evidence that a certain chemotherapy will show some efficacy in treating a basal-like TNBC tumors, as opposed to other chemotherapy options. In other words the treatment will drive the use of pathologic testing rather than testing all tumors and then wondering how to use the information that results. Since the conference I have found e.g. several clinical trials examining basal-like tumors.

Here is one-

ABT-888 in Treating Patients With Malignant Solid Tumors That Did Not Respond to Previous Therapy

This study is currently recruiting participants.
Verified on January 2010 by National Cancer Institute (NCI)

First Received on May 1, 2009.   Last Updated on October 30, 2010   History of Changes
Sponsor: University of Pittsburgh
Collaborator: National Cancer Institute (NCI)
Information provided by: National Cancer Institute (NCI) Identifier: NCT00892736


(the italics below are mine-)


  • Establish the maximum tolerated dose, dose-limiting toxicities, and recommended phase II dose of chronically dosed, single-agent ABT-888 in patients with refractory BRCA1/2-mutated malignant solid tumor; platinum-refractory ovarian, fallopian tube, or primary peritoneal cancer; or basal-like breast cancer.

Again, I feel Dr. Hudis did an excellent job at the workshop and Memorial Sloan-Kettering Cancer Center in NYC is a center of excellence regarding research, treatment and the clinical genetics of breast cancer. Dr. Hudis is Chief, Breast Service Medicine Service which has 18 Breast Medical Oncologists in the dept.
These workshops were an excellent way to meet expert oncologists in an intimate setting and both Drs. Anders and Hudis made us feel welcome and our questions were answered thoroughly and patiently. A wonderful experience from my perspective and the women I spoke to regarding several of the other workshops were enthusiastic about them as well.

It was a bit frustrating that there were so many concurrent sessions but the podcasts will be helpful. That is the nature of most conferences and the next one I will attend ASCO in Chicago will be even more difficult to navigate.

So, thank you LBBC for this wonderful conference and thanks again to Komen and the other sponsors. I would encourage all of you to watch the podcasts that should be out soon and I will blog when the next conference is scheduled. Special thanks to Elyse Spatz Caplan, director of Programs and Partnerships and the wonderful staff at the event. Everyone was super helpful, friendly and professional.
all the best,
p.s. It is my understanding that there will be podcasts of all the sessions. I look forward to seeing the ones I missed. I will advise as soon as I know. Also will advise for the date for the conference next year..

Saturday, April 30, 2011

9:00 a.m. – 10:00 a.m.               Registration and Continental Breakfast

10:00 a.m. – 10:15 a.m.             Welcome and Introductions (LBBC)

10:15 a.m. – 10:45 a.m.             Plenary Session I

Treating Metastatic Breast Cancer

Ruth Oratz, MD, FACP

10:45 a.m. – 11:15 a.m.             Plenary Session II

In the Pipeline: Understanding Drug Approval

Dr. Robert Somer, MD

11:15 p.m. – 12:00 p.m.             Questions & Answers with Drs. Oratz and Somer

12:00 p.m. – 1:30 p.m.               Plated lunch, networking and visit with exhibitors

1:30 p.m. – 2:45 p.m.                Workshop Session One (see below)

2:45 p.m. – 3:15 p.m.                Break – Networking and visit with exhibitors

3:30 p.m. – 4:15 p.m.                Plenary III

Support and Communication: Getting What You Need
Marilyn Brine Gilmour, MSW, LICSW

4:15 p.m. – 4:45 p.m.                Questions and Answers with Ms. Gilmour

4:45 p.m.                                 Closing remarks

5:00 p.m. – 6:00 p.m.                Networking reception

Sunday, May 1, 2011

8:30 a.m. – 9:00 a.m.                 Continental Breakfast

9:15 a.m. – 10:30 a.m.               Workshop Session Two (see below)

10:30 a.m. -11:00 a.m.               Break

11:00 a.m. – 12:15 p.m.             Closing Plenary Session (see below)
Ask the Expert: Managing It!

12:15 p.m. – 1:00 p.m.               Closing Networking Reception


Workshop Session 1

Saturday, April 30

1:30 p.m. – 2:45 p.m.

Workshop A. Brain Mets

Carey K. Anders, MD, FRCPC

Workshop B. Eating Well for Feeling Good

Katrina Claghorn, MS, RD, CSO, LDN

Workshop C. Close-Up on Neuropathy

Steven C. Cohen, MD

Workshop D. Creating Your Stress Reduction Toolbox

Marilyn Brine Gilmour, MSW, LICSW

Workshop E. Taking Control: End-of-Life

Terri Altilio, LCSW, ACSW

Workshop F. Care for the Caregiver: Understanding Your Needs

Lara Krawchuk, MSW, LCWS, MPH

Workshop Session 2

Sunday, May 1

9:15 a.m. – 10:30 a.m.

Workshop G. Bone Mets

Adam Brufsky, MD

Workshop H. Acupuncture

Mary Ellen Scheckenbachm MAc, LOM

Workshop I. Close-Up on Fatigue

Ann M. Berger, PhD, APRN, AOCNS, FAAN

Workshop J. Flying Solo: Managing Mets as a Single Woman

Helen L. Coons, PhD, ABPP

Workshop K. Doctor-Patient Communication: Making Treatment Decisions

Rick Michaelson, MD

Workshop L. Triple-Negative Metastatic Breast Cancer

Clifford A. Hudis, MD

Ask the Expert Panel: Managing It!

Sunday, May 1

11:00 a.m. – 12:15 p.m.


  • Helen L. Coons, PhD, ABPP
  • Clifford A. Hudis, MD
  • Spencer Rand, Esq.
  • Mary Ellen Scheckenbach, MAc, LOM
  • Woman Living with Metastatic Breast Cancer (TBD)

A Belated Mother’s Day Gift

May 11, 2011

This blog entry comes to us courtesy of one of the Triple Negative Breast Cancer Foundation’s longtime forum members, Natalia M., who shares with us her very personal story about motherhood and TNBC.  Thank you, Natalia, for your “gift” to us all!

Tough decisions (or my quest through whether or not to have a child after breast cancer treatment)

*** Disclaimer:  I hate to start my blog post with a disclaimer but this is the lawyer in me speaking. This blog post is the result of my own personal views and experiences and it doesn’t intend to give any type of medical advice or to influence anyone’s decisions with regards to the issues addressed herein.

  It was at my second opinion surgeon’s appointment that the issue of fertility and cancer treatment was brought to my attention after my cancer journey began. I had been married for over seven years and we had waited for the right moment to have children. I had a miscarriage on our first try. Thankfully we were able to get pregnant easily again and after an uneventful and very happy pregnancy I gave birth to a beautiful healthy boy.

 I had returned back to work and was juggling motherhood and work and I had never been happier. When I was diagnosed with breast cancer the news came to me like a shock; like if I had hit a wall in the middle of the road during a beautiful drive. Of course the first thing that came to my mind was my son. I didn’t want to leave a baby so young without a mother; I didn’t want to think about all the possibilities down that road. I immersed myself in research about triple negative breast cancer and what to do about it and how to improve my chances of being able to see my son grow up.

 But during those crazy, anguish-filled, uncertain and almost surreal weeks, I didn’t think about the possibility, or not, of having more children. When the doctors told us about the fertility issues related to cancer treatment we were faced with yet another important decision to make. We were given the option of seeing a fertility specialist in order to take steps such as freezing embryos or eggs in order to ensure that we could have more kids in the future. For both my husband and I our siblings are a very important part of our lives, so we definitely wanted our son to have them; and we enjoyed being parents so much that we had already talked about trying to have at least one or two more babies.

 However, when we researched about the fertility treatments we learned that I would have to receive treatment with hormones, which would put me in increased risk for cancer on its own (and it could also affect the breast cancer that I already had). So at that moment I decided to focus on getting rid of my breast cancer, as my son was my first priority and I needed to do all I could to make sure I would be there for him. We also knew that studies show that the younger a woman is when going through chemo the better her chances are of being able to conceive. We left it in God’s hands and went ahead with surgery and chemo.

 Once I was done with chemo and radiation I found myself looking forward to having my period back.  It was also the time for me to face the decision of what to do about my ovaries.  The fact that I have the BRCA 1 mutation makes me prone to both breast and ovarian cancer. When I talked about that subject with my doctors, the children issue inevitably came up. They all told me they believed I would get my period back and that it would be safe for me to eventually have children.  They all said that the body got rid of all residues from chemo and radiation quickly and at that time, about 5 months after finishing radiation, my blood counts and the rest of my body were back to normal and healthy enough for me to have a baby.  However their opinions differed as to when it would be wise for me to get pregnant again.

 Half of my doctors said that I should try to get pregnant as soon as I got my period back. They said I should go on with my life and not dwell on cancer and the fear of recurrence.  They also want my ovaries out ASAP. The other half believed I should wait until the three-year recurrence peak for TNBC has passed. As one of them put it, it is already bad to have a recurrence and having it while pregnant would make it worse. He reminded us of how after the three years the chance of recurrence fell and so we would be less likely to face the tough decisions that families face when fighting cancer while pregnant. They also said that since I am still young waiting for a little while will not make much impact on my ovarian cancer risk.

 So it has not been easy for us to decide about when to do it. I used to joke by saying I would split the difference. But it has been already two years and a half since my surgery and at this point I think I want to play it safe and just wait another six months before I decide to try.

 I am a nerd; I have to admit it, I have always been one. As a cancer patient, this means that I try to research and learn about everything I am facing. Although my doctors have all said that it is safe for me to have more children, I have read and heard about PABC or pregnancy associated breast cancer. This has cast some doubts on my decision whether or not to have more children.

 Breast cancer is considered to be associated with pregnancy if diagnosed during a pregnancy or, as in my case, within a year following delivery[1]. Doctors at MD Anderson and other cancer centers have studied it closely as in PABC the rates of death from breast cancer are high. Recent studies have shown that this is mostly due to the fact that diagnosis during pregnancy is difficult as the breasts are too dense for mammograms and tests like PET Scans and similar are not recommended[2]. In these cases treatment is usually postponed until the fetus is able to take the chemo without problems or even until it can be safely taken out of the patient. Since these patients are usually young women whose cancer is usually pretty aggressive, any delays in diagnosis and treatment could affect their survival rates.

 The links between the pregnancy hormones and breast cancer are not yet fully understood. Just recently, several studies have shed some light on how the inflammation of the breast tissue that takes place during pregnancy affects the rate at which breast cancer grows[3].  Another recent study found that giving birth multiple times was related to an increase in the risk of developing triple negative breast cancer[4]. But this still doesn’t answer the question as to whether the pregnancy induces or causes the cancer. Also, the surge in hormones that pregnancy brings to a woman’s body may also promote the development of breast cancer. Although there are no definite studies showing a link between this surge in hormones during pregnancy and breast cancer, there are several studies showing that estrogen levels do affect the development of breast cancer even in hormone negative cases[5].

 BRCA status may also affect the risk of breast cancer associated with pregnancy. Some early studies showed that BRCA related breast cancer risk was associated with pregnancy[6]. But, other studies showed no definite association between pregnancy and BRCA related breast cancer risk[7]. More recent studies showed that the effect of pregnancy on the risk of breast cancer may differ between BRCA1 and BRCA2 mutation carriers at the data seemed to show that an increased number of pregnancies did increase the risk of breast cancer for BRCA2 mutation carriers but not for BRCA1 carriers[8].  Also, some studies have shown that estrogen does play a meaningful role in the development of breast cancer in BRCA1 mutation carriers. Some are even contemplating the use of hormone therapy as an alternative for breast cancer prevention for BRCA1 carriers even in hormone negative breast cancer cases[9].

 On the other hand, a recent meta-analysis that was published last year[10] looked at various studies that followed breast cancer survivors that had children after being diagnosed and treated and in general their survival rates were better than those of women who didn’t. In fact, doctors are currently studying the role that pregnancy hormones play in breast cancer, as they actually seem to prevent it, and there are ongoing clinical trials in which women are being given the hormones to prevent breast cancer[11]. There are no studies showing that a pregnancy after being successfully treated for breast cancer increases the chance of a recurrence[12]. Furthermore, what the studies on the subject seem to show is that pregnancy seems to offer some type of protection from a breast cancer recurrence[13].

 So far my research has not given me a definitive answer; I guess that science isn’t able to provide one yet. I am still undecided as to what to do and although so far none of my doctors have advised me against having another child I don’t want to have any regrets and I am still haunted by the fact that I found my cancer within a few months after giving birth. In the meantime, I am enjoying my little one and have actually found this time I’ve waited to have another one as a blessing, as I am being able to fully enjoy my child.  I have found that breast cancer is more than just a challenge itself as it brings many challenges along side. Fertility and parenthood are some of the ones that I have encountered along the way and as with the rest, I will try to educate myself as much as I can in order to make a decision that I can live with.

You CAN Survive Triple Negative Breast cancer

April 18, 2011
 Written by Patricia Prijatel on her blog, Positives About Negative, and posted on April 11, 2011.

Triple-negative breast cancer has caught the attention of major researchers throughout the world, which is a great thing—it means that we are learning more and more about how to prevent and treat this illness. The downside of the research popularity is that the media and medical journals have developed depressing and frightening catch phrases for it, such as deadly, particularly aggressive or, my favorite, a lethal triad. People who write these words do not realize that they can terrify the women who read them, hitting like a heavy thud on our hearts. Researchers are trying to define the disease. Patients are trying to beat it.

 The aggressive nature of hormone-negative is a comparative measure. That is, these cancers are, in general, more aggressive than hormone-positive cancers—although, in some cases, only slightly more aggressive. And some hormone-negative cancers can actually be less aggressive than some hormone-positive cancers. Scientists work in generalizations, defining how the disease affects women as a group. Individual cases vary and, researchers increasingly say, are as unique as our DNA.

 How researchers classify triple-negative, for example, can vary. My own case—negative for estrogen and her2, but weakly positive for progesterone—puts me in a fairly narrow subset. Yet I had two oncologists tell me that they classify weakly positive as a negative, meaning I would be triple-negative. Researchers disagree, usually considering any level of positive as being positive. It is possible, though, that my weakly positive progesterone put me in a less agressive subset that is so small it is seldom researched.

 So let’s look at some of the data and what they mean. And rather than simply accepting the gloomy picture that is often presented, let’s approach this in the enterprising spirit of yeah, but….

It is true that hormone-negative breast cancers can be more aggressive than hormone-positive. But the majority of women who get the disease survive.

 It is true that most cases of recurrence come within the first three years. But that means that those who hit five years are looking at an excellent prognosis. A better long-term prognosis, in fact, than those with hormone-positive.

 It is true that triple-negative is more likely to have spread to the lymph nodes. But many women with TNBC have no positive nodes—and, if they do, they still beat the disease and survive.

 I have learned to turn statistics around to improve my perspective. For example, when research says that 30 percent of the women with triple negative died in a particular study, I turn this around and realize that 70 percent of the women survived. And I plan to be one of those women. And if, in another study, a triple-negative woman faces a two-fold increased risk of death compared with hormone-positive, I look at the fact that the difference might be between a 10 percent risk of and a 20 percent risk. And, while those decreased odds are startling and sobering, they still can mean an 80 percent chance of not dying. Even starting with a poorer prognosis, the odds can still be with you.

 NOTE: This is an excerpt from the book I am writing on triple-negative breast cancer.


Something Interesting from today’s New York Times

March 22, 2011

March 21, 2011, 4:23 pm <!– — Updated: 4:23 pm –>After a Diagnosis, Wishing for a Magic Number

Keith Negley

When my wife, Ruth, learned she had breast cancer, friends told us not to worry. After all, they said, a lot of progress has been made.

Marilynn K. Yee/The New York Times
Patient Journal
The Doctor’s Wife

Dr. Peter B. Bach writes about his wife’s breast cancer diagnosis and treatment.

As a cancer researcher and a doctor at Memorial Sloan-Kettering Cancer Center, where she was being treated, I knew this was true. Progress has indeed been made. Throughout my career, death rates from breast cancer in the United States have steadily declined by 1 percent to 2 percent a year.

Some experts credit mammography screening for up to half the decline; others credit it less, or not at all. But there is no dispute that much of the progress has come through better treatments for early-stage breast cancer. Chemotherapy has improved, radiation has grown more effective and additional drugs lower the risk that the cancer will come back.

All of this progress meant that the chance that Ruth’s breast cancer would come back was a lot lower than it might have been years ago. But what was that chance, anyway? It was the obvious question, and we put it to her oncologist at our first appointment with him. He paused and then offered a peculiar answer. He said we should realize that it didn’t matter. It would either happen or it wouldn’t.

I was stunned. Her oncologist, the one I had asked to see her when we found out Ruth had breast cancer, is the most quantitatively oriented and science-based doctor I know. He is one of the world’s authorities on breast cancer, has conducted many of the crucial studies of treatment and written some of the most important papers about it.

The notion that the probability didn’t matter was antithetical to everything I knew about him. Of course it’s about the probabilities — those are the things he is trying to affect every day when he gives women chemotherapy and other treatments.

More maddening still: he obviously knew the data inside and out, so it wasn’t a hard question; it was an easy one. I just expected him, in his direct way, to look at us, head slightly tilted, and say: “2 percent, which is one in 50,” or “25 percent, which is one in four,” whatever. We’d swallow hard, and then we’d go on.

His approach also didn’t make any sense because he couldn’t really keep the information from us. Never mind going on the Internet; my expertise includes the area of prognosis and cancer patient outcomes. I could find all the relevant data and figure out the answer myself. Down to the last digit.

But instead of just spitting out a number he went all philosophical on us.

In his 1985 essay “The Median Isn’t the Message,” the paleontologist and MacArthur Foundation “genius” award winner Stephen Jay Gould described the solace he felt after he learned he had a deadly cancer when he saw in the statistics that a few rare people actually lived a very long time, even though most people with his diagnosis succumbed rapidly.

He decided at that moment to be one of the rare ones; put scientifically, he planned to be in the tail of the distribution. It is a beautiful essay by one of the greatest scientific writers of our era. And it was prescient. He lived another 17 years after publishing it.

But every time I read it, I see past my admiration of the man to the conclusion that Dr. Gould chose to actively delude himself. Only in Lake Wobegon can everyone be reliably above average, and there’s merit to being realistic.

Dr. Atul Gawande, another MacArthur award winner, and perhaps an even more gifted writer than Dr. Gould, both paid tribute to and took issue with his argument in a recent essay in The New Yorker called “Letting Go,” noting that although hope has many roles, “hope is not a plan.”

So, Doc, why not just tell us our odds?

Ruth’s oncologist elaborated on his refusal, promising he would tell us the number just as soon as we told him what probability of recurrence would cause us to make different choices for our lives.

Neither of us had an answer.

What he was proposing was that we adopt neither Dr. Gould’s rosy view that our chances are somehow just better than the statistics, nor take Dr. Gawande’s implicit advice that we confront the number and plan accordingly. Because the truth is that no number, no matter how low, would have let us go skipping out of the office confident that this monster was slain for good. And no number, no matter how high, would keep us from living our lives.

I never asked again.

Dr. Peter B. Bach is an attending physician at Memorial Sloan-Kettering Cancer Center in New York City. His essays, about his wife’s breast cancer, appear Tuesdays on the Well blog.

Breakthrough for TNBC

March 20, 2011

I recently returned from London, where I attended the Triple Negative Breast Cancer 2011 Conference hosted by Breakthrough Breast Cancer, a leading breast cancer research organization in the United Kingdom. Since its founding in 1991, Breakthrough’s researchers have been involved in some of the most ground-breaking developments in breast cancer, and they are now working on finding answers to some of the perplexing questions about triple negative breast cancer, most notably through the launch of a Triple Negative Trial which should be reporting preliminary results in 2012/2013. 

The Conference brought together over 200 scientists, research fellows and clinicians from all over the world to discuss many aspects of the TNBC puzzle- from cell biology to treatment protocol.  It was so ratifying for the Triple Negative Breast Cancer Foundation to be represented amongst this audience.  I spoke with many attendees who were unaware of the Foundation’s existence, but were so excited to hear about all that we are doing! 

One of the people I especially enjoyed meeting was Laura, a TNBC survivor from Romania, who is lucky enough to be able to have had her TNBC surgery, chemotherapy and radiation in the UK.  By her telling, she would never have been able to receive state-of-the -art treatment in her home country, and she wanted to give herself the best chance at surviving TNBC.  In the course of her diagnosis and search for information, she found the Foundation website and became connected to the forum- which she calls her “lifeline” – during the months of subsequent treatment.  How amazing that we are able to offer support and hope to someone halfway around the world!


February 28, 2011

C4YW– the Conference for Young Women Affected by Breast Cancer- was held this weekend in Orlando, Florida.  Presented by Living Beyond Breast Cancer and Young Survival Coalition, the conference had over 700 attendees and more than 80 exhibitors.  That’s a long way from eleven years ago, the first time the conference was held in Philadelphia, with just about 300 attendees.  Younger women with breast cancer are making their presence known!

The conference featured an opening plenary session with Ann Partridge, MD, a leading researcher on breast cancer in younger women, who provided an update on medical issues, including those particularly relevant to TNBC.  There were 26 thought- and question-provoking workshops throughout the weekend.  Special mention to Sabitha Pillai-Friedman’s “Sex and Intimacy” workshop, which drew rave reviews, as did Merle Mishel’s “Fear of Recurrence”.  I had the honor of moderating the TNBC workshop on Sunday, presented by Edith Mitchell, MD of the Kimmel Cancer Center in Philadelphia.  Dr. Mitchell took the audience through the basics as well as the nuances of TNBC and spent extra time answering the many questions posed to her.

My sincere thanks to Natalia Munoz, an active member of our TNBC community, who came from Miami to help me in our exhibit booth.  Natalia is a 2+ year survivor with an adorable 2 1/2 year old son, and I thoroughly enjoyed getting to know her this weekend and talking to the many women with TNBC who came by the booth and introduced themselves as members of the “club”. 

Some “shout-outs” to some of the exhibitors I met who are doing amazing work within the breast cancer community:

Working with women as they complete their breast reconstruction journey, Renee Maschinot of Pink Ink Project provides areola tattooing.

Lori Simon and the staff and volunteers of Casting for Recovery:  Founded in 1996, the program enables women whose lives have been affected by breast cancer to gather in a natural setting and learn the basics of fly fishing.

Veronica Brett:  Patricia Brett has created beautiful and wearable swimwear for women post-mastectomy.

For parents of young children looking for ways to explain the effects of chemo, check out Thousand Words Press, publishers of “Nowhere Hair” by Sue Gladen, with adorable illustrations by Edith Buenen.

Congrats to LBBC and YSC on a great conference!

Dividing Day

February 13, 2011

In the Broadway musical, The Light in the Piazza, staged in 2005, there’s a beautiful song written by Adam Guettel called “Dividing Day.”  It is sung by a woman who realizes that the love is gone from her marriage, and she is questioning whether there was a specific moment- a “dividing day”- when everything changed:

When was dividing day?
Was it on the church step?
Did it happen right away?
Were you lying next to me,
Hiding what you couldn’t say?
How could I have guessed?
Was my cheek upon your chest?
An ocean away…

People looking back on a defining moment in their lives often say that “everything changed in the blink of an eye”.  I recently experienced this when my son was diagnosed with Type 1 diabetes.  One minute on that Wednesday, I was doing work, eating lunch, talking with a colleague and the next minute I heard the words, “I have diabetes.”  Although he will be fine and live a long and productive life, that was our Dividing Day.  It’s so strange to realize that you can never go back to where you were before that moment, and that everything that happens afterward is based on that moment.

Every year there are over 200,000 Dividing Days experienced by the women who are diagnosed with breast cancer, and by their families and friends as well.  I know that none of these people will ever forget when they first heard the news, and how their lives were forever changed.  I’m sure that, given the opportunity, most would wish to go back to the moment before they knew, and change their history.  Although you can’t go back, you can definitely move forward, as many do in creating a new and different life after breast cancer.

I wish you all a happy and healthy life!

The Story of HeLa

January 24, 2011

It sounds too much like science fiction to be true: cells taken without a patient’s knowledge or consent become the first human cells to become “immortal” when grown in culture- cells that have contributed to some of the 20th century’s major scientific advancements: the polio vaccine, understanding the behavior of viruses, the study of the effects of radiation on the human body, in vitro fertilization, and the mapping of the human genome (just to name a few!).  Yet this is a true story.

These cells, called HeLa after Henrietta Lacks, the patient from whom they were originally taken, are famous but the person responsible for them is not.  Henrietta Lacks died in 1951 at the age of 31 of cervical cancer, never knowing that samples of her cancerous tissue had been taken by her doctor at Johns Hopkins for use in his lab.  None of her family knew what had happened either, until they discovered that Henrietta’s cells were still alive and benefiting science more than 20 years after her death.  And, although HeLa cells are part of a multimillion dollar biotechnology business, members of the Lacks family are without health insurance and live in relative poverty.

The story of Henrietta and her family and the search to uncover what really happened are at the core of science writer Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, published in early 2010.  Another central theme, about the advent of the era of informed consent and other bioethical issues, is still relevant in today’s world.  Although we have certainly come a long way from the Tuskegee syphilis studies and other experiments done without consent (many on unsuspecting African-Americans), there is still much debate on the use of human tissue in research, who benefits from this use,  and whether patients need to be informed when their tissue may be used for profit.   At the core of this debate for many in the cancer community is the ownership of gene patents and who controls them.  Many of you are no doubt aware of this debate as it relates to Myriad Genetics and the BRCA1 and BRCA2 genes.  In March of last year, a New York federal court ruled that Myriad’s gene patents on BRCA1 and BRCA2 were invalid.  Although this decision is under appeal, the support it has garnered from the scientific and patient communities is very strong.

It is clear that the ongoing study of breast cancer requires patients to participate in trials and involves the use of human tissue in order to develop new, targeted therapies.  It is equally clear that patients need to have a voice in decisions that are made about them.  To find out how we got to where we are today, take time to read The Immortal Life of Henrietta Lacks.  It’s an unbelievably true story, and a fascinating read.

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