Genetic Testing

[SylvieC]

How do you guys feel about genetic testing.  As mentioned in my earlier post my mother Lorraine is in her final stages of her stage 3C ovarian cancer.  I have 2 sisters and this was brought up only once by the doctors.   Doctors did not recommend it.  I do have my family doctor and she sends me for a mamogramme, internal echography and CA125 tests every year.  They did discover a fibrome in the last test but she told me it was nothing to worry about. Do you think being watched carefully is better than actually getting the genetics test done?

Your thoughts please.

Sylvie

[SylvieC]

Thank you all for your insightful input.  Certainly food for though.  I will discuss with my sisters.  My feeling is that I would like to have it done and deal with it if it is positive.

Thanks again :)

Sylve

[Moirapaoletti]

I have just done it...me and my sister. We have a long cancer history in my family and as my mother Brca 1-2 genes are modified, we have 50% possibilities to have this modification in our DNA.
It does not mean that surely you'll get a cancer in your life!!!, but knowing your genes "situation" gives you the awareness of the risk and the chance to fight it when it's not too late.
Doctor explained me that sooner or later they will be able to act on DNA and repair it at the very beginning of our life.
Let's say that this test is more useful as a "civil" duty for future generations...

[Julie*]

My SIL (age 49)was diagnosed with breast cancer 2 years ago- early stage.  She was urged to get BRCA testing by her oncologist b/c her grandmother died of BC and her mother is a 2 time survivor.  She tested positive for the BRCA2 gene.  She went into remission after a lumpectomy and radiation.  At her first PET scan (3 months out) they found a mass on her ovaries and now she is battling OVCA Stage IIIC.  My DH was tested 2 months ago and he is negative for the gene.  Now, another SIL(age 47) has also tested positive.  She went for a CA-125 and vaginal u/s and they found a fibroid that was very large.  They did surgery 2 weeks ago and they found OVCA in her ovaries and fallopian tubes but it had not spread further.  She had a full hysterectomy etc and begins chemo in 2 weeks.  She is Stage IIC I believe.  
My 3rd SIL (age 45) is also in remission right now from early state BC but so far her ovaries are clean and CA-125 is very low.  She is having her genetic testing down in July.

So, we are very happy that the first SIL was genetically tested b/c it paved the way for the other sisters to understand how they can are sadly are being affected.

Good luck to all of you in this awful fight.
Julie

[withe]

The person with the cancer is the best person first tested as this test is very expensive and if the dna of that person shows something than when they test siblings, offspring etc. they know exactly what they are looking for instead of wasting time and effort searching the gene mutation.  I got tested at the urging of a sister, our mother died of ovarian cancer and I had been newly dx at the time.  A lot of thought went into consideration before this test...If positive would I be discriminated against ? Would the test be covered by ins.? Well after much discussion and research NO to question one and yes to question 2 ( not all ins. will ). Turned out I am a product of bad a gene pool, as is my sister  ( who worried and worried and 1 yr after dx, decided to stop worrying and got her ovaries taken out.)  My gyn-onoc, said at the time, you can carry the gene and yes it increases your chances of getting ovc but having this gene doesn't always mean you'll get the disease. That said, it is an individual choice to have this test done as is they way you handle the news and what action you take if it is positive.  Withe

[momofsandj]

My mother died of breast cancer after 38 years of HRT, my sister died of ovarian cancer at 46 and I was diagnosed at 42 with OvCA.  I didn't get tested until my first recurrence.  I figured I'd just make sure my daughter was watched carefully.  I did end up getting tested and have a BRCA1 mutution common to Aschkenazi Jewish women --- I thought it was important to know even though my 13 year old will be checked carefully anyway.  what I have since found is that birth control pills don't help with the BRCA1 mutation I have, but that the life expectancy is almost twice the length with that mutation as just general ovarian cancer.  The more information you have, the more helpful it will be as new developments come down the road.  it is a blood test and if your insurance will cover it, it is something to really seriously consider.  If you have the BRCA2 mutation birth control pills help.......that sort of thing.....and more will be discovered in the near term i'm sure.........

I've spoken to my counsins about having my uncle tested as he was my mother's brother and has had 4 types of cancer...it's not just women that can have the mutation........

The more you know the better off you are.

Good luck

[butterflytc]

I too was tested and came back negative. (no family history of Ovca) my mom died of CLL and non hodkins, but we were told to becareful of testing for it as it is hereditary, but usually comes on later in age, and most die without ever knowing they had it. His reason for not testing was because of insurance. (If we show positive to the test, we could be denied coverage later due to pre-existing disease.) Having Ovca I do not have to worry about it, but my sisters would. It really stinks that insurance can keep people from saving there lives?
   As for BRCA testing,  The Gilda Radner Clubs suggest them, and also helps with questions, as they are doing studies of familial Ovca.
take care
butterflytc

[Brownie3321]

I would recommend the test.  I was tested since I was diagnosed at 27 with no family history of this cancer in my family. They wanted to make sure my sister wasn't at increased risk. I came up negative, thank God. With love, Deandra

[lucymullis]

There's sooo much to learn and remember about this cancer.  That's why we're helping each other.  

Peace to you, too!

[kimmywah]

Thank you for giving this information.  I have seen the BRCA test talked about here before but was under the impression that it was a screening just for Breast cancer.  
See, you learn something everyday on here.  
Will follow up with my doctor.


Peace...Kim

[Sharon2714]

wonderful post my gyn discussed those possibilities with me as well if my CA-125 is high

also he told me i should discuss the pill with my daughters to prevent ovulation
and recommends they get ovaries removed at 35 if any of the BRCA comes back positive

best of prayers ladies
sharon

[lucymullis]

The brca (breast cancer gene) is the test that is done. It tests for both breast and ovarian cancer.  It is a simple blood draw and sent to the one lab that is patented to do this testing.  You would first meet with a genetic counselor and do a family tree to determine your risk status.  If you completed the test and were found positive, then next your children and any other relatives could be tested.  If you were not positive, they would not.  Ten % of ovca is hereditary.  If you are tested positive, you'd be at very high risk for breast cancer, for example BRCA2 positive women can be as high as 84% for breast and 40% for ovca.  Of course, noone really knows the % for sure.  Two genes have been identified, BRCA1 and BRCA2.
If you are positive, at a minimum you should enroll in a high risk screening program that includes doc breast exams and alternating MRIs and digital mammograms every 6 months.  Just being monitored by a doctor is not enough.  Some women opt to have mastectomies.  
I guess the good news is that BRCA women have be found in studies to have longer survival periods for ovca.
Just fyi...I was not considered to have the "profile" for being high risk but insisted.  I am BRCA3 positive and so is my 21 year old daughter.
Any questions?

[SylvieC]

i was told that a very small% could be genetic and I was told that there was a test.  I never persued further but I was told there was a test but do not know much about it.  If anyone could enlight both Kim and I, that would be great.

Sylvie

[lucymullis]

do a search on brca1 or brca2.  There's a lot of info in the archives.  This discussion comes up periodically on the forum.

[kimmywah]

I didn't know that there was a genetic test for Ovca.  Can anyone tell more about this?

Kim