Our Voices: A Blog by Links, Callers and Volunteers

The Sephardi Question

We know that 1 in 40 Ashkenazi Jews carry a BRCA gene mutation that increases the risk of developing breast cancer by approximately 80% and ovarian cancer by approximately 40%. However, approximately 25% of the world Jewish population is not Ashkenazi, and begs the question: What does this statistic mean for the Sephardi population?

Recent studies on the subject seem to indicate that it means more than the scientific community originally thought. In the past decade, stories of young Hispanic women developing the kind of aggressive breast cancer associated with a BRCA gene mutation commonly found in Ashkenazi women popped up around the Southwestern United States. It turned out that these women were actually descendants of Sephardi Jews (defined in this instance as Jews with Spanish and Portuguese ancestry, but the term is often used more broadly to include Jews of Middle Eastern decent as well), who were exiled to the United States and Mexico during the Spanish Inquisition. This story led genetic counselors around the country and in Israel to begin seeking answers to the question: Are Sephardi Jews also at high risk of developing BRCA gene mutations?

There isn’t a concrete answer to this question yet.  There is a limited pool of Sephardi women sampled in scientific studies on BRCA gene mutations. However, a study on the genetics of different Jewish geographic groups conducted by Dr. Harry Ostrer, a professor of genetics at the Albert Einstein College of Medicine, has demonstrated that all Jews are likely genetically related.  Additionally, studies conducted in Israel have revealed two unique mutations in the BRCA genes that are found only in Sephardim, one of which was found in women who immigrated to Israel from Iraq, Yemen, Iran and Afghanistan, and the other was found in a study conducted by Dr. Michael Sagi on ‘pure’ Sephardi Jewish women from Spain and Portugal. Out of the 177 total women sampled in Dr. Sagi’s study, approximately 1 out of every 30 was found to have a mutation in the BRCA gene.

This emerging research suggests that Sephardi women may be at high risk of developing hereditary breast cancer and ovarian cancer, but more comprehensive research is needed. We will continue to follow this research and keep the Sharsheret community informed of any new developments. If you have questions regarding your personal family history or risk of hereditary cancer, click here to contact our genetic counselor Danielle Singer.

Supreme Court Gene Patent Decision: What It Means For You

Last week, the US Supreme Court ruled on a significant gene patenting case.  The issue before the Court was whether or not a company’s patents on the BRCA1 and BRCA2 genes could be upheld. The landmark ruling states that a gene is a naturally occurring product of nature, and therefore cannot be patented. The Supreme Court’s ruling has important implications for clinicians, cancer patients, and individuals who are at higher risk of a BRCA mutation than the average population either by personal or family history. Many say that the Court’s ruling will increase access to genetic testing by eliminating the monopoly on the test, which will thereby reduce the cost of testing significantly and allow for consumer choice.  For many years, the American College of Medical Genetics has asserted that gene patents “stand firmly in the way of good patient care, interfere with informed decision-making by patients, impede training of the next generation of lab professionals and restrict the flow of information that is critical to advancing medical knowledge and better medical care accessible to all.”  Therefore, some anticipate that this decision will better enable appropriate and more affordable testing, particularly for those who are uninsured or underinsured. 
 
Carrie Horton, MS, CGC
Director of Genetic Counseling
West Clinic
 
Brad Somer, MD
Medical Oncology
West Clinic

Supreme Court Rules on Gene Patents

This morning, the Supreme Court rendered its decision in the gene patenting case, holding that “genes and the information they encode are not patent eligible under §101 [of The Patent Act] simply because they have been isolated from the surrounding genetic material.”  The Court noted that Myriad Genetics, the laboratory that currently offers testing for the BRCA1 and BRCA2 mutations found in 1 in 40 Ashkenazi Jews, did not create or alter either the genetic information encoded in the BRCA1 and BCRA2 genes or the genetic structure of the DNA.  Though the Court noted that Myriad found an important and useful gene, it acknowledged that groundbreaking, innovative, or even brilliant discovery does not by itself satisfy the §101 inquiry and is therefore not subject to patent protection.

What does the Court’s decision mean for thousands of women and families at risk of breast or ovarian cancer or considering genetic counseling or testing? 

Call us at Sharsheret or chat live with our staff genetic counselor.  Thousands of women, men, and families reach out to us for support and information about cancer genetics.  We’ll walk you through your options, and connect you to others who have done the same.

Honoring Our Survivors On National Cancer Survivors Day

National Cancer Survivors Day is on Sunday! Survivors in Sharsheret’s National Peer Support Network have shared when they considered themselves survivors.  Read their inspiring words below and join us in honoring all of the incredible women of Sharsheret. We would love to hear from you – tell us when you considered yourself a survivor in the comments section below.  Click here to join our new survivorship program, Thriving Again, and order your free survivorship kit today!

“I can't pinpoint the exact time frame. But I do remember a shift in my outlook - rather than being one of the 70-80% who would experience recurrence within five years, why couldn't I be in the 20-30% who would not? After all, some of us had to be and I needed to be. It is now 3 years and 9 months post- treatment and I am optimistic about my future.” – Leslie, diagnosed with stage 3 ovarian cancer
 
“The day I found the lump.  I knew it was going to be cancer, but I also knew that I was going to fight and survive!” – Linda, diagnosed with stage 2 breast cancer

“I’m never going to be rid of cancer, but around 2 years after my diagnosis I started to feel like a survivor. I’ve always felt like a warrior.” - Diana, diagnosed with advanced breast cancer
 
“The doctor said, ‘You have ovarian cancer’. Then looking at my daughter’s distraught face he added, ‘We’re going to take care of her’.  That was the first time I considered myself a survivor. I felt a sense of relief that I could get on with it – life that is. Many sweet moments since have reinforced that feeling - getting married between chemo three and chemo four, dancing at my children’s weddings, the births of my delicious grandsons, and reading and listening to stories of hope from my ovarian cancer sisters.”
 - Sharon, diagnosed with advanced ovarian cancer

Keeping Company With Anxiety

The holiday of Shavuot celebrates the giving of the Torah to the Jewish people at Mount Sinai.  It is recorded that the people heard thunder and lightning, and clouds and smoke filled the air.  The experience was overbearing to the senses.  The children of Israel shook with fear.  Ever have one of those days?

I imagine that those of you who have heard the words “You are BRCA positive,” or “You have cancer,” or “The cancer has come back,” experienced an overwhelming burden to your senses.  Perhaps you, too, shook with fear.  The ensuing thoughts that recur after hearing these words can be more agonizing than the realities.  We are often overachievers when it comes to imagining worse case scenarios. 

While we can’t stop intrusive thoughts from entering our lives, we can respond to the thoughts in a way that feels calming and empowering.  When an intrusive thought comes my way, I imagine myself putting my arm around it, similar to the way that I would put my arm around someone’s shoulder, and I “say” to the thought: “I knew you were coming.  I was expecting you.  You can hang out, but I have things to do.”  I find the more I welcome the thought, the less it overcomes me.

One woman in Sharsheret’s Embrace group for women living with advanced breast cancer shared, “I know that I feel more anxious when I’m waiting for test results or going to appointments.  Those days I take the anxiety with me.  All the days in between belong to me and the anxiety needs to find someone else to hang out with.”  These wise words can calm the thunder and comfort the soul.

Cousins Evan And Ally Honor The Memory Of Their Grandmother With A Sharsheret B’nai Mitzvah Project

We are going to be running the Baltimore Marathon 5K on October 12th in memory of our grandmother, Ruth Merwitz.  Our "Mom Mom" passed away this past January from Primary Peritoneal Cancer which has symptoms very similar to Ovarian Cancer.  Mom Mom was a very warm and caring person who had a very unique way of making everyone around her feel special.  Everyone loved her because she was such a joy to be around.  She loved to laugh and enjoyed everything about life.  She cared with such kindness and such a big and open heart and so unconditionally.  She was truly an amazing person.  All of us, her 8 grandchildren, thought we were her favorite because of the way she made us feel- so loved, so cared for, so special, so complete. 

Being Jewish was something that was very important to Mom Mom.  We always loved spending time with her having sleepovers, playing games, and going on outings. But we especially loved being with her for the Jewish Holidays.  We do not think we will ever taste matzo ball soup as good as hers!  Mom Mom will forever live in our hearts and we will always remember the special times we spent together.  

Doing things for others is what truly made Mom Mom happy.  To honor the loving person she was, we have decided to support Team Sharsheret for our Bat and Bar Mitzvah projects.  We hope that we can help save lives and prevent other families from ever having to feel the pain of losing someone they love.  Please consider either joining our team on October 12th or supporting us by clicking here to make a donation to Sharsheret in honor of our very special Mom Mom, Ruth Merwitz. 

As she used to always tell us,
we love you to the moon and back!

Ally Merwitz and Evan Feuerman

A Fifth Question

The New York Times recently ran an article by Susan Gubar, “Living With Cancer: The Good Patient Syndrome”, that questioned the importance of being a model patient. When Susan was first diagnosed, she was agreeable, nodding politely when meeting with her doctors. She worried that if she asked too many questions, she would be unintentionally neglected or harmed by her medical team.

One woman in Sharsheret’s Embrace group for women living with advanced cancer noted that each time she went to an oncologist appointment she felt unnoticed by the office staff and her doctor. One day, she went straight to her appointment from a Brit (circumcision). She was dressed up and wearing makeup. The office staff was quite complimentary and paid her a lot of attention. Her oncologist, who typically spoke to her while reading her file, engaged in eye contact and remarked how wonderful she looked. This woman decided that from then on, she would put on some lipstick and go to her appointments well-dressed.  She told the group she felt as if she was now “dating” her oncologist - she wanted to be noticed.

Many women call Sharsheret with questions following a doctor’s appointment or scans – questions that are reasonable to ask their doctor during an appointment. Yet, they are afraid to ask these questions because they don’t want to come across as untrusting. When you have concerns, you may not pick up the phone and call the doctor because you “don’t want to bother them”. You worry about being labeled a “difficult patient”. At the end of the day, it’s your body, it’s your life.  Don’t be afraid to speak up and advocate for yourself because if you don’t, something serious may go unnoticed.

As we prepare for the Passover holiday, we are reminded of how the Jewish people were obedient and compliant for fear of further harm at the hands of the Egyptians. Moses was also worried about his ability to stand up to Pharaoh on behalf of the Jewish people, worried that he would make an already bad situation worse. In reality, it was only when Moses spoke up and advocated for his people that he and the Jews were set free. What would have become of the Jewish people if Moses did not stand up for them? I’m adding this question to the already established Four Questions that will be recited at my Seder as a reminder to empower myself in the pursuit of health and well-being.

New Ovarian Cancer Study Is Released

Many important studies were presented last week at the Society of Gynecologic Oncology (SGO) Annual Meeting on Women’s Cancer in Los Angeles, CA.  Among them were two studies that were covered in multiple media outlets, including the New York Times (click here to read the article).  The first study looked at more than 13,000 women with ovarian cancer and found that women are 30 percent less likely to die of ovarian cancer if they have guideline-recommended treatment.  Yet, nearly two-thirds of those women do not receive it.  Guidelines for ovarian cancer specify types of surgical procedures and chemotherapy, often the need for debulking surgery prior to chemotherapy.  The study found that surgeons who were more experienced in gynecologic oncology surgery, and hospitals that treated more women with ovarian cancer, were more likely to follow the guidelines, which translated to better outcomes for their patients.  The second study looked at the method of delivery of chemotherapy to patients.  Intraperitoneal (IP) chemotherapy, where chemotherapy drugs are pumped directly into the abdomen, utilizes the same chemotherapy agents often administered intravenously. While IP chemotherapy is more toxic, and logistically more complicated than IV chemotherapy, there is clearly a benefit in terms of survival rate.   

For you, the patient, these studies underscore the importance of making sure that you act as your own advocate by asking to be treated by a physician with ovarian cancer expertise and experience who practices according to available guidelines.  For ovarian cancer information and support, please call Sharsheret at 866.474.2774 or e-mail info@sharsheret.org

Ethan Wasserman, MD
Sharsheret Medical Advisory Board Member

THE VIEWS EXPRESSED ON THE BLOG ARE THOSE OF THE INDIVIDUAL USERS AND NOT NECESSARILY THE VIEWS OF SHARSHERET. ALTHOUGH SHARSHERET WILL BE MODERATING ALL MESSAGES POSTED TO THE BLOG, WE DO NOT CONFIRM OR WARRANT THE USEFULNESS, ACCURACY, OR COMPLETENESS OF ANY MESSAGES AND ARE NOT RESPONSIBLE FOR ANY DAMAGE OR LOSS RELATED TO THE ACCURACY OR COMPLETENESS OF THE INFORMATION. SHARSHERET DOES NOT MAKE ANY EXPRESSED OR IMPLIED WARRANTIES WITH REGARD TO INFORMATION OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, OR WARRANTIES OF TITLE OR NON-INFRINGEMENT. IN NO EVENT SHALL THE PROVIDERS BE LIABLE TO YOU OR A THIRD PARTY FOR ANY ACTION, OR FAILURE TO ACT BASED ON RELIANCE ON THE CONTENT POSTED ON THE BLOG. ALL INFORMATION IS PROVIDED WITHOUT ANY WARRANTY OF ANY KIND.

Two Half-Marathons For One Great Cause!

Meet our incredible Team Sharsheret athletes who will be running the NYC Half-Marathon and the Germantown, TN Half-Marathon on Sunday, March 17th.  Click on each athlete’s name to read their stories and find out why they joined Team Sharsheret!

 

TEAM SHARSHERET
NYC HALF-MARATHON

Dana Adler
Cynthia Bernstein
Tamar Blumenthal
Catherine Brown
Idan Elkon
Benito Esquenazi
Aline Friedman
Ed Joyce & Kayla Joyce
Yoni Lazarus
Deb Leipzig
Jennifer Miller
Rabbi Steven Moskowitz
Naomi Robbins
Eitan Prince
Bracha Rutner
Lisa Silvershein
Azadeh Stark
Carrie Okay Veingrad
Renee Wietschner
Marc Waldman
Hillary Wasserman

TEAM SHARSHERET
GERMANTOWN, TN HALF-MARATHON

Aileen Cooper
Daniel Gofman
Shmuel Gordon
Abe Raichman
Betzalel Rosenwasser
Lee Schwartz
Shayna Somer
Shmuel Somer
Moshe Weiser
Ben Younger

 

Finding Humor

The holiday of Purim celebrates the overcoming of Haman’s plot to exterminate the Jews - a pretty serious and scary scenario.  And yet, there is an inherent silliness in the celebration of Purim.  We dress up in costumes, we intentionally shout out and interrupt the reader of the megillah, and we overindulge in candy, sweets, and wine.  We invert the frightful reality of the Jews as the target of an evil plot and find our humor.

The definitive research into the potential health benefits of laughter haven’t been done yet.  However, there is a tremendous amount of research that suggests that humor and a good attitude do impact the healing process.  Some studies have shown that laughter affects the way our bodies function and we do change physiologically when we laugh. There is also some research that suggests that laughter improves mental functions such as alertness, memory, and creativity.  It can also ease anxiety and fear, relieve stress, improve our moods, and enhance resilience and acceptance.

I feel encouraged and inspired that many women calling Sharsheret have found humor as a coping strategy when navigating the very frightening world of cancer.  One woman shared the following humorous anecdote:

“Someone told me that the best way to achieve inner peace was to finish things I had started.  Today I finished two bags of potato chips, a lemon pie, a fifth of Jack Daniels, and a small box of chocolate candy.  I feel better already.”

Laughter is a natural intervention that can be accessed any time.  It doesn’t cost anything. There is no need to haggle with insurance companies for coverage.  Laughter relies on the natural physiological process to help you manage the emotional side effects of living with cancer.  My wish for all of you is that you find humor, and that in turn, that humor will help you tolerate the difficulties, overcome the unexpected, and free your spirit.  Happy Purim!

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