Hello everyone; my name is Allegra. I'm in my early 20's and this year I went to get genetic testing done for the BRCA 1 genetic mutuation. To give a little history my grandmother on my mom's side was 47 when she dies of ovarian cancer, which is very young in terms of that particular cancer. Then mother was 35 when she was first diagnosies with breat cancer, then again shortly after her 40th birthday it metatstisized into her spine and she was given only 5 years to live. She herself was recomended to take the BRCA genetic test, and showed up positive. By the grace of God she is still with me today it has been nearly 7 years since the terminal diagnosis. She is now the House manager at Sorentino's Compassion House, a home in Edmonton Alberta Canada that provides a home away from home for women and their companions to stay while going to the Cross Canacer Institue in Edmonoton for chemo and radiation therapy. She is making a difference in many womens lives by sharing her stories, photo's, and of course a shoulder to cry on. I would like to do the same thing for young girls who are BRCA positive in Canada.
This blog is meant to be a source of strength, reflection, and inspiration. I feel that this diagnosis is a "crystal ball" giving a glimps of the potential future, I've always maintained an active and health lifestyle and incorporated physical examinations both by myself and by a physicain, but there are some scary choice that are in the near future that I will eventually have to make, and so will other girls with this gene.
If you don't know about the course of observa tion once you have been identified as BRCA + here is an example, at 25 they sugest breast MRI's once a year and mammography 6 months after each MRI and then self examination and every 3 months it is suggested to get a physician to do a quick breast examination. lots of Dr visits, but I don't mind i'm months away from graduating with my BN in nursing so it will be easy to go on a luch break to get "felt-up" (lol) or scanned at the hospital.
I believe that humor, friendship, and community is key to making the gene tolerable. I encourage anyone who is interested in this BRCA gene to look it up, its very interesting and amazing to see how far science and medicine has come that they can give us this window into our future.
here is a funny quote that I got from my mom;
ReplyDelete"If my mom's gene's fit, do I have to wear them" lol...hope that there is a way that each of you can find a chance to laugh and find the lighter side of the coin. hope to hear from you all soon. questions are welcome...concerns are ok to...I'm here and I'm positive.
Allegra, Im curious as to what made you get tested for this gene ? It is shown to run in the family already, so is this something that you had done so that you will get better screening and testing in the future?
ReplyDeleteTo be truthfully honest I apprechiate the extra screening and being a nurse, my lunch break can be a quick Dr. visit or maybe even a scan. I also wanted to be sure that I'm protected, I don't want to put my children through the same pain of watching their mother hurt. I'm all about prevetion, and promotion of health.
ReplyDeleteI'm heading off to edmonton to meet with Dr. kelly Dabs who runs the high risk breast clinc in edmonton, so I'll have plenty to blog about after that appointment. Many questions about my futurue that many others are concerned about as well, such as if there si evidence to support havin g children earlier to avoid rapid growth of breast cancer tumors during pregnacy. My 28 yr cousin is the main concern for this question she found a "organge size lump" and she's 7 ish months pregnant, so i want to know for myself and for my bloggers who may want to know the answer to that question. ttly...hope to have lost to tell you after fri.
ReplyDeleteHello everyone; Dr. dabs was great she basically told me not to rush with children...when i'm done having my children go and get the oophrectomy (removal of ovaries and falopian tubes) then get the bilteral mastectomy with reconstruction...boob job after babies...yay
ReplyDeleteShe also suggesed i do a 5 year chemoprophylaxis involving a drug called Ralaxifene- it is a selective estrogen receptor modulator, basically it stabalizes your hormones. So potential of Hot flashes, i'm not too worried i live in a desert already so i already got a industrial grade fan...lol.
this is taken one a day like the pill, and you shouldn't get pregnant on this drug, if you do want to give yourself 2 months to flush it out of your system before you start trying to concive. i'm starting on tue so i'll keep you up to date on how it makes me feel and some thing that I can offer...hope to hear from you soon.
Hello everyone, i've decided not to take the Reloxefen, risk of heart disease, risk for clots, and fluid retention, and hot fashes dosnn't spell worth it especially when it dosn't cover the ER- cancers that BRCA 1 gears for. this drug prevents 50% of ER+ cancers (ER= estrogen receptor). so if any of you want to do it i'm not interested i'll do the self breast exams, clinical exams and eventual mammography, surgery, not this pill.
ReplyDeleteUpdate to my family tree of cancers at young ages, my cousin 28 yrs old, tumor 12cm, 5 months pregnant, going for chemo tomarrow, if any of you have faith in a higher power say a little prayer for her and her unborn baby. that all for now keep truckin....lol
I don't think I mentioned how the testing gets done or how you go about asking for such a test. Well I began with the genetics department refreal from a physician at the college, then the ball rolled on from there they told me to look into critical life insurance and ensure that you were not planning to purcha se a house in the next couple years, then go to any lab and get a fairly substantial size needle to draw whole blood (not to scare any of you, the reason it has to be such a big gage needle is so that when they analize it they don't have broken up red blood cells) so ya that's about it takes anywhere from 3 weeks to a year depending on if there is documented famiy history then they know what they are looking for.
ReplyDeleteIt was real easy to get the insurance, if your not a smoker its even easier....smoke free rocks...lol.
before doing the test you can access councellors through any genertics department and or there is psychologists that specialize in the area of genetics...all about finding resources, hope this blog is one of those resorces you hold on to.
until next time, chow
hello; hows everyone this evening...I just wanted to share a wonderful event that I went to in Edmonton called YA THINK PINK it was a fundraiser, fashion show, live entertainment, appitizers, pink champagne, and silent auction in support of young women with breast cancer. It was truly fabulouse....have to do that in every city, it is young hip and fun. for details about event visit www.pinktie.ca chow for now
ReplyDeleteallegra
Hello every one invitiation to the 7th annual HBOC conferenc in Edmonton AB @ the Greenwood Inn, Nov 6
ReplyDeletethere will be speakers, doctors, genetic councelors, I'll be speaking on younger women with BRCA gene, and there will be lunch, snacks, and lots of fun to be had!!!! Go to :
http://www.hbocsociety.org/NewAboutUs.htm for more deatials
chow for now
Hello everyone, sorry for the long pause on my posts. Thing have been happening rapid fire in my world. I'm now back home in Edmonton, and I have ahd the opportunity to speak at the HBOC 9th annual conference. Hoping to spread the news about being young and BRCA 1 positive.
ReplyDeleteI have offered up the idea of having a "ugly sweater party" to meet all the guys and gals affected by this genetic thing. I want to develop a support group that goes out and hangs or can call one another and vent. I was thinking since Christmas is around the corner, maybe it could be a christmas sweater...let me know what you think.
OH and if anyone want to find me on facebook just type a message about BRCA 1 or HBOC and I'll add you as a friend and we can start some support in action....ttyl
bye