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.

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.

Genetic-Testing-BRCA

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