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.


Time to Talk: Young Adults Chat About Coping with Mom’s Cancer


“I would like to share this story with you, maybe it will give you some hope.” began one of the participants in Tuesday’s Time to Chat: Coping with Mom’s Cancer – an intimate WhatsApp group chat session dedicated to young adults and led by Psychologist and PhD Researcher Jihane Ghorayeb.

The spirit of helping each other set the tone of the entire chat that also covered various topics, such as:

  • How the roles and responsibilities of siblings shift during mom’s treatment.
  • The need for a breather every now and then, which translates into a need to go out and be with friends.
  • That nagging feeling within that we’re not doing enough, no matter how much we try, and the subsequent guilt that remains even after mom has completed treatment.
  • Suggestions to help mom, such as recommending she write to express what she is going through and reading books to get distracted.

Jihane advised writing as a great coping technique for both child and parent, even if for just 10 minutes each day. It doesn’t even have to be about breast cancer, but anything going on in your life and what you may be feeling – especially if you don’t tend to talk much with others about what’s going on.

A common dilemma was the role reversal that often occurs when a parent is sick. The child starts to feel like the parent in this situation as they start taking on more of a caregiving role and added responsibilities. As Jihane further clarified, this role-reversal is referred to as “parentification” (in psychology) and can be very stressful – both emotionally and physically.


Another main topic of discussion was the effect chemo had on mom’s emotions and the strain that added to their relationship, resulting in arguments or misunderstanding during an already sensitive period for both. “Understanding that it’s the treatment and not her is important” shared one of the chat participants and is vital advice for anyone going through a similar experience. It’s key to stay by her side and realize she’s going through a lot so emotions are bound to surface. And most importantly, you should remember not to take it personally.

While such an experience forces one to become more independent, you also don’t want to push mom away as she still needs to feel a part of your life and that you need her. Ask her for help if you’re trying to cook something for example and keep her involved in your day-to-day life as this will help you both regain a sense of normalcy and balance.

All-in-all, the chat was very beneficial and everyone got something out of it – which was great. We’d like to thank everyone who took part and especially Jihane for all her help in preparing for the chat (and for connecting all the way from London). We’re looking forward to planning the next one soon!


Can you relate to the above? If you’ve been through a similar experience and have some tips that helped you cope, please share with us in the comments section below.

If you’re interested in signing up for the next session for teens and young adults coping with mom’s cancer, please fill in our online (confidential) registration form and we’ll be in touch as soon as the next session is scheduled. If you’d like to find out more, send us an email to: info@onewigstand.org or call us at +961 79 158 471.


Lemonista: A Breast Cancer Awareness Booth with a Zesty Twist!

Breast cancer awareness is a sensitive issue for young people who may not always be ready or receptive to talking about such (let’s admit: scary) things even if they know they may be at risk. So when we were invited to take part in AUB’s Annual Civic Engagement Conference and Fair, we immediately got to thinking of different ways to reach and engage the students so that we may get our message across more effectively.

Less than two years ago, we teamed up with Worldwide Breast Cancer to adapt their brilliant flyers into Arabic (with the translation support of Samar Hajj-Ali) and so we looked no further than those “lemons” as a base for building our booth’s concept on. Lemons are fresh, lemons are fun and lemons make lemonade – we were onto something!

We decided to take the twelve signs to watch for one step further by creating plastic models to represent each one. Students had a chance to look more closely at them, ask questions and try to find a match with some of the actual lemons decorating our booth. Most weren’t aware of all the signs that may indicate breast cancer developing in the chest, besides a lump, so it was an eye-opening experience for all. Lemonista-2370 The highlight for those visiting the booth must have been the interactive “Wheel of Lemons” game we developed that included eight different categories of questions or games to play, based on where the dial pointed. Categories including “Mythbuster”, “Celebrities” and the unexpected “Wild Card” gave participants a chance to win a cup of free, home-made lemonade (lovingly made by Teta Laurice, Loryne’s granny). Lemonista-2378 While the questions ranged from easy to tricky (can you guess the answer of the question in the picture above without seeing the answer?), no one passed on the challenge and eagerly took turns guessing for the right answer. Even those who didn’t win a lemonade were good sports about it and left with something out of the experience, whether it was a chance to ask a question that’s been on their mind or simply learning a new breast cancer fact they didn’t know about before (such as that the left breast is more prone to developing cancer that the right one). Lemonista-2637 The reactions and questions we received during the two days of the fair were honestly the most significant part of the experience for us. For example, the second the wheel marker would stop at “Celebrities”, Angelina Jolie would be the first thing on their mind – which is a great sign of the awareness she’s shed although her reasons for doing it (as a preventative measure rather than a treatment for cancer) wasn’t as clear for some of the students. This gave us the opportunity to engage in a dialogue with them about what she’d done and raise awareness on genetic testing.

Other students had bigger concerns on their mind which would come out in conversation before or after playing the game, including how to self-check and assess their risk if a family member had had cancer. Some even felt comfortable enough sharing a personal experience they may not have had a chance to share otherwise, which was incredibly touching for us. Lemonista-2585 More than 200 cups of lemonade later (over a span of two days), we can safely say that our mission was accomplished and that our “Lemonista” awareness booth had a positive impact on all those who took part, making all the hard-work planning and preparing for it even more worthwhile.

View highlights of our booth in this video montage:

Whether it was a new fact learned, a question answered, a laugh shared – or maybe simply a refreshing drink received – everyone left with a little something and we look forward to spreading more awareness in this way in the future. Where should “The Lemonista” set up her awareness booth next? Keep posted!


Thank you to AUB and the CCECS team for inviting us to take part in their fair which is key to developing civic engagement for students and building a more positive future. A very big thank you goes to our amazing volunteers Aya, Myriam and Catherine for all their help and dedication, Teta Laurice for preparing all the lemonade for us, and to our talented board member, Mira for her guidance in developing the concept for the booth.


Know 2 Beat: Engaging the Youth in Cancer Awareness

Awareness campaigns for cancer tend to be (most often) developed by and for adults, but what happens when the tables are turned and the younger generation is the one creating the message for their peers and communities?

That’s what Know to Beat is all about and it is from that base that we teamed up with the Faireface Association, May Jallad Foundation and Lebanese Breast Cancer Foundation (LBCF) to develop a cancer awareness competition that would bring in the creative talents of 15 public schools from the Beirut district.

With the support of the Ministry of Education and the Ministry of Health, we began our journey in the Fall of 2014: preparing for the competition and visiting the schools to introduce them to the project. Each group of students from the schools had a choice of one of five cancers: breast, cervical, lung, skin and testicular cancer – cancers that are not only common in Lebanon, but that would be of interest for the youth to focus on.The students taking part would have to learn more about cancer and its prevention methods by conducting their own research (we provided some helpful links to get them started here), interviewing specialists and then developing campaign materials (a poster, flyer and short movie) to spread awareness to their community.

When we first started visiting the schools, we noticed that the majority of the students didn’t know much about cancer, but that didn’t discourage them from taking part nor did they shy away from the subject. On the contrary: the taboo that often comes with the disease didn’t affect them and they were determined to develop the best project possible. IMG_1031 IMG_0992 IMG_1165 Teamwork among the students was also very evident during the process. The students divided themselves up to each work on a different part of the project. At Amir Shakib Reslan School, for example, one of the students volunteered right away to direct the video his team would submit because he has a passion for filmmaking and would like to pursue it as his future career. Each group (consisting of 10-15 students from each school) had around three months to work on their projects and submit the campaign materials  for evaluation by a carefully-assembled jury.

Once we started receiving the submissions, the enthusiasm was at its peak – we couldn’t wait to see what the students had come up with! It was interesting to see that 60% of the schools (9 schools) had chosen to focus on lung cancer, followed by cervical cancer (3 schools), breast cancer (2 schools) and testicular cancer (1 school). None of the schools had selected to work on skin cancer awareness. The high number of schools choosing to shed light on lung cancer reflects a real concern for the increasing number of people smoking – among the youth and otherwise.

The reason for each school’s choice varied. Second Achrafieh Public School chose testicular cancer: a choice interestingly made by the girls in the group in order to raise awareness to boys and the men in their life. Laur Mghayzel Public School for Girls opted for cervical cancer instead of breast cancer because there isn’t enough awareness on this issue that affects all women – whether its a mother, daughter or grandmother. For others, the project had a personal significance for the students, such as at Jamil Rawas High School, that dedicated their project to a beloved teacher who had passed away from lung cancer. K2BInvite_March11UNESCO_EnglishLast Wednesday (March 11th), the winners of the top projects were revealed and they received their prizes at a special ceremony. Upon entering the hall at Unesco Palace, you could instantly see the eagerness of the students. They were all (rightfully!) proud of their projects hanging along the walls, taking photographs of each other, reminiscing on the process among each other and sharing a laugh. IMG_5925 IMG_5962 And the winners were.. cue the drumroll please!

First Place:

Click on the image to watch their video online.

Click on the image to watch their video online.

First Place:

First Place: Gebran Andraos Tueini Public High School

Second Place: 

Click on the image to watch their video online.

Click on the image to watch their video online.


Second Place: Zahia Salman Public High School

Third Place:

Click on the image to watch their video online.

Click on the image to watch their video online.

Third Place: Ras El-Nabeh Public High School for Boys

Third Place: Ras El-Nabeh Public High School for Boys

The reactions – from the students to the principal and teachers – was truly priceless! It’s very rewarding to see how this project had such a positive impact on all those involved.

This adorable little model made an appearance to support her school - who ended up winning first place!

This adorable little model made an appearance to support her school – who ended up winning first place!

Actively involving the youth in such preventative healthcare helps eliminate the taboo that comes with cancer at an earlier age while also spreading awareness to their surrounding in an engaging way. The creativity and dedication demonstrated by the students that took part is very promising to a brighter, cancer-free future.


Let’s WhatsApp: Chatting About Nutrition

On March 4th, we held our first “Let’s WhatsApp” group chat for Breast Cancer patients and survivors. This was the first of an on-going support program we’ll be offering to help connect patients from across Lebanon and provide them an opportunity to benefit from specialists’ advice from the comfort of their own home. S1Nutrition_Feb2015_AR

For our first “Let’s WhatsApp”, clinical nutritionist Diane Nicolas, who has extensive experience working with cancer patients, was the featured specialist who volunteered her time and expertise for the session on Nutrition.

The group chat setting was intimate with five women (the majority of which had never met in person) taking part and asking their questions on topics of interest to each of them while also sharing their own tips amongst each other. Their enthusiasm and curiosity about the subject was evident from the onset!

Trigging the first discussion was the link between nutrition and cancer – and the majority agreed, that yes, it does play a role. One of the patients held a different perspective as despite having a very healthy lifestyle and diet, she still got diagnosed with cancer. So is there or isn’t there a link? Diane shed insight by explaining that although improper nutrition doesn’t necessarily lead to cancer, following the right diet and maintaining your health increases your chances of preventing it. Genetics and the environment are very important factors that also play a role, so it isn’t just nutrition that may affect your diagnosis.

Coffee was another hot topic among the women: How much was too much? What were the benefits and was there harm in adding coffee creamers, like Coffeemate, to ones cup? Another topic of much interest was meats, chickens and fish. Questions ranged from how best to cook it (Well-done? Over-cooked? Tip: Avoid burning it!) to whether eating local mezza specialties like raw meat (kebbe and kasbe naye) were harmful. Even sushi came up! LetsWhatsApp_ChatQuestion1 Topics that always often raise question marks, like the rumored link of soy to cancer, how much chocolate is good for you and even the role of ashta in helping one lost weight came up too and were discussed further. (PS: The answers to all the above are below) LetsWhatsApp_ChatQuestion2 Diane was very helpful and quickly answered all the questions brought up during the chat. She additionally helped break the ice at the start so that no one felt uncomfortable. Jokes, questions and even personal tips were being shared among the participants by the end of the chat – a very positive sign!

For those who missed the chat or were curious about the topics covered, we’ve compiled a short summary for you below of the top nutrition tips shared by Diane Nicolas:

  • Coffeemate is not bad, but it should preferably be replaced with a more nutritious food such as milk (liquid or powdered are both good). Skimmed milk? Even better!
  • Chocolate in moderation is not harmful for the health, but we must be careful not to gain weight because weight gain is closely linked to cancer.
  • Chicken is not harmful if you trust the source as some chicken is injected with hormones so be careful where you get or eat it from (the size of the chicken is a helpful indication)
  • A myth that was challenged? Kachta and avocado don’t help you lose weight. It’s all about reducing calories. One avocado is actually equivalent to 8 spoons of oil so avoid eating too much of it.

 The Dos:

  • Eat Fresh
  • Eat fruits, vegetables and legumes more often.
  • Eat only fresh Frish…
  • Consume meat 2 times per week, try to avoid raw meats
  • Eat preferably chicken breast.
  • Consume more whole grain Lebanese bread (“2am7a kemle”)
  • Limit your coffee intake to 2 cups per day.

The Donts:

  • Don’t eat caned or smoked tuna and salmon.
  • Don’t eat over-cooked meat (ma7rou2).
  • Avoid raw meat (kassbeh and kebbe Nayye)
  • Avoid soybeans as they are genetically modified.
  • If your treatment includes cortisone, do not abuse sugar and deserts.
  • Our Mediterranean diet is very healthy and complete, so don’t search for exotic foods in order to be healthier or to prevent diseases.

“Don’t eat less, but EAT RIGHT; this is the response to all illness and diseases linked to nutrition. Flash news: We are lucky to be Lebanese since our diet is known to be the best among hundred of diets all over the world. We have the healthiest mix and match: 3adas b7amod, taboule, fatouch, ma7aché, sbenikh, mloukhieh, bemye, makhlouta, labne, jebne bayda, kebbe… ” – Diane Nicolas


“I’d like to thank every person that took part in the group chat and encourage One Wig Stand for this amazing project. We are lucky to have such a support that offers knowledge and care at the same time. Thank you!” – Diane Nicolas

All the feedback we received from those who took part was very encouraging and we’re looking forward to hosting more of these group chats on different topics to benefit patients and survivors in the future. Thank you to all the ladies who took part and to the lovely Diane Nicolas for lending her time and expertise for these sessions!


Do you have a subject in mind that you’d like us to discuss in the next WhatsApp session? Is there a certain specialist you’d like to recommend who’d be interested in sharing their knowledge with others? Please feel free to suggest a topic or specialist you’d like to chat with us in the comments section below and we’ll do our best to make it happen!

If you’re a breast cancer patient, survivor or caregiver that would be interested in signing up for the next session, please send us an email to: info@onewigstand.org or call us at +961 79 158 471 so we keep you posted.