Genetic Testing?

Hello - Yes. I completed the BRCA's after all treatments were complete. If it were positive I would have gone forward with a double mastectomy and hysterectomy to reduce my chance of reocurrence. http://www.myriad.com/products/cancerrisk.php is the site with additional information. The test can also confirm you are negative.

I had the genetic testing done because both my grandmother and my aunt had breast cancer.  I tested positive for BRCA1.  At first I was shocked but eventually I accepted the results and I was glad I did the testing.  Originally, I was only going to have my left breast removed but now due to being BRCA1 positive, I have decided to have both breasts removed with immediate reconstruction.  I also had the testing done because I have a 4 month old daughter.  My doctor recommended that she gets the genetic testing when she is in her teens and she'll have to begin mammograms in her 20s.  Also, due to my BRCA1 positive results, my doctor has recommended that I have my ovaries removed by the time I'm 35.

BHull -

As the only daughter of an only daughter of an only child who all had bc pre-menopausal, I had a strong family history of relatively early onset bc as well as bi-lat bc, and did not know the significance of it all.  

As one who would not have done pbm's; I figured that mamm's since age 25 and monthly bse's would be enough ... it wasn't.

At this point, the brief version of my bc is as follows (and this relates to reasons to find out if you're BRCA or not):

9/04 - Bi-lat bc, invasive & DCIS.  Clear SNB.  Had bi-lat lump's and did 38x rad'tn.

12/05 - Recurr bc (evident by overlooked on my 10/05 mamm), liver mets and the "incidental find" of likely kidney cancer.  Note that my nodes were clean and still are - despite having mets.

2/06 - Figured what the heck, I'm probably pos for BRCA1 - and had the test.  Had previously met with a genetics counselor back in 9/04, but she was caught up on the percentages of my being positive and my DH and I found her annoying and did not pursue the BRCA test at that time.

3/06 - No surprise, considering my family and my bc history and being a trip neg, that I was pos for the BRCA1 mutation.  With the results coming after my mets dx, quite frankly, it was no big deal (compared to the mets).

7/06-7/07 - NED for liver mets & bc!

7/07 - Dealing with a lung met. 

8/07 - On the PARP Inhibitor clinical trial and doing well!   My lung met is shrinking!  For this trial, you must be BRCA1 or 2 pos, failed one chemo in the mets setting and have measurable disease.

During my period of NED, I was looking into (research and 3 consults with PS's) bi-lat mast & recon.   Having had rad'tn on one side made implants (my preferred recon method) on the rad'td side quite risky.  While there are a number of other methods of recon, if I was to have a bi-lat mast, I wanted implants for a number of reasons. 

While I can't go backwards, knowing what I know now, I likely would have done things differently. 

With BRCA1 (80% of whom are trip negs - but it does not go the other way, as only 5-10% of all bc is due to BRCA), there is a 80% lifetime (to age 70) risk of bc, with corresponding much higher rates of bc at younger ages.  There is a very high risk of bi-lat bc.  The risk of oc is much higher too.

From where I am now, with mets on a clinical trial for those who are BRCA positive, I'm very glad to be on this trial - and it is the only good thing that I've found about being BRCA positive.

A great website for thorough info on BRCA, including testing and decision-making, is FORCE (Facing Our Risk of Cancer Empowered) at www.facingourrisk.org   I attended their conference last May - and it was very thorough.  Most of the women (and a few men) in attendance were either "pre-vivors" (having had pbm's or oophs due to their BRCA status) or were considering the BRCA test or being BRCA positive, were considering their options.  This conference had the latest and most thorough info.

When a parent is pos for the BRCA mutation, there is a 50-50 chance of passing it on to a child (male or female).  The next conference is this May in Florida.

Feel free to pm me if you want to discuss this more. 

CalGal 

Although I don't have a family history of cancer, a cousin on my dad's side did have bc and died of it.  From what I have read about the BRCA genes, in can come from your father's side, i.e. my grandmother on my dad's side had several boys and only one girl, it was her daughter that had breast cancer. So, knowing nothing about this testing, what I'm talking about, etc. I think I should have the test because I have one daughter and one granddaughter. Seeing that my paternal grandmother had so many boys (maybe 7 - 5 died in Poland many many years ago as children), one daughter and that daughter had bc and we're of European decent, I figure I am a candidate to have the test done. I read an article that said it can be passed by the father, i.e. a paternal grandmother who did not have daughters passed the gene to her sons who in turned passed it to daughters or something like that.

My onc and surgeon both said no, there has to be a history on your mother's side or you  have to be Jewish.

Don't know if I made myself clear but bottom line, should I be tested because of the 3-, for my daughter and granddaughter? If so, how do I get someone to order the test?

Thanks

Cookie

The BRCA1 and BRCA2 tests if positive recommends bi lat mast and hysterectomy? Correct? I was negative so I did not have to continue. I had my tubes tide. The OB is going to do a ultrasound on my ovaries and a C125? This is the next step after the BRCA. Are you familiar with that?

I did the genetic tests after I had a bilateral mastectomy at the urging of my surgeon.  If I had tested positive, I intended to have my ovaries removed to avoid ovarian cancer and to reduce estrogen.  I tested negative, so I am just taking Tamoxifen.

I have no family history of breast cancer on either side of my family that I know about, but the HMO approved my being tested for BRCA simply because I'm triple neg. and an Ashkenazi Jew. My mother doesn't know who her father is, so if there's a family history from that branch of the tree, this would be the only way to find out.



I have not passed down my genes to anyone, nor will I, but the onc said she'd recommend removing my ovaries if it came back positive because ovarian cancer is harder to detect early.



So I did it. Waiting for the result

Watson - this all seems so arbitrary to me & really does depend on your HMO and/or how well your onc can present the need.



I'm 20 years over 40, but they gave it to me. If they won't give you the test, then maybe they'll give it to your daughter?



One of the things I find interesting is that the onc told me the test costs $3500. Yet there are web sites that will analyze your entire dna for $1000 - for that money you get your whole genetic background, not just one little gene.



Health care costs out of control? Where did they get that idea...



Susan

I posted the note below on an older thread but thought it is relevant enough to your conversation here to post again - it highlights another benefit of genetic testing - it can not only help your female but your male children and relatives take enhanced monitoring or preventative action - BRCA is not exclusively linked to female cancers. And for those considering whether it is worth getting genetic testing, the information below is something to keep in mind...



"... Though I don't have breast cancer, my dad has BRCA2 linked prostate cancer and we are looking at options. I want to share something that may be relevant to your community given the information posted in this thread. In our family, the pattern in similar to the story posted - lots of boys in the last generation and before so BRCA2 was not obvious. But high rates of prostate and bowel cancer became evident in the last few years. That all these boys with early onset prostate cancer are BRCA2 positive was picked up only because of some great work by a genetic cancers database here in Australia. Turns out some distant relatives we didn't know tested positive to BRCA had put details on the register. When the prostate cancer in my dad was diagnosed we were linked with the registry and we found he tested positive. This caused a chain reaction, with many young women and men in the next generation being tested and testing positive. Probably, finding this out has saved the lives of many of my relatives who never otherwise would have had any idea they were at increased risk of bc and oc. Now they can do proper monitoring and take other steps if they want to. The message, I guess - if you have high rates of prostate cancer in your family, and a lot of boys in preceding generations, it may be worth wondering about the presence of BRCA. It matters now given that treatments are becoming much more targeted. Sorry to but in to your discussion, but perhaps this information will help someone."

HI, I don't have a family history but I had the test done. I wanted to know. I figured if it was positive then I would have my ovaries removed and a double mastectomy. I tested negative but I am still going to have a double mastectomy. I DO NOT want to go through this again. Being triple negative could have it come back in the opposite breast (no guarantees of course) and I don't want to take that chance. I didn't want to have one natural breast and one artificial. Since I found out I can do reconstruction at the same time as the mastectomy I am going to do it. I feel confident about my decision.

I had only one appointment with the genetic councelor and she did the paperwork and blood all at the same time. Myriad labs verified what the insurance would pay and called me to say how much I would owe and asked if I still wanted the test to be done. I said go for it. It is peace of mind for me now. My daughter also knows and that helps her.

I know this is just ramble at this point, sorry.

Take care ladies and enjoy your day.

Penny

And sometimes there is good news ... I just found out that the BRCA test came back negative. I wasn't really thinking about it that much, but it does mean I won't have to go through some of the stuff like the ovary removal. Yeah!!!!

I did have the BRCA test after I had my L mast and completed chemo and rads. My results were negative; however, the genetic counselor assessed my risk of developing bc in the R breast at 33%. I had a prop mast of the R breast.

My father had nh lymphoma; my great grandmother, grandmother,  aunt - bc; my other aunt - bone ca (all of these ladies on the same side of the family).

The negative result gave me a BIT of piece of mind, but as the counselor mentioned, I could still have a hereditary cancer for which a test has not yet been developed.

Best of luck to you.

Raye

I've started the process of having the genetic testing done.  I was diagnosed within months of my 50th birthday.  I am only aware of one female relative who had breast cancer (maternal aunt).  That side of the family is rife with cancers though, from prostate to liver to lymphoma to CLL...  fatal in many cases.  When I first asked my onc about this, she told me the insurance company would likely not approve it becuase the cut-off age is 50.  The fact that the mammo just before my birthday missed the tumor and it took me a few months before I noticed it and a few more months of misdiagnosis and test delays due to the holiday season didn't count.  In any case, I asked her again during my last appointment and she agreed this time (seems like she forgot the 50 year old rule?).  I have two daughters and want to know for their sake more than anything else.

Hugs right back at you GE... how're you making out?  Have you restarted the Xeloda?  I think about you often.