Posted January 28, 2010 By bailey
Hi I asked the oncologist about the genetic testing for myself since I have a 13 yr. old daughter and my aunt and cousin both had breast cancer too.
Oncologist said you have to fit the protocol due to government and how expensive this blood test is.
Gave me the forms and need to get medical records of my deceased aunt and from my cousin too.
I don't really want to ask for the medical records from my cousin or uncle.
has anyone else had this testing done and what did you have to do?
thanks
Posted January 28, 2010 By bailey
I forgot to mention I have 4 sisters, 1 which is my twin sister and 5 nieces too. I think it's a good thing to know about any hereditary concerns (BRCA1 & BRCA2)
Posted March 8, 2010 By tracyc
I have had genetic testing but the results were inconclusive. So I contacted a relative that I have never met and convinced her to send her blood here to be tested too. Thankfully she did and it turns out we have the same BRCA1 variation.
Now the rest of the family is being tested to find out if this unknown variation could have caused my breast cancer. We have had to contact hospitals and doctors to get pathology reports scanned, faxed, etc. This usually requires the patient's permission.
Hope this helps.
Posted August 10, 2010 By layne
I have alot of family members that have passed away from breast and ovarian cancer,so my sister was tested and it came back positive,so I am going tomorrow for the blood work as well,the genetisist that I had a video conference with at the local hospital said my chances are quite high of being positive as well.She said my mother was probably positive as well but she has passed away already.So we will see.
Posted October 15, 2010 By ansley
Hi bailey - owing to the fact that you posted your inquiry so many months ago, I imagine that you've come to some sort of decision about this process. I would be interested to hear how you are doing with it now!
I had my genetic testing done 2 years ago and I am a confirmed BRCA1 "mutant" (I like to think the mutation comes with super powers, like something out of a comic book)
I generally support genetic testing because it allows us to take control of our health to some degree. There are things that we can do to protect ourselves, so why not have all the info that we can?
One word of caution however - it appears that the BRCA genes are not the whole genetic picture. I have a story from my own family as well as other women's families that indicates that testing negative for BRCA 1 & 2 mutations does not mean you are totally "in the clear" - there are most likely genetic components on other genes that we just don't know how to test for yet.
So, I personally believe that all women with breast/ovarian in their family should consider themselves to be higher risk than the average population and keep a close eye on any symptoms. If you test positive for BRCA1 or 2 mutations, you then have access to a full oncological screening program to help you in the process! I am grateful for the screening that I have been receiving because it keeps me calm. I trust my team and feel well cared for.
Posted October 18, 2010 By bailey
Hi Ladies:
Since my last post, I had genetic testing done. Haven't got results back yet. Does anyone know how long it normally takes, they said it could be up to 3 months. thanks,
Posted November 9, 2010 By bailey
Hi ladies
I had my results from genetic blood testing. I tested positive for BRCA1 and negative for BRCA2 gene mutation. Since I have an identical twin sister, they said she probably is too. I also have 3 other sisters who will be tested.
I guess it just gives you more access to screening with tests to catch anything early?
Since I had breast cancer, she recommends hysterectomy and ovaries removed. Has anyone else had this done? Please let me know?
thanks :(
Posted November 15, 2010 By Vi
Hello everyone- I am 28 years old and was told I had the BRCA1 mutation 2 years ago almost to the day- It's taken me a very long time to come to terms with this news and was just wondering how those of you who have tested positive and in a similar situation as myself are coping. I am finding this to be more difficult than expected and have been experiencing thoughts of " I wish I had never found out". As silly as this may seem given that most anyone would feel that being forewarned is forearmed. I feel like I am always depressed and fearing the worst. Anything would help.
Posted December 21, 2010 By ansley
Hi Vi - I'm coping OK I think. Like you, it took me some time to come to terms with my mutation. I'm 27, and I've got a BRCA1 mutation.
It's been 2 years of screening, and I'm a total hypochondriac when it comes to anything remotely related to my breasts or ovaries! But I think I'm doing pretty good because I feel like I can trust my breast screening team, and I have a great GP that allows me to get pelvic and abdominal ultrasounds whenever I'm freaked out about cramps, etc. (I do this about once a year).
I have decided to have a bilateral mastectomy with reconstruction next year (2011). My sister has the same mutation as me, and she had this surgery last year at age 29. She's doing really really great now, looks great, and doesn't have to worry at all about breast cancer. She says she doesn't regret her decision in the slightest. Supporting her through her surgery has greatly aided in making this tough decision. (Don't take this as pressure to choose surgery - it's a very personal decision!)
I also sometimes feel like I wish that I didn't know. But then I remember that I have the mutation whether I like it or not - and not knowing wouldn't make it go away. It would just mean that I wouldn't catch cancer early if it developed. I try to remember all the women in my family (and friends!) who weren't so lucky to know their risk...including my mom who died of ovarian cancer at 52. Whenever I start to feel down about it, I think about what my mom would say - she would say "Snap out of it! You're going to live a long and healthy life because you have this info; so what if it means going in for MRIs every year?" Even in head, my mom's voice is always able to talk sense into me! ha ha
Be gentle with yourself - it's heavy stuff to have to think about.
