BRCA gene and age of diagnosis

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goldengirl12
goldengirl12 Member Posts: 51

My sister was diagnosed with Stage IV breast cancer at 30. We find out this week if she carries the BRCA gene mutation. Does being diagnosed at an early age make a person more likely to carry the gene?

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  • MRDRN
    MRDRN Member Posts: 537
    edited June 2010

    Many times the BRCA gene does run in families where the disease had been diagnosed in "pre menapausal" relatives.   Hope your waiting time is over soon ((((hugs)))))

    I am so sorry to hear about your sister.  Her doctor was right to test for it.  My sister and I have the gene and both our mother and her sister were diagnosed "pre menapausal"    ...I think 5-10% of all breast cancer patients are BRCA positive, so if she does have the gene, she is not alone.  There are many others to chat with on line who are BRCA positive, and many folks here who are stage 4, with and without the gene.

    I was diagnosed first with the gene which enabled increased screening but it was only because a cousin had advanced ovarian, and then found she had the gene, which prompted us to be tested, because of our mother's history.  She also attended a University Hospital in Philly that was proactive. 

    Glad you found this board as I think it is a great resource for people.  Feel free to PM me, or keep asking ...and sorry you need to join us.  

  • IrishLass
    IrishLass Member Posts: 24
    edited June 2010

    I too have the BRCA gene mutation! My older sister had breast cancer 8 years ago, she was 45 then. I was diagnosed with breast cancer in January of this year, DCIS in one breast. I asked to be tested for the BRCA because an uncle had breast cancer & he tested positive. Since then some cousins & 5 siblings out of 9 have been tested & all have tested positive. We inherited this gene from our dad who passed away from prostate cancer in 2000. In March I had a bilateral mastectomy & my ovaries & fallopian tubes removed. My cancer was 100% driven by estrogen as was the rest of my family. I have been flung into menopause & find it hard to sleep with night sweats & having to sleep on my back because of the tissue expanders. The best advice is to be VERY proactive about your health - screening & the CA125 (for ovarian cancer) & CA27.29 for breast cancer. My female siblings & cousins get a pelvic ultrasound too.

    tl10: I am keeping my fingers crossed for you! I know how daunting playing the waiting game can be...

  • smithlme
    smithlme Member Posts: 1,322
    edited June 2010

    My sister was 36 when she was diagnosed, almost 21 years ago. After I was diagnosed at 47 and again at 48, I had BRCA testing and was told I am BRCA 2+. My sister was tested last year and she is also BRCA 2+. Her daughter was tested at 36 and is negative! My sister and I have both had hysterectomies and oophorectomies. We got the gene from our dad who is a colon, kidney and skin cancer survivor. He is 84. His mother died of BC before I was born...

    Linda

  • kittycat
    kittycat Member Posts: 2,144
    edited June 2010

    My sister was dx at 44 and I was dx 8 months after her at 39 years old.  We both have the BRCA1 gene mutation.  We don't know what side of the family it came from because our dad passed away and our mom doesn't want to take it.  Both sides have breast cancer though.

  • ladybug50
    ladybug50 Member Posts: 41
    edited June 2010

    IrishLass   My father also died of prostate cancer in 2000. Are you BRCA 2? We have quite the cancer cluster in my family,  My fathers brother also had prostate cancer and he had 1 sis with breast cancer and another sister with breast cancer x2. His mother died of colon cancer, so we think it came from her side. She had a sister that died in her 50s and a brother with prostate ca. However, My grandfather also had prostate ca so it could be his side as well. He was in his 80s though when his was diagnosed.

    No one in my generation has had cancer. I am the only one tested so far. I am that "older sister" but do not have cancer as of yet so doing the PBM in Aug and probably ovaries removed by the end of the year.I am 50 and found out my BRCA staus last Dec. Most of my relatives were in their 50s when diagnosed (my uncle was younger).

    It is rare to see on here,posts where the father had prostate which was a clue. Do you know youe specific mutation?

  • PT6
    PT6 Member Posts: 76
    edited June 2010

    I was diagnosed with BC when I was 29. This was before they even knew there was a BRCA gene. I am BRCA 2+, so is my sister. We have both had BC. The gene comes from my father's sie of the family. ALL of the males on that side of the family have had prostate cancer for at least2 generations. My father's mother died of breast cancer but did not develop it early.

  • MRDRN
    MRDRN Member Posts: 537
    edited June 2010

    Here is an easy read for BRCA and it has further references, which I like from the Sloan Ket Hospital site.   Information is power i guess...  now I HAVE to get work done around here :O)   

    http://www.breastcenter.com/procedures/brca1brca2.php#questions

     tl10...and PT6, I can't imagine being diagnosed at that young age ...but PT6 so great to hear how long you have lived without cancer after the inital treatment!  (I looked at you other posts)  Amazing!

  • ladybug50
    ladybug50 Member Posts: 41
    edited June 2010

    Very weird some BRCA 2 families have early cancers and other families tend towads the middle years. How old was your male relatives that had prostate? My dad was 60 (although he had it awhile). My aunts that had breast and ovarian were also in their 50s. My grandmo with colon was 65 or so. My uncle with prostate was diagnosed in his 40s but he actually lived the longest of all the relatives with cancer.

  • LISAMG
    LISAMG Member Posts: 639
    edited June 2010

    ANY young woman diagnosed with [advanced] BC, especially in 30's or 40's, can be a red flag for a genetic predisposition....even if there is no family history. Triple negative BC is another red flag and is usually high grade and aggressive...This is a huge reason to seek genetic counseling.since it can be highly suggestive of the BRCA1 gene. Prayers for your sister and hoping her test results are negative. Keep us posted.

  • goldengirl12
    goldengirl12 Member Posts: 51
    edited June 2010

    My sisters test came back negative for the gene. Thank you so much for all the responses. It helps me to get through the waiting period. 

  • ocjen22
    ocjen22 Member Posts: 11
    edited June 2010

    My sis (age 31) and I (age 29)were tested for BRCA gene and I tested positive for BRCA2 while she tested negative.  Does anyone know if she should still be considering preventative measures? Our maternal grandmother passed away at 29 from BC and our mother diagnosed at 38 and passed away at 49. I am scheduled for PBM this July and oomph around age 35, but worry that just because she doesnt have the positive gene mutation, she may still be very high risk.  Any advice or direction would be helpful. Thanks!

  • leaf
    leaf Member Posts: 8,188
    edited June 2010

    This is what the NCI says:

    Cancer Risk in Individuals Who Test Negative for a Known Familial BRCA1/2 Mutation

    There is conflicting evidence as to the residual familial risk among women who test negative for the BRCA1/BRCA2 mutation segregating in the family. Based on prospective evaluation of 353 women who tested negative for the BRCA1 mutation segregating in the family, five incident breast cancers occurred during more than 6,000 person-years of observation, for a lifetime risk of 6.8%.[122] A report that the risk may be as high as fivefold in women who tested negative for the BRCA1 or BRCA2 mutation in the family [125] was followed by numerous letters to the editor suggesting that ascertainment biases account for much of this observed excess risk.[126-131] Three additional analyses have suggested an approximate 1.5-fold to 2-fold excess risk.[130,132,133] Several studies have involved retrospective analyses; all studies have been based on small observed numbers of cases and have been of uncertain statistical and clinical significance. No cases of ovarian cancer have been reported in these studies.[130]Additional prospective analyses will be required to determine whether women from BRCA1/BRCA2 families who test negative for the identified mutation are at the general-population risk for breast cancer and require differential clinical management.[130] http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional/page3

     Note that when they say a 'up to 2 fold risk', they are NOT NOT NOT talking about 2 x the risk of the average woman in the US (which is about 12%, and multiply that my 2 = about 24% excess risk), but 2 times the risk of a woman WITHOUT any particular risk factors.  I have  seen different numbers for this figure, but have seen quotes of about 3-5% excess risk.  So 2 x 3-5= about 6-10% excess  risk.  We also don't know if risk factors like this are additive.  So if you have other risk factors, we don't know if you should add 6-10% to this figure, or whether its less.

    Our capability of predicting breast cancer is not great.  There is a lot we don't know.

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited June 2010

    BRCA uninformative neg here PRIOR to DX. Significant family history. Was told risk was same as general pop. at the time (now things have changed a bit)~ stayed vigilant (skipped one 6 mo checkup) and was DX Stage 2B ER/PR+ Her2+++

       It happens,follow your gut and stay vigilant,statistics become a moot point if you are diagnosed..

    Warmly,Marcia (friend of LisaMG)

  • IrishLass
    IrishLass Member Posts: 24
    edited June 2010

    Yup, I'm BRCA2. My Dad is one of 10 - he died of prostate cancer at age 73, but had it many years. 2 of his brothers died of colon cancer (there seems to be LOTS of BRCA deaths w/colon cancer...), his sister had breast cancer in her 30's but died of brain cancer in her 60's & his youngest brother had breast cancer 2 years ago in his 60's & tested positive for BRCA2. Both my Dad's parents died of cancer, my grandfather died of lung cancer & my grandmother died of throat cancer. We think we got the gene from our grandmother as BRCA2's have a increased risk of throat cancer. Some of my cousins don't want to be tested (silly, I know!) but 4 female cousins (sisters) have been tested & 3 are positive  & one is negative. It seems to be a very strong gene mutation in my family but that one negative gives me hope for my children...

    Sorry for not being on here for a while. I've been on the Nipple & Skin Sparing Masectomy Forum & the private photo forum.

    Hugs to you all!

  • starzhere
    starzhere Member Posts: 162
    edited June 2010

    I've read that for those who have the gene, BC strikes about ten years earlier in each generation.

  • bebe51
    bebe51 Member Posts: 29
    edited June 2010

    My family sounds like IrishLass's.  My mother had bc at age 43 (now 74) and 4 of her sisters.  Mother only found out last yr she is BRCA2+.  3 sisters are positive, 2 had bc and 1 does not.   Another one of her sisters had bc but tested neg for BRCA2.  Genetic counselor explained to me that the one that has bc but is neg for the gene is group as general population (12%).  She was 63 when dx.  The others were dx at 47 and 49 with recurrence at 53 and 51. My mom's never reoccurred.   We believe that BRCA2 is from my mom's side, from her father's side.  My father's side has lung, brain and prostate cancer.  I am with IrishLass about the one negative.  There is hope.

  • IrishLass
    IrishLass Member Posts: 24
    edited June 2010

    Hi Ladies! I had surgery on the 24th, last Wednesday. My PS removed a 6cm X 2cm of skin plus an unsightly mole that I had too. She had to remove the TE too, so that's a bit of a bummer. Now I have to start all over again with the left one. I too have my photos up on the photo forum. It's so great to see all the new foobs forming & what it takes for us all to get there! Now, it will take me a while to catch up with what's going on with you all...

  • eileen1955
    eileen1955 Member Posts: 365
    edited June 2010

    I just tested negative for BRCA 1 and 2.  Before I could heave a sigh of relief, the cancer geneticist called to see if I can get slides of my father's (colon) tumor tissue so it can be tested for Lynch Syndrome.   He died in 1992 so I don't know how far I'll get, but if it helps my family then I'll do it.     My father was first diagnosed with colon cancer at age 40, very young and an indicator of genetic influence. I was diagnosed with first (hopefully only)  bc at age 47, so that is early also.         My father had the non-polyp cancer which is significant for Lynch.  So there is an association between Lynch (colon for any family members) and breast/ovarian/uterine cancer for the females.        I'll follow up on what the geneticist suggested, but so many cancers are due to environmental factors that I'm not losing sleep over this.      

  • justpayton1
    justpayton1 Member Posts: 786
    edited June 2010

    I was dxed at 38 w/ triple negative BC..I carry the BRCA 1 gene..My Mom passed in 1976 (age 30) from BC..My Grandmother in 1993 @ age 80 from BC.

  • IrishLass
    IrishLass Member Posts: 24
    edited July 2010
    Justpayton1: Oh gosh you lost your mom so young in life, I'm so sorry! How are you doing now & what stage of treatment are you at?
  • justpayton1
    justpayton1 Member Posts: 786
    edited July 2010

    I just today finished 6 cycles of Gemzar/Carboplatin. I will go back in 21 days to start a maintance program of Gemzar only. ( every 2 weeks) I had a scan after cycle 3 and it showed no progression so that was great news.

    My hope is to get a PARP when they are released for compassinate use. Fingers and toes crossed :))

  • ChocolateLover
    ChocolateLover Member Posts: 363
    edited July 2010

    I was tested negative for BRCA 1 or 2 years ago. However, after speaking with a geneticist at the children's hospital, (at a personal function) once he knew my Dad had BC also, he said there was definitely a gene there somewhere. The BRCA genes are just the ones they've found so far. They will find more in the future.

    Congra'ts JP on finishing your current tx. yay! Stay cozy in that stable!

  • justpayton1
    justpayton1 Member Posts: 786
    edited July 2010

    Thxs Chocolate..I hope to stay cozy for a long time. I would buy a new pair of slippers to celebrate except it's sooo blessed hot here.:))

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