No family history, should I do genetic testing?

I didn't do Genetic Testing - it was not suggested that for me there was any reason to do it. Made sense to me as there has been no cancer of any type on either side of my family for at least 4 generations.

Genetic testing is VERY expensive and probably would not be covered by insurance for someone without family history. Mine was over $3600, but insurance picked it up because there are 19 cases of cancer in my 1st & 2nd generation relatives, including 7 breast cancers. My 23yo DD was tested after me, and she has my same 2 gene mutations.

You *might* be able to get a doctor to order testing, but I would be very surprised if insurance would pay for it.

My insurance wouldn't cover the testing based on my family history, lack of history. I guess you would have to weigh what having that information would mean. Would you go for different treatment or surgery?

Even though I have no family history for breast or other mutation-associated cancers, I was prescribed genetic counseling & then testing because I am Ashkenazi Jewish on both sides. Ashkenazi heritage + a bc diagnosis means that genetic testing is advisable even absent a family history. (Per “Dr. Susan Love’s Breast Book”). But genetic counseling is required first for insurance to pay for the testing. My insurance paid, and my test was negative.

However, if you have no family history and none of the ethnicities known to harbor mutations (due to centuries of not marrying outside the ethnic group), if you want testing it’d probably have to be on your own dime…a helluva lotta dimes at that. Your genetic counselor knows whereof she speaks. Save yourself the money and the anxiety.

BTW, 85% of breast cancers are in patients with no family history nor ethnicity risk.

Cysts in ovaries are not necessarily ominous. In fact, a type of cyst forms around an ovum as it is about to be released—the cyst bursts and the ovum is propelled into one of the Fallopian tubes. When I was 13, I had sudden lower right abdominal pain with low-grade fever and a high white cell count. My FP said it was likely either a hot appendix or a burst ovarian cyst…turned out to have been both!

Color Genomics tests for 30 genes (including BRCA1 and 2 mutations, PALB2, CHEK2 and ATM) and costs $250. Their website gives all instructions for ordering. You can have your doc copied on the test results. For those who may not qualify for testing through insurance, it is a fairly cheap way of getting the info. I never thought about getting tested as there was no history on my mom's side, and I did not know of any on my dad's (I have 20%ER+, PR-, HER2+++) cancer. At a recent family funeral I was told that my paternal grandfather's family was rife with BC and ovarian cancer. Several women who are my late father's first cousins are positive for the BRCA2 mutation. SInce my dad had no sisters, and I was not raised in the same area of the country as his cousins, I never knew. The mutations are carried by men as well as women. So for the sake of my own daughter, I am having the testing.

In my recent experience a week ago, Color Genomics didn't require that my doc order the test. Your doctor can do it, but you can also do it on your own and Color Genomics will have one of their (contracted, I assume) docs sign off. They do ask questions about your history and current condition on the order form, so i guess they could turn someone down, but I don't know what their decision process is. I just did it myself a week ago (I am in the U.S. if that matters) and have been notified by email that my request was approved and my sample has been received and is being tested. They also have a place on the order where you can indicate if you want your own doctor copied on the result and I did put my oncologist down. When I spoke to my oncologist about the unearthed BRCA history, he told me that it would be weeks or months before I could be seen by a genetic counselor at Johns Hopkins where he practices. I thought that was too long, and since I really don't need full boat counseling (already have cancer, thanks) I opted for the do it yourself mode.

hi I was diagnosed @48 .. no family history at all. However triple negative , multifocul tumors & both breast cancers put me in the category for testing. My insurance covered it. I have had a bi lateral mastectomy already so it was more about managing ovarian risks and big factor is my sister / brother and their girls all of who may of been impacted by genetic risk so that was a big motivation for me to find out for them.

As it turned out I had the test results back just this week and all clear so a big reflief for me and for the others in my family who don't need to worry unnecessarily .... not knowing and wondering if I was putting others in my family a risk by them not knowing was the key for me in doing it as I couldn't of lived with the wondering.

Hope everything goes well for you x

Twaz, I don't doubt that it is possible for genetic info to be used against a patient, but it is against the law (see Genetic Information Nondiscrimination Act). If an otherwise healthy person is denied health or life insurance due to genetic susceptibility for developing a disease in the future, that person would have an excellent case against the offending company. However, there is currently a bill making its way through the House of Representatives (HB1313) which may allow employers access to employee genetic info depending on the final language.

http://www.vox.com/policy-and-politics/2017/3/13/14907250/hr1313-bill-genetic-information

https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act

Thanks, Barred Owl--that is really helpful. Now I am concerned about my daughter getting the BRCA testing if I am indeed positive (in process now).

Got my results back today and I don't have the BRCA2 mutation or any of the other 29 mutations they test for, and am thankful to be spared that convo with my daughter. I know that there are plenty of families with lots of cancer and no genetic markers, so being marker free is no guarantee of anything (I did wind up with cancer myself, after all!) but it was still a relief not to have to drop that bomb. She still has the statistical burden of a mother with cancer, and her father's mom was diagnosed in her seventies as well albeit with a more typical ER/PR+ type successfully handled with lumpectomy--she died a few years later of an unrelated illness. I got the results much sooner than I thought; I only mailed the sample off a couple of weeks ago, so also grateful for the fast results. I did share the info with a sibs, and suggested that even though I did not test positive for the mutation that they might consider getting tested themselves in case they are carriers given the now known history on the paternal side, both for their own sake and their kids, if they care to of course.