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)

An important free breast cancer symposium San Diego Jan 22

December 27, 2010

Dear all,

I recently registered for a one day symposium (San Diego January 22, 2011) that, in my opinion, will be an outstanding event. I spoke to Phillip Renner of the Oncology Learning Group to see if there was a special rate for advocates and he indicated that if I click on Oncology Learning Group in the registration form under groups registration would be without charge. Also, if any of you have friends who are Fellows, Physician Assistants, Nurses, Nurse Practitioners, and Pharmacists-they also can attend without charge.
I wrote to him last week and asked him if I could post the details of the symposium on the TNBC Foundation message board and he kindly responded below so that, now, anyone here can register without charge. The Breast Medical Oncologists presenting are excellent and there will be a separate section on TNBC chaired by Dr. Lisa Carey, one of the country’s foremost experts on the topic. As part of the TN session Dr O’Shaughnessy will talk about PARP and Dr. Garber will lead an interactive patient discussion. They are both very knowledgeable and excellent speakers.
I am also looking forward to hearing Dr. Dennis Slamon’s remarks. He is acknowledged to be one of the scientists who helped Herceptin become an approved drug. Unfortunately, we have no such drug for our community but the scientists are working hard, I am convinced, so that we will have better treatment in the future.
As a volunteer patient advocate, I often help women who are not TN so I am attending all of the talks. Even if your interest is primarily TNBC I would suggest attending the whole day, if you can, because some of the oncologists who are presenting on other topics are also experts on TNBC. A prime example of this is Dr. Hope Rugo from UCSF. She is talking about treating metastatic disease and there are other sessions e.g. on brain and bone mets and again while not specific to TNBC, solely, I believe these sessions will be useful for our community.
Also, one of the possibilities is sitting at lunch with one of the oncologists/scientists. A marvelous opportunity to meet an expert.
If anyone is coming, let’s please try to get together to say hello. It would be wonderful to meet you.
Happy New Year to all and hopefully looking forward to seeing some of you next month.
all the best,

p.s. also, for full disclosure purposes I have no financial arrangements with Mr. Renner, his organization or anyone else associated with the Symposium.

Here is some of Mr. Renner’s reply to me, followed by some of the Symposium details and faculty info.

“Dear Steve:

We would love for you to publicize our symposium. You also have our permission to allow anyone who registers through your postings to register as Registration Type “Oncology Learning Center” so that they are not charged.

The primary objective of the Fourth Annual Symposium on Personalized Therapies and Best Clinical Practices for Breast Cancer and its corresponding, on demand, Web-based Internet enduring materials is to provide oncologists, hematologist/oncologists and allied healthcare professionals treating breast cancer patients with the knowledge and competence enabling them to close several very important Practice Gaps arising primarily from practice-changing data presented at the annual 2010 ASCO and other major meetings in 2010, publications and interviews with academic experts subsequent to the Third Annual Symposium on Personalized Therapies and Best Clinical Practices for Breast Cancer held this past February 6, 2010.

A faculty consisting of the true scientific and clinical breast cancer experts will present, review, and discuss how to optimally integrate molecular diagnostics, predictive and prognostic tests, radiation and surgery, with chemotherapy and targeted therapy into personalized approaches for the treatment of breast cancer with best clinical practices to help clinicians close their Practice Gaps.  There are neither prerequisites nor relevant system barriers to these educational activities.

To help make this forthcoming symposium and corresponding enduring materials a valuable core component of our entire personalized therapies curriculum, we are constantly and systematically conducting numerous focus groups, personal interviews and Internet-based surveys with oncologists, hematologist/oncologists and other allied healthcare professionals.  Additionally, we use the Audience Response System (ARS) during each of our live symposia and also ask questions of the learners during the Web-based enduring materials.  Answers to these questions provide immediate feedback to the learners and also provide useful information for identifying and developing the most important Practice Gaps for future CME activities such as the two that are the basis for this grant request.

In addition, we recognize that it is our Accreditation Council for Continuing Medical Education (ACCME)-approved mission, and the most important goal of all OLC CME activities to improve how physicians and allied healthcare professionals treat their cancer patients.

Thank you for your E-mail and time.

Kind regards,


Phillip Renner, CCMEP
Oncology Learning Center

1415 Legacy Dr., Suite 250
Frisco, TX 75034

214-269-2007 (direct)
214-866-0305 (office)
214-866-0311 (fax)

Having trouble reading this email? View it in your browser.
Fourth Annual Symposium on Personalized Therapies for Breast Cancer
Registration is FREE for
Fellows, Physician Assistants, Nurses, Nurse Practitioners, and Pharmacists
Hyatt Regency La Jolla at Aventine
3777 La Jolla Village Drive
San Diego, California 92122 

Click here for current weather information


Chief, Division of Hematology-Oncology
Professor and Executive Vice Chair, Department of Medicine
Director for Clinical Research
Jonsson Comprehensive Cancer Center
Director, Revlon/UCLA Women’s Health Research and Cancer Research Programs
University of California at Los Angeles School of Medicine
Los Angeles, CA

Medical Director
UNC Breast Center
University of North Carolina
Lineberger Comprehensive Cancer Center
Chapel Hill, NC



Friday, January 21, 2011
5:00 PM – 9:00 PM Registration
Saturday, January 22, 2011
6:30 AM Breakfast Buffet
6:30 AM Registration
7:20 AM Welcome and Introductions and CME Pre Test
Lisa Carey and Dennis Slamon
Session 1: ER-POSITIVE DISEASE: Testing and Therapy – CHAIR: Hyman Muss
7:30 AM Testing for ER-Positive Disease: The New Landscape Due to “Game-Changing Guidelines”: Practical Implications in the Clinic Today for Aiding Treatment Decision Making
Andrea Richardson
8:00 AM Treatment of Adjuvant and Neoadjuvant ER-Positive Disease
Hyman Muss
8:20 AM Treatment of Advanced/Metastatic ER-Positive Disease
Paul Goss
8:40 AM Point-CounterPoint Debate: The 70-gene test versus the 21-gene assay versus IHC Testing: Which of these three tests is most useful? In which patients should each be used? Who? Why?
Use the 70-gene test: Lajos Pusztai
Use the 21-gene assay: Craig Allred
Use IHC: Hyman Muss
9:10 AM Session 1 Additional Case Studies – The learners select treatment options for several additional interactive patient cases.
Lajos Pusztai
9:30 AM Session 1 Roundtable Panel Discussion: Describe for which ER-positive patients each of these three tests should be used and in what clinical situations. Discuss the remaining issues and controversies.
Session 1 Faculty
9:45 AM Q & A
Learners and Faculty
10:00 AM BREAK
Session 2: HER-2 DISEASE: Testing and Therapy – CHAIR: Dennis Slamon
10:15 AM Treatment of Early-Stage Patients with HER2-Positive Disease
Edith Perez
10:35 AM Treatment of Advanced/Metastatic HER2-Positive and HER2-Negative Disease
Mark Pegram
10:55 AM Session 2 Additional Case Studies – The learners select treatment options for several additional interactive patient cases.
Harold Burstein
11:10 AM Roundtable Panel Discussion: Describe which HER2-positive regimens should be used in what clinical situations. Discuss the remaining issues and controversies.
Session 2 Faculty
11:15 AM Q & A
11:30 AM LUNCH with the Professors and Exhibits
Each of the day’s faculty will be assigned a separate lunch table so that the symposium participants can further interact with a faculty member on his/her presentation or topic.
Participants and Faculty
Contents of this E-mail 

Small HrRegister Now

Kindly click the button below to register for this Independent Symposium 

Register Now

Small HrContact Us

Oncology Learning Center, Inc.
1415 Legacy Dr., Suite 250
Frisco, TX 75034
(214) 269 2014 


12:30 PM Treatment of Adjuvant and Neoadjuvant Disease in Patients with Triple-Negative Breast Cancer
Lisa Carey
12:50 PM Treatment of Patients with Advanced or Metastatic Triple-Negative Breast Cancer: How does PARP inhibition affect the current treatment paradigm for advanced or metastatic breast cancer patients?
Joyce O’Shaughnessy
1:10 PM Session 3 Additional Case Studies – The learners select treatment options for several additional interactive patient cases.
Judy Garber
1:30 PM Roundtable Panel Discussion: Describe which drug regimens should be used and in what clinical situations for triple-negative breast cancer patients. Discuss the remaining issues and controversies
1:50 PM Q & A
Learners and Faculty
2:30 PM The new dilemma: targeting VEGF and/or the VEGFR receptor axis? What is the precise role of bevacizumab and multi-kinase inhibitors?
Maura Dickler
2:50 PM Targeting the Microtubule: A new treatment paradigm for advanced or metastatic breast cancer patients?
Hope Rugo
3:10 PM Personalizing Local-Regional Breast Cancer Therapies – How Have We Advanced Our Strategies to Improve Outcomes in the Clinic Today?
Armando Giuliiano
3:30 PM Therapeutic strategies directed at prevention and management of bone metastases in breast cancer patients. Do these represent additional dilemmas or new opportunities in the clinic today?
Allan Lipton
3:50 PM Brain Metastases – What are the newest and optimal clinical strategies for patients with breast cancer?
Carey Anders
4:05 PM Session 4 Additional Case Studies – The learners select treatment options for several additional interactive patient cases.
Allan Lipton
4:20 PM Session 4 Final Roundtable Panel Discussion
Session 4 Faculty
4:40 PM Final Q & A
Learners and Faculty
4:55 PM CME post test and comparisons of pre-test and post-test answers
Dennis Slamon


D. Craig Allred, MD
Professor and Director of Breast Pathology
Washington University School of Medicine
St. Louis, MO
Hyman B. Muss, MD
Professor of Medicine and Oncology
Director, Geriatric Oncology Program
University of North Carolina
Lineberger Comprehensive Cancer Center
Chapel Hill, NC
Carey K. Anders, MD
Assistant Professor of Medicine
UNC Breast Center
University of North Carolina
Lineberger Comprehensive Cancer Center
Chapel Hill, NC
Joyce S. O’Shaughnessy, MD
Co-Chair of Breast Cancer Research
Chair of Breast Cancer Prevention Research
Baylor-Sammons Cancer Center
Chair of Breast Cancer Research
US Oncology
Dallas, TX
Harold J. Burstein, MD, PhD
Professor of Medicine
Harvard Medical School
Dana-Farber Cancer Institute
Boston, MA
Mark Pegram, MD
Professor of Medicine and Oncology
Director, Breast Cancer Program
University of Miami Cancer Center
Miami, FL
Lisa A. Carey, MD (Co-Chair)
Medical Director
UNC Breast Center
University of North Carolina
Lineberger Comprehensive Cancer Center
Chapel Hill, NC
Edith A. Perez, MD
Professor of Medicine
Director, Breast Cancer Program
Division of Hematology/Oncology
Director, Cancer Clinical Study Unit
Mayo Clinic
Jacksonville, FL
Maura N. Dickler, MD
Associate Attending Physician
Breast Cancer Medicine Service
Memorial Sloan-Kettering Cancer Center
New York, NY
Lajos Pusztai, MD, DPhil
Professor of Medicine
Department of Breast Medical Oncology
The University of Texas M. D. Anderson Cancer Center
Houston, TX
Judy E. Garber, MD, MPH
Director, Cancer Risk and Prevention Program
Associate Professor of Medicine, Harvard Medical School
Dana-Farber Cancer Institute
Boston, MA
Andrea L. Richardson, MD, PhD
Assistant Professor
Department of Pathology
Harvard Medical School
Active Staff and Associate Physician
Surgical Pathology
Brigham And Women’s Hospital
Boston, MA
Armando E. Giuliani, MD
Chief of Science and Medicine
John Wayne Cancer Institute
Santa Monica, CA
Hope Rugo, MD
Clinical Professor
Department of Hematology/Oncology
Director, Breast Oncology Clinical Trials Program
UCSF Helen Diller Comprehensive Cancer Center
San Francisco, CA
Paul E. Goss, FRCP, MB, BCh, PhD
Professor, Department of Medicine
Harvard Medical School
Director, Breast Cancer Research
MGH Cancer Center
Massachusetts General Hospital
Boston, MA
Dennis J. Slamon, MD, PhD (Co-Chair)
Chief, Division of Hematology-Oncology
Professor and Executive Vice Chair, Department of Medicine
Director for Clinical Research, Jonsson Comprehensive Cancer Center
Director, Revlon/UCLA Women’s Health Research
and Cancer Research Programs
University of California at Los Angeles School of Medicine
Los Angeles, California
Allan Lipton, MD
Professor of Medicine and Oncology
M. S. Hershey Medical Center
The Pennsylvania State University
Hershey, PA

“port sisters”

December 27, 2010

Dear all,

I just posted on the TNBC Foundation message board about my daughter’s port in a thread called local recurrence
Her port jogged my memory about a story from 5 years ago…
My daughter and I, the summer after she completed all her surgery and treatment, spent a weekend, just the two of us, in Santa Fe, NM. We stayed at a hotel that had a pool and my daughter wanted to show me that she could swim…she did and it was a thrill to see her do so. Then we were standing in the pool, on the side, talking and another woman came in the pool who was, I would guess in her late 20’s. My daughter is very shy but excused herself and swam over to the woman and the next thing I knew they were talking for about 20 minutes.
She came back with tears in her eyes. “What happened, sweetheart?”…”Daddy, I saw her port and I just wanted to talk to her…it was like we were “port sisters” and she had breast cancer, too, and she is 28 (my daughter was 37, at the time, but 28 seemed so young to her, and it is, but to me, my daughter was very young as well). What is going on, Daddy?” We talked a lot that weekend and I also saw, first hand, what surgical menopause on top of the menopause caused by chemo did to her. She had brought the wrong strength of estrogen patch by mistake and one minute she was sweating profusely and the next she was freezing. It broke my heart to see her suffer so and on top of that was the knowledge that her ‘risk-reducing’ gynecologic surgeries would make it impossible for her to have a child naturally. It is still an cloud that hangs over us, and is a subject we rarely talk about, but it is always there.
It was a very important weekend for us. She lives in NY and I in California and while I went to all her infusions, I did not see her that often post-treatment and it was very good to get together so we could talk. She was able to share many of her innermost thoughts and it was very painful for both of us to absorb the words, but it was good for her to get her feelings out and it helped me to understand what she and others, I have spoken to since, go through.
Being diagnosed with cancer, having surgery, treatments, losing your hair, chemo-brain, fear of recurrence all take a physical toll but the psychological toll is just as, if not more, important at times. At least it was for her and seeing her “port sister” in the pool reinforced, somehow, that she is not alone. She reached out to the young woman in a very special way and she felt she had helped her and somehow, talking to the woman, helped my daughter as well. My daughter chooses not to post but, at times gets very involved with women at her school with breast cancer. At least on Long Island I am convinced there is an environmental component to all of this. The number of young colleagues of hers who have had breast cancer is simply astounding to me.
It is now six years since my daughter was diagnosed with triple-negative breast cancer and since we both found out that we carry the BRCA1 mutation. We have been told that the five year mark of NED is significant and hopefully the cancer is behind her but the port scar remains as do other psychological scars for her. I feel that each year she is making important progress in getting healthier but as she told me some months ago “Daddy, I will never be the same.”  But, I feel she is infinitely better, now, than that summer. For her, time, exercise and yoga have helped.

She is here, she is fit and she is working productively as a guidance counselor in a large public middle school. Many other ‘port sisters’ are doing the same. There is a very special bond to all of this and I admire my daughter and so many women who live their lives, as best they can, and make an effort “to try and find the beauty in each day.”

wishing you all as good a 2011 as you can have.

and for those of you actively “fighting the fight” my heart and prayers are with you,


did you think your genes were your own?

November 1, 2010

And here you thought your genes and any mutations you might have were yours—-

Well, of course they are yours but the exclusive right to test for them has been, for many years, under existing U.S. government patent policy has been given to various firms who have made hundreds of millions of dollars testing for gene mutations. One such example are the BRCA1/2 gene mutations. I, unfortunately carry the BRCA1+ mutation and passed it along to my daughter who had, based on that mutation, an 85% chance of developing breast cancer in her lifetime. Well, she didn’t have to wait a lifetime, she was diagnosed with triple-negative breast cancer (TNBC) at the age of 36. It seems that 80% of the time a BRCA1+ woman has breast cancer she has TNBC. The converse is not true. Most with with TNBC are not BRCA1+ but as I have blogged previously a recent study showed that perhaps 20% of women with TNBC are BRCA+…and the only way to find out if you are is to test and that is what this blog is about…The test.

Back in the 1990’s after Dr. Mary-Claire King first identified and named the BRCA1 gene mutation a race ensued to clone that gene and have a lab test be available to identify the mutation. Myriad Lab’s in Salt Lake City were awarded a patent to have the exclusive right in this country to test for the BRCA mutations. It seems that about 1 out of 40 Ashkenazi Jews carry the mutation and since there seem to be only three alleles Myriad developed what they call an “Ashkenazi Founder’s Mutation” which my daughter used when she tested in 2004. If I remember correctly this test cost about $450. About 1 out of 300-400 folks in the general population are BRCA+ and to find out if they are than all the BRCA alleles are tested and that test at the time was about $3200…

Basically, because Myriad had the monopoly on BRCA testing they could charge what they wanted creating a situation where many thousands of women who did not have good insurance coverage were unable to test and obtain the crucial knowledge of whether they were BRCA+ or not. This knowledge, because of the above breast cancer risk is important but equally important, in my mind, is the risk of ovarian cancer which is about 25% lifetime in a BRCA2+ woman and 45% in a BRCA1+ woman…and the risk doesn’t end with the woman…If a woman tests BRCA+ she got it from one of her parents so if they are still alive it would be good for one of them to test…and the parent who tests positive possibly has other children, siblings, nieces, nephews etc. who may be positive…and of course the woman who tests positive has a 50% chance of passing the BRCA mutation on to her kids…so many many lives are involved and once the allele is known in the family the less expensive $450 test can be used but you can see that the testing, in one large family, can easily run into the many thousands of dollars.

In addition, I have been told, that in past years, that scientists who were doing research studies that would hopefully help advance our BRCA understanding also had to, often, pay high costs to have testing done. So much so that certain studies were not undertaken.

In Europe the courts there gave Myriad a hard time with some of their patents…basically saying that a gene mutation was something that occurred in nature and was part of a person’s biological make-up and no company should have the right to test exclusively for something that occurs in nature.

So, with this as a background, last year the ACLU successfully sued Myriad..

From this article May 13, 2009
By Turna Ray

“Invoking the First Amendment, a collective of breast cancer and women’s health groups, individual breast cancer patients, and scientific associations representing approximately 150,000 researchers this week challenged the legality and validity of Myriad Genetics’ patents for BRCA1 and BRCA2 gene mutations.
The lawsuit, filed in the New York Southern District Court by the American Civil Liberties Union and the Public Patent Foundation at Benjamin N. Cardozo School of Law, will take on the US Patent and Trademark Office, Myriad Genetics, and the University of Utah Research Foundation.
In addition to several individual women patients and researchers, plaintiffs in the case include: the Association for Molecular Pathology; the American College of Medical Genetics; the American Society for Clinical Pathology; the College of American Pathologists; Breast Cancer Action; and the Boston Women’s Health Book Collective.
According to the ACLU, this is the first time a group has challenged the patentability of genes in the US.”

Myriad is appealing this decision but a few days ago an extraordinary “friend of the court brief” was filed by the U.S. Department of Justice. In essence the DOJ acknowledges that Myriad had patent protection but it is saying that our current patent policy that has granted monopolistic rights to Myriad and to other firms to test for other genes is wrong. Basically they are saying that something that occurs naturally is not patentable.

I posted on the TNBC Foundation message board the following-

I was delighted to read the following article a few days in the NY Times-I feel this article is really important.

U.S. Says Genes Should Not Be Eligible for Patents
Published: October 29, 2010

Reversing a longstanding policy, the federal government said on Friday that human and other genes should not be eligible for patents because they are part of nature. The new position could have a huge impact on medicine and on the biotechnology industry.

The new position was declared in a friend-of-the-court brief filed by the Department of Justice late Friday in a case involving two human genes linked to breast and ovarian cancer.
“We acknowledge that this conclusion is contrary to the longstanding practice of the Patent and Trademark Office, as well as the practice of the National Institutes of Health and other government agencies that have in the past sought and obtained patents for isolated genomic DNA,” the brief said.


It seems, as reported by Mr. Pollack, that the U.S. Patent office has not embraced the Department of Justice’s stance, but hopefully the DOJ’s views will change the landscape. I have written for many years now on the unfairness, in my view, of Myriad’s monopoly position on testing for the BRCA mutation. I am a BRCA1+ and my daughter inherited the mutation from me.

Myriad recently lost a suit brought by the ACLU breaking their monopoly position and responded by appealing the lawsuit and I think raising their price for the full panel test from about $3300 to $3800…and just when you thought large companies didn’t have a heart..huh? In my opinion, if Myriad’s stranglehold is broken the cost of testing will fall to about a third of what it is now, putting the cost more within the reach of many women who do not have insurance or whose insurance companies refuse to pay, for a variety of reasons. I have been helping a family who had insurance thru one of the states and they called Myriad, at my suggestion, to see if Myriad would work with that states’s Medicaid-like plan. Myriad said they wouldn’t and the woman was not able to get tested, at that time.

The DOJ friend-of-the-court brief was filed in relationship to the BRCA case I referred to above but the implications are enormous for all genes and the venture capital firms and others who have scooped up the rights to test for 20 % of our genes (according to the article) as their own intellectual property. “Hey, that’s my gene/ gene mutation,” you may think. “No it’s not,” says our patent office. The patents to test for a specific mutation such as BRCA and countless others have been given to various firms and those patents enable firms to charge exorbitant prices to test for a gene’s presence that may cause certain diseases or a mutated copy of that gene.

It is my understanding that many BRCA research studies, in the past, have been held back because of Myriad’s high costs. However, recently, Myriad did cooperate with an important research study presented by Dr. Ana Maria Gonzalez about the prevalence (about 20% in this study) of the BRCA mutation in previously untested women with triple negative breast cancer. I would imagine that is the case with other gene mutations, as well.

I hope that the DOJ position becomes ‘practice changing’ as far as the U.S. Patent office is concerned and that the current policy regarding patents on genes will be changed. I hope that the DOJ action will be an important first step.

all the best,

Triple-Negative Breast Cancer in the Bahamas

October 12, 2010

By: Steve K.

Some months ago a young reporter, Candia Dames, at The Nassau Guardian, the island’s oldest (1844) and most respected newspaper, reported on the fact that scientists had discovered an African BRCA Founder’s Mutation much like the Ashkenazi BRCA Founder’s Mutation I have. I wrote Candia and arranged to meet her July 29th at their headquarters in Nassau. I brought her a copy of the book Positive Results that my daughter and I had written passages in. 

I told her that I felt it is important to get the word out that men can inherit the BRCA mutation and pass it on to their children. Turns out Candia lost her mother to breast cancer when she was 24. We had an extraordinarily intense 30 minute meeting and she “gets it.” She had told me in advance, that her time with me would be very short because she was leaving for two week holiday that night. Surprisingly, as we finished talking, she asked me “how would you like to be on TV tonight?”

I agreed and literally 5 minutes later a cameraman came out and shot Candia interviewing me. I think the interview was about 20 minutes long (I think they cut it to 5 minutes-I wasn’t able to view hotel did not carry the channel…unfortunately, to date, I have been unable to get a copy of the interview. I will put it on the blog if I ever get one). I then introduced Candia to my friend who is very ill and it turns out his son was very much in love with her sister. Nassau is a small place..Lots of cousins marrying cousins over the centuries just like Ashkenazi Jews. Good breeding grounds for BRCA.

I am attaching the article Candia crafted in a remarkably short period of time…There is a minor error at the end, third paragraph from the end  misquoting me-I had said that fathers can pass the mutation on to their sons and/or daughters who in turn can pass it along to their children. But, overall I think she did an excellent job..and folks got the message that dads can carry this mutation and pass it along.

The next morning I was having breakfast at the hotel and I had a copy of the paper on the table..A waitress came over to me and said “hey, that’s you, right?” and she called her friend over who said “I saw you on TV last night and I am glad I did because I am going to speak to my Daddy…His mother and two aunts and Grammy all had breast cancer early and they all gone..keep talkin’, man..this is important..for my daddy and maybe, me”

The waitress said it so genuinely…even if she is the only one to take action, I feel it was worth the effort…My advocacy work, in this country, feels so right and it was so heartening to have a reporter think the information was important enough to put it TV and on page one of the newspaper. But my satisfaction at getting the information out was tempered drastically by the following incident-

Fast forward a couple of months to last weekend at the ASCO Breast Symposium in National Harbor, MD. I was walking through the exhibit hall and I hear someone yelling “hey, Steve”…I turn and it is my friend’s surgeon from the Bahamas. He is an exceptionally nice young man…my guess is late 30’s…hey, that’s young to me…I will be 67 in a few months. I told him that I wanted to go back to the Bahamas and raise awareness and try to get more women counseled and tested for the new BRCA1 African mutation…”no, please don’t do that..” “Why?” “If a Bahamian insurance company finds out that a young woman has the BRCA1 mutation they will drop her coverage and her family, too…as a “pre-existing condition.”

In 2008, our Congress passed the GINA law which helps protect folks here with their health insurance..not so for life insurance…but at least for health there are some protections…albeit not perfect. But no such law exists in the Bahamas and if a young woman wants to test and the insurance company knows her status she can forget about getting her surgery paid for. Of course all genetic mutations are pre-existing…and the insurance companies use the fact that they are to deny women coverage.

The doctor told me that he treats his patients “as if they are positive”…”wow, what if they are not positive?”…”yes, I know, but what is the alternative?” I am afraid I did not have an answer for him. All I know is that teenagers and women in their 20’s, 30’s are being diagnosed with aggressive triple-negative-breast-cancer and it simply breaks my heart that these young women can’t test…can’t have prophylactic risk-reducing breast or gynecologic surgeries that will be covered by insurance..Lives are being lost because of these Neanderthal insurance policies..I think we can assume that there are no previvors doing risk-reducing surgeries and getting the procedures paid for as is the case in the U.S. A Bahamian BRCA1+ woman is denied coverage if the insurance company knows she has the mutation. If the insurance company doesn’t know the woman has to wait until she has breast or ovarian cancer until she has insurance coverage. There is no way a woman, at high-risk, in the Bahamas can try to test and then protect herself if she wants the surgery covered by insurance.  I would say that 99% of the women in the Bahamas would not be able to pay for the surgeries on their own. My daughter faced odds that meant that she faced an approx. 85% risk of getting breast cancer in her lifetime and a separate 45% risk of getting ovarian cancer in their lifetime.  These odds are tragically sad and the policy of “pre-existing” condition denial in the Bahamas is truly pathetic and unjust in my view.

As suggested by my dear friend’s surgeon, I am going to try to join the small, but growing, effort for new legislation in the Bahamas. It seems, according to the surgeon, that the Bahamian insurance companies take things to another pernicious level by not only denying the woman but also refusing coverage for her family. Hopefully, over the next several years we can get the laws to change. In the meantime, my heart aches. So, the waitress, above who wanted her daddy to test better tell him to do it surreptitiously..And if he and she, G-d forbid, have the BRCA1 mutation, what do they do with the information? Increase surveillance, at a high-risk clinic, would be the answer in the U.S. but what about the Bahamas? As I think about I guess it is important for the BRCA information to be made public in the Bahamas. On a practical basis, for sure there are Bahamian legislators who have been touched by early-onset breast or ovarian cancer in their families and they will, most likely, be the ones to champion the legislation. At least that is my dream and I am going to do my best to have the legislation changed.

As an aside, what is obvious to me, out of all this is that contrary to many racist beliefs held in this country that white is superior to black or brown the Human Genome Project of a few years ago has shown that we are all people, almost identical, most of the times, DNA-wise. Eighty percent of BRCA1+ women in the U.S. who have breast cancer have triple-negative breast cancer and the overwhelming majority of Bahamian women who carry the African BRCA1 founders mutation, I am told, also have triple-negative breast cancer. Folks with different histories winding up with a BRCA1 mutation and triple-negative breast cancer. We are one.

all the best,

p.s. there is a book that came out about a week ago Previvors, Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port that I have not read yet. It looks very interesting and I will post on the board or here when I do.

Does standard of care for women with TNBC have to be re-examined?

September 30, 2010

By: Steve K.

I have been actively posting on the TNBC Foundation website for the last 18 months, and I can tell you, that often, a woman has come on the board and said e.g. “I am 36 years old with triple-negative-breast-cancer and had a lumpectomy, followed by chemotherapy and six and a half weeks of radiotherapy.” There is, all too often, no mention of seeing a Certified Genetic Counselor or getting tested for the BRCA mutation. Six years ago, my daughter was such a woman. Although she was diagnosed with breast cancer at a major cancer center her Breast Surgical Oncologist (BSO) made no mention of genetic counseling or the BRCA mutation even though my daughter met all of the hospital’s guidelines for genetic counseling/testing as she was 36 with TNBC, Ashkenazi and had a profound family history of early-onset breast/ovarian cancer on her dad’s (me) side.

As was suggested to her by the BSO she had a quadrantectomy. Basically the quadrant of her breast below her left nipple was removed. It was further recommended that she have four months of chemotherapy followed by 6.5 weeks of radiation therapy. At the time I was on the board of a cancer center and I spoke to the CEO about my daughter’s experience. He strongly suggested that she get tested for the BRCA mutation. She tested BRCA1+ and I tested positive as well. At my daughter’s request, soon after she finished her chemotherapy she asked me to try to find out what significance the BRCA mutation had for her. Five BRCA experts told me the same thing….my daughter was at a high risk for a new primary in her contralateral breast or a recurrence and that she also had a very high risk of getting ovarian cancer.

Armed with this knowledge, and having experienced, what was for her, the devastation of chemotherapy she decided to have risk reducing surgeries. She went back to the same Breast Surgical Oncologist to ask her about having PBMs because of her BRCA mutation the BSO responded “of course, my dear..I understand” and she performed the surgeries. Well, the quadrantectomy compromised the cosmetic result of her PBM.  They had to stretch her skin on her left side and the result has been some puckering.

If everything had been explained to more daughter, originally, I think she may have chosen to have bi-lateral mastectomies as her first choice. To be honest, she may have still opted for a quadrantectomy and perhaps it was the experience of the chemo that pushed her to more risk-reducing surgeries but she was entitled to the information in our view. Turns out that her BSO was a ‘breast conservationist’ who did not believe in mastectomies. Of course she was entitled to her view but she also, in our view, should have presented all the facts to my daughter.

A study, published in 2009, by Dr. Steve Narod’s group at the University of Toronto recommended that all women, even those with no family history of breast/ovarian cancer, under the age of 40 who had triple-negative-breast cancer should be counseled regarding the BRCA mutation with a suggestion to test.  It is also my personal view that every woman with TNBC who has a family history of breast/ovarian history on either parent’s side should receive genetic counseling and possibly test for the BRCA mutation, regardless of how old she is at age of diagnosis
of TNBC.

Here is the conclusion from that study-
The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. BMC Cancer. 2009 Mar 19;9:86. Young SR, etal., Women’s College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada.

CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer.

It seems that 80% of the time when a BRCA1+ woman has breast cancer she has triple-negative-breast-cancer. The converse is not true. 80% of women with TNBC are not BRCA1+ but the link seems to be profound.

The other extremely important benefit of women testing for the BRCA mutation is that, hopefully, the information of a positive result is shared with other family members. The information is extremely important to the women in the family, but also to the men, who may not realize that they are at increased risks for prostate, breast and pancreatic cancers, and perhaps melanoma.  Increased surveillance may save lives. The BRCA+ male, if properly counseled, will now have the important knowledge that he can pass the mutation on to his children, as I did to my daughter.

In all of this, based on a recent large study, perhaps, what is potentially the most life-saving information is the fact that BRCA+ women are at high risk for ovarian cancer and if they have risk-reducing surgeries they drastically reduce their risk of ovarian and breast cancer (if surgeries are done pre-menopausally) but also may benefit markedly in life expectancy.

Association of Risk-Reducing Surgery in BRCA1 or BRCA2 Mutation Carriers With Cancer Risk and Mortality

Susan M. Domchek; et al.  JAMA. 2010;304(9):967-975.

Conclusions  Among a cohort of women with BRCA1 and BRCA2 mutations, the use of risk-reducing mastectomy was associated with a lower risk of breast cancer; risk-reducing salpingo-oophorectomy was associated with a lower risk of ovarian cancer, first diagnosis of breast cancer, all-cause mortality, breast cancer–specific mortality, and ovarian cancer–specific mortality.

Summing up, it is my prayer that more ob/gyns, internists, etc. inform their patients, when appropriate, that genetic counseling should be sought and the breast conservationists should present the whole picture not just their agenda.

A woman told me recently that she was told several years ago…when she was diagnosed with TNBC and asked her physician about mastectomies…His reply, ”that’s unnecessary…why would you want to lose your breasts?” (what woman does?). Turns out she was BRCA1+ and her cancer recurred and she is now in trouble. “Steve, if I knew I was BRCA1+ when this all started I definitely would have had the more extensive risk-reducing surgeries.”

I am not recommending that any woman have any surgery of any kind…I am not a medical professional but I think “standard of care” should include genetic counseling/testing…let women with TNBC hear the story and if they test positive let them decide with the advice of their Breast Medical Oncologist and/or Breast Surgical Oncologist if anything more extensive than a lumpectomy should be considered. Also, a BRCA+ woman should see a gynecologic oncologist to talk about ovarian cancer. In all of this it is essential, in my unprofessional view, that women who are BRCA+ see professionals who are BRCA savvy. They may be tough to find,
but they are out there.

The sad fact is that all too many physicians, in this country, still

-have never heard of the BRCA mutation.
-still are of the mistaken belief that a predisposition to breast/ovarian cancer can only be passed from mother to daughter.
-still tell women that cancer “doesn’t hurt”

I believe that standard of care for a woman with TNBC should in many, many instances, especially with a woman with early onset cancer, include a recommendation to see a Certified Genetic Counselor with a view towards testing.

We all need to become our own advocates…to do research and better understand…That is why I love the TNBC Foundation website. It is there for all of us to learn and support each other.


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