Genetic Testing?
Comments
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Hi Ladies,
I just got home from an appointment with a Genetics Counselor discussing possible Genetic testing. Have any of you gone through genetic testing? I am just trying to decide what to do?
What are the benefits? Am I ready to face that I have BRAC1 or BRAC2? Did any of you do this testing? Would you be willing to share what happened after testing? Did you change any of your recurrance treatment choices (MRIs, elective Masectomy, etc)?
I just would love to hear from someone about how you made the choice to go ahead with genetic testing or not....and how that changed your Breast Cancer care.
Thanks ~
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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.
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Thanks for the reply. I am just trying to decide to do the test or not. I am not sure if I am ready to deal with the results. I haven't had the best luck with test results - just a little scared!
Also, not sure if I would be ready to make more surgery decisions based on what the test might show.
Do you have any kids? If yes, would genetic testing change any of their preventive measures?
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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.
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Hi - today is my first day here. So still getting up to speed bare with me. It is nice to have someone to talk to.
The only way I have been able to do this is 100 miles an hour. I have a little sister who is concerned she is 28. The information from the BRCA would benefit her immediately and my daughter when she is older. I like you have failed so many of my tests. I would do anything not to go through this process again if at all possible. I would take whatever measures possible. I knew what my decision would be if it was positive. I think that made it easier. Although the thought of another surgery I agree was hard to fathom. My sister although has not had children so it is a very different decision for her to take the test. You will decide in time maybe sleep on it a while.
It was odd to me that this test wasn't given in the very beginning to make a decision then about the mastectomy. Rather to do this at the end of the process??
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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
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CalGal,
Thanks so much for that info. I was diagnosed in Nov and I have thought long and hard on this. To my knowledge, I don't have any family history of bc. I had just turned 42 when I was diagnosed and I want this test done. I have 4 daughters and I want to know if this is something that they need to be concerned about.
Teresa
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Thanks for replying...I appreciate your help. I am really having a hard time deciding what to do. I was dx at age 38. I had a total hysterectomy 3 years after dx. At the time genetic testing wasn't as available as it is now.
I have two daughters (16 & 12). I am considering the testing also because of them. Although, the genetic counselor said they only have a 50% chance of having the gene (if I am positive for it).
Did anyone have the testing a few years after finishing treatment? It will be 5 years for me this Spring.
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Hello,
I was diagnosed in Sept 06, with a 1 cm lump. My breast surgeon suggested a lumpectomy with mammosite rads. Once I went to the oncologist, decisions changed remarkably. With a strong family history of bc, (my mom, sister, aunts, cousins, great grandma), my onc. suggested BRCA testing before we decided on what treatment. Needless to say I found out I am BRCA1 positive, so I ended up with a skin/nipple sparing bi lat mast with implants. I was told that my chances of reacurrance were 87% within 2 years if I did not get this surgery. Years previously to BC i had a hyterectomy. I have 2 girls who now have a 50% chance of being positive since I am. Both are getting tested. Insurance companies cannot find out the results, and it is a law they cannot deny you treatment if you get this test. I never had a problem with ins. I believe the more you know trying to fight this beast, the better off you are. Why go through everything twice! When my cousin did the BRCA testing years ago when it first came out, she tested positive, had a bi lat mast and hysterectomy, no cancer at the time, and is still cancer free. Her sister died a few years ago, along with my sister, because they did not want to know. In my opinion I would get the test. Hugs, Peggy
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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
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I took the test while doing chemo. I had a low risk of BRACA with no family history that I knew of. Still, I have a daughter in her 20's and wanted to know if she should start mammos early. That was my biggest concern at the time. My only risk of it was that I'm an Ashkenazi Jew.
I don't have BRACA and so my daughter is at the same risk as others her age with no family history.
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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?
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Cookie - I was just in for the testing. My Dr. said the gene can be passed from paternal or maternal. I have no family history, never smoked, and am 34. I tested negative. My sister and I have the same father. She is being tested. Any of my doctors could order the test. I was given a counselors name at the surgeon. You have to have 3 appts. One to discuss everything, the second for the test, the third the results. My OB ordered it they took blood on the spot and it was back in a couple weeks.
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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.
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CookieOkie -
GOOD GRIEF re: your onc & surgeon!!! Stunning that those medical professionals could be so wrong re: BRCA. They are completely wrong:
- NOT true that BRCA only goes thru the female side. It is carried by both males and females. There is always a 50% chance of the BRCA mutation being passed on.
- NOT true that the BRCA mutation is only found among the Jewish population!! While it is true, that there is a higher incidence of BRCA mutations in the Jewish population; the BRCA mutation has been found in all races. It seems that the mutation developed in isolated populations way back ... for example, Iceland. There is also a high degree of those with a non-Jewish Eastern European background having the mutation, such as myself.Your family is a perfect example of how the BRCA mutation could be hidden (mostly male ancestors). Good for you that you're informed. I'd go to the FORCE website (www.facingourrisk.org) and get some specific info to show your onc and surgeon. I'd push them to get the test. Or you could contact Myriad Genetic Labs at 1-800-469-7423.
Best to you,
CalGal
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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 -
Hello,
I asked my onc to test me for BRCA and she said my insurance carrier would not approve it since I was older than 40 when diagnosed (42), and did not have any family history. She told me all this at the same visit I was told I had lung mets, so I didn't really drill her on it.
I am still thinking about persuing it. I have a 21 year old daughter and I want to find out for her.
love,
Watson
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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 -
Watson, your oncologist, along with Cookie's (especially Cookie's) needs a good whap upside 'da haid! Any premenopausal triple negative breast cancer will certainly be approved for genetic counseling. Just get the referral from the jerk doctor and let the insurance co. take it from there, The doc is not the authority - obviously.
Cookie - tell your oblivious providers that all of my aunts, cousins, every female and my mother on my maternal side are all cancer-free. However, my great-great grandmother, my great-grandmother, and three of her sisters all died before the age of thirty-five. My great-grandmother left three young sons. One was my grandfather. He lived to be 90, but passed the gene to one of his two sons - my father. He died of cancer at 46, after fathering four children.
The eldest was the first daughter born in three generations. She was diagnosed with receptor-negative breast cancer at 29. Tiny little node-negative tumor. Lumpectomy and rads recommended - and completed. Metastatic to brain, bone and liver in nine months' time. Died at 34.
I am the second of those four children. When the BRCA test became available, I begged for it - but I could only demonstrate ONE first degree relative with premenopausal breast cancer. Didn't qualify. S#IT. Then my diagnosis came and eveything changed. I didn't even need to wait for the biopsy to know it was malignant. I didn't need to wait for the pathology to know it was triple negative. And you bet they approved the testing now. And for my younger sister, too. Of course, I am BRCA-1 positive, blessedly my sister had the 50-50 roll of the dice go her way and is negative. My brother doesn't want to be tested. Both of them are childless by choice. I have a 23 yr. old daughter. If she is negative, it will all end with me. My grandbabies, my great-grandbabies - ALL will be safe. But she is 23. She is still immortal - she doesn't want to get tested. Not yet at least. She'll get her mammograms alternating with her MRI's, but she doesn't want to know. I want to give her a good shake, but I'm not that kind of momma. She's a grown woman and she can make her own decisions and I love her. ARRRRGGGHHH!
Anyway. CookieOkie, chances are good that you do not have the gene. But this is what we have genetic counselors for, to help determine if you should be tested because of the known or unknown factors in either you maternal or paternal backgrounds.
Good luck!
Please forgive my ranting,
Lisa
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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." -
OK - I have decided to go ahead with the testing too! It took me a couple of days to absorb what the genetic counselor was saying and to listen to my bc sisters here on this discussion board. But, you have convinced me that I need to pull my head out of the sand here - hiding won't change the facts. I am so worried about what I'd do after I find out that I have BRAC1 0r BRAC2 that I was thinking of just not finding out. I need to just go forward one step at a time. Do the testing...then deal with the outcome.
For those who have had trouble with getting the testing done, the first appointment with the genetic counselor was just about $300. My insurance had no trouble at all with paying for this first meeting which is just a consultation with information gathering. We discussed my family history (which like many here have very few female relatives-5 counting myself). My maternal Aunt has bilateral bc dx at 60 (triple neg.) and myself dx at 38 (triple neg). That is all the cancer in my family. The genetic counselor ran my information through a computer program which shows that I only have a 10% chance of being BRAC1 or BRAC2. Yet, because of the triple neg. & young age at dx...she recommends having the testing done. Luckily my insurance will pay for the testing, if the genetic counselor recommends it - yippee! She did tell my however, that the company that does the testing (some company in Utah) - will work with you and your insurance company to get the testing covered. So those of you who are having trouble with insurance companies, might want to look into that (get help from the testing company).
I have heard that I should keep the genetic testing results out of my medical record. Has anyone else heard this? and how is that done?
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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
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Hi,
My oncologist asked me yesterday as there are numerous types of cancer on both sides of my family if I wanted to do the testing. Knowledge is power!
10 inches of snow last night. Looks absolutely beautiful!
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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!!!!
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Watson, I didn't know that the onc refused you the test. At CC they set you up with a genetic counselor who reviews all your family history, and then they decide whether or not to test. You can embellish! I don't think it should be the onc's decision. See what MD Anderson says.
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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
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Please have it done. Knowledge is power...nothing to fear. It saved my life. After I discovered I had the brca1 (my risk was 8%)mutation, I had my ovaries removed and they found fallopian tube cancer in situ. It was so small they didn't have to even treat it. Just did the the exploratory surgery and it remained stage 0.
Good luck,
Wendy
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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.
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My oncologist office, is talking with my insurance company about getting the test done. MOst insurance companies, will NOT pay for this, There is no breast cancer history in my family at all, but I hav two girls,, 18 and almost 20 yrs old..Just waiting, to find out IF and when I get this test done.. Twink, hugssssss thinking of you always hun
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Hugs right back at you GE... how're you making out? Have you restarted the Xeloda? I think about you often.
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