Things I Have Learned Since Finding Out I Carry the BRCA1 Mutation

Written by Catherine B.

“Freeze your eggs!” “Remove your breasts, and get implants if you want.” “Do it as soon as possible!” “The sooner the better!” are not phrases a woman is ever ready to hear or knows what to do with, but that’s my reality. I’m 29 years old and I have spent the last decade of my life dealing with the risk of hereditary cancer.

When I was 19 years old, my mother passed away from ovarian cancer after a very long, brave battle. My mother had three paternal aunts who all had breast cancer. Knowing that breast cancer ran in the family, she had been very careful to have biannual mammograms and MRIs. But no doctors that she consulted ever told her that women who are at risk for hereditary breast cancer are also at risk for hereditary ovarian cancer. In fact, she once brought the subject of ovarian cancer up to a doctor in California after her annual mammogram—but the doctor merely shrugged off her inquiry and stated that ovarian cancer is very rare and not to worry about it.

Over the course of my mother’s illness, we would hear the same (infuriating) words shrugging off those concerns. But these concerns eventually became a reality for us when in 1998, she was diagnosed with advanced ovarian cancer. Her physician stumbled upon it by accident after assuming the severe stomach pain that was causing her to shriek and wail was due to kidney stones, or that maybe she was even pregnant. An ultrasound found cancer in her ovaries instead and she passed away during the summer of 2005.

The following year, I was advised to have a blood test done to check for BRCA1 and BRCA2 gene mutations. I spoke to genetic counselors about my family history and they estimated my risk of carrying either gene mutation to be up to 12%. I was surprised – how could my mother have had ovarian cancer, and her three aunts have had breast cancer, and my risk of carrying a deleterious gene only be 12% at most?!

The results of my blood test proved this estimate was incorrect and I tested positive for BRCA1, which means that I actually have a 56-87% lifetime risk of developing breast cancer and a 45% lifetime risk of developing ovarian cancer. Strangely enough, I was not afraid when they broke the news to me. I thought I was young and had plenty of time to deal with it. But time flies, and I am now at an age where I have to make decisions. I asked my genetic counselor afterwards “So…what do I do now?”

While all physicians I have met with agree that increased surveillance is of the utmost importance, opinions differ regarding what other preventive measures to take. Some gynecologists have urged me to have everything removed—that is, both ovaries and both breasts. Others have suggested removing my breasts now, and removing my ovaries after child-bearing is complete. And with all that, some physicians (non-gynecologists) find these suggestions a bit too extreme, especially because I have not had children yet.

If you are a carrier of either BRCA gene, you will be faced with many opinions, options and questions. It’s very difficult to decide what to do. Sometimes I wonder if it makes sense to chop off completely healthy body parts, especially when I remember that a person may carry a BRCA mutation and never even get cancer in their lifetime. At other times, I become extremely aware of my own mortality and feel that having preventive surgery may be the best route to take. After all, “better safe than sorry.” Another factor in the decision-making is whether insurance will cover the surgeries you decide to undergo. While most insurance companies will cover the removal of breasts if you have a family history, they won’t pay for implants if that is what you want afterwards. I’m really not sure what is the best route for me just yet, but I’m daily weighing all these options and their impact on my life.

If you have a family history of breast or ovarian cancer, I strongly urge you to get tested for BRCA1 and BRCA2. Knowledge is power, and if you test positive for either genetic mutation, don’t be afraid! Feel empowered in knowing your genetic makeup a little better and having a chance to assess your options early on.

At the end of the day, all women are at risk for breast or ovarian cancer, but those of us carrying the mutation have a higher risk, which means we need to get checked more regularly (twice instead of just once a year). As long as we are on top of getting tested every six months and know what our options are, there is nothing to fear and we can remain one step ahead of cancer.

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Interview: “I Am More Than My Hair: Bald and Beautiful Me”

Alyscia Cunningham is a US-based portrait and editorial photographer who recently launched a crowd-funding campaign for “I Am More than My Hair: Bald and Beautiful Me”.

“I Am More than My Hair” is an awareness/social-change photography project that focuses on the beauty of being bald and follows Alyscia’s first book “Feminine Transitions” featuring a series of portraits that reveal the natural beauty of women of diverse ages and backgrounds without make-up on. Alyscia’s work celebrates natural beauty while also inviting us to challenge what beauty – real beauty – means to us, even when hair is lost.

Amy

Amy – Photograph from Alyscia Cunningham’s photography book “I Am More Than My Hair: Bald and Beautiful Me”

We reached out to Alyscia to find out more about her project and share her insight throughout this experience below:

1. In October 2013, you decided to make the cut and donate your hair to a cancer organization. This move, as well as the reactions of those around you, raised many questions for you about beauty standards. What were some of the notable reactions you received after cutting your hair so short and how did this inspire your latest project “I am More than My Hair: Bald and Beautiful Me”?

I’ve often heard, “A woman’s hair is her beauty” and “Your hair is your strength” from two different communities. I completely disagree with both statements.

It got to a point where I would tell myself “I am not my hair”. That single thought gave birth the the idea of my project I Am More Than My Hair, which is a response to that fact that I wasn’t my hair.

On that day, 16” [approx. 41 cm] of my locks were cut by Johnny Wright, Michelle Obama’s hair stylist, and donated for cancer patients. I’ve always had long hair and this was the first time I had ever cut my hair into a short style. I’ve wanted to cut it off once I realized my consistent head colds after swimming were related to the heavy weight of my locks not drying in time. Two years later, I was informed about the “Big Chop” and I gladly volunteered my hair to be donated.

2. You’ve been interested in beauty and addressing our relationship with it for a while now. Your previously published “Feminine Transitions” book features women without make-up and highlights the struggle of being vulnerable behind a lens. How are your two projects linked and how are they different in your perspective?

Both “Feminine Transitions” and “I Am More Than My Hair” relate to each other because they deal mostly with vulnerability. The participants were required to shed a layer to be photographed, whether it was make-up or a wig. The immediate difference that comes to mind is the subject matter.

However, there are more similarities than there are differences.

3. Tell us about your journey driving throughout Washington D.C. photographing girls and women for “Bald and Beautiful Me”. What stories came out of this experience and did you face any obstacles taking the photographs?

It has been a wonderful experience visiting new places within the DC metro area and meeting women I may not have bumped into otherwise. All the photos were taken outdoors or in a natural lighting environment: a favorite park, the backyard, by their bedroom window..

I wanted everyone to choose a location they connected with most.

I Am More Than My Hair: Bald and Beautiful Me

Tamela – Photograph from Alyscia Cunningham’s photography book “I Am More Than My Hair: Bald and Beautiful Me”

Most women opened up, telling me their personal stories about their experience with hair loss. Some shed tears. Others simply accepted it for what it was. Either way, it is a blessing to connect with women from all walks of life.

4. You have photographed more than 35 women of different backgrounds, ages and ethnicities for your project so far. What were common themes you encountered and how did your definition of beauty change as a result of those interactions?

My first reaction was noticing so much more than the hair of bald women and girls. I really got a chance to see the beauty in their features, their smile.

Hair not being there was less of a distraction. They had a natural radiance. It was raw beauty in all colors, shapes and forms.

Sala

Sala – Photograph from Alyscia Cunningham’s photography book “I Am More Than My Hair: Bald and Beautiful Me”

5. What message would you like to get across to women struggling with insecurities about their beauty? What would you tell your younger self today?

I always tell women that we are all uniquely beautiful. Don’t look to the media for an answer to beauty. The media bombards us with Photoshopped images and Photoshop is a lie.

I would tell my younger self to look for my worth within myself, and not from what others say to or about me.

6. In Lebanon (and much of the Middle East), beauty standards are quite high and this add lots of pressure on women to constantly keep up appearances. As such, when a woman loses her hair as a result of cancer treatment, it is even more difficult for her to cope and the majority will avoid being seen or opt to wear wigs during this period. This is also related to the taboo linked to cancer still being witnessed in our society, but the issue of beauty and social perception remains. What insight can you shed for women living in our part of the world on this issue and what kind of awareness do you think is needed to help overcome it?

In no way do I tell a woman going through cancer treatment how to feel. What I can offer is encouragement. I will do my best to let her know that she is beautiful despite her temporary (or permanent) hair loss. I can also offer a connection with another women on this side of the world going through the same experience, who can also encourage her.

I also make it a point to speak about the media’s view of beauty as compared to reality. Showing non-Photoshopped and Photoshopped has a huge impact on our self-perception.

From my experience, real pictures of well-known people in the media make the idea of beauty less threatening. The media sells insecurity. I use that outlet as a tool to sell positive self-imagery, showing individuals as everyday ordinary people.

Erika - Photograph from Alyscia Cunningham's photography book "I Am More Than My Hair: Bald and Beautiful Me"

Erika – Photograph from Alyscia Cunningham’s photography book “I Am More Than My Hair: Bald and Beautiful Me”

7. You recently launched a Kickstarter campaign to raise funds for a documentary you’d like to develop based on “Bald and Beautiful Me” How was the experience for you and do you plan to relaunch the campaign in the future?

Unfortunately, there were complications with Kickstarter so I decided to launch my crowdfunding campaign on YouCaring.com. My goal is to raise $25,228 in order to be able to produce 1,000 copies of the book and 500 copies of the DVD documentary. Many people don’t understand that this small number of production still takes a great deal of work and dedication, which in turn takes money.

The money raised will also go towards the marking cost of producing both the book and DVD. At first, I was recording the stories of the participants for my crowd-funding campaign but decided to actually compile them into a documentary.

There stories are so personal and heartfelt that I had to share them along with the book.

8. In closing, please continue the statement in your own words: “I am more than my hair and/because …”

… my hair does not determine my strength or ability.

Jameelah

Jameelah – Photograph from Alyscia Cunningham’s photography book “I Am More Than My Hair: Bald and Beautiful Me”

Keep posted for more on “I Am More than My Hair: Bald and Beautiful Me” here.

We’d like to turn to you now: How would you continue the statement “I am more than my hair and/because …”Please share in the comments section below.