I’m Cara. At 22, the summer after I graduated from college, I tested positive for the BRCA 1 gene mutation. It wasn’t much of a surprise – my mother lost her battle to breast cancer in her 40s and her mother died from ovarian cancer before that. What was surprising was being diagnosed with invasive ductal carcinoma in my right breast at age 25. Read about my journey and experiences, and please get in touch with comments, questions, etc.
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Wearing my BRCA genes 
Hello My name is Allegra, I’m a 22 yr old BRCA 1 carrier. I ahve some very wonderful opportunities being a part of the HBOC (hereditary breast and ovarian cancer society) in Edmonton, Alberta Canada. I ahve begun the process of creating a teachinjg model to empower young men and women to ask the questions and take the steps to prevention and promotion of good health. I would love to get some of your feed back and ask you what you’ve been doing to bring the good out of wearing these “genes.”
I’d love to have you e-mail me some info you may ahve from past FORCE conferences pertaining to young people, or if you ahve any thoughts about what young people should know.
I’m strating a group up here called “high Heals; making our genes look good” and it focuses the lesson around the concept of a shoe. our shoes leave an imprit and we can choose what that will be (seeing the BRCA mutation as good or life ruining), our shoes protect us from the ground (i want to develop a network of “sole mates” young people connecting with other young people in times of triumph and trial), and much more love top hear from you.
Allegra kawa
ps: my e- mail is allegra.kawa@uleth.ca
I am a 24 year old and I have been diagnosed with a borderline phyllodes tumor, multiple fibroadenomas, and atypical ductal hyperplasia. I also have a strong family history of breast cancer. Would it be possible for me to ask you some questions via email?
Saw your video on the MFA website. Your courage is inspiring. Best of luck, and please keep up with the blog 🙂
Thanks, Grace!
Your blog is wonderful- I’m going to pass it along to my sister who is in the midst of treatment and both she and I are positive for both BRCA 1 and BRCA 2- you have a great voice and an inspiring spirit- I’m glad you are through the worst.
Thanks! Your blog is great too and what a sucky fortune to have BOTH mutations! Best of luck with your decisions and process.
I just found your blog! I’m really excited to start reading tonight.
I am 21, BRCA2+, and I just had my BMX on March 13th. I also started a blog about the experience…wish I had been reading yours a few months ago!
Best of luck to you! I’ll check out your blog as well.
Hi Cara, I’m a 31 yr old female undergoing treatment for breast cancer at GWU too and just came across your blog. Would love to catch up with you sometime and hear more about your experiences with the same doctors, nurses, processes, etc! I’m planning to also get involved with the Young Survivors Coalition, so maybe I’ll see you at on of their events soon! Glad to hear that you are doing well post treatment 🙂
Hi Marie, I tried sending you an email but I’m not sure it went through! I’d love to catch up and hear how your treatment is going. Please feel free to email me at caraelyse [at] gmail [.] com anytime!
Hi Cara~
Your story is truly inspiring… My name is Jamie, I’m 32, and BRCA2 positive. My mom was diagnosed with stage IV ovarian cancer, May 29th of 2009. They said the chances of it being a genetic cancer were slim to non. Sure enough, it came back that it was. Out of 5 siblings (I’m the oldest), I was the one that tested positive. Prior to finding out I had this genetic gene, I had several lumps removed from both of my breasts. I thought I was just prone to benign cysts and tumors but once I found out I had this gene, it all started making sense. On April 6, 2010, I decided to move forward with the mastectomy because my breast surgeon said that most likely, one day, there was a good chance that biopsy’s would come back positive. It’s funny reading your one post on the one year anniversary… I felt the same way. Totally confused… it’s like, do you celebrate or do you cry? Ironically, I had my tattoo’s exactly 1 year later, April 6, 2011, so it was a relief to put that baby to rest. I was never diagnosed with cancer though, so as confused as I was about the situation, I can’t really imagine how you felt. Your other posts about children… I can’t imagine how you feel. I love the fact that you see it as if you never have a child, the vicious circle stops, but on the other hand if you were one growing up and looking foward to being a mom one day, ugh… it has to be so so hard. When I found out I was positive, I had a 7 year old son. My biggest fear in life is that he could potentially have this gene. Although the risks for men are far lower then a woman’s risk, it still scares the hell out of me. June of last year, I found out I was pregnant again. In a sense, I’m extremely thankful that I have another beautiful boy because I never have to worry about a girl going through what you or my mom had to. He was born on January 31st (6 weeks premature), but very healthy! My mom passed away on February 27th of this year and I know he came early to be able to meet his Grammy 🙂 What I had to watch her go through felt like a dagger straight through my heart. In a sense, it felt like I was going through chemo and clinical trials myself… I never missed an appointment and even though physically I couldn’t feel her pain, emotionally, it was unbearable. On April 6th, I had my ovaries removed and it was an instant 5 billion ton weight lifted off of my shoulders. When I woke up from anesthesia, I was balling… everything over the past three years just hit me like a ton of bricks…
Although having this genetic gene SUCKS, it made me such a stronger person and it sounds like it made you stronger too.
I found your blog because your dad was in the ER when my water broke and he took great care of me for awhile. I’m so thankful our paths crossed because I found this and it’s just nice to know I’m not the only one with this going on in my life. At 32, I’ve had a double mastectomy and just had my ovaries removed and am going through menapause right now (WHICH IS NUTS BY THE WAY) – I appreciate your blog and again, it makes me feel better about my situation, so thank you!! 🙂
Thank you, Jamie, for your heartfelt comments. I am so sorry to hear about your mother but it seems that you are thriving and you have two beautiful sons and you’ve done all you can to prevent the gene from taking it’s course with you. Be proud you are knowledgeable and proactive – it was so nice to hear from you.
Hi Cara,
I wanted to say that I really love your blog. You are a fantastic writer! I’m also BRCA1, and going in for a prophylactic mastectomy next week – Yikes!
I started writing about it here http://www.previveproject.com/. Would love to connect with you!
Thx,
Andrea
Hi doll! Thank you for sharing your story! I’m 27 and am one month away from have a prophylactic bilateral mastectomy with reconstructive surgery. My eldest sister who is 39 was diagnosed with cancer this year and went through months of chemo. She had her surgery today and got her ovaries removed as well. Thankfully she already had 2 beautiful boys. Its so inspiring to hear other young women going through this! I just started a blog and am going to document with pictures and video every step of the way. I wish I had pictures or videos of someone my age going through this to know what to expect. Hopefully together we can all help other women in some way. Lots of luck to you! Here is the blog I just started…
http://www.previvorgeneration.com
xoxo
Hi and thanks so much for your comment! I’ll be sure to check out your blog. It’s a long journey you’re going through but no matter what happens, you’ll come out alright on the other side and I’m sure you’re making the right decision for you. I didn’t put any pictures on this blog, but I’m happy to send you pictures if you’d like to see my before and after. Just email me at caraelyse[at]gmail[dot]com.
hey beautiful… as you know by now, you are not alone. I am BRCA2+ and it’s been a wild ride. I am so proud to have found your blog and will share it. Here is a link to a little bit about my journey: http://www.thedoctorstv.com/videolib/init/6067
I’m glad to have found your blog too! I found it through Ticking Time Bombs. I’m not BRCA+ but I am high risk due to my genetic condition. I’d love it if you’d check out my blog. I’m pondering the PBM at some point in the future, I just don’t know when. I’m 85% chance, but have NO family history of breast cancer. I’m reaching out to those who have walked this road before me. I’m so grateful to you for sharing your story!
Dr. Sharlene Hesse-Biber is currently conducting a study on the experience of individuals who are at risk or have tested positive for the BRCA 1/2 gene mutation. If you are interested in participating, please click the following link for a confidential and anonymous survey. It should take 20 to 30 minutes.
https://bostoncollegeaands.qualtrics.com/SE/?SID=SV_2meMcRSndGrMxYE
If you have any questions or concerns, please call her at 617.552.4139 or email hesse@bc.edu.
Hello! My name is Sarah King and I am a genetic counseling student at the University of South Carolina School of Medicine in the United States. As part of my Master’s thesis, I am conducting a research study looking at decisions and choices of BRCA1 and BRCA2 mutation carriers that are 18 to 24 years old. The first goal is to gather stories and experiences from this very young, unique age group.
I am interested in potentially gathering information about the decisions and choices of women or men of this young age from members of your online community. I am writing to ask if you would consider posting a link to my survey, http://www.surveymonkey.com/s/8HQNVDD, on your blog. I have included a copy of sample post, which includes information about my research and a link to the survey that you would be able to post.
I would greatly appreciate the opportunity to ask your community to participate in this survey.
If you have any additional questions, please feel free to contact me or my thesis advisor. Thank you for you time!
Sincerely,
Sarah
Sarah E. King, B.A.
Genetic Counselor Candidate
University of South Carolina School of Medicine
USC Genetic Counseling Program
Two Medical Park, Suite 208
Columbia, SC 29203
sarah.elaine.king@gmail.com
(260) 367-1889
Karen Brooks, MS, CGC
Faculty Adviser
University of South Carolina School of
Medicine
USC Genetic Counseling Program
Two Medical Park, Suite 208
Columbia, SC 29203
Karen.Brooks@uscmed.sc.edu
(803) 545-5746
Sample Post:
Help future young, high-risk individuals like you by participating in a research study! We would love to hear your story! We are looking for women or men under the age of 25 who have undergone genetic testing and know that they carry a BRCA1 or BRCA2 gene mutation to take our online survey! For more details and information or to participate in our research please click here: http://www.surveymonkey.com/s/8HQNVDD