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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Nerves and Boob Exams

I’ve wanted to write this post for a while, but I never quite found the right time to do it and kept putting it off. Not unlike the routine breast exams I find myself pushing off to the very last moment. Or until I get fed up of the constant reminders from my mom and husband to do it (Thank you both for that!).

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On my way up to the center, doctor’s note in hand.

Doing any type of check-up brings along a certain type of anxiety. Multiply that by 100 for those check-ups that have to do with cancer detection. Yeah, it’s stressful. And I completely understand why others may put it off too. I relate so much more to that anxiety especially since I’ve started doing it too. Even as someone working in the field and constantly asking others to get checked, I get nervous. Possibly, slightly even more so because I’m reminded daily of cancer’s realities through the patients we work with. And as the daughter of a former breast cancer patient, I’m at added risk which means I need to get screened at a younger age (usually 10 years before the age of diagnosis of the person in the family that had it). I did my first mammography at the age of 29 and today went in for my yearly check-up. The reason I’ve wanted to write this was to actually take you through the experience with me so that you may feel better prepared for what’s to come when you get checked. Just a small disclaimer here: This is my personal experience and views on the matter that should not be taken as a general example nor reflect the views of the NGO in any way. So before even going to the hospital, clinic or center you plan to get screened at, you need a doctor’s note, an ID and your insurance card. The insurance I’m currently on doesn’t cover much so I actually pay 78,000 LL for a mammary echograph (mammographs are for every other year in my case and I don’t remember how much the first one cost). That will differ based on your coverage. I’ve been doing my screenings at CEDIM in Abraj Center for the past three visits so they are my reference point (although I’d love to hear more from you on how it is in other places in Lebanon). I’ve been happy with their service so far and although they are professional, there is a lot of waiting in the process.

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Waiting is probably the most stressful part of the experience.

That’s probably the part that plays the most on my nerves, especially as I go on my own for these routine check-ups. A lot of the women I see there actually tend to be on their own too but if you’re one to panic, bring someone along like your mom or sister. It will help to have company. So after waiting for the form processing and your turn in the “salon” (usually full of several people each keeping to their own), you’re escorted to the top floor where the actual exams take place. I tend to get the most nervous in this part of the clinic because that’s where people  also tend to get their diagnosis. It’s really hard when someone sitting next to you gets some bad news. Even though you’re complete strangers, you just want to reach out and hug them. At the same time, it gets you worried about your own turn. It’s human nature to feel this way.

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The machine used for the mammary echographs.

Once you’re in the exam room, the doctor comes to check you. I’ve been doing my mammary echograph exams with Dr. Carla Hobeika, who put me at complete ease and doesn’t mind explaining things to me during the process (I always have a ton of questions).

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The decorative items in the exam room were quite fitting for the occasion!

The time I did the mammograph, it was with one of the young busy-body nurses (often in a pair of bright Converse shoes) that assist around the clinic. I’ll admit: it’s not a pleasant exam, but an important one so you put up with the discomfort that comes along with it. I can’t wait till someone invents a new mammography machine that caters to women’s chest comfort (if that term makes sense?). I believe it would play a big role in encouraging more women to get screened more regularly if so. So back to the exam room: the screening takes around 20 minutes. Dr. Hobeika is quite thorough and it is interesting to see the breast tissue on the screen as she does it so you feel more engaged in the process. You’ll see some dark circular shapes in the tissue now and then, but don’t be so quick to worry: they may simply be naturally-occurring cysts in the chest that are nothing to worry about. Asking when you see something is important and I find having a doctor who’s patient with that part really helps. After checking the chest and armpit area, we’re done and out I go. The results tend to take 1-2 days so mine will be ready tomorrow. The doctor put me at ease by mentioning that everything looked normal (thank God!). I’ll be back next year for my annual so until then, mission accomplished.

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The card they give you for when the results will be ready (They spelled my name wrong.

Well, there you have it! My personal account of a routine chest exam. The process itself will differ from place to place and doctor to doctor, which is why I’d love to hear more from you on this. How has your experience been if you’ve done this? What can be better? What helps? What doesn’t? And if you’d like to find out more on this, you know how to reach us.

The Un-accidental Accident

Written by Jennifer Kanaan

When I first decided to write this, I thought I would know exactly what I wanted to say, but it turned out, I didn’t. It has taken me a couple of trials to get it out on virtual paper but I kept trying because it is important for me that my message reaches the people who may need it most.

The story I would like to share with you started about two years ago when I had a terrible karting accident in the Netherlands.

Although the accident itself was minor and I was able to walk out of the car, I felt a pain in my ankle. I didn’t want to go to the hospital at first but friends and colleagues insisted to be on the safe side. I entered the ER and did not leave the hospital for the next 10 weeks.

Jennifer before the accident that would change her life.

Jennifer before the accident that would change her life.

The accident had resulted in a ruptured pancreas and a broken ankle. Although I was in indescribable pain, I had no idea (at the time) of the severity of the injuries I had encountered.

As I learned more about the impact of these injuries, I began falling deeper and deeper into an unwillingness to fight for my life.

I was really struggling to accept what was happening to me and kept asking myself: how did I end up here? what did I do to deserve this? This made me very angry – and mostly, at myself! It was so much harder for the doctors and everyone else around me to help me when I felt this way. After all, how could they help me if I was unwilling to help myself?

Accepting and getting over that anger was the first and most important step towards my recovery. The sooner you do that, the sooner you start allowing the treatment (any type of treatment) to work.

After two months of excruciating pain and many repeated medical procedures, I decided to return home (to Lebanon) with the idea that being surrounded by friends and family would help me want to get better. And that slowly worked out.

The next major step in the recovery process was accepting that I had to go through surgery. The type of injury I had was rare and the type of surgery that would help save me was even rarer. The surgery had to be performed by an experienced surgeon and under the most calculated conditions otherwise I could very easily end up with diabetes at the young age of 25.

Being home was helping me heal. I was getting much better than when I had been in the hospital in the Netherlands, to the point where I was told to start preparing for the surgery (mentally and otherwise).

And because I was not mentally-ready for this, I desperately wanted to find a non-surgical solution, which is why I sought out the best gastroenterologist in the country. However, by the time I got to his office, I was screaming of pain. I couldn’t even stand up anymore. After a few exams, we unfortunately discovered that my health status was back at square one. It was as if nothing had changed since I was being treated in the Netherlands. I had to be hospitalized, again.

I did not believe how strongly you could affect your own health until that moment.

For some reason, I did not want to get better and when they told me that I was finally medically ready for surgery, I subconsciously allowed my health to regress in order to simply avoid it.

Nothing happens by accident, not even accidents. They are there for you to learn what you need to from them and move on. They will keep on happening until you do.

I obviously needed to learn another lesson at this stage to be able to move on, and that lesson was that your mind can affect your body in ways you wouldn’t think possible. I generally fear change and believe it or not, I found a certain comfort in being sick and stuck in the hospital. My fear of getting back to a normal life made me realize that I was avoiding getting better because that would mean back to independence and responsibility – and that was scaring me.

The moment I was hospitalized this time, I had to stop eating food in order to allow my pancreas to rest. And this, under my doctor’s orders, was until further notice or until I was ready for surgery. Out of everything I had gone through up until then, that was the hardest thing I had to do. There I was: in pain gain, stuck in the hospital, and to top it off, not even allowed to eat!

At this point, you might be asking yourself: why is this article being posted on a cancer support blog?

Well, because besides the steps towards recovery being similar for anyone going through a traumatizing experience, a few of the experiences I went through actually helped me relate to some of the challenges cancer patients face.

The three months I had to spend without eating and taking nutrition from a bag took their toll on me. Needless to say, I was losing weight dramatically and my hair with it. Slowly, I started cutting my hair shorter and shorter until even the water drainage pipes at home got clogged. Just running my hand through my hair, I would wind up with a huge clump of hair within my fingers.

It was getting exhausting to do any kind of activity and I was starting to see my bones. At this point, I had nothing to lose and everything to gain so I decided to do what I never would have thought of doing: shaving my head.

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The photograph Jennifer shared on Facebook after shaving her head.

For the first couple of days, I felt judgment in the eyes of others. Those who didn’t know me (or what I had gone through), thought I had cancer and were staring at me with pity. I would only leave the house to go to the hospital, but even there, people would look at you, making you feel empty of anything except the “disease” you were carrying.

I was feeling it, even though I did not have cancer.

At first, I opted to cover my shaved head until my friends convinced me that I actually looked good like that. To show my revolt against people’s judgement, I took a picture of myself and uploaded it onto Facebook.

The support I received from my friends was really heart-warming. From this point forward, I walked with pride – even along the corridors of the many hospitals I had to visit when I began looking for a surgeon qualified, decent and honest enough to operate on me. I was ready to go through with it.

I ended up getting the surgery done soon-after and I am now in much, much better health – even better than before the accident!

Jennifer boldly embracing her new look.

Jennifer boldly embracing her new look.

A very important part of the story, which I forgot to mention earlier, was what finally motivated me to get better and fight for my life: at the beginning of this experience, I saw the whole accident as a dark period in my life that was not going to get any better. I was convinced that everything in this world was evil and that there was no reason to put any hope in the goodness of mankind.. until I met a doctor who had faith in me and who also put up with my depression and mood changes. He was, and still is, one of the most humane, honest and dedicated persons I have ever met.

That was the moment I regained hope in humanity.

He prepared me for the surgery I was so-dreading, stood by me and walked all the way with me until he was sure I had the best possible surgery outcome.

Now, two years after the accident and one year after surgery, I thank god for making me go through this experience as it has changed me in so many ways and helped me know myself better. I am a much better person because of this and this is the only way you should see any negative experiences in your life.

Celebrating one year since surgery - she did it!

Celebrating one year since the surgery – she did it!

For someone who had no idea what she wanted to write, I think I have said enough and hope these messages stay with you. Let go of anger and fear, accept the pain as it is the only way for you to release it and, most importantly, forgive yourself because this is the only way to heal – both mentally and physically.

Jennifer now works as a Social Media Specialist in Beirut and blogs regularly about Nutrition and Holistic Health on New Trends in Nutrition. Follow her on Facebook too.

“Good Morning Doctor. I have Cancer.”

Maha didn’t shed a single tear throughout her Breast Cancer treatment. Besides being a woman with tremendous strength of mind over matter, she was also always surrounded by loved ones and maybe the reality of what she was going through didn’t effect her as much as would be expected. When she finally launched her book “رحلة مواجهة” (“Journey of Confrontations” in English) in early 2011 to a crowd of more than 550 persons, she was so moved by the public’s overwhelming support and for having achieved this goal of getting her story out, that tears this time were inevitable.

Maha, who was diagnosed in 1993 with Breast Cancer, knew from the very instant she felt a hummus-sized lump that this was cancer. After all, cancer was no stranger to her family, having inflicted both her parents and other close relatives.

She boldly walked into her doctor’s office the next day and declared “Good Morning Doctor. I have cancer.” I don’t know how many women would say that, and even more than that, who’d boldly look at the disease straight in the face this way. Her initiative to get to the point from the start also accompanied her treatment. “I want to live. I want to fight it!” she told me – a determined attitude that has been accompanying her since day one of her journey.

One of the things that helped her cope, and which she recommends to all other patients that have the opportunity, is to “take the initiative to speed things up”. Need to take an exam? Done, next. Doctor confirms results? Done, next. Start chemotherapy? Done, next.. and so on. “I was on a mission and was following it up” she said, stressing on the importance of not letting the mind wander either.

Keeping this attitude is not easy though, especially when battling an aggressive type of cancer that has not completely left her body yet. “I’m hanging on to life.. The worst scenario is death, but I keep telling myself: I’m not going to die of cancer. I’ll probably die of something else..”

The worst scenario is death, but I keep telling myself: I’m not going to die of cancer. I’ll probably die of something else..

Education and literature also undoubtedly played a big role during her treatment too, giving her insight into her options when it came to making big decisions regarding the disease. She was reading “till [she] dropped!” books about diet, radiation, chemotherapy and anything to do with Breast Cancer. Even until today, Maha will read anything on the topic. “It’s become almost a hobby for me.. I’m always greedy for literature.”

Alongside her thirst for knowledge, Maha attributes the role of faith, positive thinking, work, the people surrounding her and her determination to live as factors that have helped her deal with the disease. “I feel God is with me.. Cancer is going to give up on me.”

Her advice for everyone, not just breast cancer patients, is not to take things for granted. “I don’t take my health for granted.. We all take too many things for granted. We need to wake up! Instead of buying a $3,000 pair of shoes, buy a pair for $200 and do something meaningful with the rest. Spend even as little as one hour a week in the hospital with patients.. Put a smile on someone’s face. People unfortunately don’t realize this until it’s too late.”

If that doesn’t inspire you to rethink your life, I don’t know what will. Having had a chance to sit with Maha and discuss her experience so intimately still affects me, even two months after I interviewed her. Not only has she published the first and only personal recount of a breast cancer patients’ experience in the Middle East, but she continually finds ways to spread awareness and positive thinking towards other patients. As Laura Bush herself said after the book launch, “Maha is the woman who finally broke the silence and taboo.”

And she certainly did. At her book launch and signing earlier this year Maha describes “I just felt so proud of myself.. I felt that me and all these patients, we have the same language.” She came to realize that breast cancer patients in the region are hungry to find out more about the disease and need more books like this, written with them in mind.

“I made this book for breast cancer patients. I insisted on a writing style that wouldn’t get the patient lost.” Her book, describing a very personal recount of her experience from diagnosis in 1993 until now, is her journey – a journey of confrontation that one can’t help but admire and respect Maha even more for. Her book is distributed free-of-charge to different breast cancer organizations in Jordan with proceeds from sales elsewhere going towards the King Hussein Cancer Foundation.

I’m not considered a survivor. I haven’t survived it yet but will keep fighting..

She clarifies, however, when people and organizations refer to her as a survivor, “I’m not considered a survivor. I haven’t survived it yet but will keep fighting.. Admist everything, I’m still here”

Maha has all our support and best wishes as she continues her confrontation. We hope to have her in Beirut soon to talk more about her book and break the taboo here where it’s also much-needed.

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Read more about her book “رحلة مواجهة” (soon to be published in English):

Maha Kalaji signs copies of her book “Journey of Confrontations”

Maha Kalaji Donates Proceeds of her Book “Journey of Confrontations” to the King Hussein Cancer Foundation