<p>So today I had my routine “everything is fine” mammogram. Just as I was leaving, the doctor, looking at my family history, asked me if I’d considered having a genetic test. I said I hadn’t been inclined since I thought there was no real benefit in knowing (and since I didn’t think I’d have prophylactic surgery). She said that those who test positive can now take MRIs in addition to mammograms and that there is an actual benefit in terms of vigilance. By a strange coincidence, it turned out that the doctor I’d seen 18 years earlier for a surgical biopsy was coming in this afternoon and she said I could speak with him about it if I wished. He is quite well known in his field and speaks nationally on the subject of genetic testing for BRCA. I decided to meet with him. </p>
<p>He strongly encouraged me to have the test and took the position that doctors can save lives when there is a positive test. He was referring to surgery. He gave me statistics, etc. and told me I could leave a sample and take a couple of days to make up my mind, or come back at a later time once I’d thought it over. I decided to leave a sample, knowing that I have until Thursday to cancel the test. (My insurance covers this.) </p>
<p>I’m ambivalent. Over the past several hours, I’ve concluded that I would not have prophylactic surgery if I had a positive result, regardless of his position, which was obvious. I’ve always known surgery was a possible way of reducing risk, long before there was genetic testing, and I didn’t think it was right for me. I know I would become aggressively vigilant if I had a positive result, seeing a doctor at least twice a year, getting MRIs, etc. I always thought I would not want to know, but now that I realize I could be more vigilant, it makes a certain amount of sense. But living with that kind of sword of Damocles could be tough. But I feel like I already walked through the door today. Now that my sample has been taken, if I decide to decline the test, I will be left wondering. </p>
<p>If anyone has advice, I’d like to hear it. There is “only” a 12 percent chance of testing positive according to the doctor which seems pretty low, but it’s still daunting. I talked to a retired physician in my family who said, “Don’t do it” and a practicing physician who said, “Do it, but know why you are doing it and what you are willing and not willing to do if it’s positive. Or don’t do it and treat yourself to an MRI every year, regardless of whether insurance pays for it.”</p>
<p>I would do it if I had a strong family history. Even if prophylactic surgery is not something you would consider, more aggressive screening could of benefit if you have the gene. If the information is available to you, why not take advantage of it?</p>
<p>I would not do it if there were no actions available to reduce risk. In your case, there are.</p>
<p>The doctor seemed to feel that to know you are positive and not do surgery is to play Russian Roulette. He said he’s seen women who were vigilant but then ended up with cancer. But there are also women who have surgery and end up with cancer because a little tissue was left behind. In all of life, there is a certain amount of Russian Roulette. My retired-physician relative just called me back and asked me to really consider what it would be like to live with the anxiety if I tested positive. There are a lot of psychological ramifications to this kind of decision I think.</p>
<p>All of the women on my dad’s side of the family in the last three generations, besides his sister, had breast cancer-- and everyone except my grandmother died. I still don’t know if I’d have the test, particularly not if I was not planning on having surgery. At this point it’s probably safe to assume I have the gene, take all the extra precautions I would take, and be pleasantly surprised if I never get cancer. I think I might need a little wiggle room in the denial department if I’d already decided against surgery and wasn’t planning on changing my mind. But that’s just me. I’m an extremely anxiety prone person, especially about health.</p>
<p>One of my doctors (radiologist) recently asked me if I’d consider having the test as I also have a family history. When I mentioned it to another doctor (gyn), she was not enthusiastic, and asked what I’d do with the information. So I am pondering. One of my thoughts is that if I was positive, I could influence my three Ds to be vigilant and perhaps get their first mammograms at an earlier age. Honestly, I haven’t really given the whole thing serious consideration but I am very interested in this discussion.</p>
<p>My mom had BC 20 years ago and I had it 3 years ago. I pondered having the testing done (we didn’t have any other history & her BC was post-menopausal), but put off the decision at my oncology appt last October. </p>
<p>My younger sister was dx with BC in November. Her cancer is much worse than either mine or mom’s, and the onc did the testing as a matter of course. Fortunately, it came back negative for the known markers and no indeterminate variants were found either. </p>
<p>Since there are 5 of us sisters and 6 granddaughters, there was a lot of discussion over what we’d do if something was found. Some of us could live with it and some couldn’t. Ultimately, it came down to the knowledge for the younger generation was more important than the anxiety we’d face. </p>
<p>Obviously, not having the gene doesn’t keep you from getting cancer and having it may not mean you get cancer, either. </p>
<p>If I had gone through with the test before my sister’s dx, it would have required an appt with a genetic counselor. We would have gone through everything & then the decision made to submit or not. Insurance doesn’t have to cover the test if the likelihood is deemed low enough & many require a counseling appt before they’ll consider paying. </p>
<p>There really are no easy answers. the FORCE (facing our risk) website has quite a lot on the testing and what it means as well as the ramifications.</p>
<p>Mimk: We’ve talked before. I am a survivor…with two daughters. My mother had breast cancer. When I had breast cancer I had the test. The wait is atrocious. But knowledge is power. I am negative for the gene. But my girls have to be extra careful. </p>
<p>Save your sanity. Now that the question for you is out there it will always gnaw at you…take the test and possibly save your life.</p>
<p>Thanks for mentioning the FORCE website. That’s a great website. I notice they have a helpline and a chat forum and I may call tomorrow. I’m pretty sure I’ll go forward, but not 100%. I know the doctor I saw today is excellent, but I don’t think the counseling I got was very good as he seemed to have a real bias. It may be a bias based on experience, but I think it’s important to present women with options and empower them to make an informed decision and to create an atmosphere where they won’t feel like they are a bad patient if they make a different choice.</p>
<p>BRCA testing is most informative when it is done in someone who has had breast cancer, or another type of cancer (eg, ovarian) associated with BRCA1/BRCA2 gene mutations. If I were you, I would see a genetic counselor and preferably one who specializes or has experience in cancer genetic testing before making your decision. A genetic counselor will take a very detailed family and medical history and will do a thorough risk assessment. S/he will also go over the possible outcomes of testing, including what your options are if the test result is inconclusive - meaning they find a genetic variant but are not sure what it means in terms of cancer risk. You can find a list of cancer genetic counselors and genetics specialists here:</p>
<p>Or, go to the National Society of Genetic Counselors website- they also have a list of counselors by specialty. </p>
<p>Myriad Genetics Inc. holds the patent on the BRCA test and does extensive marketing to physicians. They also have done direct-to-consumer advertising in some parts of the country. Myriad performs a valuable service, but their main responsibility is to their stockholders, so they stand to beneft when more people have the test. </p>
<p>Remember that BRCA mutations also increase risk of ovarian cancer. Removal of the ovaries may be recommended for women who test positive for BRCA because it is the most effective way to reduce ovarian ca risk. There are no good screening tests for ovarian ca, and the early symptoms often go undetected, so the disease is often diagnosed in later stages when it is more difficult to treat. </p>
<p>Here’s more info on BRCA testing from the National Cancer Institute:</p>
<p>Thanks for the information. I might be able to consult with a genetic counselor by phone via FORCE. I do suspect the doctor is pro-testing because he speaks about it. Unfortunately, it is not possible to test my first-degree relative who had cancer. I also lack the kind of comprehensive information a genetic counselor might want. Even the history of my mother past a couple of generations is vague to me. While I know one side of her family traces back to Spain, it’s unclear to me where her father’s side traces back after a couple of generations – so I’m not clear if the Ashkenazi Jewish factor exists or not or to what degree. Also, neither my mother or I had sisters. I’m pretty sure that neither her mother or her aunts had these types of cancer. I think the red flag to the the physicians is how young my mother was when she got cancer – early thirties. However, that hasn’t been a secret when I’ve filled out forms, or seen my OB GYN and until today, no one directly discussed testing with me – which, I will say, I find to be a little odd.</p>
<p>Several woman in my family had BC and ovarian cancer pre menapausal. I myself had many biopsies before I was 30. Than one day soon after losing yet another close relative I decided to test and I must admit even though I suspected I would be positive hearing those results were a different thing. It took me about two weeks to realize that I had to have the surgery to have peace of mind. I consider myself among one of the luckiest women in my family because my pathology report came back with stage 1 breast cancer and this was all the result of preventative surgery. I also had a complete hysterectomy ( I was no where near menapause when I had both surgeries). </p>
<p>This is a very personal decision that only you could decide on. I have never regretted my decision but I know woman who have really struggled with this. I think it is harder to decide if a woman has had only one or two relatives with either breast or ovarian cancer but sadly that was not the case in my well studied family with over 40 cases including the youngest one at age 22. </p>
<p>I could only say that there are no breasts or ovaries worth any womans life. We are not our breasts and to be honest once we reach a certain age they aren’t that beautiful to look at anyway. I guess my attitude came from years of seeing the woman in my family die from either having breast or ovarian cancer. I lost too many including my sister, mother and every close cousin in my life. I was so happy to see my breasts go and even happier when that pathology report came back. That decision I made allowed me to be proactive and do something that prevented that disease from growing…best thing I ever did. The second best thing was having the hysterectomy. I of course had instant menapause which was not great at the time but I could go to sleep and feel good that I did everything possible to save my life. I had four young kids at the time and I was not able to think about them being without their mother.</p>
<p>I will be thinking about you and you can PM me anytime. It is not easy for most woman to consider but I think the alternative (in my case) would have been horrible.</p>
<p>By the way as far as I or any relative knows we are not of Ashkenazi blood lines. The poster above is correct that it is easier to do if another relative who has had the disease has been tested and I was lucky that many of my aunts and cousins had done so. I do not believe it is necessary though for accurate testing.</p>
<p>Here is an anecdote from the low-end of the risk spectrum.</p>
<p>Last year I had a routine mammogram. The results required a needle biopsy and then a follow up biopsy due to a finding of atypical ductal hyperplasia. These are considered to be precancerous cells.</p>
<p>PM me if you would like additional details, but the long and the short of it was that I was astonished at the aggressive treatment for something which has a very low chance of developing into cancer.</p>
<p>So it may indeed be the case that genetic testing is being recommended even though it is not clear that you are at high risk.</p>
<p>My mother and her sister both had breast cancer at 53, their brother had prostate cancer at 53; I had breast cancer at 35. I did do the testing after my breast cancer as there was a study going on at our local university. I tested positive, although it didn’t change my course of treatment. My aunt who was diagnosed after me, turned out to be negative when she tested.</p>
<p>Fast forward to 2011-My 24 year old daughter want the test, actually she has wanted to do it for year. My husband’s mother died of ovarian cancer at a young age and both sides of both families are Ashkenazi. She found a huge study going on in her city which included genetic counseling, before and after the results. The pre counseling was to discuss what she would do with the results. Turns out she was negative also. For my daughter, it was a no brainer to be tested; I don’t know what I would do at her age.</p>
<p>Obviously there is a family trait here; why I was positive and my aunt and daughter were negative is baffling. My theory is while I am BRCA1 positive and the others are negative, I believe when other genes are discovered, we will all test positive for a newer mutation. I wanted my mother to test just for my own curiosity; medicare will cover it, so she is thinking about it. My first cousins have no interest in being tested and that is their choice.</p>
<p>Wife’s onc recommends strongly against. 1) He says there is nothing to be gained for her. 2) He also speaks about the insurance angle: a) possible prohibition for medical in the future; b) life insurers. And finally, he speaks to the privacy issue, or lack thereof.</p>
<p>I hadn’t heard of the Ashkenazi link before. My husband’s grandfather was an Ashkenazi Jew. He and all three of our kids tested positive for Factor XI Deficiency, a very rare bleeding disorder that is most prevalent among Askenazi Jews. When my 13-year-old daughter grows up, I guess I will have to tell her of the potential concern. I don’t know of any relatives on either side who have gotten cancer, except my grandmother who was in her 70s.</p>
<p>mimk6, I will be thinking of you! I hope you get some excellent counseling.</p>
<p>I am new to this site (just starting the college search with a high school freshman) and surprised to find a post on BRCA. I did test for the BRCA mutations 5 years ago but had I also had a hard time deciding if I wanted to know. There are lots of good resources out there and FORCE is the best. If they have a local outreach group in your area contact the coordinators who will undoubtedly be very helpful. Another good resource is the book Positive Results, by Joi Morris and Ora Gordon. And I totally agree with the other advice that you should see a genetic counselor rather than just your doctor, who comes with a point of view not only on testing but on what you should do with the results. MRI is a very good option and surgical prevention is not for everyone. A very personal decision in my book. The FORCE message board is also a wonderful place to post this question where you will get a lot of input.</p>
<p>The majority of breast cancer patients are negative for the BRCA mutations (90%?), so I don’t see what you would gain if you had the test. If you’re negative, you certainly can’t be relieved that you won’t get cancer - because you still could. And if you have the mutation, you might not ever get cancer. But in either case, you’ll still go for your regular mammograms, right?</p>
<p>I have one tiny piece of advice, though I don’t know whether it will help. We aren’t very good at figuring out how we would feel, and how we would react, if some event happened. For example, I might think that I would have a deliriously happy life if I won the lottery, but it turns out lottery winners aren’t any happier than other people. I imagine that I’d be calm and effective in an emergency, but it turns out a lot of people panic. People think life wouldn’t be worth living if they lost the use of their legs, but it turns out people who use wheelchairs, but who are otherwise healthy, live happy lives.</p>
<p>So here’s the advice: Check out the FORCE website. See how women who had the test, and who didn’t have the test, felt about it afterwards. Try to find women who are more or less like you. Other women’s reactions are a better prediction of your reaction than your imagination is.</p>
<p>I agree with the above advice to talk to a genetic counselor and check out the FORCE website. If there is a very, very strong history of familial BC, then it makes a lot of sense. When one’s mother, sister, aunts, etc. have had it, then you know, positive test or not, you are at increase risk of BC. But for most people, it’s a lot less clear. Testing positive doesn’t mean you will get cancer and testing negative doesn’t mean you won’t. The only 100% effective of ensuring you don’t get it is to have prophylactic breast removal and if you aren’t open to that, then having a positive test could send you into an constant state of anxiety (I know I would probably react that way) or a negative test could lull you into a false sense of security. So, really, what do you gain by having the test? We should ALL be vigilant about our breast health. I’m not suggesting that you don’t do the test but it’s really something you need to think about long and hard before making that decision. BTW - I had a friend who had prophylactic breast removal and is very happy with her decision.</p>
<p>My mom recently had BC and tested negative for BRCA. Had she tested positive, I’m not sure I would have had the test. At least not until I knew what my action plan would be if I tested positive. However, her tumor was both estrogen and progesterone positive. Same with my MIL. The one thing we can all do to reduce our risk of cancer is to avoid HRT (synthetic or bio-identical). They’re even starting to think that birth control pills are contributing to BC. Both my mom and MIL took HRT for years. Good luck - not an easy decision but certainly not one you need to rush into next week. Take your time, research it and think about it.</p>