Gene Test Risks?

MothersDaughter

My family has a genetic history. My mom died of breast cancer at the age of 32 after having had it for 6 years. There are women on both sides of my family who have died from the disease. I know it is hereditary, and I know I am at high risk.

My question is this: Will getting the gene test and/or the following preventative surgery affect my chances to get health insurance later? I am almost 22, looking at a job in the education field, and I can't afford to not have health insurance (I'm one of those who always has a cold). However, I recently had a scare, and while it wasn't anything serious, it has really got me thinking about these options. Initially my dad scared me off of the test by saying that it would keep people from insuring me, but this seems irresponsible to me, especially if I have a preventative mastectomy.

What would you do in this situation? Do you know if this is even an issue, with the insurance?

smithlme

Please check out www.facingourrisk.org. It's a web site decicated to BRCA 1 & 2, genetic breast and ovarian cancer. You will find a wealth of information there...

Linda

PraiseTheLord

only get the genetic testing if you get cancer, that's what  i did

smirks44

A quick Google search tells me this: "Wed., May 21 2008 — The President has signed into law the Genetic Information Nondiscrimination Act (GINA) that will protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. The bill had passed the Senate unanimously and the House by a vote of 414 to 1. The long-awaited measure, which has been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination."

As suggested above check out www.facingourrisk.org and ask your question there as well.  You will get some great reassurance I am sure!!

With all due respect to Liza (after all, these are very personal decisions) I do believe there is a huge advantage to knowing your genetic status before getting cancer!  You can do high risk surveillance, or as you have mentioned, you can have preventative surgeries.  However, it is usually best to test a family member with cancer first.....I would strongly suggest that you speak with a certified genetic counsellor.  They will be able to explain everything to you and help you make the decision that is best for you.

Another great website to check out would be www.bebrightpink.org  It is a site for high risk young women like yourself!  The site was founded by a young BRCA1+ woman who had a preventative mastectomy.

Good luck!  These are tough decisions!

Smirks

(BRCA2+, preventative ooph Dec 08, mastectomy with immediate reconstruction Sept 08) 

Anonymous

I read the other day that the law (to prevent discrimination due to your BRCA status) will be extended to all the states by May 2009.

Deirdre1

Yes all above is true and this is a very tough decision - I personally do not trust the system just yet.. many doc's are use to discussing patients to other doc's as referral info and let's just say I'm not convinced the insurance companies won't find a way around this - I could be wrong, but I have told my kids and neices (and nephews by the way) to allow the older individuals closest to them in their lives to do the test, very few will reject the idea since most older individuals have their lives "set" (not all I know but many more than the young ones just starting out).  If you do go to genetic counseling hold the information as close to your vest as possible.. Discuss it with you PCP and TELL him the information is not intended to be written in the file.

Your mom would want you to protect your selve as best as you can - so I'm suggesting that if you have the test, hold the information as close to your vest as possible.  It's now protected info so they can't or shouldn't ask it on forms but it's your job to keep it confidential too..  Good luck and I hope it comes back negative!!! Best

MothersDaughter

Thanks everyone. I went ahead and decided to get the test...and it came back negative on all counts. I was so relieved. Thanks for your advice and I hope that you all are just as blessed as I have been this year.

snowyday

You have come back negative thats great but get yourself insurance now like a term policy or life with the added riders in case of sickness.  Good news for you, and hope it stays that way.  Big hugs.

bhope23

I'm 23 and Brca1+ and brca2+. My mother died at 29 and grandmother at 39 I had the same thoughts you did. I went ahead and did the test in the hopes that my results would be negative and I would be worry free Now, that I have found out it was positive, I'm sure glad i did the test. Although, It's what you do with the results when you find out.

charten118

I have a question ,my Mom first was told she had Breast Cancer at the age of 56 ,she just decided to do a mammogram she never had any idea she would find out she had cancer ,at age 59 one day after her Birthday she passed away, again we had no clue that the cancer had spread to her liver and chest,nor did her doctors ,I have tried to get info on the cancer whether she had a BRACA test done and the doctors will give me no info ,cancer of all sorts is through my family ,I was wondering if anyone new where I could get tested ,I live in Oshawa ,just outside Toronto area ,my doctor has no clue about the testing ,so I am hoping to get some answers here ,thank you so much for your help ,I am 34 now with 2 young children and would like to take any steps to make sure I am here for them,

smirks44

Hi Charten!

You will need a referral from your family doctor to a genetic counsellor at a familian breast and ovarian clinic.  I live in Bolton Ontario and was referred to the clinic at North York General Hospital.  My sister lives in Whitby and was referred to the clinic at Women's College.  You will need as much information as possible about your family's cancers (who, what kind of cancer, age of diagnosis).  The counsellors will use that information to determine if testing is recommended for you.  It is preferrable for testing to begin with someone who has already had cancer, so if there is anyone alive in the family with a cancer history they may want to start there.  

Hope that helps! 

Leah09

My Mother had to have a double mastemony due to breast cacncer in both breast.I just went for my yearly mammagram and they found a mass in both breast.The year before last i had cyst removed from my left breast (5 Solid)and now it seems that i may be facing the same decision in both.With my families history i will opt for sugery instead of keeping something in my body that could possible be threating me later in life.Good luck to you .Ask as many questions as you wish and be sure to find out all of your family history concerning there cancers types etc.Will keep you in my thoughts.

Leah09

Daudine

Please don't wait to be tested. Insurance companies haven't started looking at genetic testing yet but won't take long before they do. Get insurance right now before they start asking for genetic testing. I got tested in November 2007 and got insurance right after.

I am 38 and BRCA-1 positive. My mother died from a second breast cancer at 64, first one at 51. My aunt died at 42 of breast cancer another one at 38 from lung cancer, an uncle at 51 from colon cancer.

I had my ovaries removed last March and I had bilateral mastectomy with reconctruction last May though I have no cancer. My chances were too high (90% breast cancer and 65% ovarian cancer). I don't regret anything though it was a hard road to take.

CarynRose

Someone mentioned that you should only get the genetic test in you got cancer.  NO NO NO NO!!!!!  For Heavens Sake NO!! 

 First, get genetic counseling.  Then, when you have an idea of what you would do if you were positive, choose what you want to do.

Next, buy LIFE INSURANCE before you test.  Get a good amount and NEVER let it lapse.

Next, when you get a job, get medical insurance and never ever let it lapse.  You can't be punished if you continue to have insurance throughout your lifetime....even if it means you have to pay for COBRA.

Then, if you are BRCA positive (especially BRCA1+), seriously consider prophylactic surgeries BEFORE you get cancer.  A body can do so much without having to deal with chemo and radiation as well as the high chance of recurrence.

Take it from me.  I'm living the other way.

Caryn