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Important TNBC study-King Lab

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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2013 at 11:12am
BROCA is being offered as a clinical test and is raising controversy.  See news story here:

http://news.sciencemag.org/biology/2013/10/researchers-spar-over-tests-breast-cancer-risks

 
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Genie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2014 at 1:29am
Dear sisters,
I just wanted to share that when I had my 6-month check-up with my onc in December, I shared with him the results of my King Lab Study. He referred me to a gynecologic-oncologist and I met with him last week. He looked at the test results, the strong family history of BC, especially TNBC and has recommended a BOS because he thinks I am a high risk for ovarian cancer. I will be having the surgery on Jan. 16.
  The way he explained it to me was that as a woman ages her risks for ovarian cancer rises with each year until age 82 and then it starts dropping. With my history it put me in a much higher risk. I am not electing to have a complete hysterectomy as he doesn't see much of a risk for uterine cancer and also sometimes removing the uterus causes other problems.
  I will be glad to get this behind me as I think it will be a huge relief not to have to worry about ovarian cancer.

Love & hugs,
Genie
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2014 at 6:57am
Thank you for sharing, Genie...and I am sure all here join me in wishing you well with the procedure.

I think you are making a wise choice having the surgery done by a gynecologic oncologist. 

Don't think it would hurt to go over the surgery with the gyn/onc to make sure that the peritoneal washings and careful sectioning/biopsy of the fallopian tubes are done as well.

sending you a hug,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Genie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2014 at 8:27am
Steve, thanks for the reminder. I talked with the doctor about just that and he assured me that would be done. I had a friend who went to surgery because of a prolapsed uterus and they found ovarian cancer so I know just how important the sectioning/biopsy is.

Sorry I missed you at the San Antonio Breast Cancer Symposium and that you were able to see a doctor here about your ear ache and get treated.

You are greatly appreciated for all you do for those of here.

Hugging you right back,
Genie
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2014 at 7:51pm



    Hi Genie,   I just want to wish you well with the surgery and please know that I will keep you in my prayers.   Genie, you are a dear.    Please get your rest and we will await hearing from you when you are feeling up to it. God Bless,   Love, Annie

Edited by Annie - Jan 14 2014 at 7:55pm
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2014 at 8:20pm
Genie,

Did you get an "official" notification of your test results?  All I ever got was the email notification.  I've been waiting for over 8 months to get the official report.  Let me know if you got one.  

I had a complete hysterectomy in September.  I thought the recovery was much easier than I expected.  Hope your surgery goes well and you have a quick recovery.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Genie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2014 at 9:03am
Annie & Donna,
Thank you both for the good wishes. I am so ready to get this behind me.

Donna, I have received 2 different official notifications about my test results. My older brother & my sister were tested after I received my results and they both test positive for the BARD1 mutation.

Love to all,
Genie
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2014 at 12:50pm
Dear Donna,
I never received an official report either.  I was told I would get a preliminary letter, which I received, then a comprehensive report with the full results.  I understand that the reports are very complex and there was a problem compiling these results into a report that could be sent to participants.  I have no idea if and when I will finally receive this complete information. 
Best,
Bliss
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2014 at 9:30pm
I received my official test results today.  So glad I was able to participate in this study and the BROCA DNA test.  I hope the information the King Lab received from this study helps other women.

Donna


Edited by 123Donna - Mar 11 2014 at 9:30pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2017 at 6:43pm
Updated chart on the BROCA Cancer Risk Panel test and new genes they are including in the test.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2017 at 11:41pm
Thanks for posting this Donna...

I believe the work done by Dr. Mary Claire-King continues to help save lives based on the fact that 'knowledge is power' and the fact that she has made testing so much more economically. She was instrumental in the formation of http://https://www.color.com/

You can get tested for 30 genes (including BRCA but other potentially 'actionable genes') for $249-

What many may not be aware of is that, since I carry the BRCA1+ mutation, I was able to file my Myriad test result with color and because I proved I carry the mutation all of my children can test for $50 each.

Also, if you are in a tough position financially color may be able to help you get tested for, perhaps, no charge.

If anyone would like to talk about this please feel free to send me a PM and I will send you my email and phone number.

It is my understanding that approximately 70% of women who are BRCA+ when they have breast cancer have TNBC....the reverse is not true...70% of women with TNBC do not carry the mutation BUT it is extremely important to test for the mutations if you have TNBC. 

There is an additional very dangerous component to carrying the BRCA mutation. My daughter inherited the BRCA mutation from me and she had an 85% chance of getting breast cancer (which she did at age 36...and it was TNBC)....but that is not the end of the story...she also had an almost 50% chance of getting ovarian cancer...as a separate risk to her breast cancer risk. My grandmother died of ovarian cancer at age 46, in 1946, when I was 2...Here we are 70+ years later and there is still not an accurate test to find ovarian cancer 'early.' Most ovarian cancer in this country and around the world is first diagnosed as Stage III/IV disease which is a major problem.

with love, as always, to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 01 2017 at 1:08pm
Steve,

So good to hear from you!  You always provide us with such helpful and insightful information.  Thank you for all you do for our community.

I'm a big proponent of GetColor.com  Even at $249, to get tested for 30 possible genetic mutations is cheap.  My BRCA testing by Myriad 8 years ago, even with insurance coverage, charged me $800 copay.  I had a family member get tested for just one specific gene (not breast cancer), and the out of pocket was over $600 for the test.  So to be able to test for 30 common genetic mutations for $249 provides an affordable option.

Donna



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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