BRAC1 Triple Negative

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sueps
sueps Member Posts: 2,266
edited June 2014 in Genetic Testing

I was dx with TN 3 years ago and had mastectomy.

The gene test is BRAC1  . 

If I have my ovaries out  my mum died of ovarian cancer @ 42 I am 40. Will I be able to have HRT , as my tumour was TN.

The doctor told me I was 90% more likely to get another breast cancer. Is this true

Thanks  

Comments

  • Sandals
    Sandals Member Posts: 104
    edited August 2010

    Hi,

    I have a similar diagnosis to yourself.  I tested positive for BRCA 1.  I have been told by my Oncologist that the risk of a second breast cancer is 85%.  

    I'm not sure about the HRT, would also be interested to know.  I'm 37 years old so going to go with Ovarian screening for the next few years and hold on to my ovaries until I'm just over 40.

  • hrf
    hrf Member Posts: 3,225
    edited August 2010

    I'm BRCA2+   First BC was TN. I had lumpectomy (chemo & rads) and then had my ovaries removed. No HRT as I was at high risk for a second bc. Sure enough 3 years later, a second bc and this time 100% ES+    The problem is that for those of us with a BRCA mutation, the risk of a second cancer is very, very high and even if the first is a TN, it doesn't mean the second one will be. I did the bmx following the second dx as I didn't feel I had a choice. I had to do chemo and rads all over again. No one should have to do it two times.

  • Tabatha00
    Tabatha00 Member Posts: 133
    edited August 2010

    I have a "variant of unknown significance"  in the BRCA1 gene.  My dad then tested and he was the same as me.  Pretty nasty history of breast and ovarian cancer in my family.  I'm also TN.  I finished treatment on May 24, 2010. 

    I had an Aunt (my dad's sister) and my grandmother (my dad's mom) both die of ovarian cancer so I'm having my ovaries removed on October 5.  I am sooooooo ready to do it because I don't EVER want to deal with ovarian cancer.   

  • Karen3
    Karen3 Member Posts: 307
    edited August 2010

    Just to chip in here - I was diagnosed as triple negative last September (just after my 46th birthday) and the gene testing showed I had a 'variant of unknown significance' in the BRCA1 test too. I had neoadjuvant chemo but my chemo was withdrawn half way through treatment as MRI scans showed the cancer was resistant to chemotherapy (a situation also found in BRCA mutations). Tabatha00 - you are the first person I have come across who had the same result from their gene test. I too have a strong family history. Mum was diagnosed with Ovarian cancer when she was 49 and her sister was diagnosed with Breast Cancer. Mum's brother died of Pancreatic Cancer at the age of 62 last year. The members of my family who have been affected by cancer have been asked to give a blood sample and we are part of ongoing research in the UK to find the BRAC3 gene. I am not really in a position to answer your question sueps except to say that my Oncologist did say that if the cancer comes back - it may be ER / PR +. Just because you were triple neg this time does not mean you are immune to a cancer sensitive to these hormones. With this in mind, I would think HRT should be avoided. But, I am sure there are more knowledgeable people on here who can comment.

    Karen XXX

  • cassou1
    cassou1 Member Posts: 31
    edited August 2010

    i,too am a brca1 mutant, i was told that i couldn't go on hrt, because of being a high risk.  which is a drag, because the hot flashes asren't fun to deal with when the temp. here in the desert is above 108, although cooled down to 100 degrees today.  had hysterectomy in '10, planning to have the mast. in '11. 

  • nancyluvspink
    nancyluvspink Member Posts: 102
    edited September 2010

    I am BRCA 1.  I have had BC twice (2000 and 2006), both times TN.  In 2008, I opted for a bilat mx with TRAM reconstruction.  This evening, I noticed a bump through my tshirt.  I thought maybe lint or something was in there.  I have a lump a little left of where my nipple would be.  I am freaking out.  Of course, I find it on a holiday weekend, so I won't be able to talk to anyone until Tuesday.  I am sick just thinking that I might have BC again.  What else could it be...it seems to be in an odd place, but who knows?  Anyone have any thoughts?  thanks

  • Del11
    Del11 Member Posts: 944
    edited September 2010

    cassou- If you haven't had cancer, or est+ cancer, you should be able to go on hormones. Maybe you should consult with another doctor. I'm BRCA1+, had ovaries out at 41 and have been on estrogen since the surgery. I just had PBM earlier this year. My gyn-onc says I can stay on the ERT until the natural age of menopause, so around age 50.

  • joannar
    joannar Member Posts: 30
    edited October 2010

    I am in a very similar situation.  I was diagnosed with triple Neg BC 5 years ago.  I did a Bilat Mast. and chemo and I am BRCA1+.  I have my Prophylactic oophrectomy scheduled for November.  I have spoken to a bunch of different doctors about the possibility of using HRT and the mostly the answer I get is- Theoretically I should be fine. I have no more breast tissue and the cancer I did have was hormone neg.  But studies have not been done to prove this yet. My oncologist wants me to wait and see if I am symptomatic but for me it is about more than just hot flashes.  I am worried about Heart disease, osteoporosis, cognitive impairment and overall morality. I am only 39.  I is such a hard decision. 

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

    I am also BRCA1+ and Triple Negative.  I had a BMX last year and my cancer came back in the same breast in almost the same location.  And I had DCIS with widely negative margins!  Anyway, I was supposed to get a hyst/ooph in May, but got postponed with new BC dx.  I will eventually get my hyst/ooph after I'm done with chemo and rads (probably Feb/March of next year).  I was told that I would not get hormone replacement therapy by both my onco and my gyn, since there is a possibility that I could get cancer again and have it be hormone positive.  My sister has the same gene mutation I have and was ER+.  Very strange. 

  • chinadollmom
    chinadollmom Member Posts: 13
    edited August 2013

    I would think that since you are BRCA1+, you should stay away from HRT, even if your cancer wasn't triple negative. (I had triple negative and ER+ tumors simultaneously.) I'm considering having my ovaries out also, and I have to admit, the side effects don't sound appealing.

    Tabitha00 and Karen3 -- I also have a 'variant of uncertain significance' in BRCA1. I don't have enough females in my family to know if ovarian cancer runs in the family or not (no sisters or aunts, one grandmother died young of other causes). So it's hard to decide if I should remove my ovaries or not. My radiologist suggested it, but I have yet to talk to my oncologist abou it.

  • amyadele
    amyadele Member Posts: 6
    edited December 2010

    Hi,

    I was diagnosed with TNBC in late October. Currently am undergoing neoadjuvant chemo (which I'm having a good response to so far), and just found out that I tested positive for BRCA1. I am so confused. So, some of you got bilateral mastectomies and cancer still came back in breast? Ugh. Very scary. And, to now have to worry about getting ovaries out too. It's a lot to take in. I'm 36, with a one-year old baby girl. Any advice, insight is welcome. Thank you!!

  • Cydz
    Cydz Member Posts: 157
    edited January 2011

    I am BRCA 1+ also TN. We have a very strong history of cancer. My paternal grandmother had bc at 50 then ovarian cancer at 70. Pretty much according to the sad schedule of what can happen to a BRCA1+ person. A cousin on the same side also had bc at 50. My father had pancreatice cancer, which is usually attributed to BRCA 2+, maybe he had both BRCA mutations. And then comes me, sigh. BC AND melanoma at 50 within a month of each other. For me this is a no brainer. Cancer wants in to my family in a big way! So, had a bilateral mx and in Dec. had the prophylactic hysterectomy. Thankfully, I am older with grown children, so that aspect didn't affect my decision. It is very personal, but in my case, it seemed I was heading down a well worn path. And yes, cancer can come back after a mastectomy, we see alot of women on here who have had that experience, however, the numbers are low. 

  • gailbeth7719
    gailbeth7719 Member Posts: 1
    edited February 2011

    I am now 47- I am BRAC 1+ from my dad-  I had anoopharectomy in August and a bilateral mastectomy in september-  I aslo have osteoporosis and now am insulin resistant  a Little-  My endocrinologist/GYN wst tme to go on low dose premarin(estrogen) and a natural progesterone called prometrium.  I was on it befor e-  He feels that we all need estrogen and the chances of getting breast cancer do not increase with Brac 1 +  especially if I have no tissue-  I need estrogen for bones, brains and "sex drive"  haha  -  I am considering going back on it for a year to see how I feel-  Any suggestions or concerns from anyone in the same situation-  I do not get hot flashes  sometimes i get night sweats-  I dont want to get diabetes wither aadn estorgen is supposed to help with insulin-  I am on crestor for cholesterol-  I did not have nipples done but am thinking about tatooing???  Thaks for your response

  • tibet
    tibet Member Posts: 545
    edited February 2011

    Chinadollmom

    Read in your dad's family, you had female relatives had OC and they have the same ethnical background. May I ask that kind ethnical background? Are they Jewish? I read Jewish had high mutation carrier %.

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