https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Thu, 30 Apr 2026 09:37:38 +0000 https://boards.hellobee.com/topic/brca-screening-experience#post-2809262 Mon, 12 Mar 2018 13:28:32 +0000 kiddosc 2809262@https://boards.hellobee.com/ <p>@Mrs D: Have you heard that 23 and Me was approved to start offering BRCA 1/2 testing again? I heard a story on the radio and thought of this thread...<br /> <a href="https://www.washingtonpost.com/news/wonk/wp/2018/03/06/23andme-gets-fda-approval-to-report-breast-cancer-risk-without-a-doctor/?utm_term=.4ef40f365691" rel="nofollow">https://www.washingtonpost.com/news/wonk/wp/2018/03/06/23andme-gets-fda-approval-to-report-breast-cancer-risk-without-a-doctor/?utm_term=.4ef40f365691</a> </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2802555 Tue, 06 Feb 2018 20:00:51 +0000 karenbme 2802555@https://boards.hellobee.com/ <p>@Mrs D: My mom got aggressive breast cancer at 31, and when I started getting screened at 21 one of the conversations I had with the doctor was about genetic screening. The challenge is if you don't know the status of your family member who got it a your result is called an "uninformed positive/negative" and it's less predictive of future development of the disease. Unless you're interested in prophylactic surgery, each of the three providers I've worked with over the past 10 years has said an uninformed positive wouldn't change my screening plan, so I've chosen not to get tested. I do have a fairly aggressive screening plan, though, so it may be different for you. All this is to say, though, think about whether the result would change anything for you. If the answer is no it might not be worth it. For me it felt like a positive would add stress without changing what we are doing in terms of prevention, but a negative wouldn't relieve stress because there's no way to know whether my mom had it or not. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2802502 Tue, 06 Feb 2018 16:00:51 +0000 yoursilverlining 2802502@https://boards.hellobee.com/ <p>I just wanted to bump this thread with some new information; in case it might help you or be another avenue for you @Mrs D: </p> <p>As I said in my OP, my PCP referred me to a specialist (breast care center) and I just met with them. Breast care center said insurance is very unlikely to cover mammograms before 40 unless you have an over 20% lifetime risk factor, as calculated by some computer program. She said she would be surprised if I had over 20% even with 1 immediate family connect; but low and behold the computer reports I have a 29% risk so I will have my first mammogram this week and we’ll go from there. I’m 36. I’m not sure exactly what in my personal history bumped up my risk %, but that may be another avenue to potentially get earlier testing and get it covered by insurance. </p> <p>FYI too; my mom had her BRCA screening about 10 years ago and they are going to look into rescreening her because the panels have gotten very sophisticated since then. However, the genetic counselor at breast care center said that even a positive BRCA screen would only very minimally increase my overall lifetime risk factor - - so to say, maybe getting that screening done won't give you as much peace of mind as a mammogram would. I asked her how much $$ for a mammogram out of pocket and she said at least $500 but couldn't say exactly. So; if you are going to pay out of pocket for either, you might weigh bang for buck.</p> <p>Hope this helps! </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797695 Wed, 17 Jan 2018 14:45:11 +0000 Mrs Green Grass 2797695@https://boards.hellobee.com/ <p>My family history is grandma, Mom, and aunt. The first person in a family who is screened has the whole gene (plus some others related) screened. Since my mom came back with a mutation, they only tested my sister and I for that specific mutation. It was covered for both of us. My aunt is also positive for the mutation but my cousin is negative. So 3/4 people for us, but my mom and aunt have both survived their cancers, my grandma did not, but also had lung cancer...</p> <p>The test brought great piece of mind for my sister and myself since now we know doctors will take our risk seriously and we qualify for extra screening. (We rotate mammogram and breast mri every 6 months.) We have both chosen no prophylactic surgeries at this point but I have met with all of the appropriate surgeons and doctors for when I decide to go that route.</p> <p>I’m not sure I would do it with just one family member having cancer though since only a fraction of breast cancer cases are from the gene mutations carriers... </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797679 Wed, 17 Jan 2018 13:54:00 +0000 pinkb 2797679@https://boards.hellobee.com/ <p>I have chosen not to get the Brca test. My mother and her mother both had breast cancer. I have started getting screening done just last year at age 36. I had a baseline mamo in Nov which resulted in a lumpectomy in early December, which was benign. Early detection is key and I will continue to have yearly screening. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797672 Wed, 17 Jan 2018 13:17:08 +0000 MrsADS 2797672@https://boards.hellobee.com/ <p>Didn't fully read the other responses - my mother had breast cancer and was diagnosed at age 51. She had BRCA screening done and was negative, so my doctor did not recommend for me to have BRCA screening because of that. They told me they usually recommend that you begin getting mammograms when you're 10 years younger than your first-degree relative was diagnosed (i.e., if your mother was diagnosed at 35, they would recommend you get mammos starting at 25). Since my mom was diagnosed after age 50 and the recommending starting age for mammograms is 40, that is likely when I'll start, although I may start doing them sooner for my own peace of mind. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797668 Wed, 17 Jan 2018 13:01:05 +0000 ElbieKay 2797668@https://boards.hellobee.com/ <p>@2PeasinaPod: bummer. Thanks for letting me know. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797661 Wed, 17 Jan 2018 12:41:36 +0000 2PeasinaPod 2797661@https://boards.hellobee.com/ <p>@ElbieKay: I just saw your question. This will not come up on your full fertility screen. I had one done and this was not something they tested for. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797660 Wed, 17 Jan 2018 12:40:28 +0000 2PeasinaPod 2797660@https://boards.hellobee.com/ <p>I had the screening done as both my mom and my maternal grandmother had breast cancer, and my paternal aunt died of leukemia when she was 40. I brought it up to my primary care physician, and she referred me to a breast surgeon. We used a lab called Myriad, and I did their full panel based on my history, and insurance covered the whole thing with just a $20 copay. Because I had more than one close blood relative, they covered it no problem. I'm not sure that yours would be covered based on family history alone. My results were negative for all genes relating to any types of cancer which is a relief.</p> <p>If insurance won't cover your test, Color Genomics offers a kit for only $99 for BRCA1 &amp; BRCA2 testing. You can do more genes for something like $250, but it beats being overcharged by other labs. I believe they use saliva, so you just need to spit into a tube and mail it in which is what I did with Myriad as well. </p> <p>I also have a good friend who is my age (upper 30s) who was recently diagnosed with breast cancer. She tested positive for BRCA2 (her mom also had breast cancer), and that made her sister go. Her sister also tested positive for the gene, but their mom did not. So it's on her dad's side of the family. If you do test positive, it's helpful to other family members as well to understand where it came from. My friend had a double mastectomy, chemo, radiation, and will have her ovaries out in the spring for prevention. This is now all covered by insurance due to her positive BRCA2 test. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797651 Wed, 17 Jan 2018 12:06:09 +0000 nana87 2797651@https://boards.hellobee.com/ <p>I didn't read all the comments, but I had the BRCA screening done before ttc because my mother and my paternal grandmother both had breast cancer, and so it is on both sides of my family (and my mom was only 40 when diagnosed). My ob/gyn at the time is the one who suggested it and referred me to a genetic counselor. I didn't actually have the gene they tested for, and it was about 8 years ago so I don't remember if insurance covered it...</p> <p>Even though I didn't have that particular gene, my dr still wants to be proactive about screening. You can't get a mammogram while pregnant/nursing, but I had one + a breast u/s and mri done at 29 before I got pregnant w lo1 (actually I was preggers at the mri but didn't know yet, whoops...) and I'll get a repeat test done when I'm done nursing lo2 </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797595 Wed, 17 Jan 2018 06:10:03 +0000 ElbieKay 2797595@https://boards.hellobee.com/ <p>Does anyone know if this would turn up on a full genetic screen that is run for fertility purposes? I already know I am a recessive gene carrier of two diseases/conditions. (Since my husband is a carrier of neither, we are not at risk for our children having either disease.)</p> <p>Is BRCA tested that way or does it have to be a separate test? </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797578 Tue, 16 Jan 2018 23:44:48 +0000 youboots 2797578@https://boards.hellobee.com/ <p>I have already had cancer and am at risk for breast cancer.</p> <p>I brought up the test with my Dr and she is in support of me taking the test- however she suggested that I wait until I am done having children and breastfeeding since I may pursue a more aggressive treatment and she’s concerned I’ll feel like a ticking time bomb if you will. So I’m taking her advice and waiting. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797575 Tue, 16 Jan 2018 23:32:12 +0000 peaches1038 2797575@https://boards.hellobee.com/ <p>@Mrs D: tell your dad that men can get breast cancer too! </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797546 Tue, 16 Jan 2018 20:24:12 +0000 lawbee11 2797546@https://boards.hellobee.com/ <p>Insurance will not cover it if your grandma is the only one who has had it (unless she was very young when diagnosed I believe). My mom had breast cancer (only one in my family) and insurance won’t cover it for me. I’m not pursuing it on my own as it’s very expensive. I will start having mammograms at 35. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797542 Tue, 16 Jan 2018 20:12:35 +0000 SweetCaroline 2797542@https://boards.hellobee.com/ <p>@Mrs D: I am going through this process now. I'm actually doing genetic counseling through U of M. It starts with a crap ton of paperwork about all my relatives and their cancer history, birthdays, death dates, cause of death, etc. I am not sure what is next because I need to sit my butt down and finish the paperwork.</p> <p>My mom and her mom both had breast cancer, my mom was 35.</p> <p>ETA: I also had a baseline mammogram done recently. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797539 Tue, 16 Jan 2018 20:06:25 +0000 Mrs.Someone 2797539@https://boards.hellobee.com/ <p>FYI, I’m pretty sure you can figure out BRCA if you do 23&amp;Me (which is much cheaper). My mom was tested since we have a family history, but she didn’t have it. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797439 Tue, 16 Jan 2018 13:05:10 +0000 Mrs D 2797439@https://boards.hellobee.com/ <p>@LBee: I'm laughing imagining the discussion with my medical adverse dad asking him to get screened for breast cancer gene...</p> <p>But that is very good advice. Thank you! </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797437 Tue, 16 Jan 2018 12:51:31 +0000 LBee 2797437@https://boards.hellobee.com/ <p>@yoursilverlining: Same experience. </p> <p>I did not have the BRCA screening, but just went through this with my family. Piggy backing on what PP said (such good info, btw!), your insurance will most likely consider it elective. If you do not have a direct line with someone who had a positive test, they usually don't cover it as the current recommendation is against screening unless you have someone with a known genetic mutation (aka test positive for BRCA). Technically your dad could be tested for the gene and determine if it made sense for you. I actually think that makes more sense as it would address if your sister needed to be concerned as well. </p> <p>We were also told that just because you screen negative by no means indicates that it's not potentially genetic (or that you can just toss the worry aside). They are still researching and isolating strands constantly. They said the #1 thing you can do is be proactive about screening. Also having the gene doesn't mean it will manifest -- my family member's doctor actually said the most beneficial things the gene does is (a) encourage those with it to take screening seriously (which it sounds like you already do) and (b) certain chemos are most responsive when there is a genetic component. </p> <p>FWIW, I think most people who have experienced cancer have a "gut feeling" it will impact them. I'm not discounting your feeling, I just wanted to provide some comfort. My family member was 100% positive it would be genetic and actually had a genetic line that indicated it might be - but it wasn't.</p> <p>ETA: I have a similar link as @yoursilverlining and I'm not pursuing testing. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797434 Tue, 16 Jan 2018 12:50:27 +0000 Mrs D 2797434@https://boards.hellobee.com/ <p>@kiddosc: Oh, I definitely understand that even a negative test does not mean I am never going to develop it. I know there is a difference between genetic and other types of cancer.</p> <p>I think current medical standards can be a bit questionable and have no problem voicing that to my OB. I'll be demanding a mammogram even tho technically current guidelines would suggest I wait til 40 - if they make me pay out of pocket so be it.</p> <p>I also now pay out of pocket for for my pap smears, since insurance will only cover every 3 years. I've encountered plenty of doctors who disagree with the new screening guidelines. Thankfully I have a doctor who is generally supportive and helps me get what she can covered. </p> <p>I also just firmly believe in trusting your gut...better than wondering what if. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797431 Tue, 16 Jan 2018 12:43:47 +0000 kiddosc 2797431@https://boards.hellobee.com/ <p>With only one second degree relative with breast cancer, it is highly unlikely that your provider would recommend additional screening or testing. If you're determined to be tested, then I would count on paying out of pocket. </p> <p>I would like to point out, however, that even if you do get testing, and the testing is negative, that doesn't mean that you would never develop breast cancer. It sounds like you are looking for a way to determine if you are at risk for ever getting breast cancer, but the answer is most likely that modern medicine can't give you that answer. Current screening guidelines are very effective for the majority of the population and are most likely what your doctor will recommend for you.</p> <p>ETA: Nearly all cervical cancers are caused by HPV. BRCA links breast and ovarian cancers, but is not linked to cervical cancer. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797428 Tue, 16 Jan 2018 12:38:05 +0000 Mrs D 2797428@https://boards.hellobee.com/ <p>@yoursilverlining: Thanks, this is very helpful.</p> <p>@math.nerd: Thank you for your insights.</p> <p>So far, my only direct history with Breast Cancer was my paternal grandmother. Nothing else in either my parents generation or their parents. My maternal grandma was adopted - so that line ends there. My paternal grandma died of breast cancer and my dad was not great at keeping records so for now thats all I have.</p> <p>My sisters (I have 2), mom and I all had varying forms of cervical cancer and pre-cancer. Years ago, I was 17 or 18.</p> <p>I just have this weird gut feeling about it. Definitely going to explore with my OB and potentially explore moving forward even if insurance wont cover it. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797424 Tue, 16 Jan 2018 12:33:22 +0000 yoursilverlining 2797424@https://boards.hellobee.com/ <p>My mom had breast cancer and it was super aggressive and some other markers that make me very nervous, so this is something I’ve brought up at my last 2 annual appointments. My PCP has referred me this year (I’m 36) to a breast care center/specialists; which I’m meeting with next month. My PCP was hesitant (well, basically refused) to schedule any mammograms before 40 because 1) unlikely insurance would cover and 2) chance of false positive due to denser breast tissue. </p> <p>I asked my PCP about BRCA screening and she told me to have my mother do it vs. me doing it, since my mother was the one confirmed with cancer and that my insurance would likely only cover my test if hers was positive.</p> <p>Hope this helps. FWIW, I've brought up breast cancer concerns with both my OB and my PCP (and I really like both doctors) and both took the same position that it was early for me to do anything, absent additional close family connections (and connections who had breast cancer pre-menopause). I have good insurance and neither provider thought it was likely insurance would cover much, if anything, right now. So, you may want to do as much family history trackdown before your appointment as you can. </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797423 Tue, 16 Jan 2018 12:26:36 +0000 math.nerd 2797423@https://boards.hellobee.com/ <p>Hi there! </p> <p>I can chime in here. I had my BRCA screening done a bit after my son was born. I have a strong genetic history of Breast Cancer in my family - my mother, her mother, and her aunt all had Breast Cancer.</p> <p>My Mother was tested for the gene several years before and she was positive, so my insurance covered the test. I don't know if your insurance will cover it without more substantial family history or someone else with a positive test.</p> <p>The test itself is easy-peasy - just a blood test. My result was positive, so I do have the gene (which I've always suspected, so no big surprise). My Dr. called me in to give me the result. I'm grateful for the test because now I can get additional screenings and plan for the future. </p> <p>For what it's worth, my sister did NOT test positive - so even with our mother having the defective gene, only one of us got it. I suspect that your doctor might say that you're not a strong candidate for the test, just keep getting annual exams. But talk to your Dr! They will be able to give you good information.</p> <p>If you have any additional questions, please feel free to ask! </p> https://boards.hellobee.com/topic/brca-screening-experience#post-2797382 Tue, 16 Jan 2018 10:36:51 +0000 Mrs D 2797382@https://boards.hellobee.com/ <p>So - I have been having this nagging feeling about getting BRCA testing done. I'm 35, my paternal grandmother died of breast cancer. </p> <p>I'm planning to bring it up at my annual appointment this year - just wondering about others who have been the ones to initiate the conversation. What was the result? How did your DR react? Did you have the screening and did you pay or insurance? </p> <p>I think I'm at the point where I may pay myself for it if I cannot get it covered through insurance. </p>