Am I the only one who didn't get BRCA tested?

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Watson
Watson Member Posts: 1,490

Hey y'all,

I didn't get tested.  It was never offered and I never asked.  Am I doing the wrong thing by not pushing for it?  My daughter will be 21 in about three weeks.  We plan to watch her closely.  I wouldn't recommend that she have any preventative surgery at her age.

Does anyone have any strong arguments for or against?  Let me hear 'em!

Happy Halloween!

(2 years ago when I was bald and on chemo, I went to a party with my bad mammogram attached to a light box around my neck.  lol  I told people that was the scariest thing I'd ever seen.)

Watson

Comments

  • Renairis
    Renairis Member Posts: 38
    edited November 2007

    Hi

    Because triple negative is often found in BRCA carriers, I would suugest that you have the test.The advantage is that women with brca are usually recommended to have their ovaries removed as a preventative measure. The surgery is usually pretty easy(as far as surgeries go).As for your daughter I'd wait and see if you're positivreor negative and then weigh the possibilities of having her tested. I'm brca positive and my daughter who is 24 goes for yearly utrasounds but she chose not to be tested, because of the emotional pressure if she were to learn that she is positive.My doctors also took this position.This question is, of course, debatable.

    Because you have had bc it seems wise to have the gene testing done.I certainly don't regret I did the test and at least I took measures to prevent ovarian cancer.

    Rena

  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2007

    Watson...first of all, I love your sense of humor and that costume is certainly the scariest! Cracked me up.

    As for your daughter and BRACA...there was a genetic study going on at our cancer center (and I believe is still going on) when I was diagnosed so I signed up for it and was tested. But, you first go through genetic counseling. With the counselor you can decide if you really want to go through with the blood test and what that would mean. I was at a very low risk for having the gene and did it only because of my daughter. I do NOT have the BRACA gene. Because I have no family history and no BRACA gene, my daughter is at the same risk that all other young women are at. She was 21 at the time.

    However, if I had been BRACA, I would not have wanted her tested but would have been more insistant that she go for ultrasounds at that time. They told me then that she didn't need to but I'm not sure that is correct.

    At any rate, it's important that your young daughter learn to do self-exams at the least, and go for ultra sounds if she feels comfortable with that. That is my take on it.

    Rena may be right about getting the test just to know. But, look at your background and then make a decision, or talk to the genetic counselor if you are unsure. My ONLY risk was that I was an ashkenazi Jew. I have no other connections to breast cancer or cancer at all in my family. I've started a new tradition. Frown

  • bhull
    bhull Member Posts: 28
    edited November 2007

    Hi Ladies,

    I also have not had genetic testing. I am 4 1/2 years out. I asked about it when dx (since I was 38, tnbc, stage 2B). My Breast Surgeon said no to genetic testing then. However, on my last visit (6 months ago) he recommended that I think about doing genetic testing now. I actually have my 6 month check-up again with him this morning. I think I am going to go ahead and meet with the genetic counselor and discuss the possiblity of doing the testing.

    I have two girls (16 & 12) and I would like to know - not for me so much, as for them.

    For those of you who did genetic testing. What changes if your results come back positive for the BC genes? Is there follow-up care or regular screening tests? What would change in my BC care that isn't already being done now? Are there any preventative meds. that I would be placed on? Since I am tnbc..no hormonal therapy given now.

    Also, have any of you had trouble with health insurance or life insurance since getting genetic testing done? I worry that my girls will be "rejected" with insurance companies if my genetic testing come back positive.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    No genetic test here either.  But I think it was still fairly new concept.  None of my bc docs have suggested it.  I am watched very closely though with scans every 6 months so manybe they felt it was unnecessary.

  • nosurrender
    nosurrender Member Posts: 2,019
    edited November 2007

    Hey Watson,

    When I was diagnosed with triple neg at age 39 all the docs mentioned getting the test simply because of my age and the fact that it was triple neg.

    It wasn't until my sister was dx'd with triple neg two years later that the docs really insisted.

    So I had the test and the result was an "unknown variant of brca2" which meant they weren't sure if it caused the bc or not.  A lot of help THAT was!

    This past winter when I got the new dx, my sister finally got the test and she was totally negative.

    I believe there are genes out there that they haven't found yet that no test can pick them up.  I consider my biggest risk factor is being a female. Because I did all the other stuff "right" and I STILL got bc!

    Hope you are feeling good!

    Love,

    g

    nosurrenderbreastcancerhelp 

  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2007

    I recently read that there is a BRACA 1a or something like that where it's something they are not sure of but they think it could be something that suppresses the tumor..actually a good thing. It's something new that somebody is working on. I think that's what I understood, at any rate...

  • Watson
    Watson Member Posts: 1,490
    edited November 2007

    Thanks for all the responses.

    There is no history of BC in my family either.  Ravdeb,  you did not start a new family tradition!  You ended it.

    When I go in December for my six month stuff, I am going to be brave and ask about scans and genetic testing.  At those appointments I am so anxious to get out the door, that I really don't ask the questions that I should.  Undecided

    Take care,

    Watson

  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited November 2007

    Watson - I agree that was the perfect Halloween costume! You are a hoot! Laughing

    As a premenopausal triple neg. who lost a sister early (diag. at 29, died at 34) to a hormone neg. tumor, I demanded testing early on, to confirm what I already knew deep in my bones. It would validate my determination to have a bilateral, not the lumpectomy/rads that was being recommended by both surgeon and oncologist. As far as the screening went, I did not qualify as 'high risk' for the mutation (you gotta be kidding me!) because I had only one 1st degree relative (my elder sister) with breast cancer.

    Sometimes a BRCA history is not readily apparent. I am fortunate that I come from a family where we had avid geneaologists long before it became an internet hobby - like back in the 18th Century! Cool Through this, I was able to show that my paternal great-great-grandmother died at 33, my great-grandmother at 33 from breast cancer, her two sisters at 31 and 35. Then there were two generations of only sons born. My elder sister was the first woman available for this mutation to strike since 1889.

    All this to say (yes, I do have a point) that you (the general reading public, you) may feel you don't have a history. My mother, my maternal aunts, cousins, 2nd cousins, great aunts, etc. are all still alive and well. A couple of pacemakers, some arthritis, yes; but in their late 80's and early 90's, some of them and nary a breast cancer in the bunch. However, if you are diagnosed with a premenopausal, triple-negative breast cancer - however small - I would encourage you to at least ask for genetic counseling and strongly consider genetic testing. My strong argument for is that those are the two major risk factors (in combination) for positive mutation.

    Knowledge is power. In the already diagnosed, you need that knowledge to make treatment decisions. BRCA+ patients need bilat. mastectomies and likely oophorectomies, regardless of the other characteristics or stage of their tumor. BRCA+ patients need to go for the Big-Guns chemo, even with small tumors and clear nodes.

    As for our children, if we get tested and come back positive, first, they have to be eighteen to be tested so that they can make the choice on their own. My 23 yr. old daughter has chosen not to be tested at this time, but to instead do the recommended preventive protocol: low dose birth control pills (for ovarian risk - I do not understand this one, but my gyn. onc. confirms it) and yearly breast ultrasounds alternating with MRIs because she has dense breasts. The guideline is to begin screening 10 years before the first onset in the BRCA line - in our case, age 29 - so screening starting at 19(!!!).

    As far as health and life insurance - our children will have to answer the standard question "Is there any cancer in your family?" in the affirmative - life insurers can take this into consideration. Given the prevalence of BC, it shouldn't have a major impact on their rates. However, no state allows questions about genetically-carried traits, for health or life insurance. Think about it. Have you ever seen "Does your family carry the gene for sickle cell disease?" Title I of Federal HIPAA (not HIPPA as most people refer to it) specifically forbids this in group plans. Title II (2.1 and 2.3) protects your information - positive or negative - from being communicated to others without your informed and written consent. Of course, the best bet - for us all - is to hope our kids get good jobs with good group coverage so that they just get signed on automatically.

    Ah, yes - in a perfect world!

    Sorry I wrote a book - premenopausal, triple neg. bc is something I feel passionately about! Surprised

    Good luck with your decisions!

    Lisa

  • carpediempenny
    carpediempenny Member Posts: 90
    edited November 2007

    I am triple negative and have not had the BRCA test done. I am debating myself. There is no history in my family for bc. I am the first. I have always been the odd ball in my family so this shouldn't surprise me.

    Thanks Lisa, this helps a lot. I am premenopause as well. I am also concerned for my daughter, she is 25 and maybe she would like to know.

    Thank you! Penny

  • Watson
    Watson Member Posts: 1,490
    edited November 2007

    Lisa,

    Thank you for your advice.  I think I will ask at my next appointment. 

    Thanks ladies!

    Watson

  • jenner
    jenner Member Posts: 8
    edited November 2007

    Wow. Thank you for asking that question. And thank you guys for all the comments! I did not have the test, since I didn't think it would change my treatment and I was very concerned about my daughter's insurability (she just turned 1 last Saturday). I didn't realize the ovarian implications. I am going to contact BCBS on Monday and see what they say about it - if they will pay, how much, and the insurability issue....

    And, like Penny, there was no family history and, yes, I am my family's oddball, too! Wink So maybe I should go get it done. I now have more research to do. I had both DCIS and IDC at 34, while pregnant, and only had the mod. rad. mast. (gotta learn those darn acronyms you all use) on my left. Getting the right off at recon, though!

    I'll have to see how all this applies to me....

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited November 2007

    Three top cancer centers no test...was told it would not change treatment protocal's at this time.  Have two sisters and they said they should be watched but not tested. 

    I'm sorry with less than 10% to 15% of bc ladies tested, that it not enough to sale me that this is the big "info needed for bc".  My surgeon who is the top in my state said she doesn't either.

    I'll wait and see...I may have to for drug trials in the future because they are focusing on this now.

    Living in hope.

    Fla

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited November 2007

    I didn't have the BRCA testing either.  I asked my oncologist about it because I was concerned about my daughter.  My mother had breast cancer too. My oncologist did not encourage me to do the test.  She was concerned about my daughter's insurability, if the test was positve.  She was also concerned if the test was negative that my daughter might not be so cautious about screenings. (She doesn't know my daughter!)

    I see my oncologist in January and I think I'll approach the topic again.

    Sadie

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited November 2007

    I just got back the results from the BRCA test.  No mutation found in BRCA1 or BRCA2.  On the one hand I was pleased to find out about that but on the other I know that there is some other gene responsible for the Triple negative diagnosis that has yet to be discovered...At least I have now some options when it comes to surgery in February.

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited November 2007

    Negative3Grade3,

    You mentioned the information you received from the BRCA test gave you some options when it comes to surgery now.  Would you tell me more about your thoughts about your options now?

    Sadie

  • StefS
    StefS Member Posts: 157
    edited November 2007

    Thanks for asking this question. I have never been tested. And Lisa, I did not realize that being triple-neg and premenopausal put me at higher likelihood of having the gene. I did ask my onc about a year ago and she didn't think it was necessary. My concern is my other breast, especially since I never felt the lump and initial mammo didn't show it.

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited November 2007

    Hi, Sadie.



    Well, both the oncologist and the oncology surgeon had said to me that if I test positive, I should go with prophylactic double mastectomy. Now that I know that I don't have the mutation, I'm leaning more towards lumpectomy since the tumor is responding (as I had posted earlier, after the 3rd AC treatment, clinically they couldn't detect it but the MRI showed it was still there but it had been reduced in size and it was 1/7 of what it was in volume and now measured 1.2 x 0.8 x 0.7). I just started the fifth treatment (my first with Taxotere and I'll have 3 more to go). I hope that T will reduce it even further and we will see what will happen with the pathology report I will get when I do surgery and of course prior to that I'll have an MRI again when all the treatment is done. I know it is a risk I'll be taking but I just don't feel ready to take drastic actions right now based on what I read in the literature and from the postings at breastcancer.org. I may regret it later, who knows, but maybe cancer won't come back and leave me alone:-) I'm trying to be very optimistic, as you can tell.

  • Shirlann
    Shirlann Member Posts: 3,302
    edited November 2007

    Nope, no test of ANY kind for me.  But I am 9 years post treatment and I am not sure the BRCA test was even around.

    Hugs, Shirlann

  • HollyHopes
    HollyHopes Member Posts: 497
    edited November 2007

    nope - no BRCA tests for me...i have a daughter who is 23 y/o, but onc said not to worry about her...that her risks are no more than the general population...ok...that was enough for me...i am totally not worried now (NOT!!!!  SCREAMMMMM!!)

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