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.

Advertisements

Lara’s Story: Two Years Later

We first interviewed Lara two years ago but even with the time that’s passed since, her story continues to inspire until today – as has been proven with the tremendous response her post has garnered in the past week when we re-shared the original post. And it comes at a perfectly-fitting time with breast cancer month in full swing and the need for the right awareness ever-present. Nothing gets the message across better than hearing it from someone who has not only fought but beat cancer because of early detection.

For those of you who have been closely following Lara’s story and are wondering how she’s doing today, we did the following interview to share with you the latest chapter in her ever-inspiring story. Life may be going one way once you’ve just completed treatment, but how much (or little) do things change when one year, two years, or more have passed?

To get more insight on this subject, we posed a few questions to this very inspirational survivor and here’s what she had to say:

1. In our first interview, you introduced yourself as Lara, the “twenty-seven-year-old breast cancer survivor”. How has this introduction evolved since and how do you introduce yourself today?

I was chatting with a friend of mine last week about someone who recently got diagnosed with breast cancer – and for a moment I had completely forgotten that I had undergone the same thing!

I think our mind is programmed in a way to keep us going without looking behind – except when we purposely choose to.

2. Has the experience left any physical scars?

I have a couple but they are barely noticeable thanks to my genius doctor, whom I love!

Other than that, does a tattoo count?

I was once labeled as a girl who had cancer. Now, I am labeled as a survivor – literally.

Lara's tattoo

3. More than 5K views and 1.6K likes later: your post on our website has undoubtedly reached a wide audience and touched many. How did people, in general, react to your story (especially those who didn’t know it before) and are there any notable responses that were shared as a result of the post?

I’ve received lots of messages from friends and random people admiring my courage and stating I was an inspiration; all of which delighted me. However, my aim is to raise awareness and encourage women to get examined. I guess I’ll never know for sure whether they’re doing it or not, but I’d like to think they are.

4. How would you describe life post-cancer? Any self-discoveries along the way since our last chat?

In the previous interview two years ago, I had mentioned how I am still very much the same person: still the same friends and still enjoying the same things in life. This still stands. And all those stories you hear or read about how someone had completely metamorphosed are either fictional or perhaps I am just odd. I hope it isn’t the latter!

I must say, though, that today my appetite towards discovering new things has definitely multiplied; simple pleasures can make me euphoric.

Oh – and one thing that has constantly been changing in the past three years is my hairstyle.

LaraTwoYearsLater-Photo02E

5. Speaking of which: has your hair grown back to the way it used to be before chemotherapy? What’s happened to your wig since?

When I had very long hair, I used to threaten hairdressers not to cut more than a centimeter or so. Now I can’t stay away from my adored hairdresser for more than a month.

Only recently have I been growing it back a little but every time I come across a woman with short hair, my heart goes “boom!”: it’s bold, it’s got attitude – it’s different.

Concerning my wig, it’s in the same place it has been since my bald days: deep down in the closet – speaking of which, I’d like to donate it to a cancer patient who will actually wear it!

6. We can’t help but smile each time we look at your “Finish Line” photograph in our previous interview. Do you do anything special to celebrate each year since completing your treatment?

The ultimate celebration will happen once they find a cure. There are so many women out there fighting breast cancer, so we haven’t won the war yet. However, we’re winning many battles thanks to early detection.

I’d like to quote my dear brother here:

“Every milestone is a celebration. Every survivor is a celebration of life. It springs hope in people and inspires them to remain positive and be mentally ready to challenge and beat cancer. We always have to celebrate our small wins in everything we do. This leads the path to bigger celebration – which in this case is cure.”

7. One of the biggest fears women who’ve undergone cancer treatment share is a fear of recurrence. Does that fear diminish as the years pass and what are your particular thoughts on this?

I don’t really think about it unless I’m prompted. There’s no point in living in anxiety and fear of something that’s uncertain: it just drains all your energy and for nothing! This applies to everything in life, not just health.

Hopefully it will never come back, but if it does, I now know the drill and I will do my utmost best to kick its ass the same way I did before.. if not stronger!

8. What does the month of October mean to you as a survivor?

I love it when in October I see random people wearing the pink ribbon, shops changing their window display to pink or nail bars promoting their pink range. It’s just so cool!

But at the same time, I hope awareness is being raised through all of this and that it’s not just for show. I also hope that awareness is not just brought up during this particular month but rather continued all year long.

LaraTwoYearsLater-03

9. Is there any advice you’d like to share with other women reading this?

For starters, stop postponing your routine medical check-ups.

Yes, we all dislike wasting those two hours at the doctor’s waiting area but what are two hours compared to hundreds of hours spent in chemotherapy sessions, radiation therapy, surgery, bed rest.. You get the picture.

Even more so: those two hours could extend someone’s lifetime so please go waste them – and with a smile.

And take your mama with ya!

10. We would like to end our interview with a similar question to that with which we closed our first interview: What kind of breast cancer work and/or awareness would you like to see more of in the region?

Currently, most awareness campaigns are targeted towards women above a certain age. They are often lunches for socialites where large donations are expected, where awareness is disseminated in an old-fashioned way, etc. So what I’d love to witness is more striking campaigns and events targeting the younger generation who seem to believe they are not at risk.

Ideally, awareness campaigns that are able to convert into results whereby each and every woman gets a check-up and help us really fight the war against breast cancer.

So whomever wants to join forces, please raise your hand!

LaraTwoYearsLater-04* All photographs in this interview are provided courtesy of Lara.

Rita’s 40cm Hair Donation

Model, beauty queen, television host, fashion stylist, wife, mother – and most recently – blogger, Rita Lamah Hankach is a woman of as many titles as the passions she pursues in life. Rita has proven to be an ideal role model for young Lebanese women with her radiant beauty, both on the outside and on the inside. Alongside earning the second runner-up “Miss Lebanon” title in 2003 and honors in other beauty pageants, Rita has hosted a range of different television shows on Future TV and worked as the executive manager of famed Lebanese designer Zuhair Murad.

Rita on the left at Miss Lebanon 2003 (Photograph source: Lebanese Pageant)

Rita, on the left, at Miss Lebanon 2003 (Photograph source: Lebanese Pageant)

Earlier this year, Rita donated a record 40 cm of her long locks for our “Make the Cut” hair donation campaign. It came as a delightful surprise to us and a gesture that has undoubtedly inspired others around her to also follow suite.

We took a few minutes with Rita to get a more intimate understanding of that experience and what it meant for her:

1. You recently made the cut and donated a generous 40 cm of your hair to our campaign. What inspired you to take this drastic step?

My cousin, Karen. One day, she came to my place with a totally new haircut and told me about how she had donated her hair.

Karen, Rita's cousin showing her new cut - Photograph source: Life and Style and Co

Karen, Rita’s cousin, with her new haircut after donating (Photograph source: Life and Style and Co)

2. How was the experience for you? Did you decide in advance how much you would end up cutting?

The moment Karen told me her story, I decided that I would do it too and cut my hair short. It would grow back before I even knew it!

3. Have you donated your hair before? If so, when?

No, never.

Rita

It would be the first time Rita would make such a drastic cut (Photograph source: Life and Style and Co)

4. How have people responded to this change in your hairstyle and to your reasons for doing this?

My hair was very long and I took really good care of it. Everybody around me knew that. They called me crazy at first when I made this decision, but once they knew the reason behind doing it, they were very encouraging.

As for the hairstyle itself, I guess it wasn’t easy for my close friends to quickly adapt to it, especially since I’ve had long hair forever. It took me some time to get used to it myself.

5. Would you encourage others to make the cut? If so, how?

Definitely yes! I have also done two interviews on TV about the experience and have shared about it on my blog to encourage people.

Before, during and after the cut

Before, during and after the cut (Photograph source: Life and Style and Co)

6. Although many women don’t like wearing wigs during their treatment, the majority in Lebanon do whether for discretion of their sickness or to regain a sense of self. What’s your perspective on the role of wigs in helping a breast cancer patient cope? Are you for or against a patient wearing a wig during this period in their life?

Wearing a wig during treatment is very important and helpful – especially for a woman who might have already lost a very valuable part of her body because of breast cancer.

On the other hand, we should also work more on encouraging our society to accept this disease as cancer could happen to any of us. It should not be treated as a taboo.

7. We’ve all unfortunately been affected by cancer in one way or another – whether directly or indirectly through a friend or family member who’s had it. What is your relationship to this cause and what have you personally discovered through it?

Well, the person that I needed most in my life got affected by cancer. My mom fought it for two years before passing away at the age of 36. I was only 14 at the time! I remember I didn’t know what was wrong with her back then because of the social taboo I mentioned before.

My mom used to wear wigs and I guess I was in a state of denial. I didn’t want to admit or even think for a second that a disaster could happen to us – and it is a disaster indeed!

What did I discover? That cancer is a despicable, ugly, mean, evil disease that could happen to anyone at anytime in our lives.

We just have to live with it, try to enjoy our lives with our loved ones, and if we pray to God, we will definitely survive this awful experience.

8. Do you think there’s enough awareness about breast cancer in Lebanon? What do you think can be done more to help the women being diagnosed with it?

The campaign you’re doing is definitely helpful and different, however, I think it should be promoted further so that more women are aware of it.

Offering a free diagnosis in order to encourage everybody to get checked is also very important.

We’d like to thank Rita for donating and for sharing with us so openly about this important subject. If you wish to keep up with her latest news and projects, be sure to follow her blog: Life and Style and Co

Find out more about our “Make the Cut” hair donation campaign and check the hair donation guidelines here.

انا مش هينة

I know it’s been a while since I’ve shared any of my stories with you, but I just got back from another journey. For the past few months, I’ve been accompanying a new woman through her cancer treatment and couldn’t really leave her side until I knew she was ok. Now that she’s feeling much better and no longer really needs me (plus her hair has grown back), let me take this chance to share her story. By preparing for the worst upon hearing her diagnosis, I could tell her attitude was going to help her get through it. Cancer is scary but sometimes we give it more power than we should. It was a difficult phase in and of itself for her, but she also realized that it could be much worse and that she was stronger than she thought she was. “It’s good that it’s me and not my kids or husband.. I’m best to handle it” she told me one night. This strong maternal instinct allowed her to accept what was happening and not dwell on the detrimental “why me?”. One of the things she dreaded though was the hospital visits. I think it made her feel vulnerable and more sick than she was really feeling. No one likes hospitals if they’re a patient anyway, right? When she was diagnosed, word quickly spread. Everyone suddenly knew! It wasn’t something in her hands although she would have preferred to keep it private if only to not worry others about her condition. Sometimes it bothered her how people she didn’t speak to much before were suddenly concerned: “I don’t want people to just be there and ask about me when things are bad. Where were they when things were good but I also would have liked to have them in my life?” Even though everyone knew, she dealt with her treatment in privacy and even kept her children away so as not to deter their image of her during this frail period. Can you relate to this feeling? We didn’t take much turns with wearing the wig as I’d had with other women before her so it stayed on my head for most of her treatment. Definitely a first. When I asked her why, she said it was uncomfortable and weighed on her emotionally. The only time it really mattered for her to wear one was at her sister’s wedding so that she wouldn’t stand out. I saw some of the pictures and could barely tell she was wearing one. “انا مش هينة” which translated into English means “I’m tough” was her personal discovery along this journey. She said it with glowing pride and you could tell it was also an achievement for her. Right when our time was coming to a close, I asked her for some advice to pass on to the next women I meet along my journey. Her words? “Be cool. Life is harder than cancer. Just accept it as it is and remember, this is just another year. It will pass.”