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!

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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

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.

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.

Breast Cancer: Is it in your genes?

More than a year ago, Angelina Jolie revealed in a heartfelt letter to the entire world that she’d had a preventative double mastectomy because she carried a genetic mutation that increased her risk of developing breast and ovarian cancer. Her chances of developing breast cancer dropped from the estimated 87% to below 5% as a result of this procedure.

Angelina Jolie

“I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.” – Angelina Jolie (Source)

Angelina’s revelation brought genetic testing for BRCA1 (BReast CAncer 1) and BRCA2 (BReast CAncer 2) mutations into the spotlight in a very impactful way. The weeks following her story going public, people were talking about what she’d done, but, more interestingly, people were starting to ask questions about what this would mean for the future of breast cancer diagnosis.

Although genetic testing may only be able to determine 5-10% of breast cancers, it may very well mean the difference between a patient who is caught completely off-guard with an aggressive cancer and a prepared patient who catches it early on, and as such, undergoes a less invasive treatment with a much higher chance of survival. Genetic testing, as such, puts a form of power back into the hands of a patient , allowing them to consider preventative measures years before the cancer is actually discovered.

Whichever way you may choose to look at what this may mean (for some, this knowledge is a blessing as much as it is a curse), at least you now have the option to find out where you stand especially if you have a family history of breast cancer or are concerned for your own children’s risk if you’ve had cancer yourself.

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You may not know this, but genetic testing for BRCA1 and BRCA2 mutations has been available in Lebanon for almost 5 years now at select hospitals and clinics within Beirut. With interest in it recently increasing (Angelina no doubt played a big role in this), more and more women are now asking about it.

So, what do you need to know before considering the test?

We met with a representative from one of the clinics in Beirut that conduct the test to find out more. We’d like to thank the representatives at Karyo for providing more insight about the process for anyone considering doing the test here by answering the following questions.

10 THINGS TO KNOW BEFORE GETTING TESTED:

1. What is BRCA genetic testing? BRCA genetic testing is a method used to determine your risk of getting breast cancer and/or ovarian cancer, especially if you have a family history. A small blood sample is withdrawn and analyzed to detect any BRCA1 and/or BRCA2 mutations as those are the most significant genes in revealing whether you are at risk.

2. Who should get tested? It is generally recommended that high-risk individuals get tested for BRCA1 and BRCA2 mutations. You may be considered high-risk if you fit one of the following criteria:

  • You have a family history of breast cancer and/or ovarian cancer. The risk is equal whether the gene is on your mother or father’s side.
  • You or a first-degree relative has been diagnosed with breast cancer below the age of 50.
  • You or a first-degree relative has been diagnosed with ovarian cancer (regardless of age).
  • A male family member (father, brother, son, uncle, grandfather..) has been diagnosed with breast cancer.
  • Two or more relatives have had breast cancer in your family.
  • A family member has been identified with BRCA1 and/or BRCA2 mutations.

Usually, a mother who has had cancer will do the test and then have her children tested to check whether any of the mutations have been passed on.

3. I’m a high-risk individual. Where can I get tested? There are a few hospitals and clinics within Beirut that conduct BRCA1 and BRCA2 testing but the techniques may vary. If you want to get tested at Karyo, who employ the Next Generation Sequencing technique plus a MLPA technique, your doctor will first need to confirm that you are in fact eligible (usually an oncologist or gynecologist) and provide you with a reference. You then have the option to either set an appointment at Karyo’s clinic in Hamra to have a blood sample withdrawn or request a home or hospital visit if that’s more convenient for you.

KnowYourRisk

4. How long does it take to get the results? If you get your test done at Karyo, it will generally take around 2-3 weeks to get the results as the genetic analysis is done at their laboratory in Greece.

5. Can men get tested too? Yes, of course. Although men have a much lower chance of developing breast cancer than women, they too are at risk. Some men have gotten tested not for themselves, but because they were concerned for their daughters as there was a family history on their side. Both the father and mother are exposed to BRCA mutations so the risk is equal on both sides.

6. How much does the test cost? It costs $1,700* per person at Karyo for the BRCA1&2 and MLPA tests (excluding the physician’s fee, if needed). If the mother or father’s test comes out positive (i.e. a genetic mutation is detected), the children can get tested at a reduced fee. If the test turns out to be negative for a parent (i.e. no genetic mutations detected), then there is no need for anyone else to get tested.

7. Do any insurance companies in Lebanon cover it? Currently, and to our best knowledge, only BUPA Insurance fully covers the BRCA1 and BRCA2 test in Lebanon.

8. What does it mean if a mutation is detected and is it 100% certain that I will develop cancer in the future if so? Nothing in medicine is ever 100% certain but this genetic test will help you better assess your risk and to be prepared. If a mutation is discovered, you have a 87% chance of developing breast cancer and a 44% chance of developing ovarian cancer. Breast cancers associated with an abnormal BRCA1 or BRCA2 gene tend to develop in younger women and tend to occur more often in both breasts.

Recent studies have actually revealed that only 10% of inherited/familial breast cancers are due to BRCA1 or BRCA2 mutations and the BRCA test actually came back negative for 20% of inherited/familial breast cancers. As such, it’s not the main factor determining your chances, but it will give you a better picture in the case there is a mutation present.

EveryoneHasBRCAGenes

9. I got tested and it turns out there is a mutation. My doctor has warned me that I have a high chance of developing breast cancer in the future and I want to be as prepared as possible for it. At the same time, I can’t handle nor want to do something as drastic as what Angelina Jolie did. What are less drastic preventative measures I can take to protect myself? First of all, you will need to discuss your best options with your doctor who knows best how to go about it based on the results and his assessment. What Angelina Jolie did is not recommended for most people and was a drastic preventative measure she personally chose to do. There are other ways to protect and prepare yourself. One of the most common recommendations for patients who find out they are at high risk is to start screening for breast cancer and ovarian cancer at a younger age. And rather than doing a yearly mammogram, there doctor will request they do an ERM. Such precautions will help you detect any abnormalities early on before the cancer has had a chance to develop further and spread, resulting in less aggressive and invasive treatment.

10. What is the future of genetic testing in Lebanon? There has been an increased awareness towards genetic testing for breast cancer in Lebanon but the high cost is discouraging many people who may be at risk from doing it so what we expect in the future is that the cost will become more affordable. As such more people will be able to do it and take the needed preventative measures.

For further inquiries: Feel free to contact Karyo at +961 1-342461 or info@karyolb.com.

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* Price Updated: January 19, 2015