Should I have BRCA 1 and 2 testing?

I need advice, should I get a BRCA1/2 genetic test? My maternal aunt died of Ovarian Cancer. We believe my Great Aunt died of Ovarian Cancer in the late 60's. My grandfather was told that it was a "female" cancer at one point. In hindsight he believes that she (his sister) had very similar symtoms. In addition one of his nieces, my second cousin was found to have Ovarian Cancer during a pregnancy. They found it it in stage 1 during a c-section and she had. She had an immediate hysterectomy and chemo. and is fine now. She has a beautiful daughter who is in her teens now. It is obvious there is definetly ovarian cancer on my grandfather's side, but no one with a first degree relative has gotten the disease. It is a bit baffeling. My mom and surviving aunt had hysterectomies within a year of my aunt's death. I've often wondered whether I should get checked for the gene even though none of my 1st degree relatives have had ovarian cancer (yet). Unfortunatley, I've heard that it's hard to get insurance if you do get the test done and it is shown positive. If I am positive for the gene, I'm not sure I would be ready to have an oopherectomy. Although I have no problem with adoption, I would like the chance to consider giving birth, depending on where I'm at with my fibromyalgia when I decide to have children. Can I have advice? Doctors say one thing, I'd rather hear from what people say? Also, does anyone know of a good OBGYN that would consider all this that is in the Western North Carolina area, or possibly the upstate of SC?

By momanderson920
Posted January 3, 2009 at 1:47 pm
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If your insurance covers it, I highly recommend the testing. It lets you know what you are dealing with and what precautions to take. I don't think they suggest the removal of the ovaries right away unless you have had cancer of the ovaries.

By Hil323
Posted January 3, 2009 at 2:53 pm
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I don't have the disease, and I'm almost positive my insurance doesn't cover it. My concern is that I may have to buy my own insurance later--what if it's positive and they find out. What if I can't get insurance at all? Is that legal. And even if it's legal I know those companies have ways of finding out and "denying you" for another reason. Does that make sense?

By viki
Posted January 3, 2009 at 4:36 pm
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I do not understand the US insurance issues but for your own safety - consult a geneticist and if s/he decides that there is a high probability that it runs in the family perhaps get tested. If you are BRCA positive (most OVCA patients are not) then you have very high probability to get either OVCA or breast cancer during your life if you do not protect yourself. Protecting oneself from OVCA is not that difficult - remove surgically the ovaries after you have as many babies as you wish and perhaps not later than 40 (verify that number with the doctor). OVCA strikes usually around menopause. If the geneticist decides you are in danger category I would consider doing it even if you are BRCA negative - there are BRCA negative cases for which OVCA runs in the family (other unknown genes?). As for breast cancer - frequent breast checkups are recommended for BRCA positive people.

By Laniphil54
Posted January 4, 2009 at 10:09 am
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I recommend you contact a genetic counselor and see if your grandfather would be willing to give blood for testing to see if he is a carrier. If he is you can be tested and it will be covered by your insurance.

Genetic counselors are available through cancer associations like Life with Cancer or through a local hospital.

Get every bit of history of Ovarian Cancer in your family and have it organized when you go to the appointment.

Look at the site below and other sites to figure out how to organize the information and what you will need.
http://www.facingourrisk.org/advocacy/current_action_items.html?PHPSESSID=f 7ad53e934e3f45f8246ce5d5619a20a

Good luck,

Lani

By Hil323
Posted January 4, 2009 at 11:32 am
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Thanks! My grandfather has cancer right now and dementia, I doubt getting a sample would be easy. Maybe a cheek swab? But then I have to tell my parents and they flip that I worry.
Just brainstorming I suppose.
Hilary

By verlinda
Posted January 4, 2009 at 11:11 pm
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Hilary,

Do you have siblings? If so, would the parent whose father has cancer be willing to consider the testing? If your parent tests negative, you and your siblings could not inherit the genetic mutation from that parent and none of you has to be tested. I think the possibility of your other parent carrying the mutation would be astronomically slim.

I know you don't want to worry your parents, but here are the statistics I was given:

BRCA1 or 2 positive women have a 44% lifetime risk of ovarian cancer. They have over an 80% lifetime risk for breast cancer. Given those statistics, your parents probably would be willing to consider the test.

During pretesting counseling, my geneticist told me many geneticists think cancers like stomach, cervical, uterine, etc. diagnosed 30-40 years ago may have metastasized from ovarian but medical science was not advanced enough at that point to identify the original cancer. She also told me as soon as she heard both my sister and I had ovarian cancer before the age of 60, she suspected a strong genetic link.

Let me know if I can give you more information.

Blessings.

By kxsmom
Posted January 24, 2009 at 1:43 am
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I was just diagnosed with breast cancer and tested positive for BRCA1. For me it was essential information as it will change my course of treatment,double mastectomy and ooferectomy. This will actually lower my risk of future breast cancer and ovarian cancer below the general population.

There are laws protecting people from genetic discrimination in most states and in 2008 GINA passed. The federal genetic information nondiscrimination act. It says that employers and health insurance companies can not discriminate against you based on this information. As my genetic counselor explained to me, you already have a high risk for cancer associated with you because of your family history. Your doctor should most likely have upgraded you to more vigilent monitoring and testing based on the family history. The gene test only makes that risk more defined.

My genetic counselor also provides testing anonymously. If you have to pay any way, you might as well do it anonymously. If you decide to take action, then your doctor could reference the test as cause for whatever treatment you choose.

Anyway, I hope this information can help you in some way. I also recommend a consultation with a genetic counselor. They are much more well versed in your options (including whether to take the test or not) than a doctor.

Good Luck!

By FavoriteAunt
Posted January 24, 2009 at 8:51 am
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I've never had the test. My onc. asked if I wanted to get one to see about risk for breast cancer. After thinking about it, I decided not to get it. I will deal with what comes if and when anything else happens.

He did say I would have to see a genetic counselor first. Also told me to keep in mind a few things - most insurance companies don't pay for it and I think it is expensive; you could have trouble getting a job and insurance if it is positive; how you personally would deal with the info emotionally; how your family members would deal with it.

Interesting - one cousin who had low-grade breast cancer went met with the counselor at Sloan about a possible test. Even after she told them about me, and another first cousin with breast cancer, and that she has daughters - they did not think she was a candidate for the test. So you never know.

If you don't know what to do, you should maybe speak to the genetic counselor and then decide. I wish you the best of luck in your decision.

By Kristasmom
Posted January 24, 2009 at 8:51 am
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I went to a geneticist at UNC Chapel Hill since I was adopted and my daughter died of ovarian cancer in 2007. You only have to pay co-payment to "talk" to them about your concerns, which was helpful to me. I was told my insurance would not cover. Later I got a call and they said they are doing "research". I went in last week and they drew two viles of blood for the study. No cost to me. It would be worth a call. Best of luck!

By djwaz184
Posted January 24, 2009 at 11:51 am
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I went ahead and did it even though ovarian cancer doesn't run in my family and only one person had breast cancer, my mom. Anyway, I was found to have a variant of unknown significance. I still have my health insurance and as long as you maintain it somehow you'll be fine. My insurance paid in full for the complete testing so check first before you "think" it doesn't, it could provide you some time - time that others did not have in catching the beast early. Be proactive about things, I almost wasn't.

By cjpipkins
Posted February 4, 2009 at 2:25 pm
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I do not have cancer that runs in either one of my paretns family but since I was first diganosed with OVCA at age 36 I had the testing 7 years later and I am positive BRAC1. I am still not sure what to do with this information I have a 19 and 20 year old daughter and not sure I want them to be tested at such a young age.

By kalo555
Posted June 24, 2009 at 4:31 pm
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I would highly recommend it. I was fortunate in that my insurance covered it. My family is extremely small. I have no aunts on either my mother or fathers side. My maternal grandmother was healthy til the day she died(94) and I don't know how my fathers mom passed but I don't believe it was cancer. There is no history of cancer in my famiy(lucky me to be the first) It was important to me to find out if I tested positive for brca1-2 for my daughter and son or future generations. Also brca1,2 is the same gene that causes breast cancer so knowing this would impact my doctors plan for monitoring my breast health. Also, for my daughter, if I test positive, it allows doctors more freedom to do more extensive testing with her if she experiences problems due to the probability that she also might carry this gene. My test came back negative. My getting cancer was a fluke....and not a genetic fault. I think as more and more research is done re ovarian cancer that this information may prove to be valuable.

By Brown_Eyes
Posted June 25, 2009 at 11:53 am
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How do you get genetic testing done anonymously??

I'm trying to figure out if I should get it done too... And I really don't want to but wonder if I should for my siblings/nieces/etc sake. I don't see how I could be positive based on my family history....

By bevl
Posted June 25, 2009 at 12:58 pm
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It's illegal for insurance companies to discriminate based on results of genetic testing, so if the test is positive it will not make you uninsurable, so don't think about that as a reason not to get tested.

Also I don't think you said anything about your ethnic background. The BRCA1 and BRCA2 gene mutations are very common in Ashkenazi (eastern European) Jews, so that would be another strong reason to consider getting tested.

My mother and first cousin had breast cancer, and I have ovarian cancer, and I am an Ashkenazi Jew, With all of those risk factors, there was never any question about insurance covering the test. So I went ahead with it. It was just one more sample from my weely blood draw and It turned out that I don't have the mutation, so even in this case my cancer was a fluke but it was good to know, both in terms of what I would do and also what I would tell my sister and niece.

So given all that, I would suggest that you go to the genetic counselor with all the information you have about relatives who have had cancer and don't be afraid to go forward with the test if that is what is recommended.

Bev

By Crossword_Carole
Posted June 25, 2009 at 5:27 pm
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I had ovarian cancer, diagnosed in 1996, and my sister had breast cancer, diagnosed in 1991. We are both fine now. But 3 years ago, when our first cousin was diagnosed with breast cancer, she had genetic testing, worried that since our maternal grandmother had died of breast cancer, there might be a genetic link she should warn her sisters about. Result: my cousin had an unexplained abnormality of BRAC II, and my sister and I were then offered free testing because the genetic testing company wanted to collect more data on that abnormality. End result: neither of us had that (or any) genetic abnormality. It took three or four visits to the local geneticist to have this done, since they were being careful to determine how we would react if the same genetic trait WERE found.

By Shamrock2009
Posted June 26, 2009 at 10:58 am
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Please see a Genetic Counselor at a major cancer Center near you. They will work with you to see if your insurance company will pay for the testing if you are considered high risk. Prostate cancer in the family can also be related to BRCA l and ll positivity.

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