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Who Should Undergo Genetic Testing for BRCA1 and BRCA2?

Trying to decide if one wants or would benefit from genetic testing of any kind is a very personal matter. Some people in fact become quite emotional about it. Without considering the cost factor, some people, like my mother, can never seem to have too much information. On the other end of the spectrum, some people view genetic testing as somehow tampering with God’s master plan. They do not believe we should try to control the mysteries of our genetic makeup. Still others just don’t want to know secrets of their DNA, for a variety of reasons. The majority of people are probably somewhere in the middle and are mostly confused by conflicting information, thoughts and emotions, so they do nothing or decide to wait and see.

This post will be an attempt to provide some very basic information intended to perhaps give some help in making this tough decision about BRCA gene mutation testing. I have gone through the testing process twice. Once as an observer with my mother and later testing positive for BRCA2  myself. For this particular post, I’m leaving my personal opinions out, easier said than done!

Once again, it is important to point to statistics in this matter. Ordinarily a woman’s risk of developing breast cancer in her lifetime is about 12%. However, for a woman with BRCA mutations, this risk jumps to an astonishing 50-85%. Similar spikes occur for ovarian cancer odds, the normal population risk being about 1.6% and someone with a BRCA1 mutation having perhaps up to a 55% lifetime risk. In addition, women with these mutations are at a higher risk for developing disease earlier in life and again some statistics show earlier onset of disease may result in more aggressive cancers. It’s also worth mentioning that in actuality only about 10% of breast cancers are caused by a mutated gene.

Sifting through all of this statistical data can be quite daunting. Simplistically stated, if it seems there are “too many” cancer cases in your family, it’s time to talk about it with your doctor and then you can decide how to procede.

When considering genetic testing for BRCA, you and your doctor will obviously take a close look at your family history. He or she will try to construct your family tree as accurately as possible and look for inherited patterns for cancer. The confusion comes when deciding how many cases indicate a pattern. Also, it should be pointed out that BRCA mutations are also passed on through men, so don’t neglect both sides of the family tree.

Generally speaking the greatest benefit for testing is for those who fall into the following categories:

For women with Jewish or Ashkenazic backgrounds

  • If you have any first degree relative, meaning a parent, sibling or child, diagnosed with breast or ovarian cancer and two second-degree relatives (aunts, uncles, grandparents, nieces, nephews, or half-siblings), this is a red flag.

For women not of the above mentioned background

  • Two first- degree relatives diagnosed with breast or ovarian cancer, one of whom was diagnosed before age 50.
  • Three or more first-degree or second-degree relatives diagnosed at any age.
  • A combo of first or second- degree relatives diagnosed with breast or ovarian cancer, one type of cancer per person.
  • A first-degree relative diagnosed with bilateral breast cancer (both breasts).
  • A combo of first or second-degree relatives diagnosed with ovarian cancer regardless of their ages.
  • A first or second-degree relative diagnosed with both breast and ovarian cancer, again regardless of their age at diagnosis.
  • A male relative with a breast cancer diagnosis.

If you find yourself falling into one of these categories, you may want to consider meeting with a genetic counselor just to learn more. If you want them to, they will then help you in figuring out who is the best living relative to be tested first and why. Generally, genetic testing information is most helpful when it starts with a family member who has had early breast cancer or ovarian cancer. Results of their test would help determine if you should be tested as well. However, if there is no living relative or if such a family member chooses not to be tested, you can go ahead and be tested yourself anyway.

The next hurdle is probably figuring out the cost and insurance coverage. For the initial family member to be tested, the cost is generally in the $3,000 range. For subsequent family member testing, it drops to around $400 because specific gene sequences can be analyzed; they aren’t starting from scratch, so to speak. Insurance coverage for both types is improving, but still varies greatly, so obviously the cost factor is hugely prohibitive for some. Don’t assume you are or are not covered. Find out for sure.

The next step is to ask yourself if you really want to know the information you will receive. Some people simply decide they do not want to know their potential risk, while others definitely do. There is no right or wrong here.

Also, decide what you intend to do with the information if you test positive.

  • Will you take proactive steps such as prophylactic mastectomy?
  • Will you feel better knowing you are at greater risk, but taking steps to perhaps prevent cancer?
  • Will you live in fear and paranoia, constantly worrying about cancer?
  • Will knowing affect your children or even affect your decision to have children?
  • Will your quality of life be altered?
  • Will relationships be affected?
  • Will you constantly live with feelings of guilt if found to be positive?

These are all serious questions to ask yourself before proceeding. It’s important to remember that testing positive does not mean you will get cancer.  Also, testing negative does not mean you will never get cancer.

Finally, take some time to think about your decision to go ahead with genetic testing or not. Just because you can know something, doesn’t mean you must or even should.  Don’t let anyone pressure you into testing, but don’t put your head in the sand either. Take charge of your health and body. Make the decision that is right for you.

Have you (or has someone you know) had genetic testing?

Or, what do you think are the main pros and cons of genetic testing?

 

 

61 thoughts on “Who Should Undergo Genetic Testing for BRCA1 and BRCA2?

  1. Hi Nancy,

    I had one second degree relative with breast cancer, my paternal grandmother, although she did get it before she turned 50. I would not qualify. But if I did qualify, and knowing what I know now after my diagnosis and treatment, I think I would want to get tested. My concern for you all in the states is whether insurance companies could use it against you. i.e. if you test positive, will your rates go up? Could they refuse to carry you?

    1. Cyn, Thanks for your comments. You do have a valid concern there. Things are improving here. One cannot be denied coverage due to an existing condition. Also, some insurance companies are covering testing, since preventative measures can be cheaper in the long run than treating cancer. It still is kind of up in the air though with no uniformity as far as I know anyway.

  2. I did the tests two years ago; two years after my diagnosis. Of course I would be the person who has results come back that there is some type of unidentified gene that no one knows anything about and no research studies have been done on it. I talked to my doctor, talked to my teenage daughter, felt reassured, and am one of those in line for future test studies re: this mutated gene…. Oh well….

    1. Lisa, Thanks for returning and leaving a comment. Does that mean you had one of those unidentified abnormalites, but not a brca mutation? I’m sorry, I can’t remember the exact term off the top of my head. I hope you get to be part of that study.

    2. I have breast cancer , and had the gentic testing done
      The results were a G and I was told they did not know what it meant
      It bothers me a lot that there is no research being done on people
      Like me.
      Thanks

      1. Yvonne, What does that mean? Ambiguous results? Keep asking questions until your results can be better explained to you. You need to understand them. You deserve nothing less. And yes, I wish there could be more research on a lot things. Thanks for reading and commenting.

  3. Nancy,
    The whole BRCA issue & genetic testing makes me rabid. The financial aspect reminds me of the days that led up to the first microprocessor being built.

    My “first” late husband’s company invented the microprocessor, but when he approached Intel about building a computer on a chip for them, Intel said “Why would we want to build a computer on a chip? We’ll sell LESS microprocessors than shift registers so financially, we have no incentive.” We all know how that turned out. Intel and the 8088 chip are now legendary, plus there are microprocessors in EVERYTHING now! My blow dryer is smarter than my first Apple SE computer.

    A similar analogy holds true for genetic testing. If every woman was automatically tested for BRCA, sure the price would go down, but look how many MORE tests they would do & like Intel, how much MORE money they would make. I would also think the insurance companies would be happier about the whole situation as well, not to mention women like me. Because I had no family history of breast cancer, my oncologist said I didn’t need genetic testing. Four years after my diagnosis, I had it done anyway, and wouldn’t you know I am BRCA2 positive! I’ve met lots of women with the same story.

    I fear our new health plan will only make it more difficult for us to get testing, much less have anyone pay for it! Good job, Nancy, in bringing this conundrum to our attention. And thanks for being here, so I can focus my attention on something else.

    XOXOXO,
    Brenda

    1. Brenda, First of all, I am so glad to see you “visiting.” I think about you daily and wonder how you are doing. Thanks for your insightful comments. The analogy you make with your first late husband’s invention is pretty darn interesting! And your second one regarding testing makes sense. You would think the companies would realize how much more money they could potentially make if more women had access to such tests, even at cheaper rates. You are really an exception, getting tested without family history. Just goes to prove once again, a person needs to listen to their gut feelings about such matters. You had a feeling… and turned out to be right. Also, your friends continue to be here for you, Brenda.

    2. The first paragraph made me cry. So well written. I got such a glimpse of who your mother was, a strong and beautiful lady. I lost my mom over 6 years ago suddenly after plastic surgery and I miss her. every. single. day. She raised me and my brother as a single mom as well. Have a good walk on Saturday. She is looking down with such pride and admiration.

  4. I just assume I would test positive so I don’t really need someone to prove this to me. The only thing that’s frustrating is doctors won’t take you seriously unless they have documentation that you are in fact positive.

    For example, I’m 27 and suggested to my doctor that I start mammograms at age 30. I don’t think she argued with this, but she thought I should get the genetic testing done first. I just don’t think testing positive or not should be the sole deciding factor for anything.

    1. Lindsay, I agree it’s really hard for someone your age to be tested since it’s a lifetime then to carry this knowledge with you. The trouble is, like your said, doctors don’t really take you seriously without documentation, so it might be worth it at some point. If you don’t test, you have to advocate for yourself even harder I guess. A person can control life style pieces of the puzzle, which you do a good job of! Thanks for your comments.

  5. I too was tested as soon as I heard my cousin was a carrier. I was a cancer survivor. I assumed I would test positive, because I and my sisters had had cancer and two cousins from both sides of the family tree had cancer. I, indeed, was positive. A committee of about 9 people told me and advised me. It was sort of overwhelming, I was not surprised at being positive. But I was surprised at the number of medical people
    involved! For all of you with a huge group of support people, use them. I usually go alone to this type of appointment, well, most all of my appointments. This was one appointment I should have had someone with me! Just to sit with me and even up the odds alittle.
    Ha. I chose the conservetive approach. I had my ovaries out and go for MRIs and mamograms every six months. I’ll deal with whatever comes down the pike when it or if it happens…what choice do we have?
    But I am not going to waste a momemt of my life worrying about it! I enjoyed your insightful remarks as usual, Nancy. With love, Betty

    1. Betty, Thanks for these great comments. Sorry you tested positive, but sounds like you somehow knew you would, as did I. I wonder why they felt they needed such a large group there?? That just overwhelms the patient in my opinion. You must have felt completely outnumbered!! I’m sure you handled it fine though! Good advice, we can’t just sit around worrying about this stuff or we’d go crazy.

    2. I am so glad you don’t waste time worrying. My daughter was diagnosed at 39 with Her2 and ER positive last Feb 2016. How do I stop worrying?

  6. Nancy, once again, there ‘appears’ to be no reason for me to be tested although I am very interested in what Brenda has to say.
    One of my friends has three daughters. My friend tested positive while two of her daughters are fine. They are currently waiting on results for the youngest daughter. In the meantime, one of the daughters having been given the ‘all-clear’ has recently had surgery for bowel cancer. How they continue to inspire and advise is beyond me.
    Love and thanks for your presentation of this very important information my friend.

    1. Chez, Thanks for reading and commenting. Yes, Brenda had some interesting points. I’m sorry to hear about your friend’s daughter having bowel cancer. Just proves testing negative or getting the “all clear” doesn’t give you guaranteed protection from cancer, does it? I hope she recovers fully. Did your friend have breast cancer herself? I’m sure your friendship and support is a great help to them, Chez.

  7. Hi Nancy, I was sure I would be tested positive since my mom and aunt (her sister) both had breast cancer. BRCA testing wasn’t available for them. I figured why get tested? No guarantee I’d get it or not, even if I was positive. I don’t think at the time I understood fully the spike in the odds if positive. If I had I may have changed my mind.

    In the end, I did get breast cancer, finally did the tests and to my surprise, was negative. Good news, one would think, but even now on Tamoxifen my estrogen levels are elevated and I’m considering having my ovaries out. There’s no clear answer on this.

    Great topic.

    1. Stacey, Yes, one would think testing negative is good news, but you developed breast cancer regardless. They say only 10% or so of cases are caused by the gene. I’m glad I was tested, it really impacted my treatment decisions. Also, I’ve been advised in no uncertain terms to get the ovaries out next. Thanks for your openness on this personal topic.

  8. Nancy – another very well written and researched article on this important topic. Although I had no family history, my oncologist decided to test me for the BRCA gene as part of her theory of leaving no stone unturned. Much to our surprise I tested positive for BRCA1 which in turn led us to finding out that my Dad was the carrier. We don’t know anymore than that at this point. In my case it turned out to be a piece of information that was quite useful in making some hard treatment decisions. The statistics associated with the gene weren’t in my favor so it became “easier” to assess my risks for future catastrophe and treat from there.

    That said, one of my close friends has a breast cancer cluster in her family. However she is categorically opposed to any gene testing whatsoever. Her belief is that if she goes for testing she will open the door to manifesting the disease within herself. She has this attitude despite seeing that everything that I have gone through, and knowing that if she is gene-positive she has a chance to save herself from the effects of this dreadful disease. It was a hard conversation for me to have with her. In fact I wanted to slap her. Hard. But instead I bit my tongue, and just gently suggested that she should at least go for counseling on the issue. Like you say it’s a very personal decision, but coming at it from the dark side, if you have the chance to do something about it, then do it !

    1. Anna, Thanks for the compliment. I think you must have a pretty unusual oncologist to suggest you get tested with no family history. Many are not so lucky. Perhaps it was because of your young age. Just like with you, when I found out I was positive, it hugely impacted treatment decisions. I understand how hard you must have been biting that tongue of yours concerning your friend! It is a personal choice, but some of us are very opinionated and it’s hard to keep quiet.

  9. I decided to get tested when my sisters developed b.c. and tested positive for BRCA 1. We already had an aunt who had b.c. in the late 1950’s at age 39 and come to find out another close relative got b.c. a couple years ago.

    There were absolutely NO hesitations…I knew what I was going to do and that was that. I did test positive-not a surprise. A month later the ovaries et al came out and I am nearly 2 weeks past the mastectomies-this has been a very hard recovery but based on my sister’s experiences I went in with my eyes open.

    I am in my early 50’s but still have elementary and high school age children at home and my husband was very supportive. He has been right there with
    me taking care of me and I consider myself very blessed…

    1. Kaye, Thank you so much for finding my blog and for taking time to share about your experience with BRCA testing. It sounds like you knew exactly what you wanted to do and then you just did it; good for you! I’m glad you have such a supportive spouse. Good luck with your continuing recovery. It’s a journey isn’t it? Hope to see you back soon!

  10. Hi Nancy:
    Sadly, my last surviving brother is critically ill with Pancreatic cancer. A dr. recently advised him to get BRCA testing done. (he didn’t, as he became too ill right after). After reading Nat. Ca Inst’s website about BRCA1&2, I’m a bit confused. My brother had prostate cancer and melanoma years ago and now I wonder if this recent, deadly cancer is related.
    Also, I’m concerned that if I go for genetic testing, I could be refused life insurance and/or long term care insurance. Since there are basically no females in my family other than me and my daughter, therefore, no breast or ovarian cancer history, I’m wondering if I should get tested.
    Any information or guidance to a website that could give more info would be helpful.

    1. Suzanne, I’m very sorry to hear about your brother. My heart goes out to you and your family. Your brother can probably still be tested and your insurance may cover it. Perhaps you might still wish to consider this. It is all very confusing isn’t it? Have you discussed these things with your doctor and your brother’s doctor? Is there more cancer in your family? If there seems to be a “trend,” the best advice I can give you is this: Check out the organization called FORCE, Facing Our Risk of Cancer Empowered. There should be a chapter in your state hopefully and they are really helpful. Start with their website. Discuss things with your doctors too. The Affordable Healthcare Act should be preventing such discrimination, but check with your state’s laws. It’s a lot to deal with, but you are not alone. My best and keep me posted.

  11. The determining factors of whether you should get tested are very confusing. I found out that with my insurance’s help I will still have to pay around $1000 to be tested. Now I know I could come up with the money if I really needed to, but it’s still not exactly pocket change for me. I have no qualms about knowing if I have the gene or not. I’ve already decided that if I do, I will be getting a prophylactic mastectomy. But if I don’t, it’s pretty much $1000 down the drain for me. My mother had breast cancer at age 30. That’s the real concerning factor for me. But I have no sisters and no aunts. So it’s sort of hard to know if there’s a pattern or not. My grandmother on my father’s side had ovarian cancer later in life(I think after 50). She had a sister that is still alive and kicking today who doesn’t have any cancers that I know of. And I just had a great aunt on my mother’s side who died from leukemia. However she was already pretty old, in her 80’s I think. You could technically die from anything at that age.

  12. My doctor wants me to be genetically tested for BRCA 1 and/or BRCA 2 because my sister was diagnosed with breast cancer at the age of 45, she subsequently died from it at age 48. I am now 55 years old. My great grandmother on my father’s side (his mother’s mother) had breast cancer, but late in life (in her late 70’s). I don’t want to be tested as I really don’t want that knowledge hanging over me. Although I have a daughter and a son and their kids could potentially carry the gene(s). I haven’t been diagnosed with breast cancer but have had a lumpectomy about 13 years ago and have a new lump in the same breast that was recently found by my doctor. I’m scheduled for a mammogram. What would you recommend I do – have the testing or not?
    I look forward to hearing from you.
    Jamie S., Houston, TX

    1. Jamie, The decision to be tested or not is a really big one and no one can make it but you. Has your doctor suggested that you meet with a genetic counselor? Doing so might help you come to a decision. Your sister being diagnosed at such a young age is a concern for you doctor I’m sure. All I can say is that I’m glad I had the test and wish I had had it earlier. Good luck with your mammogram. Keep me posted on things. My best.

  13. HI, I lost my mom at age 65, 3 months ago to ovarian cancer…i’ve been taking care of her for all those horrible last two years of her life…She was my everything..i still cant believe i ll never see her again..The pain is beyond any words…Mom’s sister is a breast cancer survivor. I’m pretty sure me and my cousin siter both have that stupid gene…we are in our late 30s…both have young kids..How will it benifit us to have this test done??? I dont know if im ready for matectomy and hestiractomy. But on the other hand i want yo see my kids grow up..i really dont know what to do at this point

    1. Ellie, I’m so sorry about your mom and for your intense pain. I’m glad you were able to be there for her during the last two years of her life. Those memories will become even more precious to you over time. The decision to be tested or not is a very big one. Have you discussed it with your doctors? I’d suggest meeting with a genetic counselor to help guide you in your decision making process. Your confusion is completely understandable. Give yourself a bit more time to think things through. Thanks for reaching out. My best to you and again, I’m very sorry for your loss.

  14. I have 3 second degree relatives with paternal grandmother being afflicted at age 50 and passed away early 50s. Two of her daughters had cancer, one died at 60.

    I was told I am not at risk and should not test. Now I’m confused…

    1. Jenny, I’m sorry you feel so confused, but that’s understandable. You can still be tested if you want, but of course, insurance coverage is a factor. Talk more with your doctors if you’re not satisfied. And you can always meet with a genetic counselor to further discuss your risk. Here’s a link that might help determine risk. Also, there is info at breastcancer.org and FORCE.org. Good luck and thanks for stopping by.

  15. This is a great post. I’m confused as to whether I should be asking for testing for BRCA. My mum had BC at 48, then recurrence at 55 and passed away age 58. I am an only child, so was my mum, and so was her mum, so the family history is so limited that I’m scared I will be overlooked for testing. I do know that my mums father had stomach cancer age 71 and his father had pancreatic cancer at 69, so I wonder if either of these could be relevant?

    1. Ellie, It sounds like you need to discuss more thoroughly your family’s medical history with your doctor. If you’re unsure, you can always speak with a genetic counselor regardless. Perhaps such a person could help advise you. Good luck. I understand your confusion.

  16. I am so confused. My mom was diagnosed with breast CA at 56 and her mother passed away as a result of a 10 year battle diagnosed at 37. My mom is BRCA negative. I have had two doctors insist that I am tested, yet I don not understand why? I am willing, but if it isn’t necessary, it is rather expensive. Anyhow, I was tested today, but can have them not run it.

    1. Catie, Of course you’re confused. Who wouldn’t be? It’s a lot to deal with. Only you can decide what you wish to do. You should ask your doctor to further explain his/her reason for insisting. You deserve clarification. The young ages at which your relatives had breast cancer is certainly a red flag for hereditary involvement of some kind, brca or not. Good luck to you.

  17. Hi, My mam had breast cancer @ 49, 7 had a mastectomy thankfully she is still with us 22 years on, her dad’s sister had breast cancer and four of her daughters which would be my mam’s first cousins all had breast cancer in their late 40’s early 50’s. My mam’s sister has just had a double mastectomy as she was diagnosed a few months ago with double breast cancer aged early 60s. My mam’s surgeon has been telling her since I turned 40 that I needed to be kept a close eye on. I am 47 and had a hysterectomy including ovaries two years ago because of problems and abnormal cells. I am going to see someone on the 14th May to start the ball rolling for BRCA1 gene testing. My mam never had the test so don’t know what to expect but I am concerned their is a strong family history and I would rather know. As far as I know I think it is being done public because of the history? Should my mam not be tested?

    1. Jennifer, Since your mom has had breast cancer already, a genetic counselor might suggest she be tested first and then you as well. The important thing is that you are starting the ball rolling as you said. Make a list of all your questions, including the one about your mom, to take with you to your appointment. There seems to be hereditary risk at play in your family, so testing is certainly a wise thing to do. Good luck.

  18. My mother was diagnosed and survived ovarian cancer at age 19. My 3 siblings and I are proof. She had a great aunt who also had ovarian cancer. My sister was BRCA tested and was found to be negative. Should I still test or are my results going to be the same as my sister’s?
    PS I am 49 and haven’t gone through menopause yet.

    1. Kelley, Your mother’s very early diagnosis is a definite concern and red flag. Just because your sister tested negative, it does mean you will (or won’t too). I’d say yes, get tested, but of course only you and your doctor can decide this. I would advise seeking the advice of a genetic counselor to discuss all of these things, regardless of what your testing decision might be. My best to you.

  19. My Mom is a 2 time BC survivor, as well as a 2x Lymphoma survivor. The first BC was at age 42. My sister was just diagnosed at 51 and tested negative for the gene. My mom has not been tested. If she were to be positive could she have passed it to myself and my other sister?

    1. Colleen, If your mom should test positive, then yes, she could have passed on the mutation to you and your other sister. There would be a 50/50 chance that you would be positive as well. But you might test negative too. Good luck with your decision.

  20. Hi Nancy, thanks for the article. I have been trying to find out if prostate cancer is an indicator of the BRCA genes. Both my brothers (56 & 60) have been diagnosed with prostate cancer within the last two months, both at level 7, being fast growing. My eldest brother has also got a squamous cell carcinoma lump in his neck which is being removed in a couple of weeks. My dad was diagnosed at 74 and died at 85 of prostrate cancer and his mother died of breast cancer and I’ve been told her sisters died of breast cancer too. My brother is concerned that there is some gene issue at play. I am 43 and my sister is 48. I’ve had a mammogram a year ago and all clear. Do you think it is something I should investigate more given the men in my family have a prostrate issue?

    Thanks Liz

    1. Liz, It seems as if cancer is certainly lurking around in your family if your dad, his mother and her sisters all were diagnosed. I would suggest bringing this up with your doctor and having a frank discussion. Three or more first-degree or second-degree relatives diagnosed at any age is a red flag. Plus, you don’t mention the ages of your grandmother and aunts. If they were diagnosed at a young age, this is important too. And then there are your brothers and their cancers. So yes, I think further investigation is warranted. Good luck. Keep me posted.

  21. Hi I’m looking for more information. I had a half sister from my dad side who had who had ovarian cancer and died before 50. She was 43 or 44. My father side does not have cancer to my knowledge grandmother, grandfather, aunties. I’m not sure of my sister mother side since we have two different mothers and we are not close. Should I be scared I can get ovarian cancer. My half sister also had 2 kids and I thought if you had kids you should be okay.

  22. I have been diagnosed with Atypical Ductal Hyperplasia, a marker for breast cancer. I have no family history of breast cancer. My friend seems to think I should get the gene test. I am 63 and was told I was too old for the test. Is there an age limit where the test results would not be accurate? Thanks.

    1. Pat, This is something you should discuss with your doctor, but no, there is no age limit. You are not too old. Thanks for reading. Good luck!

  23. One more thing…I have had a history of cysts and was diagnosed with fibroids. Three times since the 70’s I have undergone breast biopcies.

    1. Pat, Again, your doctor should be able to assess your family’s medical history, as well as your own, and answer all your questions. I’m not really familiar with atypical ductal hyperplasia. Generally, there do need to be a couple of red flags before testing is recommended. In all honesty, I don’t know if this is one, but you should definitely find out.

  24. Hi, my dear mum died of ovarian cancer aged 44. My sister has just had a negative BRCA test. Does this mean I will have the same? The whole thing is worrying me silly.

    1. Sharon, I’m sorry your mum died from ovarian cancer. It’s a difficult loss for your family. Your sister’s results do not impact yours. If your mom or your dad was/is a brca mutation carrier, your changes are 50/50 of being one as well. My advice would be to see a genetic counselor if you’re worrying. Good luck.

  25. My one brother has had colon cancer and breast cancer. He tested positive for brca1. Dr advised I get tested and did came back negative. Now another brother has been diagnosed with breast cancer and he tested positive for brca2. What do are the chances of insurance paying for another genetic test? I also can’t find any info on what that does to my risks having both mutations in the family.

  26. Just looking for some opinions & thoughts on this situation…..

    My ex husband’s sister was tested & has the BRCA gene mutation. She had breast cancer & then was tested. She lives in a country that removes all body parts that can be effected if you have either the 1 or 2 gene.

    I wanted my husband (at the time) to get tested so we knew what could be in store for our children. He refused for 5 years, but finally decided to. He now has the results & refuses to find them out. He wants our daughter to go into a conference call to find out more information with a genetic counsellor, but refuses to let me sit in on the call. He just wants to wait until she is 19 years old & can decide for herself if she wants to remove her female parts or not.he doesn’t want the results until then.

    I am more about educating her, myself being involved (obviously!), and knowing the results – it may be a mute point if he is negative. I am her Mother, I have primary custody of the kids, I am the one that takes them to the Doctor – he is Disney Dad. He makes me feel like I am out of control & don’t have a clue about what is going on.

    1. Cheri, I am sorry to hear about the extra challenges your situation is creating. Perhaps your ex needs some time to process this more. You don’t mention how old your daughter is. Hopefully you can keep the lines of communication open and keep the focus on what doing what is best for your daughter. Ultimately, your husband’s decision about if and when he chooses to get his own results is up to him, but I agree that your daughter deserves to know. Good luck to all of you.

    2. I don’t know how old your daughter is but perhaps until she is an age that she can fully comprehend the concerns of having this gene you keep her educated on the general/ordinary facts of the organs that affect this disease. When she becomes at an age where talking about such a thing will not send her into fear, I would then discuss it with her. If at this time your husband has not released the results, then perhaps it would be best for her to discuss it directly with him. Then this becomes and issue between the two of them and not a battle of control between you and your ex. It seems senseless that your ex would be this way but it seems he is just using it against you for his own benefit. Good Luck.

  27. My grandmother died of ovarian cancer when she was 50. My Aunt had Breast cancer and tested positive for the BRCA gene. She immediately had a hysterectomy but her breast cancer returned and they treated her again. Now she has some other cancer that has developed in other areas.

    My mother was tested for the gene and did not have it. My mother said since she didn’t have it that I wouldn’t have it. Is this true or do I need to be tested?

  28. This is all very stressful to me. I texted my sister about estrogen that doesn’t cause cancer, (lost my mother and 2 aunts to breast cancer) and she recommended I take the brca test. She did and it came back negative. Now I’m thinking I am bound to come back positive. My husband has been laid off for 2.5 years and I’m not sure if the insurance we have will cover the test and if I come back positive. all the surguries. This whole thing sucks. I’m 55 and looking at possible death and the financial ruin of my family.

  29. My oldest sister was 39 when she was diagnosed with metastatic breast cancer. She was then tested and was found to be negative for the gene.
    3 months to the day of her diagnosis, my other sister 37 was diagnosed with breast cancer. More than likely stage 2 but will be getting bilateral mastectomy next week. She was tested and results are pending.
    If she comes back negative also, do I need to be tested or can I assume I’m also negative?
    I’m so lost and confused!

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