ovarian cancer

True Endurance

On November 2nd, 2014 I will be competing in the New York City Marathon. But this blog is not about me; it is much bigger.

Since taking on the challenge to race in the New York City Marathon for Team Sharsheret, I have received the utmost support from all over. Of course, my family and close friends have done an amazing job to encourage me. Be that as it may, I have been most humbled when less familiar hands have reached out: previous bosses, a former landlord who is now halfway around the world, and perfect strangers at my local dog park - who knows, maybe even you will after reading this!

This type of experience has illustrated just how widespread the effects of breast cancer and ovarian cancer is in my life. Many people along the way have told me that I am an inspiration to them; however, for me, it is quite the inverse.

In one such instance, the mother of one of my best friends reached out to me after she watched a marathon update video I had posted earlier that day. What she had to say blew my mind. “I had cancer and I had a choice on how I was going to deal with this disease. I did what I had to do…. You don’t have to do this in order to survive and that is what makes you so amazing!”

Wow! She reminds me what true endurance is. Whenever I think about walking a mile in the shoes of someone like her, 26.2 miles doesn’t seem so tough.

Please comment and let me know what you would like me to write about next entry! If you are feeling inspired, you can also visit my donation page here: http://sharsheret.donorpages.com/NYCTCSMarathon2014/DylanMax/

My Children and Hereditary Breast and Ovarian Cancer

A diagnosis of ovarian cancer earlier this year was a life changing event.  Fear, anxiety, sadness, body image issues, and short and long term effects of chemotherapy, only begin to touch on the myriad of worries which confronted me.  Still, one of the most difficult things to deal with has been the not-so-surprising presence of a genetic predisposition (due to a BRCA2 mutation) to cancer.   The thought that each of my four young adult children had a 50% chance of inheriting this gene was almost more than I could bear.  

How does one deal with the guilt?  How does one speak with her children about such an inheritance?  Does one inform female and male children at the same time and in the same fashion?  Does one give married and still unmarried children the same details?  Does one advise her children to be tested as soon as possible?  Will a positive BRCA2 test with all its implications interfere with a developing or even presently stable relationship?  Can one avoid adding pressure to the lives of adult children when discussing the issues of marrying early and having babies as quickly as possible so that they may take advantage of risk reduction therapy at a young enough age to reduce the chances of ovarian cancer and breast cancer?

There are no standard answers to any of these questions; indeed the approach will surely differ for each family based on the individuals and the family dynamics.   Several interactions have guided my thinking regarding these issues. 

Firstly, I cannot say enough positive things about resources available through Sharsheret.  Sharsheret’s genetic counselor made herself available to me within a few minutes of my initial call and kept closely in touch.  She pointed out several important concepts to me, including the ideas that: 1) I am not the only source of information for my children; 2) Each individual on the receiving end of the information must decide for him or herself how to proceed; 3) All of the information does not have to be discussed in one sitting– indeed the important thing is to keep the lines of communication open; 4) Difficult as this discussion must be, knowledge is empowering as it allows positive actions to be taken.

Secondly, a wise and spiritual friend focused my attention on the positive implications associated with this difficult discussion, namely: truth, trust, potential for decreasing uncertainty, and potential for risk reduction actions.
Finally, one of my children, aware of the pending issue, asked me straight out about the results of my testing, before I was ready to have the big discussion.  When I made the result known to her and spoke with her about some of my concerns, I was amazed at the strength she imparted to me by her personal views. 

I have yet to work through all the details, but I have gained understanding through learning as much as possible about the implications of the BRCA gene mutation, and through speaking with wise and trusted professionals and friends.

Ovarian Cancer: Let’s Talk About It

Inspiring, brave, passionate.  All words one can use to describe the women and caregivers I met at the Ovarian Cancer National Alliance Conference in Washington, D.C. this July.  One such woman is Carey, a Sharsheret peer supporter and founder of Teal Toes, an ovarian cancer organization that encourages groups to paint their nails teal to spread awareness about ovarian cancer. Women like Carey know that the first step in the fight against ovarian cancer is a simple one: talk about it. Over 20,000 women are diagnosed with ovarian cancer each year, according to the National Cancer Institute, and many cases are not diagnosed until later stages of the disease.  Regular screenings for ovarian cancer are uncommon, and the signs and symptoms of ovarian cancer, such as back pain, bloating, and feeling full too quickly after eating, can be often overlooked.

Individually, knowing the signs and symptoms will allow us to be proactive about our health.  As a group, discussing ovarian cancer on major public health and advocacy stages can lead to earlier detection and treatment advances.  1 in 40 Ashkenazi Jews carries a BRCA mutation, and women with a BRCA gene mutation have 40% – 60% lifetime risk of developing ovarian cancer, making discussions about ovarian cancer even more important in our community. 

As the summer begins to wind down, we are busy preparing for National Ovarian Cancer Awareness Month in September.  September is the perfect time for you and your family to have conversations about your risk, and to raise awareness.  Click here to order Sharsheret’s free educational resources about ovarian cancer to share with others, or call 866.474.2774 to learn more about our Ovarian Cancer Program and ways to get involved at Sharsheret.

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.

Reflections For The New Year

I remember sitting in the synagogue on Rosh Hashanah and Yom Kippur as a child, watching the clock and counting how many pages of prayer were left in the service. I wanted to run out when the Rabbi began speaking. And the silent prayer – well, that just went on forever. “Oh my goodness, will this ever end?”

As an adult, I now appreciate the High Holiday services. I love the melodies that unite the congregation into one harmonious voice. The Rabbi’s message gives me much to contemplate. That silent prayer, though, is still a challenge. Occasionally, my private thoughts are comforting and invigorating but sometimes, the silence is too much to bear. Either way, it is in this stillness of my mind that I have learned the most about myself.

My true journey takes place in the quietude. All the events that happen in my life are just the junctures - first steps, graduations, jobs, weddings, children, or illness – are all merely points in time. It is in the quiet reflection that I ascribe the meaning.

When facing ovarian cancer or breast cancer, life may seem to swirl around you – doctors’ visits, scans, treatments, and follow-ups, while maintaining jobs and families. These things impact your family life, your financial well-being, and your emotional and physical health. I suspect that at one time or another you may have thought, “Oh my goodness, will this ever end?”  As Sharsheret Peer Supporter Beverly Levy shared in her National Ovarian Cancer Awareness Month blog post, “I’ve decided cancer is like Whack-A-Mole, the arcade game where you whack a little critter over the head and another one pops up where you don’t expect it.  But just like in the arcade, there are good times along the way.  You don’t know how many moles you will have to clobber, how long it will take, and how you’ll do it – but you will. I can’t enjoy today if all I can think about is tomorrow and I can’t do anything about it anyway so head up, smile on face, and enjoy all the great things life has to offer.”

In this holiday season, I encourage you to take advantage of the stillness, whether in prayer, meditation, or just finding a quiet time to reflect on how this past year has unfolded, what meaning it has held for you, and what your hopes, dreams, and aspirations are as you move forward.  All of us at Sharsheret hope that you will find strength, renewal, and meaning as you celebrate this upcoming New Year.

Celebrating National Ovarian Cancer Awareness Month

Cancer is huge (enormous, actually). It’s an adventure I wish I never had to take, but I’m living it in real time. Slowly, slowly, reality has set in. I have a chronic illness - ovarian cancer - that began in my fallopian tubes. I’ll be on and off chemo for the rest of my life. There. I said it. It’s my story. I own it.

Everyone has “stuff” and this is mine. I’m certainly not alone in this adventure. My family and friends have provided incredible support. Sharsheret, with its caring clinical staff, helpful website, and monthly group calls, reminds me that there are a lot of women out there just like me – taking this adventure, sharing stories, and providing comfort when some of us need it the most. I know that I can be connected to a peer supporter if I want one and I’ve volunteered to be one for other women. We’re all in this great big club that we’d rather not belong to, but we got “recruited” with the words, “You’ve got cancer.”

I’m doing all I can to find everything positive in this adventure. Laughing at what cancer offers up is actually therapeutic. Picking out hats, taking long naps, appreciating the kindness of friends and medical staff, figuring out how to make it look like I really do have eyebrows, and stuffing down hamburgers while justifying it because I’m anemic.  All part of the journey. 

I’ve decided cancer is like Whack-A-Mole, the arcade game where you whack a little critter over the head and another one pops up where you don’t expect it. Having a hysterectomy nearly two years ago was like putting the coin in the slot to start the game. The calliope music started and I was full of hope and optimism. I’m gonna beat this thing! Just like those little cynically grinning animals in the game, my cancer came out of nowhere. Whacked that first “critter” with a whole lot of chemo. Just like the game, another “mole” popped up – this time, a little one on my liver. Tried to whack it with chemo – oops – missed. Surgery for this guy – then we’ll whack it with more chemo.  Whew – this game is exhausting. 

But just like in the arcade, there are good times along the way. I’ve had stretches of great times – feeling wonderful and staying really active (more than ever and appreciating it more). What really matters is the present. How do I feel today? Great? Pretty good? Not lousy? Then I remind myself to enjoy the moment. You don’t know how many moles you will have to clobber, how long it will take, and how you’ll do it – but you will.

I can’t enjoy today if all I can think about is tomorrow and I can’t do anything about it anyway, so head up, smile on face, and enjoy all the great things life has to offer!

ROSH HASHANAH MESSAGE: Rising Up

This year my resolution is to finally learn how to bake challah. I have tried, not so successfully, in the past.  I am in awe of the process.  I take simple ingredients -water, yeast, flour, and salt - and transform them into beautiful, delicious bread deserving of a holy blessing.  But the transformation is not an easy one.

There seems to be so many choices and as a novice challah baker, I become overwhelmed.  Do I choose the recipe that includes sugar or honey?  Should I follow the recipe offered by my friends or family?  I haven’t even begun to bake and already I am overwhelmed.

I begin by putting the yeast in the water.  The condition of the water has to be just right, not too cold and not too hot.  And then I wait.  Is the yeast taking?  Do I see it frothing or bubbling?  Can I trust what I see?  I take the chance and move on to the next step.  The flour has to be added slowly until the dough is formed.  I knead the dough for what feels like forever.  I place it in a bowl, where it sits covered and in darkness, and I wait again.  Will it rise?  I have no choice but to be patient.  If it doesn’t rise, I have to begin again.  If it rises, I will move on to the next step.  It does, and as I set about shaping the dough, I’m faced with more decisions.  Should I make a three-braided challah or a six-braided challah, or perhaps a round challah at this time of year?  After I shape the challah it must rise again, so back it goes under cover and into the darkness.  More waiting.

It emerges from the darkness and I brush egg over my challah and place it in the oven.  I am hopeful.  There seems to be a light at the end of the tunnel.  I inhale the delicious smell of challah as it fills my home with an enticing aroma for all who enter to enjoy, and bask in the glory of my accomplishment.  I did it!  I have taken these ingredients and turned them into a thing of nourishment and beauty and I have learned so much from the process.

When we are faced with illness, we can feel overwhelmed by the choices and what lies ahead.  Whose guidance do we seek?  Who do we trust?  We are left with questions.  Will these treatments work?  I won’t know immediately.  I can only do the best that I can do.  I will have to wait and see.  It is hard to be patient.  Not knowing can feel frightening, but it’s important to remember that things can change in the darkness.  Sometimes we can feel kneaded and stretched, while at other times we can experience the joy that fills our homes and our souls, like the smell of the challah in our midst.

The light at the end of the tunnel can be hopeful no matter where we find ourselves in this journey.  We talk about the new normal - seeing life through a different lens after a cancer diagnosis - but in many ways, I now think about it as the new and improved normal.  It is within our reach to bring meaning to our transformation.

This year, as you drizzle honey over your challah, take the time to reflect and find the sweetness in your transformation.  I wish all of you a meaningful and sweet New Year.

By: Shera Dubitsky, Sharsheret Clinical Supervisor

Support is Vital for Recovery and Healing

2007 was a challenging year.  My aunt was facing brain cancer, my mom had passed away a few years earlier from lung cancer, and my grandmother passed a year before that.  I felt exhausted and vaguely unwell.  I attributed my symptoms to caring for relatives, raising a family, running a small production company, and just getting older.  I had a physical, blood work, a pap smear, and a mammogram in December and the results were normal so I stopped complaining.  I was 56 years old.

In March of 2008 I received an email with the subject line:  “Send to all the women you know”.  Usually those get trashed immediately, but I opened this one because it was from my cousin.  The title was: An Eye Opener on Ovarian Cancer.  I read it and was stunned to find all of my symptoms listed.  I called my doctor and requested the CA125 blood test and was told (just as the email predicted) that it was an unreliable test and I should make an appointment to talk about my concerns.  Knowing that wedding season was approaching and I would soon be on my feet fourteen hours a day as a videographer, I felt an urgency to find out if something was wrong.  I called The Cleveland Clinic and made an appointment with a gastroenterologist for that afternoon. 

During the exam, the doctor said he “felt something” in my lower abdomen and scheduled a CT scan.  This was on a Tuesday.  On Thursday, the results were back and I was scheduled to see my gynecologist for an ultrasound to examine huge masses on my ovaries.  By Friday, I knew it was probably cancer and surgery was necessary to confirm the suspicion.

Ten days later, I was diagnosed with stage III ovarian cancer and underwent a full hysterectomy.  Little did I know that I would need several more surgeries and chemotherapy.  I am blessed to have good friends and a wonderful family that enveloped me with love and support.  Having always been a caregiver, I was not accustomed to being cared for.  I was overwhelmed by the kindness people showed me.  My cousins shopped for and purchased a wig with me and parents of children who attended day school with my children ten years before cooked meals on chemo days, sent weekly cards, and delivered pots of soup.  One friend came with me to every chemo treatment and took notes so she could advocate medically and report to my out-of-town children.  My sons became my “medical team”, researching, reviewing, and advising.  Prayers were said for me all around the world.  I was in awe of the collective goodness that nurtured me through those tough times.

Between the rounds of chemotherapy, I was tested and found to have the BRCA2 mutation that is common among Ashkenazi Jews.  At the doctor's office, I picked up a booklet that explained the genetic mutation and its connection to breast cancer and ovarian cancer.  The booklet was published by Sharsheret.  I educated myself on BRCA2 through links on Sharsheret's website and made life-altering decisions based on what I learned. 

When I became well enough, I contacted Sharsheret’s Link Program Coordinator and asked to join Sharsheret as a peer supporter for other women diagnosed with cancer.  If I can help by sharing my experience, my time, or whatever is needed, I want to do that.  Sharsheret is part of the collective goodness I experienced and I can give back through this organization.  Recently I delivered Sharsheret brochures to two hospitals in hopes that others will become aware that support exists and is just a phone call away.

By: Fran Goldlust of Beachwood, Ohio, Sharsheret Peer Supporter

Know Your Family History

For those of us growing up in the 1950’s, cancer was not an often used word.  It was referred to as “the big C” or by other euphemisms and was rarely discussed in public.  That’s not to say the disease was uncommon, but rather that the topic just wasn’t discussed. 

In 1960, my mother was diagnosed with cancer.  She had surgery during the summer when I was away at camp and I was not told.  Later, I found out that my mother had some type of “women’s cancer.”  She had a full recovery and so the topic was never again discussed.  My mother died of natural causes 41 years later.  A year after my mother’s diagnosis, her sister was diagnosed with cancer.  She died two years later.  I was never told what type of cancer my aunt had and I never thought to ask.  Cancer was a dreaded disease and not something one talked about.

In the mid 1990’s, my aunt’s son, who is a physician, called to tell me about a new test for ovarian cancer- the test for the BRCA gene mutation.  I couldn’t understand why this was so important until he told me that both my mother and aunt had had ovarian cancer.  At the time, the test was not being offered in Washington where my mother lived.  The trip to Philadelphia, where the test was being administered, would have been too difficult for my 92 year-old mother so she was not tested.

Then I was faced with a dilemma – should I be tested?  After deciding that I would not have prophylactic surgery if I found that I was BRCA positive, I decided not to be tested for the gene.  I instead opted to have a yearly pelvic sonogram and a yearly CA125 blood test.  I followed this regimen religiously.

About three years ago, I finally decided to be tested for the BRCA gene mutation.   The results came back negative.  I felt a tremendous sense of relief until I spoke to my nephew who is an oncologist.   He told me that the results didn’t prove much.  Had my mother tested positive and I tested negative, it would be cause for rejoicing.  Since my mother had never been tested, it was still possible that some other gene was linked to her cancer.

These words proved to be prophetic.  A few months later I had my annual pelvic sonogram and a growth was found on one of my ovaries.  It was suggested that I see an oncologist.  Surgery was scheduled.  The pathology indicated that the growth was malignant and I would need chemotherapy.  The good news was that it was Stage 1A - only one ovary was affected and the cancer had not spread.  

The early detection of my cancer was due to knowing my family history.  That’s why my husband and I, through the Gorlin Family Foundation, support Sharsheret’s ovarian cancer program, and especially the campus education program.  We want to get the message out that it is imperative to know your family history.  Knowing my family history has made all the difference for me.  Find out yours.

By: Sue Gorlin of Silver Spring, Maryland, Sharsheret Peer Supporter

Beating the Odds

I had many of the symptoms.  Unfortunately, I didn’t know it.  I knew something was wrong but ovarian cancer never, ever crossed my mind.  It didn’t cross my doctor’s mind either - even when she sent me to a urologist for an ultra-sound.

Six months later, I was in the emergency room after experiencing pains in my stomach on the right side.  My husband and I were concerned that it was appendicitis.  The ER doctor asked, “On what side did you have the pain?”  He couldn’t understand why I said the right because my left ovary was surrounded by a huge mass.  I was diagnosed with stage IIIc ovarian cancer.  That was on a Tuesday in November of 2006.  The next day I met with a gynecological oncologist and the following Monday I had a complete hysterectomy and debulking, which means the doctor tried to scrape every bit of cancer tissue out of my abdomen.  He was pretty pleased with the surgery but much to my disappointment, he insisted I still had to have chemotherapy.

That was the beginning of my cancer journey.  This November, I will celebrate five years – and my life.

Even though my doctor discouraged me from getting genetic testing because there was no breast cancer or ovarian cancer in any close relative, at the urging of others, I did.  My genetic counselor didn’t think I’d get a positive result.  Just weeks later, she called to say that I was BRCA2 positive.  My three choices of action were more regular monitoring, taking medication to minimize the chance of breast cancer, or a prophylactic mastectomy.  When I told my mother about the possibility of a prophylactic mastectomy, she burst out, “Well, you are not going to do THAT!”  I read a few books, talked to a few people, and mulled over the decision for many months.  A year later, I decided to have a prophylactic double mastectomy and reconstruction.  While it was a difficult surgery, I have not for one second regretted it.

I’ve met a number of people with ovarian cancer in the last nearly five years and I can say, I’ve been very lucky.  And everywhere I turn - my therapist, a neighbor, my doctor’s office - people ask if I’d be willing to speak with other newly diagnosed women.  I never hesitate to share my experience and answer their questions.  I am a journalist and my editor, knowing my background, asked me to write a story about Sharsheret’s Founder Rochelle Shoretz.  I had not been familiar with Sharsheret before then.  After writing my story, I contacted Sharsheret’s Link Program Coordinator and immediately offered to join Sharsheret’s Ovarian Cancer Program.  I’m always ready to speak with women who are newly diagnosed, to offer rays of hope and suggested books to read. When I speak to other women, I always learn something from them as well.
But most important, I think, is for all of us to realize that we’re not alone on this cancer journey.  No matter how close your family and friends are, the women who walk in our shoes understand our situation better than anyone else.  And we can be a comfort to each other.

By: Jan Jaben-Eilon of Marietta, Georgia, Sharsheret Peer Supporter