Tested for BCRA without family history?

cp418

Has anyone been tested for BRCA without a family history? If you had NO family hx and were tested then why was the test done? I've been reading some posts here for women dx with BC at age 50+ and tested for BRCA. Some mentioned they had no family hx and their test came back positive. Maybe I misunderstood and thought this test was only offered to younger women? When I had inquired about this test I was told NO because I have no family hx and was age 49. Thanks Joann

shokk

My onc insisted that I be tested.....I was 49 and had one distant reliative that had bc.......she said I had a 4 to 7% change that I would be positive....of course ins didn't want to pay but she called them herself and they ended up paying....I was negative......

Anonymous

I had the test - no family hx except one aunt with ovarian cancer that was not genetic, age 37, IDC was small and caught early but very aggressive. My insurance co approved payment for the test. It came back negative.

Beesie

Joann,
"Family history" is a tricky thing. I was tested and do have a family history of breast cancer - my mother and one of her sisters both had it. My mother was older when she got it, but her sister was pre-menopausal.

Interestingly it wasn't the family history on my mother's side that caught the eye of the genetic counsellor. Because my mother came from a large family and no one else had breast cancer, ovarian cancer or prostate cancer, it seemed very unlikely that the gene would be found there. It was my dad's family that raised more questions. On this side, there is no family history of breast cancer or ovarian cancer, but there were several cases of prostate cancer. And the reason that there was no breast or ovarian cancer just might have been because in 3 generations, only 3 women in the family had reached the age of 30. Of those 3, I had BC and my aunt had a hysterectomy when she was in her 30s (for what may have been a pre-cancerous condition).

I think when some women say that they tested positive for BRCA but have no family history, they think only of the women in their family, and only of BC. For BRCA testing, there's much more that's relevant and I'll bet that there could be ovarian cancer or prostate cancer somewhere in the family (or even pancreatic, stomach or some other cancers that are also related to the BRCA mutation).

As it turns out, I tested negative.

By the way, testing for the BRCA mutation is more likely to be suggested for someone who is young but has no family history, rather than someone who is older with no family history. That's because they are looking for a reason why a younger woman got BC, since non-genetic BC is less likely to occur in young women. For women who are in their late 40s onward, non-genetic BC is unfortunately pretty common. The late 40+ crowd are likely to be tested only if there is family history. In these cases, it's so that the woman is aware of her higher risk of a 2nd BC or ovarian cancer. And it's to provide information to the rest of the family, who may also be affected. I was 49 when I was diagnosed.

cp418

Bessie - Thanks once again for keeping these complicated details in perspective!! Joann

Anonymous

Bessie--I went to a hospital seminar the other day on "cancer and genetics" given by a board certified genetics counselor for the staff (the primary focus was on breast ca and colon ca). She said something very interesting that really surprised me. She said they now recommend that anyone who tests negative should be retested in 6 to 12 months as they are continually coming up with "new enhancements" to the genetic tests making them more and more accurate. There have been people who test positive on the 2nd test that initially tested negative. They are now putting the recommendation in writing so people will have the most accurate results. My oncologist has always said he thinks I'm at low risk for BRCA, but after that seminar I think I'll at least sit down with a genetic counselor and find out more info.

Beesie

My genetic counsellor didn't specifically suggest that I get retested every few years, but she told me that at any point in the future, if I read about any new development with regard to either the BRCA gene or any new BC gene that is found, I can call her up and get myself retested. So she left the option up to me.

laureniris

That would be me . . .
I tested BRCA2+ without one single KNOWN relative with cancer. I was 46 and am now 47. My mother's was born in Germany however, and I wonder if she had relatives who were BRCA positive but were killed in WWII before cancer was diagnosed.
For what it's worth, I am relieved to have had ooph, which I decided to do after BRCA diagnosis. In fact, finding out that my ovaries were cancer-free was one of the most encouraging aspects of this whole ordeal. I had already decided to have BilatMat prior to BRCA testing. Let me know if there's any other info that you would find helpful.
Lauren

Anonymous

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wallycat

I am waiting for BRCA results as I type.
I have no history of cancer in my family but that is because my father is Ashkenazi jewish and most of his family was killed or missing for information. My mother, Catholic, is still alive with no cancer. I was diagnosed about 1 month prior to turning 50 (which will be the 16th of this month). Because I was technically under 50 and had the Ashkenazi background, I was tested immediately.
They first check the 3 most common areas it would show up (which I tested negative for), so they are running the 50-line test to see if it shows up anywhere else.
My odds are less, but I too want to know so I can act accordingly with surgeries.

LisaSDCA

I had to push to be tested. An initial evaluation shows me with only one relative with BC, but this one, my sister, was diagnosed at 29. That's a big red flag. I was also diagnosed pre-menopausal, but at 48. No BC in mother, aunts, cousins, etc. Fortunately, we are a family that has extensive genealogic records, and I was able to point to the fact that on my paternal side, I was the first woman to live past 35 in 150 years. There had been no women born in the last three generations, though, so the typical genetic survey they do for pre-testing showed me at very low risk. There is no Ashkenazi or Icelandic connection either, reducing my chances even further.
My BRCA-1 was positive.

Lisa

Beesie

Lisa,
I'm curious - was there prostate cancer among the men on your father's side of your family?

My dad's side of the family wasn't too different than yours in that there've been only 3 women (myself included) to live past 30 over the past 3 generations. One of the others, my aunt, had a hysterectomy at a fairly young age. So there wasn't much female history there. But there was male history, and that includes a lot of prostate cancer. That raised a red flag on my pre-testing genetic survey since I was asked about any form of cancer among all the women and men on both sides of the family.

As it turns out, I tested negative.

LisaSDCA

Beesie, there was no prostate cancer on the BRCA-1 side. In fact, when (in my great-grandmother's generation) the women were dying at 31, 33 and 35, the men were living to their 90's! My paternal grandfather lived to be 90, also. However, my father died of metastatic melanoma at age 46. Although my mutation supposedly does not predispose to melanoma, I believe that the fact of the mutation being at a site that controls cell replication had some influence in the course of his disease.

My surviving sister has tested negative for BRCA-1 but my brother has not been tested since our mutation shows such little activity in male family members. I'm praying about my 22 yr. old daughter who will be tested before long.

Lisa

Beesie

Lisa, thanks for the reply. I agree with you about the melanoma. It's also possible that your father might have gotten prostate cancer had he lived longer, although the risk of that isn't nearly as great as the risk of BC and ovarian cancer.

Good luck to your daughter - this is one gene that she hopefully inherited from her father, rather than from you!

gracejon

I saw a genetic counselor with my oncologist's blessing. It was the absolute most worthwhile thing I did. I really got a huge amount of educational value from the visit. I was a bit on the fence about necessity with history of a few cancers in a small family. I do see more value in the genetic counselor visit than the actual testing.

oldsambvca

I just got my test results today. I was 40 when I was diagnosed, which was the reason for the testing. No other BC or OC in my family on either side...except an aunt on my father's side that was diagnosed with BC after I was.

My father and his father died of lung cancer; the aunt with the BC also had malignant melanoma. On my mother's side, the only known cancer was my grandfather...he died of pancreatic cancer.

My results came back BRCA2+. I had a full hyst/ooph after my bc treatment, so oc is not a concern for me. The genetics dr. recommended at the very least Tamoxifen (Arimidex made me sick), and he strongly recommended mast w/recon. I think I'm still in shock over the whole thing....

Any advice?

Valerie

Unsure131

What does the BCRA test involve? Is it available to sons and daughters if you've had breast cancer? Thanks

PrinV

I too had absolutely no family history and tested BRCA1+.
My advice -check out the FORCE website http://www.facingourrisk.org/ -it's all about this.
re what test involves, it's blood test.

lisettemac

I was on the fence about BRCA testing, but my OB/GYN is strongly encouraging it.

I have no family history because I am adopted. So, it's just a blank.

Plus, I have a long history of endometriosis around my R ovary. So, OB/GYN says if I am BRCA+ and still pre-menopausal, there will be no way to monitor me properly for ovarian cancer because they won't be able to tell what is endo and what is cancerous. I had this problem before, when I was pg with my first daughter. Radiologist thought my endo was malignant. Scary stuff.

So, I guess I'll be heading to the hospital for the counseling and test in a few weeks.

ktwist

I was dx at 37 (last year) and no significant family history..Great Aunt with invasive BC and Grandparents with Colon Cancer in their 70's. It was suggested that I have genetic testing because of the size/grade of my DCIS and age. I tested neg for known genes and an undetermined gene was found. They will let me know on that as time goes by and they know if it has a link to BC.

PrinV

I had no family history of BC or ovarian cancer & tested positive for BRCA1. A certified genetic counselor can help you decide.

ijl

I was tested due to the fact that I was 46 and an Eastern European Jew. I had a few Great Grandaunts on my Mom's side with BC but in their 70s
One thing that genetic counsellor pointed out to me was that on my father's side there were mostly men for a few generations. So there was no way of knowing whether there was gene mutation or not.
My insurance even approved the full sequence testing : 3K test. I also worried about this, the insurance is not known for spending money and I got aprroved very quickly.
The tests came back negative though. I was more happy for my daugthers, since I was dreading telling them in case of positive results.

lisettemac

Anyone pay for this test out of pocket to avoid it being in your med records? That's what we're considering doing. Our hospital will test you under an anonymous number and release the results only to us. The counselor said if it is negative, many people then submit to their insurers. I'm worried if I'm positive I'll never get life insurance again.

GreenHeron

My onc finally got me to take the brca test about a year after my treatment ended...I had a false alarm surgery and wanted the bilat mast...I was 43 with no family history. And wala...

I also breathed so much easier after the ooph and the ovaries were clear. The bilat was also a relief.

You can pm me with any questions!

Flashdif