It All Started With My Mother

It all started with my mother.  Her mother, my maternal grandmother, died from Ovarian Cancer at age 54, when I was 3 years old.  I have very faint memories of her and as an older child, I often felt that loss.  I think my mother never recovered from that loss; my grandmother was the “head” of my mother’s family.  I felt the loss as well; the loss of a loving grandmother; an extension of maternal love.

For some reason, my mother seemed to feel that she too would develop Ovarian Cancer and she feared that would also be my fate.  Not only did she feel that way, but her sister and cousin (my aunt and second cousin, were also reiterating this opinion. The discussion in the family was that as an adult, I would need to have my children quickly and then have a hysterectomy.  This discussion took place back in the late 60’s and the early 70’s, when I was in Middle and High School.

I am not sure how or why my family knew there was a problem; as there was no “family link” or BrCa gene discovery until 1996.  As a place of reference, I was born in December 1957.  Somehow these women knew there was something to be very worried about. 

My maternal grandfather came from Romania in 1914.  He met my grandmother here; she had also traveled to the United States recently with her parents, 3 sisters and 2 brothers.  Until my grandmother, no one had died of Ovarian or Breast Cancer.  I have not been able to trace my lineage back further then my maternal great-grandfather.  My grandparents fled Russia because of the violence and oppression against the Jewish people.  My grandfather never wanted to speak about “the old country.”  In fact, when I was in 4th grade discussing immigrant history in Social Studies class, we were given an assignment to interview our grandparents to find out what it was like to live in another country and immigrate to America.  To my surprise, my grandfather refused to speak about it.  He said, “It was bad!  Everything was bad!  There was violence everywhere.  You should never know about this.” 

I was sad to have to go back to school with a report that stated exactly what “Papa” had said.  It was bad.  Everything was bad.  My grandfather did not want to speak to me about this at all. 

My first Broadway play was “Fiddler on the Roof,” which I saw with my mother in 1966.  That was about as close as I could get to understanding what my heritage was like.  My mother enjoyed planning mother/ daughter outings; after my first play I ate Japanese food for the first time.  My mother taught me how to use chopsticks. My mom also took me to see “Funny Girl” at Radio City Music Hall when it first came out and “Two By Two” with Danny Kaye.  These began life-long favorites of mine; the theater, Barbra Streisand and Japanese food.

I was vigilant about my gynecological appointments, as few of my friends were when they came “of age.”  I went to college, earned a Master’s Degree, began my teaching career in 1980 and got married for the first time in 1989.

As predicted, mother was diagnosed with Ovarian Cancer in 1985; she had a hysterectomy and then chemotherapy treatment.  She enjoyed a brief respite of two years where she was convinced she was in remission.  However in July 1990 she was back in the hospital and passed away on September 6, 1990.  Her last words to me were, “Don’t check the mink coat; never put perfume on when you are wearing jewelry and please have a hysterectomy after you are done having children.”

As my favorite wise man, John Lennon said, “Life is what happens when you are busy making other plans.” I enjoyed my career, had an active social life with friends, went to concerts and was fortunate to have wonderful friends and family.  But there was great difficulty as well.   My mom passed away, I experienced infertility problems, three miscarriages, and divorce.  During one of my therapy sessions, the psychologist said, “You have experienced a lot of loss.”  It was strange because in spite of the hardship, my life had been very fortunate and fulfilling.  But the loss of a mother, a husband and unborn children might be things some people can never get over.  Over time there is healing, but one cannot forget those moments.

 I remarried in 1996.  Literally right after I married my current husband, we went straight into fertility treatments.  It was determined that I was “peri” menopausal, so my husband and I chose to go the route of obtaining a donor egg at the North Carolina Center for Reproductive Medicine, in Cary, NC.  At that time the waiting lists for New York area donor eggs were 1 to 2 years.  My infertility doctor recommended this hospital in North Carolina because the wait time was only 3-4 months and she had good success with the procedure at this hospital.  During all this time, my husband and I considered my ovaries to be a ticking time bomb.

In Gilda’s book, she says there are some pre-symptoms that might predict whether or not a woman has a high chance of getting ovarian cancer.  She and I shared those symptoms; getting the first menstrual period late (I got mine the month before I turned 14) and experiencing infertility problems and a family history of ovarian cancer.

My son was born in 1998.  I was 40 years old.  I had my first mammogram, which was normal.  I actually felt that “breast cancer is not in my destiny; ovarian cancer is my destiny, so I need to take care of that.”  After two more years of infertility treatments and IVF, my husband and I decided we were very happy with our tiny family.   I was tired of the doctor appointments and daily injections.  My thighs and buttocks hurt all the time and I was black and blue all over.  I wanted to begin to live my life, feeling grateful for my beautiful and intelligent son, who was named after my mother.  There was always that sadness that I carried around; the same sadness my mother carried around.  We both lost our mothers much too early.  We were sad that our mothers were not here to enjoy our children.  I found myself saying to my son, as my mother said to me, “Your grandmother would have loved you very much.”

In November of 2002, my next annual appointment with my gynecologist included my request for surgery.  I told her about my family history and my mother’s last words.  (I even included the part about the mink coat.)

My gynecologist said, “Well, we don’t do that anymore.  But I am thinking that you have a gene mutation.  Your family is Ashkenazi Jewish and although the gene is rare; it is most common in people with an Eastern European Jewish background.  It is called the BrCa gene and I will write you a prescription so that you may go to genetic counseling and get tested.  It is a simple blood test.  If you are positive, we will do what is called an oophorectomy.  We will remove your ovaries and fallopian tubes and leave your uterus intact.  Cervical and uterine cancer is not considered family related cancers.  But the other ramification is that you will have a larger than normal chance of contracting breast cancer. So we will recommend a mastectomy.”

What?  A mastectomy?  No….not me……..I wrestled with that thought; breast cancer and a mastectomy?  That is not in my destiny.  No one in my family has had breast cancer.    My destiny is ovarian cancer.  My breasts are fine.  The scariest word in the world to me was mastectomy!  It sounded absolutely gruesome!  However, there was a scarier word to me; chemotherapy.

At this point I knew one colleague who had died of breast cancer and at least 8 other colleagues who had different breast cancers and different treatment options (lumpectomies, chemotherapies, radiation, etc.) Yet a family link had never been mentioned in any of these cases. 

As soon as we could get an appointment, we went to see a genetic counselor.  The conversation before the blood test was very extensive.  I was informed that unless my blood test was positive, my health insurance would not cover the $1,000 expense.  However, after hearing my family history and reading my gynecologist recommendations, the geneticist would only test 2 chromosomal pairs; the pairs where the BrCa gene was most likely to be found.  And if I did test positive for the gene, I would have a 33% chance of getting breast cancer and a preventative bilateral mastectomy would be recommended.  The geneticist explained that only 1% of breast cancers are familiar, so they are reluctant to perform this test unless there is a clear family history of breast or ovarian cancer, as was my case.

A mastectomy?  Holy shit!  There is that word again!  What are they talking about?  I don’t need a mastectomy!

Just by chance I read It's Always Something by Gilda Radner.   I loved Gilda on Saturday Night Live and I loved her husband in his movies.  This was her biography where she discussed her upbringing, her life and how she found out after her cancer diagnosis that it ran in her family after she came down with virulent ovarian cancer. Her husband was devastated by her death. If only we had known she carried that gene, he mentions in the book, we would have been able to prevent this.  He was now an advocate for women’s health and had many public service announcements on television warning women about the importance of regular checkups and blood tests. 

Two weeks later my blood test indicated that I was a carrier of the BrCa 1 mutation.  Here was a situation I had accepted since childhood that I needed to take care of.  But I did not know anyone who had done this surgery.  I contacted the “Gilda Radner Ovarian Cancer Registry,” created by Gene Wilder, where I was able to speak on the phone to women who had the procedure.   That was comforting.  Women were eager to speak to me.  But these women were in upstate New York.  There was nobody that I knew of back then who I could meet and speak to in person. 

Before the surgery, my doctor urged me again to have a mastectomy and said she could arrange to have this done when I have my oophorectomy.  I said, No! Absolutely not!  I even joked to my husband; “Do I have to put duct tape on my chest to prevent them from removing my breasts?”

My oophorectomy was in January 2003. The procedure was done laproscopically by my gynecologist.  There were no complications; my ovaries were very healthy, but they were removed.  I was in pain for about 4 days; on the 5th day I woke up totally pain free and ready to greet the world.  I was relieved.  I thought I was safe. 

With a hysterectomy and a mastectomy, there is still a 1-2% chance of contracting breast and/or ovarian cancer.  Apparently, the organs that are touched by the ovarian tissue and breast tissue could still get that cancer.  It’s amazing that it is possible to contract ovarian cancer in your stomach and doctors can identify it as such and not stomach cancer from looking at the cells.  However, this risk is reduced remarkably from 40-80%, I felt confident that I was truly safe.

Being dropped kicked into menopause was truly uncomfortable.  I had the mood swings, hot flashes and vaginal dryness which are all normal symptoms of menopause.  However, I was unable to take any estrogen based products, including eating soy, because my elevated breast cancer risk would be elevated even more.  (I would still enjoy miso soup in Japanese restaurants, but I stopped cooking it for dinner.)  Hormone replacement therapy was not an option, according to my doctor.  The only product I was allowed was Black Cohosh.  I was also prescribed Ambien, a sleeping medication.  Apparently estrogen is a natural sleep aide for women; my lack of estrogen meant many sleepless nights. 

The great news of course was that the ovaries were gone and I thought I was safe.

I continued my yearly mammograms.  Not long after my oophorectomy, one mammogram had a “spot” on it that had not been there before.  I was given a fine needle biopsy, which determined that it was not cancerous.   Although it was negative for cancer, I was being checked two times a year; mammogram then sonogram, alternating every six months. I went to those appointments and I would patiently sit in the waiting rooms, reading books, happily confident that I would not get breast cancer.

My husband threw me a wonderful 50th birthday party in December 2007 at the Ethical Humanist Society of Long Island.  There were about 50 friends, relatives and colleagues in attendance.  We had a classic rock band and “pass around” hors d’oerves instead of a sit down meal.  To this day it was the best party I have ever been to in my life.  I danced the night away.   I did not sit down for a minute.

Celebrate life and love; family; friends and music!

Now it is my annual appointment in November 2008.  My gynecologist was really concerned.  Although I continued to be checked every six months, I was 51, which meant, I was well into the age where BrCa cancers most often show up.  They are insidious and spread rapidly.  Like ovarian cancer, they can spread within the six months in between checkups to places like lymph nodes. She begged me to have the preventative bilateral mastectomy with reconstruction.  I told her, “I have never known anyone who has done this!   

At a time when surgery is being discouraged medically in most areas, who removes a perfectly healthy and beautiful, if I do say so myself, body part?  As a woman it was unthinkable.  So my doctor suggested I go for a second opinion. 

The second opinion was a breast surgeon.  She looked over my mammograms and my BrCa status and concurred with my gynecologist.  My response was blatant; “Are you fucking kidding me?”    So she sent me for a third opinion. 

I went to the top oncologist at Long Island Jewish Hospital.  Now I am crying throughout that meeting.  She agreed with everyone else.  A mastectomy was the best way for me to stay healthy.  It was an unbelievable unanimous opinion.  Get the bilateral mastectomy with reconstruction. 

I thought I was in a nightmare.  It was outrageous to be hearing this from prominent doctors at a top hospital on Long Island.

At this point, my dad started getting involved.  He could not believe I was telling him this.  He say, “Let’s go to Sloan Kettering and see what they say.  They are at the top of this field.  Besides, then I could visit you when you are in the hospital.”  The oncologist at LIJ recommended me to a doctor at Sloan Kettering and this time, going for the 4th second opinion, I was flanked by my husband and my dad.  Now the men were taking notice!  Now they felt they had to be involved because the diagnosis seemed to be unbelievable. 

Loitering in Dr. Offitts waiting room in Sloan’s beautiful facility we had the opportunity to look at the articles and newspapers framed on the walls.  The doctor the oncologist at LIJ referred me to was Dr. Kenneth Offit; the lead geneticist and one of the original researchers who isolated the BrCa gene.   The oncologist from Long Island Jewish had referred us to the top guy at Sloan; the one who had been there from the beginning.  As we went in for the consult, my dad was on my left and Chris was on my right.

The first thing the doctor did was give me another blood test.  Sure enough, I was still BrCa 1+. Here now was a second doctor appointment that I cried all the way through.  Thank goodness my husband and father were there.  I was barely functioning.

Dr Offitt said, “You have two courses of action.  We give you a mastectomy with reconstruction when you are healthy and strong and will recover quickly.  The recovery is hard, but you will recover and you will never hear those words,” You have Breast Cancer.” You will have a 1-2% of contracting breast or ovarian cancer, much lower than the public.  You can go on with your life and be perfectly normal. Our plastic surgery units do remarkable things these days. “

“Or we will put you on surveillance; check you as often as you like.  We will mammogram, sonogram and MRI you alternating over the course of the year.  But I promise you.  We will find cancer.  And then we would do the mastectomy anyway and you might have physical complications.  If you have to receive radiation, surgeons sometimes are unable to do reconstruction because radiation compromises healthy skin.  If you have chemotherapy then your immune system is compromised, so plastic surgery might also be delayed in this case.  But you never know where the cancer will spread and once you have been diagnosed with cancer, you become a cancer patient, and all that goes along with it.”

His bedside manner was terrible.  Brutal and to the point.

We all could not believe it.  Dr. Offitt shook our hand and told us to call him if we needed any more assistance.  The three of us left shocked and horrified by the suggestion of surgery.  The second and third and fourth opinions were unanimous. 

I had to plan to have a mastectomy.  And every time I said the word out loud I cried.  I could not believe it.  The only word that scared me more than mastectomy was chemotherapy.  And that was how we decided.  My husband agreed that once I contracted cancer there is no way to predict where it would end up.  We might get lucky and it is contained.  But it might spread.  I would still need the surgery and there would be the constant checkups, possible radiation, chemotherapy and endless medications.

I kept going round and round….maybe I won’t get cancer.  But what If I do?  I may need chemotherapy.

My decision was made because the only word that scared me more than mastectomy was chemotherapy.