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    Posted: Feb 20 2012 at 7:55pm
Dear all,

I believe the following King Lab study is an extremely important one for our community.

GENOMIC ANALYSIS OF INHERITED BREAST CANCER AMONG WOMEN DIAGNOSED

WITH TRIPLE-NEGATIVE DISEASE OR WITH DIAGNOSIS AT AGE 40 OR YOUNGER

Please see the information, that I received, this afternoon, in a two page letter from the King lab, along with their permission to publish it. Please see the complete letter, below, and be guided by the letter, not my words, please.. 

The research study being done by the Mary-Claire King Lab at the University of Washington is broad in scope. As you will see in the letter below almost any woman with TNBC who has been commercially tested for the BRCA mutation, in the U.S., can be enrolled in the study, if she wishes, no matter the results of the testing and no matter her family history. It seems that scientists are finding that in some BRCA+ women there are other breast cancer genes that are not tested for commercially.

Please read the letter carefully, in its entirety. It came through with different fonts when I cut and pasted it from my download, but it is complete. The first page ends with instructions to write to Dr. Bernier or Jessica Mandell. The second page starts with the word Protocol and ends with Dr. King’s info.

Unchanged from my original post is the fact that participation is free as the study is funded by our U.S. National Cancer Institute and private foundations. Also unchanged from my original post is that every woman will be told her individual results. Again, I find this policy of the King lab extremely important. Knowing if you have other gene mutations that cause breast cancer may turn out to be important information for you and family members.

Further information that I have is that anyone living anywhere is eligible to join the study as long as the criteria are met and the blood samples can be sent expeditiously.

n.b. I am adding this today March 20th. I just found out from a wonderful young man, overseas, that he was told that unless his wife’s blood is drawn and sent FedEx in the U.S. his wife can’t join the study. I confirmed what he was told, today. This is a consequence of holdups in U.S. customs since 9/11. Just want to make sure our overseas members are aware of this restriction and you have my apologies for the original misinformation. Totally unintentional but I feel especially bad about it. Again, sorry, my friend.

For people in other countries there is no requirement that your BRCA testing had to be done in the U.S. Specifically, dear sister Helen, if you had your BRCA testing done via Canadian Health Service you can join the study as long as blood is drawn and sent from U.S.. Anyone who has a VUS result is also eligible to join as the criteria is that you have been BRCA tested, not what your results are.

Summing up, any woman who was diagnosed (at any age and with or without family history) with TNBC and tested BRCA positive or BRCA negative, by commercial tests in this country (if in the U.S.), is eligible for the study. Also, any woman under the age of 40, with any type of invasive breast cancer is eligible for the study, as long as they tested BRCA+ or BRCA-. Anyone who was tested in other countries can join the study if they meet the criteria, but there blood draw for the study must be done in the U.S. Again, please do not rely on my words. Please look at the letter from the King Lab below.

The other new information, from my original post is that there is an estimated six months before test results are available. 

I would encourage all here to discuss this study with your medical team and Certified Genetic Counselor.
Please do not rely on any of my words rather be guided by the two page letter and also information you may receive after writing to Dr. Greta Bernier or Jessica Mandell. Please confirm anything I have written above with them. It is also my understanding that one of the criteria is that for a woman with TNBC to be considered for the study it must be determined by Dr. Bernier, via your pathology report that the cancer was invasive which is overwhelmingly the case with most TNBC. That is why I wrote "almost any woman” above.

If anyone is interested in this study, please write to Dr. Bernier at the email shown below gretar@uw.edu

For those of you who have written to her already at the other email address I showed in the other thread I would suggest writing to her again if you haven’t heard from her within a week.

It is not a requirement to do so but I think it would be helpful if you mention that you read the letter from the King lab on the TNBC website.

warmly,

Steve

p.s. I consider Dr. King to be one of the country’s leading experts on breast cancer. She is the one who first identified and named the BRCA1 mutation in 1994. She and her marvelous lab continue to try to unravel some of the mysteries and I hope this study will do much to advance the science. Her mission is unchanged and pure-to help women with breast cancer. Yes, she has other interests, scientifically, but breast and ovarian cancer remain her main focus. 

She is absolutely one of the most extraordinary women I have ever met and I am honored that she is in my life. 

warmly,

Steve



University of Washington

SCHOOL OF MEDICINE

________________

GENOMIC ANALYSIS OF INHERITED BREAST CANCER AMONG WOMEN DIAGNOSED

WITH TRIPLE-NEGATIVE DISEASE OR WITH DIAGNOSIS AT AGE 40 OR YOUNGER

Dear Colleagues and Friends:

We are expanding our research studies of inherited predisposition to breast cancer. For more

than 35 years, we have studied breast cancer in families severely affected with the disease. We

are now able to extend these studies to include two additional groups of women: women

diagnosed with breast cancer at age 40 or younger, regardless of family history, and women

diagnosed with triple negative (i.e. ER negative, PR negative, and HER2 negative) breast

cancer, also regardless of family history.

The reason for expanding our study is that patients with triple negative breast cancer or with

very young age at diagnosis are more likely to carry inherited mutations in BRCA1, BRCA2, or

any of the other known breast cancer genes. With current genomics technology, we can fully

screen all these genes efficiently.

Our study includes complete screening of all known breast cancer genes, including BRCA1 and

BRCA2 and approximately 20 other genes. We use genomics tools developed in our lab for this

purpose. Our tools detect all classes of mutations in these genes, including genomic

rearrangements of all sizes. The study is a research project, sponsored by the U.S. National

Cancer Institute and by private foundations, so there is no charge to participants. Each

participant receives her results, and with her permission, her results are also sent to her

physician and genetic counselor. Our study is intended for women who have already been

screened commercially for BRCA1 and BRCA2.

Eligibility

Criteria for the study are as follows:

• Invasive breast cancer diagnosed at age 40 or younger, regardless of family history, OR

triple negative invasive breast cancer diagnosed at any age, regardless of family history

AND

• If in the U.S., prior commercial testing for BRCA1 and BRCA2, regardless of results of

that testing.

Referral

Potential participants may refer themselves, by writing to Dr Greta Bernier at gretar@uw.edu to

express interest. Alternatively, physicians or genetic counselors may refer potential participants

by writing to Dr Bernier or to Jessica Mandell, MS, CGC, at jmandell@slc.edu

Department of Medicine and Department of Genome Sciences

University of Washington, Seattle WA 98195-7720


Protocol



Potential participants are asked to write to Dr. Bernier expressing interest. She will answer by email, asking for faxed copies of pathology reports and of prior results of BRCA1 and BRCA2 testing

After confirming eligibility, Dr. Bernier will send study details, the consent form approved

by our IRB for the project, and a questionnaire regarding breast cancer risk factors and family history.

Shortly thereafter, our genetic counselor Jessica Mandell will contact the eligible participant by phone to review the study and obtain consent.

Ms Mandell will also send the participant a kit for obtaining a blood sample from which 

we will extract DNA and RNA. The kit will include a

prepaid FedEx return label with our address. We will ask participants to include the

questionnaire and other paperwork in the kit when returning it to us.

No travel is necessary for participation.

Results and privacy


Our lab is CLIA approved to provide genetic testing results. Testing will require approximately 6 months from the time we receive a blood sample.


 If we find no abnormality in any of the known breast cancer genes, we will send a letter with that information to the the participation.

If we find an abnormality in one or more of the genes, Jessica Mandell will contact the participant by phone.

She will discuss the results and explain what is known about the abnormal gene.

We do not provide medical advice, but with a participant’s permission we will provide results to the participant’s physicians and genetic counselor.

We keep results completely confidential,

providing them to anyone else only with the participant’s explicit consent.

Thank you for your interest in our study. Please accept our very best wishes.

Sincerely,

Greta V Bernier, MD

Resident Physician, Department of Surgery

Research Fellow, Division of Medical Genetics

gretar@uw.edu

Jessica B Mandell, MS, CGC

Certified Genetic Counselor and Research Coordinator

jmandell@slc.edu

Mary-Claire King, PhD

American Cancer Society Professor

Department of Medicine and Department of Genome Sciences

mcking@uw.edu

School of Medicine



Edited by steve - Jul 02 2012 at 10:54pm
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 cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2012 at 9:08pm
I received an email from Dr. Bernier this evening with the associated paperwork. 

Blair
Lump found 11/08 @51
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad., No recon. NED 1/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mags20487 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2012 at 10:00pm
I am def going to contact them and participate if I am found eligible.  I really want to know if my children are at risk of getting this rotten disease.
 
maggie
Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2012 at 10:14pm
I sent an email on Sunday and I too got a response back today!! I also passed this on to my oncologist in Indi because he had not heard about it yet. Thanks so much Steve for posting this!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2012 at 10:14pm
Thanks for letting us know, Blair and Deb. Glad you received a prompt response.

warmly,

Steve


Edited by steve - Feb 21 2012 at 10:15pm
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: Feb 21 2012 at 10:15pm
Blair,

I received an email too.  I need to download and print out the paperwork and start filling it out.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2012 at 10:17pm
Thanks to you, too, Donna for the info....

warmly,

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 krisa Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2012 at 11:31pm
Heard back from Dr. too. I am going to bring this to my onc's attention

ps... This study is really exciting for me, cant wait to see the results.

Edited by krisa - Feb 21 2012 at 11:33pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 2:35am
thank you Steve. I received and downloaded my info this evening. It will be an honor to be part of such a study.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 11:46am
I too received the email and am excited to be part of the study.
However, I have already run into a snafu regarding who will do the blood draw. At U of M where I am being seen, my oncologist told me that the nurses and technicians are busy and there is no guarantee that I will be able to get my blood drawn there.  Also there is a charge associated with the blood draw. I will next try my primary physician (also U of M) and see if I have better luck there.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 6:50pm
I received my email this afternoon too.  Thanks for the info, Steve.  I know this is probably a stupid question, but her instructions, as least as far as I have read on the documents she sent, doesn't say anything about filling out these documents and sending them back -- just faxing or emailing our BRACA and path reports.  Are we supposed to fill the documents/authorizations out and go ahead and send them, or are we supposed to wait for further instructions.  I guess we can blame my ignorance on chemo brain, right?  LOL
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 7:46pm
I also received a response to my email and sent copies of Susan's path report and BRCA analysis today. This afternoon I received an email saying that they received the info and that Susan would now be contacted by their genetics counselor.  My understanding is that the first step is to send ONLY the path report and BRCA results for them to review and verify that you are eligible to participate in the trial. Once they verify your eligibility, you will then be contacted by the genetics counselor who will review the consent form with you and answer any questions you may have about the family history questionnaire. I believe the initial email I received said that you would return the completed family history questionnaire with the blood sample after you are accepted into the trial. I am writing this from my recollection of what they sent me yesterday in the initial email response. Please review the attachments to the email they send you to make sure.
 
We are very excited about the opportunity to participate in this trial. Thank you, Steve, for bringing it to our attention.
 
Martin


Edited by TNinTN - Feb 22 2012 at 7:47pm
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 9:18pm
Dear Bama Rachel,

I believe Martin’s assessment is correct.

Dear Lee,

I hope you have better luck with your primary care physician.

Dear Kirby,

glad you are joining...I posted on another thread about CPIC event March 3 at Golden Gate Club, Presidio.
Hope you can make it and if you think others might like to come please alert them. Thanks. would love to see you and anyone else who can come.

Dear Martin,

Thank you for being you..

warmly,

Steve

p.s. had lovely dinner with my daughter tonight and she said she will write Dr. Bernier tomorrow to join the study.
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 nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 9:31pm
Thanks Steve! I wrote to them yesterday and sent them by BRCA report and today they wrote back and asked for my path report and sent me the forms for review. I sent the path back so now we'll see. Such an interesting study. I love science! (I hope it moved faster in this field though...)

Best to all,

Natalia
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2012 at 9:40pm
Steve,
 
I work on Saturday's so attending the event at the presidio will not work. I was quite disappointed. I hope to hear all about it after the fact. Thank you for mentioning it. I'll miss seeing you.
 
All of you are so good to have your path reports and genetic onfo on hand. I must have dumped mine at some point [ after a while one does sometimes think they need to move on !] I am going to the medical offices to get copies tomorrow.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KatieMarie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2012 at 6:29pm
Steve, THANK YOU so much for posting this.  I emailed and got a quick response and got my path reports in.  This is pretty exciting stuff, I have a seven year old daughter, it would be nice to have more information for her.
Thank you Steve for all your gentle words for everyone.  It is like a balm to my soul to read your words of solace and encouragement.
God's blessings on you and your family,
Katie
 
IDC dx 4/24/09, Age 40
Two surgeries, three tumors: 1.4cm,4mm,2mm; Ki67=75
Stage 1, no node involvement, clean margins
BRCA 1/2 negative,
Chemo: AC dose dense then Taxol dose dense, then rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2012 at 9:32pm
Hi Steve and everyone,

I wanted to pass on that these folks are doing a fantastic job of getting right back to people. I had a very fast response to the initial email and I spoke to the genetic counselor on Friday. They are currently waiting on some of the supplies to come in but will be Fed-Ex-ing the blood draw things as soon as possible.

You all are correct- all you need to send initially are the pathology and BRCA results. You are able to send the questionairre back with the blood sample or you could complete it and send it after you talk to the counselor but before completing the blood draw.

They indicated that they anticipate 6-8 months before getting results to people and you indicate on the paperwork if you want results shared with you or not- silly question!!

Thanks so much Steve for bringing this to our attention! Let us all hope that they are able to find more genetic clues to end this monster!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2012 at 7:13pm
I, too, sent in my path report and BRCA results on Friday. Received an email today from Dr. Bernier that I was accepted into the study and will hear from Ms. Mandell soon.

Steve, thank you ever so much for informing us of the study. It is exciting to be doing something that might help them unlock more clues to the mystery of breast cancer.

Warmly,
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2012 at 12:38am
I heard today that I qualify for the study.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2012 at 6:39am
Dear all,

thanks to all for letting us know if you qualify for the study and plan on joining. And of course, there is no obligation to tell us or join but I think it is helpful to know that we are reacting as a TNBC family in an effort to better understand TNBC for those in our beloved family and their siblings/children and perhaps even parents.

I think there is a slight chance that there will be ‘actionable’ information that may help a woman with TNBC. That certainly would be a reason to join but most importantly I think your participation in the study will help advance the science so that eventually we may have more information about TNBC and some other genes that may be involved. 

That could turn out to be very important information for the future and future generations. I strongly believe that once the results of this study are published scientists will key in on the findings and try to further study the genes involved in an effort to ‘translate’ that knowledge from the lab to the clinic.

Knowledge is power in my view and so much about TNBC is currently hidden. Hopefully this research study will shed some light. In my family, as an example, it may turn out that my daughter has some other gene mutation, that will be found in this study, in addition to the BRCA mutation we have. It may turn out that I have it, too and some of her siblings as well. Hopefully, at some point, we can test for a new gene and that information may be important now or down the road. 

For those of you participating, thank you. And to those who may decide not to, my heart is with you, as well. And no explanations are necessary nor do any results need to be shared down the road. I have a feeling, though, based on our wonderful family that eventually some will share and we will all learn from each other.

I spoke to Deborah (Debris) recently and we agree that neither of us had ever seen a place like the TNBC Foundation website. There is a culture of sharing, respectfully, and a gentleness and intelligence about the support and concern found here that is palpably authentic. Despite all the difficulties this family of ours continues to endure, we are truly blessed to have each other in our lives. 

warmly,

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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