Sunday, April 10, 2011
First contact
Hello everyone i have wonderful news i have made my first contact with a young woman from university of alberta, and things are going to get moving i can feel it i need your energy your ideas and most importanty your willingness to come together, we are all in this together our stories come alive and that is what makes us all qualified to be there for each other. be that help oh and if there are any guys out they please come on and join us i'm going to adjust this blog to be for everyone and for all types of genetic diseases come one come all!!!!!!!!!!!!!!! btw i have a new e-mail address so if you'd like to e-mail me or i have not responded, then try this out ahkawa89@hotmail.ca hope to meet more of you chow Allegra
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Hello Allegra,
ReplyDeleteI am so sorry it has taken me so long to respond to your comment on my blog (Wearing my BRCA genes), but I did not see it until today! Glad to hear about your great network in Canada. You had asked for some thoughts about being a young person with BRCA and my experiences at FORCE conferences. I have only been to one FORCE conference, the year after I got my test results (I was 22 when I was tested and came back BRCA 1+). It was a great experience, though also a bit overwhelming for such a young person. Most of the women there were older, but there were some women my age, and no matter the age difference, I think the biggest benefit from attending the conference was feeling like I was not alone. I got to experience a huge community full of women who knew what I was going through, and that was extremely powerful because they understood more than my family, friends, doctors, and anyone else what was going through my head. Of course, there was also a lot of great information presented about surgery options, research, etc., though I felt a lot of it did not pertain specifically to me because I was so young and just starting my journey. At that point in my life, I opted for surveillance, and a lot of the FORCE women were thinking more about prophylactic surgery. I don't think that FORCE means it to be this way and they do a great job of covering all options for BRCA women, I think that's just the propensity that most of those women had, perhaps because they were older.
With all that said, my views turned upside down when, last month, I was diagnosed with breast cancer at the age of 25, after my very first screening MRI. When I first got tested for BRCA, I wondered whether I was too young to have the information, and I felt like there was nothing much I could do but wait. Now, I think of my testing as a lifesaver. If I was not tested so early, I would not have started screening so early, and I would not have found this breast cancer as early as possible. Luckily, I was Stage 1 - the tumor was a little less than 2cm and it did not spread to my lymph nodes. Knowing I had the gene mutation also made my treatment decision easier - because I know I have such a high risk of recurrence I opted for a double mastectomy with reconstruction. I still almost think of it prophylactic and it's kind of hard to get into the mindset that I am no longer a previvor, I am now a survivor.
So many people question what the best age is for BRCA testing. When I was 22, I may have agreed with those who say to test later. I was so young and perhaps not ready to have the information. Now, however, I would say the younger you get tested the better. And the younger you begin surveillance, if that's what you opt for, the better. I feel so, so, so lucky that I was tested at 22, which made me have my first MRI at 25, detecting my cancer at an early stage and allowing me to do something to save my life and my future.
I hope this helps - please feel free to ask me any specific questions you may have from this. I want to be a resource for other young women, so I am glad to do all I can to assist you.
Best wishes,
Cara
This was sent to me earlier in the week please read and enjoy the message
ReplyDeleteI recently watched a documentary on tv about the gene and testing for the gene. Cancer has been a large part in my family and has affected some of my closest relatives. Im currently 16 years old, soon to be 17, although I am confident that I would be able to deal with the news if i discovered i did in fact have the gene. Do you think that I am too young and that it may be more sensible to wait for a few years before i get tested, to ensure it didnt play on my mind?
ReplyDeleteAny help would be much appreciated
Many thanks