“My Voice” by Valerie Finnerty

Valerie Finnerty - 'Survivor'

My name is Valerie and I am a breast cancer survivor.  For more than 20 years, I often felt like I was just waiting for the diagnosis that had claimed my mother’s life when she was only 48, so it wasn’t a complete surprise when I was diagnosed with stage IIB invasive lobular carcinoma at age 39.  It wasn’t just my mother; my great-grandmother also died from metastatic breast cancer in 1922, and my  aunt is a more than twenty-year survivor.  What did surprise me is the impact that breast cancer has had on my life; being a survivor has increased both the joy and the sorrow in my life.

When I was 13, my mother, Diane, found out that she had breast cancer.  A year after her radical mastectomy, she found out that the cancer had spread.  I didn’t understand, or maybe didn’t want to understand, the seriousness of her diagnosis, an ostrich-like attitude that I maintained up until my mother died nearly three years later.  I have enormous compassion for what my mother went through, pretty much alone (my parents were divorced when I was very young), and I have a huge regret for not being a better support for her.

I didn’t think much about breast cancer when I was in my early twenties, except that I missed my mom.  This was before breast cancer “awareness”; the pink ribbon had not yet appeared on random  products, and October was just the month of Halloween.  However, when my aunt told me that she was fighting breast cancer at age 48, and when I found out that my maternal great-grandmother, Fannie, had died from breast cancer at age 47, I realized that it was likely that breast cancer would continue to be a part of my life.  One of my doctors sent me for a breast ultrasound at age 25.  I remember that I lay there with uncontrollable tears pouring down the sides of my face and for some reason no one—not one doctor or nurse—tried to comfort me.  Fortunately, the ultrasound did not find any cancer, but a foundation of fear was laid.  A physician that I had in my late twenties talked to me about a prophylactic bilateral mastectomy.  I thought he was insane!

I married and we had a little boy.  I was aware that not having my first child until right before I turned 30 was a risk factor, but I also knew that nursing my son could benefit both of us.  Every year, I asked my new physician for a mammogram, but she told me that I was too young, my breasts were too dense, and that I had to wait at least a year after weaning my son.  She also discouraged me from genetic testing to see if I was a carrier of the BRCA 1 or 2 mutations.  Our second son was born a few years later, and I met with the same resistance to my requests for a mammogram.  Finally, when I was 38, my younger son had been weaned for a year, and my doctor finally approved my request for a mammogram.  My first mammogram was normal.

The next year I went for my second mammogram, and knew within minutes that something was wrong.  I was sent to my local hospital for a biopsy, and was diagnosed with invasive lobular carcinoma, a subtype of breast cancer for which the average age is 62.  I was 39; four years younger than either my mother or my great-grandmother had been diagnosed, and nine years younger than my aunt had been.

I’ll never forget the pure fear that I felt.  It eliminated just about everything except scary thoughts from my mind.  Of course, my main fear focused around the idea that I would share my mother’s fate, and that I therefore would not live to see my two sons, who were nine and six years old, grow to adulthood.  These thoughts and others took over my brain; I could barely sleep either, which made it worse.  I remember that one day I had a complete breakdown over the thought that I might not live to read the last Harry Potter book!  My husband was a rock; he was totally supportive, even though I know he must have been scared too.  His support is what allowed me to move on to a mental place where I could think and make decisions.

Thank goodness for the Internet!  I started researching breast cancer.  I read everything that I could find about breast cancer diagnosis, treatment, prognosis, genetics, and personal stories.  The first decision that I made was to participate in a study on the genetics of breast cancer in young women through the Siteman Cancer Center.  Next, I got tested for the BRCA 1 and 2 mutations.  The third decision that I made was to transfer my care from my local hospital to a major cancer hospital in Boston.  By the time I had my appointment with the oncology team that would be in charge of my care, I had read every study on lobular breast cancer that I could find and had even emailed several researchers with questions.  It was at this time that I realized that, for me, being a survivor meant that I must understand and take part in decisions about my treatment.

With my oncology team, I decided to have a bilateral mastectomy with immediate reconstruction and radiation.  The research that I had read suggested that, for lobular breast cancer, chemotherapy was not as effective as hormonal therapy, so I geared up for a big confrontation with my new oncologist.  However, she agreed that aggressive hormonal treatment, which eventually involved surgical menopause, would be a good treatment route.  The pathology from my surgery showed that I had a 4.5 cm tumor with three positive lymph nodes in my armpit.  The size, progression and growth rate of the cancer suggested that it had been there for at least a few years; lobular cancers don’t always show up on mammograms.  Although it hasn’t been easy, three years later I am still cancer-free.  I have been tested for three mutations known to cause breast cancer, and do not have any of them.  I still hope to find out why breast cancer has dotted my family tree.

Being a survivor means that I am appreciative for what I have.  I think that I am a bit more thankful for my family and friends, and a bit more willing to take the time to listen and to do things for other people, because I know that life is precarious and precious.  I have found the strength and courage to do things that I don’t think I would have done before, such as write this story to be published on the “Voices of Survivors” website.

Being a survivor means that I have become part of a group of women who are also young breast cancer survivors.  I don’t think I could have made it through the last few years without the support of friends that I met through the Young Survival Coalition (www.youngsurvival.org).  Being a survivor has meant that I now treasure friendships with some of the most incredible women that I have ever met.  Over the past three years, we shared our fears, our successes, our sorrows, and our joys.  We met at the annual conference for young women affected by breast cancer, exchanged emails, phone numbers, and gifts.  Unfortunately, being a survivor also means that I have lost too many friends to the beast.  I have a huge amount of anger and frustration because women are still dying from this horrible disease.  I honestly believe that, if the attention and financing that are focused on other political issues in our country were given to breast cancer research, that the cluster of diseases called breast cancer would become something that could be prevented more, diagnosed earlier, and cured.

Being a survivor means that I believe that I must pay it forward.  I will survive, thrive, and give back for all of us; my friends, my family, my mother, my great-grandmother, my aunt, and myself.  I am here to support other young women with breast cancer, to write letters to Congress to ask them to pass the EARLY Act (http://wassermanschultz.house.gov/earlyact/index.shtml) to educate young women about breast cancer, to walk to raise money for the Susan G. Komen Foundation, to lobby my representatives in Congress, and to do whatever else I can to make sure that breast cancer is eliminated.  We needed a cure a lifetime ago.