Genetic test with no family history recommended to you?

Trvler

I am curious. If it was recommended that you have the BRCA 1 and 2 tests, did you either A) have a family history and/or are Jewish? I am getting a sense a lot of women are taking this test and maybe it is unnecessary. Did your insurance cover it? If not, how much did you pay for it?

JJOntario

I had the test (negative) and I'm also going to a genetic counsellor. I have 2 daughters and it's really important for me to get some understanding of risk levels.

iwannabefree50

I had the test. It made my daughters feel better equipped. I was adopted with no know family history. I ended up paying 600$ more or less, 6 years ago with Myriad. No regrets.

Juliecc

I really wanted the test but I was 46 when diagnosed and the cutoff was 45. I was told that my family history wasn't strong enough. My great grandfather's sister and her 2 daughters had breast cancer. I don't have daughters, just sons, but men can get BC too. Also, maybe my treatment would change if I knew I was BRCA+. I would get the test if you can.

besa

I also have daughters and the information was very important to me. I saw a genetic counselor and I met the criteria for testing -. Insurance covered most of the cost for testing but I would have paid out of pocket for the whole thing if I had to.

The criteria for testing are not just a big family history of bc or being Jewish with bc. There are other cancers associated with these mutations that run in families and other things such as bilateral bc or a young age at diagnosis (though being diagnosed at an older age does not mean that a mutation is not present.) that are indications that a gene mutation is present. Also there are now many other gene mutations (other than BRCA mutations) associated with BC and other cancers. These genes can be inherited from a mother or father. There can be complicating issues like a small family or many males on one side of the family. Consider talking to a genetic counselor before deciding about this. They tend to know way more (compared to a MO or breast surgeon for instance).

Just like our other choices this decision depends on how you feel about things. My thinking about this --a positive would effect my chance of another primary bc and could effect my bc treatment and would also determine my risk for other cancers. I felt the information was important for my children. (Important- if a mutation is found because of testing -- know that the law now prevents genetic discrimination when it comes to health insurance but does not protect when it comes to life or long term care insurance.)

A good source of information about all this is www.facingourrisk.org

ElaineTherese

I got the BRCA test even though there's not much cancer in my family history. Just because your family doesn't have the mutation doesn't mean that you don't. You could be the first whose genes have mutated (for whatever reason). My sister is the first in our family to have a mutation that has produced neurofibramatosis Type 1, and she has passed that on to her son.

krisnanbrandy123

No cancer in my family at all. No one tested for any mutations. One year ago my first cousin at age 42 gets breast cancer and they test her and it comes back that she has the BRCA 1 gene mutation. Both of our fathers are Jewish but have never been tested or had any history of cancer. I was told by a genetic counselor to get tested. Ends up that I also am positive for the same mutation. My insurance covered the genetic counseling, the blood test and all subsequent surgeries. And I am doing fantastic

Trvler

Has anyone been told at all how this gene is passed? For example, some genes are sex linked so you might only get them from one parent of a certain sex. Can it skip generations?

exbrnxgrl

after seeing a genetic counselor , who took a very extensive fam history, which involved interviewing my parents, it was determined that the test would be appropriate for me. I am of Eastern European Jewish descent as well. My insurance fully covered it as well as the pre and post test genetic counseling sessions. I also had to take a short online class about BRCA and pass a quiz

Trvler

Ex: Did you get the results yet?

exbrnxgrl

yes, this was several years ago. I am negative for BRCA 1&2. My daughters were not tested as a result of these findings

Valentine99

My Dr strongly advocated for me to get tested. I have no family history of breast cancer and I was 49 at Dx, but my mother and her father had colon cancer. She also pushed because my tumors were far enough apart to be considered multi-focal, meaning they spawned independently, not as seeds from a first tumor. It's like getting breast cancer 3x all at once. My testing came back negative.

krisnanbrandy123

Does not skip generations. Can be passed by mother or father. If one parent has the gene mutation you have 50 percent chance of having mutation. But no parents were tested and it was just my first cousin with the mutation and my testing was covered. So we now know that both our fathers have the mutation which was how it was passed onto my cousin and to me

MelissaDallas

Tryler, you can get it from either sex parent. Generally speaking if one of your parents carries the mutation you have a 50% chance of having it also.

SpecialK

 I am adopted so have no access to family history.  I was initially a lumpectomy candidate but because I had no family info my oncological breast surgeon insisted on the test before making a final surgical recommendation.  If negative (I was) he felt more comfortable endorsing the lumpectomy, if positive he would have recommended the BMX.  I self-elected skin/nipple sparing BMX, turned out to be a prophetic decision, there were findings in the "prophy" side that had not shown up on imaging.  My insurance covered this test in full, and I was 54 at diagnosis.

Annette47

I was tested because of a mild family history (mother had post-menopausal BC; I don’t have any aunts or sisters so no other women to judge from), I am of Ashkenazic Jewish descent and I was diagnosed at 45. I tested negative.

In answer to your other question, to my understanding the gene does not skip generations, but it also does not guarantee you will get BC, just raises your risk. So just because a generation in your family did not get cancer, doesn’t mean they didn’t have the gene. That said, if neither of your parents have the gene it is very unlikely you will (although spontaneous mutations are possible, they are pretty rare).

Allyme

Trvler,

I had the testing done, and I have no family history. I took the test because I have a 15 year old daughter, and wanted to bring her some relief if possible. The test was negative, which made me happy! The test was also covered by insurance. Hope this helps some.

Trvler

This is so interesting. I am a genetics geek. Does anyone know if the gene is dominant or recessive? I guess if I don't have the gene how likely is it that my daughters have it? They could only get it from their father, right?

MelissaDallas

If you don't have it your daughters don't either unless theyit from their dad orone of them was a very rare first mutation in a family.

GG27

It was recommended that I have genetic testing even tho I have no family history. I had bilateral breast cancer before the age of 50, so I fell within the parameters of testing. I did find out after the fact that my paternal aunt had BC. GG

Trvler

Yes, I just saw an article yesterday linking prostate cancer to BC.

http://well.blogs.nytimes.com/2008/01/08/breast-ca...

I thought this article was interesting.

Trvler

Yes, you do, Kayb! I think I have already been asked to be in 2 studies. Not much to them. Just questions.

Hopefully, that article might put some people's minds at ease. I think a lot of women may be getting surgery out of fear that don't need to. I hate to see that. I am a stats geek, too. I want all the stats they can give me so I can make the best decisions.

ironmagnolia

I was tested because I had a diagnosis of bilateral breast cancer. No BC in my family, but lots of different other kinds of cancers. I did not have the BRCA 1or 2 gene mutations. But when I saw my BS for routine follow-up last week, she told me that they are now testing for 17-24 other genes that may cause BC. She thinks I may be a candidate to be tested for these other genes since I had bilateral BC with no family history. I do plan to be tested for the other genes as I have two grown daughters that I am concerned about.

Allyme

I had the genetic testing, without any family history of any cancers at all. Insurance paid for the test. I was glad to see that I was negative for the gene mutations! I have a 15 year old daughter, and it really put our minds at ease. Oops! I've already responded to this one! Oh well!! Best wishes everyone!!

QueenSansaStark

I had the test done and my insurance paid. My mom was my only first-degree relative who had BC, and she got it at 70, so ordinarily that's not considered a family history. BUT: I got BC at 43 which is younger than average, and I have a small family - I'm an only child, my parents each had only one sibling (both brothers, so no aunts). So my onc OK'd the test and my insurance paid. As it turns out, I'm negative for both BRCA genes, yay! Just some crummy luck for both my mom and me.

If you are like me with a smaller and/or male-heavy family then family history might not be indicative of your actual risk. The genetic counselor at my oncology practice says she works with "truncated family histories" all the time. What mattered in my case was that I was under 50 at diagnosis and my family was so small that a mutation could sneak in undetected.

I don't have kids or nieces/nephews, but I wanted the test so I could tell my cousins on mom's side to get tested if I turned up positive, and because I had just a lumpectomy and if I was at high risk I'd have a bilateral mastectomy - somewhat like closing the barn door after the horse escaped but better than a recurrence.

DocBabs

I had genetic testing at age 57, no family history but my grandmother came from Eastern Europe and was the product of a rape. My insurance paid in full . Just last year my oncologist wanted to do some further genetic testing and once again my insurance paid . I will get those results next month

sherry67

I had genetic testing with no family history.

jlstacey

I had genetic testing with no family history as well. Because of my age at dx, 43, and the cancer is triple negative, my testing was covered. I knew it was unlikely I had a genetic mutation, but those are two red flags and it was better to rule that out.

pebee

I had genetic testing. My dad was diagnosed with prostate cancer right before I was diagnosed and there were very few women in my family tree. Neither of my parents had sisters. No medical history from paternal grandfather, my paternal grandmother did not have any sisters or female cousins. Then, on my mother's side, there were limited female aunts and cousins (my great aunts) and most of them did not have daughters.

The thought was that I could have a hidden genetic component from all of the men in the family. And, since I have a daughter it was important to find out.

The next set of bad news is that other than a pair of cousins - daughters of an uncle, I also have no menopause history. So, that is proving to be fun as well.

Insurance covered it -no questions asked.

sarahsusername

I am in the middle of starting this whole journey!

My mom was initially diagnosed at 37 (she is 58 now with her second recurrence, stage IV) and tested negative for both BRCA genes over twenty years ago in the 90's. So because of that, this whole time, we figured that it was due to stress, environment, diet, whatever else.

Then two months ago, my first cousin, also on my mom's side was diagnosed with breast cancer and we just found out that she tested positive for BRCA (not sure which one). I've been going back and forth with a genetic counselor and when I gave her this new information, she said that more than likely, my mom is positive for one of the BRCA genes -- (that this was all genetic) -- and that since the 90's, the BRCA testing was not as extensive.

My mom is in the process of getting a wider panel of gene testing this time around. This has all been so overwhelming emotionally on top of everything going on with my mom in her current state. Now to know that I might have a chance of carrying this gene and then we have three young daughters. Hoping to get answer soon!

>>> Just wondering, what is the process of gene testing? How long did it take for you to get results?

Trvler

Sarahs: I am sorry about your mom.

I was blood tested. I was told my insurance would not pay for it. I was sent a form to appeal the decision. I guess I will appeal it. I kind of feel like the hospital pushes people into it a little. And given my family history, if it made sense for me to get it, why didn't the insurance cover it? I know. I know. But it seems like a lot of people's insurance is covering it.