BRCA 1 and TNBC - Anyone out there?
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Hi ladies
Fairly new to these boards, but I was wondering if any of you read the newest lit on BRCA mutations. It was very interesting and was confirmed by a doctor I saw at Dana Farber for a second opinion...basically having the Brca gene makes most of us very chemo sensative giving a better cure/remission than those not having the gene. I believe my family is a true testimony to this as myself and 3 others also had ovarian cancer almost 17 years ago and it had not returned to any of us, including my aunt who had 18 lymph nodes effected...I guess this gives me and I hope you ladies some hope while going through treatment for triple negative breast cancer and are BRCA positive. I was diagnosed triple negative this past June, had a BMX and now finishing treatment....We as a family did not know much about the BRCA gene 17 years ago, but it explains a lot....many blessings to all..good luck and best wishes.....Lisa -
Link to these BRCA/Chemo studies?
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I'm 65 white and paternal GM had BC at 78. Died 1 yr later. Found lunp myself 2 weeks after my 2nd Mamo. Ultra, Bi-op then removal 8 days after 1st found. Had grown 1.2 cm to 2.7 at time of Surgery. Started Adrianmyacin\ cytoxin 4 sessions, onTaxol for 4 also. Undetermined amount of Radiation starting 2 wks after Taxol, Have 1 more Taxol as of this date. genetic testing at time of surgery and was positive. Will go to U of M with 2 daughters and 2 gr d after radiation to find out if they have it. I think they should have a brca test NOW but Dr.s says OK for now. Will push harder on Monday, want more answers now after reading this great web site. Sentinal node had no cancer but still removed.
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Lisa and Bethany - welcome! So sorry you're here but glad you found us.
Bethany - insist that your daughters get tested now! After my + result, my mom was tested (had BC 2 years ago and she tested +) and my sister was also tested (negative!!!). How old are your girls? Unbelievable that your Dr thinks its "ok" to wait. As you may already know, BRCA1 mutations also increase the risk for ovarian cancer. Because it is more difficult to detect, ovarian cancer isn't often found until it is in a late stage and therefore harder to treat. If your doctor doesn't agree, talk to a genetic counselor who will certainly agree with you and order the tests for your girls. Please keep us posted.
I also read somewhere that BRCA/TNs respond well to treatment. Our challenge is getting to the 5-year mark without a recurrence. Once past that, our risk decreases more than our receptor positive sisters. I would also be interested in reading the lit you found, Lisa.
Oct 31 is the 1 year anniversary of my mammogram that found my tumor. Hard to believe its been that long...I have a feeling the next 4 years will be longer, waiting to see if BC comes back somewhere else. I know what others mean when they say to take one day at a time. Does anyone have any thoughts on getting to a place where you don't worry all the time?
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Hi Ladies...
I am posting some of the links to articles re: BRCA chemosensativity...when I get back to my other computer I will send some more as I am not able to access some of the links using a computer away from home....I have some at home with study breakdowns showing BRCA sensitivities...just trying to stay positive....P.S...when I went for my second opinion at Dana Farber, the MD I saw, Dr. Daniel Morgenstern also stated that the fact that BRCA are known to be more chemosensative in breaking the DNA of the cancer.
http://ww5.komen.org/KomenNewsArticle.aspx?id=6442452701
http://www.cancernetwork.com/conference-reports/mbcc2012/content/article/10165/2045206
Talk to you soon.....Hugs...Lisa
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Lisa - thanks for posting these. The third article confirms why my MO "went off the reservation" by treating me with Carboplatin, post AC/T. The article suggests adding carboplatin concurrent with the Taxanes; he added it for 6 weeks post Taxol for me.
I have not seen one other BRCA patient on BCO get this "experimental" treatment. One BRCA patient asked MD Anderson about it, but they would not add this chemo, as still not protocol. My MO is head of oncology at a teaching university. Glad to see it's use confirmed, but wonder why I'm not seeing it used in BRCA+, at all, here at BCO.
btw, I'm BRCA2+ and not TN, but the DNA Pathway would not be different between the various subtypes of BRCA breast cancers, to my knowledge.
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Hi Kam170....I wanted Carbo as well, but because I had it with my Ovarian cancer 17 years ago, he felt it would not be as effective because my cells would recognize it....but I agree, it is i believe the way things will be heading torwards... Even the Doctor at Dana Farber said they are doing currently a study where 1 would get standard treatment A/C and T and the next would get the standard and add the Carbo....I am sure that will be a home run, I think so anyway. I had Carbp and Taxol with my Ovarian and so did my family as we had it together, some of them were stage 3 ovarian with 18 lymph nodes effected and they are alive and well today from 17 years ago. I think you are a lucky lady to have recieved the Carbo....when I get home I will post the rest of the great articles...there are some I read that are very PRO Carbo...oh also, my Aunt was ER+ and not TN like me....we all had breast cancer as well...she is doing GREAT...14 years out after her BC treatment....
Have a great day...
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You've made my day Lisa......somewhere I read that some BC's (and I assume they meant BRCA, but not sure why I think that) should be treated like ovarian (i.e. Taxol and Carboplatin). I am curious, though, if your new cancer, BC, is a different cancer from your ovarian (and I'm sorry to hear you have had to deal with both, but survived ovarian!), would that resistence to Platins still hold?
My only regret about chemo, if any, was that I skipped the last 6 of 6 of my Carboplatins as Taxol had given me such bad neuropathy and it seemed as though Carboplatin could be contributing, though it was just a judgement call and no way to tell. Given it's efficacy, I wish I would have endured with that 6th treatment (I got it once a week for 6 weeks), even though I still suffer from neuropathy (last tx August 1).
My ooph surgeon is also an Oncologist and Researcher at same teaching hospital. When I was concerned about my ovaries staying in me those 10 long months between BC dx and the ooph (while I got other treatments done), she told me that for BRCA, if BC comes first, Ovarian usually doesn't occur until 9 years later.
Here is atleast one study about adding Carboplatin in TN, though no mention of brca. I would love to see the rest of your links!
http://www.cancer.gov/clinicaltrials/search/view?cdrid=636850&version=HealthProfessional
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Kam170....as it was explained to me, because I had Carbo they were not sure, if my cells would be sensitized to it threatening having a compleat response. As for missing 1, I would not worry about only having 5....the total protocol is 6 for ovarian and my aunt missed 1 due to toxicity and is doing great..(she,s the one with it in 18 lymph nodes) and continues to do well thank god after 17 years and a ERpos breast cancer 14 years ago to boot. You are very lucky....I am almost jealous..lol..lol. I am going to ask my onc again, I am hopping he will give me a mercy transfusion of at least 3 before my treatment is all over lol.....that's my hope...but if not, as I see it, BRCA givith...hopefully BRCA will take it away due to it chemosensativity.....
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does anyone know how to send a message to the MODS?
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Journey - the only way I know is the 'REPORT THIS POST' button next to the red button 'Post a Reply'...but that doesn't seem like the most appropriate way give that might not be what you want to do, but I would try that route..you will get a response. xo
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I found out yesterday that I'm BRCA 1 positive and yes, I have early onset triple negative breast cancer.
Just started chemo this month. Found out genetics on the day my hair started falling out.
Guessing the ooph surgery will be after chemo. Haven't made up my mind about bmx. Hubby is having difficulty with the idea of that. Last night I told him I didn't want to go thru this again and his comment was there's no guarantees. Yes that's true but the bmx sure as heck lowers those chances!!! Still need to discuss all of this with the genetics counselor and MO. MO mentioned if I was BRCA positive that ovaries would have to go but did not mention the bmx. Guess I'll find out the percentages and go from there. Any of you ladies decide not to do the bmx??????Spreading the word thru the family and setting up appointments for my kids to get tested as well. DD is 25 and not taking the news that well.
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Txjunebug......I did have the surgery with flap reconstruction. All I can say is it is so nice not to worry about it. My odds are now lower than a man's risk. it was in my lymphs, so there is always the annual concern of metastasis, but so far so good.
Best of luck with your treatments! -
Hi Ladies,
Apparently BRCA1+ has "blessed" me with another cancer - ovarian. I had what was supposed to be a prophylactic oopherectomy in November and thank goodness I did. The path report came back with malignant cells in my right ovary. My gyn who did the surgery assured me that both ovaries looked normal so the cancer must be almost microscopic. I had a chest port put in on Wednesday and will meet with MO next Friday. Looks like I'll be going through chemo again...damn it all!
If you haven't had your ovaries checked, please do! If you can, get them taken out...as you may know, ovarian cancer goes undetected until there are symptoms. By then, it will probably be in its late stages and more difficult to treat.
Hope everyone had a healthy and peaceful Christmas/Hanukkah. Best wishes for the New Year! Lisa
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txjunebug - As you can see, I had a BMX and an ooph. Given the aggressive nature of TNBC in combination with BRCA1, my doctors and I didn't want to take any chances. The decision to have a BMX was a difficult one for me but I knew it was the best thing to do. Good luck with your decision-making.
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Happy New Year!
I am three years out from my diagnositic mammogram. (Dec 29'09- 25 wedding anniversary). Still a little pissed off that genetic testing here took 15 months. I am 13 months out from second mastectomy and complete hysterectomy. Done here as day sx. No family history of bc. My mother had two primaries at 47, ovarian and endometrial. Fought for two years. Sister tested negative (but feels guilty), brother positive, maternal aunt negative. Their testing went faster. Two sons in their twenties not tested yet. Knowledge is power!
No follow up here. Definately at the front of the line with gp. Hard sometimes with the paranoia...every ache is not bone mets! No reconstruction. Love horse back riding and skiing and don't need them for that! Family thinks prosthesis with sound effects would sell- marachas or squeeky vesions- yes humor is wonderful medicine!
"Life is Good" is my mantra!
Wishing all of you a few moments of laughter!
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txjunebug~ I am TN and BRCA2, for me the BMX and ooph was what I could live with. My hubby wasn't happy about my BMX, but has been there to support me. I just had exchange surgery Dec 26th, he is very excited with the new girls so far! I wish you the best with these difficult decisions.
journey~ Sending you strength for your appt this week. Let us know how you're doing.
JJ62~ For me humor has been the best medicine, I always find something to laugh about instead of crying about it. "Life is Good" is a great mantra
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Hi everyone
I have just been diagnosed with BRCA1 and just getting used to it. I had a lumpectomy the first time (was told no to a MX) but I will be getting a DBMX as soon as I can, which in Canada could be months. I will also be getting the ovaries and tubes taken out. I am a bit miffed because my testing was done so late (took over a year to get results). I guess no one thought I would be positive ... 2 older sisters (over 50) no problems and I was 46. Grandma died of Ovarian cancer at age 54, Dad died of lung cancer at 77, mom heart issues but still here at 82! Doctors said no you don't have it. Halfway through chemo I finally tied myself to my second cousins family (who essentially was woped out by breast and Ovarian before the age of 50) and testing was allowed.
My question is how long do you have to wait for this surgery if you are in canada? And conversly how long did anyone wait in the US. From the point where you said "Okay I know what I am going to do".
Also someone said to get the Uterus out? is this something I should push for?
LISA - You are living my fear. When I first was diagnosed in 2011 a CT scan revealed Bilateral Ovarian Cysts. I have been freaking out thinking that they may be cancerous. No one has looked at that area in over 1 1/2 years. Makes you wonder what going on, eh? I am glad they caught it early for you. I wish you did not have to deal with it all. I will be thinking about you. Take care.
Karen
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Hi Kayrem,
I was refered for testing in March of 2010 in Saskatchewan- 6wks post mastectomy when I started chemo, but it took till Nov. 2010 for them to get through their processes! Ie history and genetic counciling. They insisted I travel to Saskatoon for this. Alberta got the blood in November and "reported" the results in March. Then mailed the results to Saskatchewan in early May! (I have a copy of the results that states this!) Apparently it is more cost efficient to do them in batches!!! I fought to get the results by telehealth rather than repeat a 6 hr drive one way to Saskatoon. They complied, but it was late May 2011 when they finally gave me the results. BRCA1 +.
My oncologist, the genetisist, gp and surgeons all agreed it was a no brainer to proceed with second mast. and complete hyst. My moms the only family cancer history- two primaries-ovarian and endometrial. It took until July to get in to see surgeons (general and gynocological). The general surgeon said she hoped they could do the prophalactic mastectomy with in two months and the general sx said 4-6 for a prophalactic complete hysterectomy (he said because of my mothers history everything, including cervix should go), laproscopically. They both assured me it made sense to do them at the same time, as day sx, and that co-ordinating wouldn't delay anything. By late October after a false alarm with a breast lump I lost it. Called my MLA and got refered to the "client representitive, surgery portfolio" for the health region. Yep my file had been shelved (after months of the booking department saying check back in two weeks!) And the surgeons saying it was out of their hands and up to the booking dept. Apparently because I was not considered an "active cancer patient", despite being told I was a priority. The client rep said their prioritizing should have put me at 1-3 months total wait time. November 4 I was called with a Dec 5 surgery date. More notice than my first mastectomy (dr called on Sat night for sx Monday afternoon). Waiting was the hardest part!
My sister in Alberta had her BRCA results within 2 weeks of testing (negative!). My brother in BC was also fast (positive :-() Maybe it narrowed down what they were looking for. I am pushing for more funding for testing, and more efficiencies in the system. Telehealth is wonderful!
Surgery went great! It pays to be "positively proactive"! You have the science behind you and are not "simply paranoid". (Which is really hard not to be!- or maybe we all are?) I am looking ahead, trying to make even better lifestyle choices, give back- hoping that by sharing my experiance it will help others and continuing to enjoy every day!
I hope you aren't kept waiting long Kayrem! Be persistant! Wishing you all the best.
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ps I was 47 when diagnosed, and given option of lumpectomy or SMX with first surgery, but not DMX or reconstuction.
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I m brca 1 and was dx with tnbc with everybody in familt testing positive and im the second of 3 if us sisters with bc I have been or would have been a 14 yr survivor on jan 25 with hormone positive bc but my new primary in other breast is tnbc
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Sandlake,
You are the only other person I have found to be TN and BRCA2 positive. I just found out my BRCA2 status and am not sure what to do. I have yet to have an appt with MO to discuss it, my GP says, "Get rid of them", my husband is not so sure I should jump on that one. I am not sure I want to look at those scars either so I can't blame him too much. He will support what ever I decide but I just don't know. I so do not ever, ever want chemo again I'm thinking they are not worth the chance of going through that again. Then I worry about reconstruction and that sounds so painful and long recovery. I just don't know what to do. There seems to be a long waiting period up here, there are only 3 drs in Ottawa that do reconstruction, so I definately have time to think about it.
Was anyone prescribed Tamoxifen, with the BRCA gene and TN. I have read a couple of places where that is not a great idea.
I ramble but I am confused and unsure of where to go or what to do.
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Hello ladies
I wanted to comment on the posts regarding mast. And reconstruction.
There is the procedure called skin sparring mast. With nipple preservation.
There are no scars. Your nipples stay. I had implants so I can't attest to any other method. But the procedure I had, the first day out of surgery I had b cup boobs and perfectly amazing in appearance. The incisions were totally hidden. Nipples still functioned as normal. Just numb.
I had a few fills to get to a c cup. And that wasn't bad at all. Just a poke and water pushed into the temporary implant.
I'm not exaggerating one bit when I say these boobs were fantastic and totally normal looking.
My procedure was in British Columbia.
Please ladies. Check all the options. New primaries or recurrences can be nearly eliminated. And beautiful breasts are possible. -
I second what Dus10 says. The reconstruction work these days is amazing. I too had a skin sparing mastectomy. You have to be a B cup and below, I think, for a Nipple-sparing, but either way is still better than monitoring and worrying about another primary. I view it as a win-win given our genetics.
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Patsycan,
Congrats to being 4 years out from your diagnosis! When I found out about my brca2 results it was very shocking! No family history until now. It came from my mom's side of the family who are originally from Quebec.
I have no regrets with any decisions I've made so far.
Wish you the best with your research and decision making.
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Man this is a club I don't want to be part of but at least there are some great people in this club
I am BRCA1+ and TN. I suspect it came from my fathers side of the family. Both my parents are as healthy as can be...which I am very happy about.
I am a 1/3 of the way done with chemo, then onto rads and then I am going to have my other breast removed. Going back and forth on removing the tubes/ovaries or a full hysterectomy. I will figure that out this summer. They baselined my ovaries and tubes a month ago and ok for now, they will do a repeat check every 4 months until I have the surgery.
I started back to work this week and I have to say I wish I did it sooner. I work from home so that helps a lot. It's nice to get back into the swing of things, get some stuff accomplished, tell some people what's up. I am much more motivated - plus I think the Celexa has kicked in...what a difference - I haven't cried in about 2-3 weeks.
So that's that
Happy to meet you! -
I had skin sparing BMX but BS said nipples couldn't be saved because they're ductal and I have IDC. If you were diagnosed with IDC, be sure to check on whether you can keep your nipples. My PS wants to "build" nipples and then tattoo them - he swears it will make the scars less noticable but I'm not so sure. I have time to think about it while I go through this second round of tx.
jenjen - you said they "baselined" your ovaries. What does that mean?
Welcome to the new ladies - wish you didn't have to be here, but we're all in this together to encourage and support each other.
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Yikes ladies
There's nothing ultimately wrong with us.
We have one less genetic soldier.
That's it. Everyone else has two guards vs our one.
In my head. How do I live with this?
I'm working on that
I know that getting my surgeries.. Dble mast / recon, hysterectomy ..
And all of that changed my life
And .... Punch cancer in the face.
And. I'm 10 years now
I was 30
I'm 40 now
I don't do scans or anything medical. Except for for my hormone script refill.
Anyone with tnbc. Be ready to live. -
Dus10 - what a great way to look at it. I'm encouraged and strengthened by what you say! Thanks.
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journey4life They completed a blood test and ultrasounds.
Dus10 - love it
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