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Topic: Mets and BRCA 1 or 2 positive?

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Dec 22, 2008 02:48PM

heatherbless wrote:

Can anyone comment on their own personal experiences with mets and being BRCA 1 or 2 positive.  I am not sure what research is available on this....but would also like feedback from members willing to post.  I am BRCA 2 pos., but no mets and clear scans.  Thanks, heather

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Posts 1 - 14 (14 total)

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Dec 22, 2008 04:12PM ElaineD wrote:

Hi Heather. I too am BRCA2, with mets to liver, pleura and bone. On a personal level this could  possibly have contributed to the following for me:

1)Primary diagnosis in 1996 was er-. mets in 2007, showed changed of staus to strongly er+. But hormone treatment hasn't worked for me.

2) Am Her2+, but had limited response to "wonder" drug herceptin.

At present, I'm now on xeloda/tykerb, and hoping for some better results than that which I had from taxotere/herceptin.

Not really sure what type of information you are looking for? I'm in the U.K where there are some interesting research projects at the moment. I'm hoping to be included on trials into PARP inhibtors:designed specifically for BRCA2 sufferers,and initial resuls are promising. It does appear that genetic cancers require a slightly different approach, and can also often throw up complications which "shouldn't", in theory happen (although anything with this ghastly disease is possible).

If you have any specific queries, do ask, and I'll do my best to answer.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 22, 2008 04:44PM LisaSDCA wrote:

I am BRCA-1 positive. I have inherited a gene mutation for a very aggressive cancer, however the full range is out there. I have lived 15 years longer than any of the women on my paternal side. I credit this good fortune to a rockin' immune system. Father died at 46, of cancer. Sister died at 34 (dx at 29) from a tiny, node negative tumor, which also metastasized first to her brain. As Elaine said, sometimes a genetic mutation means that something that shouldn't happen, frequently does.

I encourage you to investigate all the resources at

www.facingourrisk.org/

There is a message board and many informational articles.

Lisa

Stage IV mets to brain 11/2008 BRCA-1 positive

Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Dec 22, 2008 04:52PM KiminJax wrote:

Hi Heather, I've been documented with the BRCA2 gene and my daughter, Cara has the exact mutaton.  I have met to lungs, brain, spine, and liver. My daughte had her first MRI this week.  Don't know results but am praying for no evd of disease.  My mom is a breast cancer and ovarian cancer survivor and her mother was a breast cancer survior.

Dx'ed in September 2004, mets to lungs in September 2006, mets to brain in September 2008. Mets to liver & Spine Nov 08. BRCA2+

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Dec 22, 2008 05:49PM KellyC wrote:

I am BRCA1 -  and BRCA 2 came out "inconclusive"........and they said 95% of the inconclusives turn out to be a negative in 10 years or so, and only 2 other people in their entire system  had the same mutation as I did..... I have to bring my mom in to get her blood tested, but may just have them send the kit and have her doctor do it here on Long Island......the idea of dragging my mom into the city for this is not a very pleasing thought. 

I have liver and bone mets.

xoxo

Kel

If life hands you a lemon, stuff your bra with it!

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Oct 6, 2011 06:40PM orchid3013 wrote:

I'm brca2 and newly diagnosed at stage IV with mets to pelvis hip and lung.  Original diagnosis was in 2006 at stage 2a.  I'm in process of investigating chemo options for BRCA 2 ...and am curious about anyone having had Parp inhibitors via the trials...or if anyone knows when they will become FDA approved. 

I just ran across a chemo listed as useful for BRCA mutations..etoposide.  I haven't heard of this before but plan on asking my doc about it. Right now my doc is planning on navelbine and xeloda. Wonder what has/hasn't worked for Stage IV folks with BRCA mutations-care to share?

7/2011: Stage IV with Mets to pelvis, spine, lungs. Femara, Zoladex,Zometa. Planned Hip replacement and Chemo. Orig diagnosis: 2006 Stage IIa. ER+/PR+/HER+/BRCA2. Mastectomy,Treated with AC+ taxotere. Herceptin for 13 doses til EF declined.

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Nov 4, 2011 01:54AM, edited Nov 4, 2011 01:55AM by Breastless

I am BRCA2 positive and knew this before being diagnosed with BC. I found out I was BRCA2 + in Nov 2007 and requested an MRI. I also saw a surgeon to discuss prophylactic mastectomy, however she wanted to wait for the results of my MRI before scheduling surgery. It was through the MRI that I was diagnosed in march 2008 with cancer in my left breast. I had bilateral mastectomy followed by chemo, hysterectomy and oopherectomy Nov 2008. The cancer was ER+, her2 negative. I was on Letrozole from Jan 2009 until Aug 2011 at which time I was diagnosed with bone mets and BC cells in my left pleural cavity. I am now on Xeloda, midway through my third cycle. I hope this drug works for me.

How are you doing now that three years have passed since your DX?
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Dec 3, 2011 05:29PM suz45 wrote:

Hi, Im also BRCA1, I first found out I had breast cancer in August 2007 and didn't find out I was BRCA1 until after I had had a lumpectomy with 21 nodes removed and had almost finished my AC/T chemo & rads. I immediately had an oopherectomy and was told they would watch me carefully (hmmm) a year later I found a large lump in my other breast . It was a cluster of fast growing tumors so I went straight into another chemo Docetaxol, radiation then a bi-lateral MX.

Oct, 2010 we found I had bone mets to my right 6th posterior rib and I started on Clodronate for it.. its worked well for the bone cancer but again I found a lump at the base of my throat. It was a cluster of cancer in my nodes.

I asked about parp inhibitors but my oncologist didn't think they would work well for me (something about the trial results were not as good as first hoped on triple neg for my type of mets) so I went on another trial drug Foretinib. I was on it for 2 1/2 months and it wasn't working as my next scan showed widespread Lymphadenopadhy throughout the trunk of my body including 2 attached to the pleural lining on the right side.

I took a break and went on vacation for a week in Sept this year knowing I was starting to have issues with fluid buildup under the left lung, I was planning on starting a new chemo as soon as I got back. By the time I got back I was having breathing problems and they found that I had a litre of fluid in my right pleural. They drained it manually the first time but within 2 weeks it was back so I had to have surgery to install a pleura X drain. Nurses come in to my home to drain it via vacuum bottles, as well as clean, change & pad the waterproof dressings twice a week.

I'm currently still taking the clodranate (for the bones) and have started the oral chemo capecitabine. Its 4 pills twice a day for two weeks then one week off. I'm on my 4th cycle of it and find it extremely tolerable. I have my first CT scan on Dec 21.. I'm just guessing but I think this chemo is working. My tumor markers have come down and I'm almost sure the tumors in my neck are smaller! I used to be able to actually see the lump and now I have to feel for it :)

If for some reason I go off this chemo they have another one lined up for me, but its an IV drug (cant remember the name of it). I was actually given a choice of this or the oral one with the intention of utilizing the other once I finished with the first. I chose the oral chemo as it seemed like the side effects were easier and I wasn't into the whole IV thing all over again.

That's my ride so far. Hugs Suz

Laugh your heart out, dance in the rain, cherish the memories & ignore the pain, love and learn, forget & forgive. Remember you only have one life to Live.

Dx 11/25/2010, IDC, 6cm+, Stage IV, 8/23 nodes, mets, ER-/PR-, HER2-
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Dec 3, 2011 05:32PM suz45 wrote:

ps. It feels so good to be back on the boards and be able to talk openly about all this. I have a tendancy to just breeze over the details so that I dont upset my family..

Laugh your heart out, dance in the rain, cherish the memories & ignore the pain, love and learn, forget & forgive. Remember you only have one life to Live.

Dx 11/25/2010, IDC, 6cm+, Stage IV, 8/23 nodes, mets, ER-/PR-, HER2-
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Dec 3, 2011 06:38PM barsco1963 wrote:

I have mets to liver - BRCA results not back yet, but would be surprised if they come back neg. Have a history of bc - Maternal grandmother, mom, two aunts and now me.

Wondering what I should be asking when I do get the results back - neg or pos

Any advice?

Humour is life's greatest shock absorber!

Dx 5/30/2011, IDC, 4cm, Stage IV, Grade 2, 21/29 nodes, mets, ER+/PR+, HER2-Hormonal Therapy 07/25/2011 Tamoxifen
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Dec 3, 2011 07:46PM suz45 wrote:

Barsco, What have you had done treatment wise so far?

Suz

Laugh your heart out, dance in the rain, cherish the memories & ignore the pain, love and learn, forget & forgive. Remember you only have one life to Live.

Dx 11/25/2010, IDC, 6cm+, Stage IV, 8/23 nodes, mets, ER-/PR-, HER2-
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Dec 4, 2011 08:45AM barsco1963 wrote:

Suz - started on Tamoxifen in Aug. Added Zoladex in Sept. Tx is working well - all lesions have shrunk!

Humour is life's greatest shock absorber!

Dx 5/30/2011, IDC, 4cm, Stage IV, Grade 2, 21/29 nodes, mets, ER+/PR+, HER2-Hormonal Therapy 07/25/2011 Tamoxifen
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Dec 4, 2011 07:49PM suz45 wrote:

That's great to hear the tx is working so well! I see you have a strong family history BC. I'm not sure but I think its much more common to be triple neg when you have the BRCA1 gene. I don't know if this is the same for BRCA 2 gene. I'm thinking the tx would definitely be different for it.

I cant give you much advise except to really listen closely to the advise the genetic councillor gives you. I wish I had taken mine much more seriously, I was only stage 2 and could have prevented so much if I had only taken her seriously. When I went in to see my BRCA  councillor she strongly advised me to get a BMX asap (with reconstruction if I wanted) and have an Oopherectomy (tubes & ovaries removed lapriscopically)  At that point I only had a lumpectomy and thought she was over reacting to suggest a BMX... after all my tests were showing I was clear and I figured the chemo & rads would get any cancerous microscopic cells. I did get the oopherectomy (thankfully) since chemo had put me into menopause & with my age at the time (45) I figured I would stay there.

Needless to say it was only months later that I found a large lump in my right breast. If I had only taken her seriously..... My second cancer had a slightly different genetic make up from the first one. It was a very fast growing/spreading aggressive cancer. The first one wasn't very aggressive and could have been there since I was 40 maybe 4-5 years. So this hadn't spread it was a completely new one.

So if I had listened to her & taken her advise seriously I might have prevented the second cancer and I would have reconstructed boobs (very important to me) I thought as long as I was monitored closely we could catch anything immediately and I would have a BMX at that time.

So I guess what I'm trying to say is if you carry the gene, take whatever advise they give you seriously. Sometimes just being closely monitored isn't enough. Of course this is just my opinion from my experience.

ps. I have never admitted this to anyone EVER before this.

Love & Hugs Suz

Laugh your heart out, dance in the rain, cherish the memories & ignore the pain, love and learn, forget & forgive. Remember you only have one life to Live.

Dx 11/25/2010, IDC, 6cm+, Stage IV, 8/23 nodes, mets, ER-/PR-, HER2-
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Dec 5, 2011 08:48AM barsco1963 wrote:

Suz - thank you for your advice and honesty. It is never easy to try and sort out all of the information that we are bombarded with. We do what we think is best for ourself - sometimes it works out for the best, sometimes it doesn't. Either way we have to be able to trust our own judgement.

Below is information taken from a website that I was checking into http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA - It proves that there is NEVER a guarantee. Cancer is devious and will carve it's own path when and where it chooses to do so.

Bilateral prophylactic mastectomy (removal of healthy breasts) and prophylactic salpingo-oophorectomy (removal of healthy fallopian tubes and ovaries) do not, however, offer a guarantee against developing cancer.

I hope that you are not beating yourself up about the decisions made. Your second cancer may have manifested regardless. I have had yearly mammos since about 40 yrs (now 48) and thought that would be enough to catch anything early. Within one yr I seem to have developed stageIV - no guarantees.

How long did it take for your genetic testing results to come back? I was told 4-6 months. Are you not able to have reconstruction due to the positive results?

Be kind to yourself. ((HUGS))

Barb

Humour is life's greatest shock absorber!

Dx 5/30/2011, IDC, 4cm, Stage IV, Grade 2, 21/29 nodes, mets, ER+/PR+, HER2-Hormonal Therapy 07/25/2011 Tamoxifen
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Dec 6, 2011 10:09PM MaryGLA wrote:

I am a BRCA2 carrier. I was diagnosed at age 41 with stage I IDC. I did a double mast and chemo despite a low oncotype DX score. Then I tested for the gene because of my age- we have no family history. When that came back positive, I had a full hysterectomy. And 5 years after my initial diagnosis, here I am with mets galore. So do not beat yourself up about what you should have done differently, Suz. The beast might have found you anyway.

I progressed after five months of abraxane and Avastin, and I am now on Xeloda. I still feel pretty good, so I am thankful for that. If I get healthy enough to qualify for a PARP trial, my doctor wants me to do that next. I have read about great responses when it is combined with a second drug as in the phase 2 and 3 trials going on now. Wish I knew the answer to when it might get FDA approval.

I have not heard of etoposide so I will look into it.

Take care, everyone.

Mary

Diagnosed with Stage I IDC in October 2006. DMX, chemo, hysterectomy. April 2011- diagnosed with mets to bones, liver, lungs.

Dx 10/11/2006, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-Dx 4/24/2011, Stage IV, ER+/PR-, HER2-Chemotherapy 05/20/2011 AbraxaneChemotherapy 11/11/2011 XelodaChemotherapy 08/15/2012 carboplatin, Gemzar