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    Posted: Feb 09 2018 at 6:48pm

Cancer Gene Screening More Cost Effective in the General Population Than High-Risk Groups

A study published in the Journal of the National Cancer Institute indicates that screening the general population for mutations in specific genes is a more cost-effective way to detect people at risk and prevents more breast and ovarian cancers compared to only screening patients with a personal or family history of these diseases.

Current guidelines recommend that only those with a personal or family history that could indicate a greater risk of developing cancer be tested for gene mutations that can cause the disease. However, the successful use of testing for high-risk groups has led many to consider extending genetic testing for cancer to the whole population.

Recent technological advances in genomic medicine make large-scale genetic testing possible. The new study evaluated the cost effectiveness of screening the general population for ovarian and breast cancer genes, compared to only screening high-risk people. It found that population-based testing for mutations in specific genes in women over 30 years old was cost effective and prevented more cancers and deaths than only carrying out genetic testing in women whose personal or family history indicated a greater risk of developing cancer.

Mutations that cause cancer can occur in many people with no history to indicate a risk. These people are therefore not included in screening programs that target high-risk patients and the mutations remain undetected. The researchers of the new study estimate that implementing a program to test all women over the age of 30 could result in thousands fewer cases of ovarian and breast cancer in women in the US and UK.

"Population testing for breast and ovarian cancer gene mutations is the most cost-effective strategy which can prevent these cancers in high risk women and save lives,” said the paper's lead researcher, Ranjit Manchanda. "Our findings support broadening genetic testing for breast and ovarian cancer genes across the entire population beyond just the current criteria based clinical approach. Falling costs of testing and technological advancements has made testing populations feasible. As knowledge and societal acceptability of this type of testing increases, it will provide new opportunities for cancer prevention and the way we deliver cancer genetic testing in health care. This approach can have important implications given the effective options that are available for ovarian and breast cancer risk management and prevention for women at increased risk."

SOURCE: 
Journal of the National Cancer Institute, January 18, 2018 

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: Jan 19 2018 at 10:21pm

Two new breast cancer genes emerge from Lynch syndrome gene study

Researchers at Columbia University Irving Medical Center and NewYork-Presbyterian have identified two new breast cancer genes. Having one of the genes—MSH6 and PMS2—approximately doubles a woman's risk of developing breast cancer by age 60.

The study, in collaboration with GeneDx, a genetic testing company, was published online today in Genetics in Medicine.

The two genes were previously known to cause Lynch syndrome, an inherited condition that raises the risk of colorectal, ovarian, stomach, and endometrial cancer. Lynch syndrome is the most common inherited cause of colorectal cancer, accounting for about 3 percent of newly diagnosed cases. One in 440 Americans has a gene variant that causes Lynch syndrome.

Researchers had suspected that Lynch syndrome genes may also cause breast cancer. Some studies had found a link, whereas others had not.

"People with Lynch syndrome aren't thinking they may also be at risk for breast cancer," said Wendy Chung, MD, PhD, the Kennedy Family professor of pediatrics (in medicine) at Columbia University Irving Medical Center, clinical geneticist at NewYork-Presbyterian/Columbia, and the study's senior author. "Given the fact that genomic analysis is becoming more common in patients with a personal or family history of cancer, we have an opportunity to do more targeted breast cancer screening in women who carry any of the genes associated with risk for this disease."

The researchers analyzed a database of more than 50,000 women who had undergone multi-gene hereditary cancer testing between 2013 and 2015. Of these, 423 women had a mutation in one of the four genes that cause Lynch syndrome: MLH1, MSH2, MSH6, and PMS2.

Additional analyses revealed that women with a mutation in two specific Lynch syndrome genes—MSH6 and PMS2—had a two-fold higher risk of breast cancer compared to women in the general population.

Based on the incidence of cancer in the study population, the researchers calculated that about 31 to 38 percent of women with cancer-causing MSH6 and PMS2 variants will develop breast cancer, compared to around 15 percent of women in the general population.

"The new study suggests MSH6 and PMS2 should be added to the list of genes to screen for when there is a history of breast cancer," said Dr. Chung, who is also director of the clinical genetics program at NewYork-Presbyterian/Columbia. "Screening for these genes also would give these families potentially life-saving information to prevent colon cancer by encouraging individuals with the genes to increase the frequency of their colonoscopies."

https://m.medicalxpress.com/news/2018-01-breast-cancer-genes-emerge-lynch.html

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)
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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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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: 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 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 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 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 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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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 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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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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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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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

 
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1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 30 2013 at 7:56am
Dear Donna,

as always, thank you for this important post. I think the results of the study are extremely important for our community. Testing BRCA1/2- negative may not be the end of the story. I have worked/am working with several families with profound histories of breast/ovarian cancer who have tested BRCA1/2- negative; however, further testing may show other mutations that may be the cause of the cancer in those families. THe knowledge of another gene mutation may be as important to that family as the BRCA mutation and it may be extremely important for loved ones to be tested if the mutation is determined to be in the family.

Here is some info on the BROCA test. Many of you have written, or told me privately, that you are disappointed that the free study offered by the King lab is closed.


I am going to try to get more details on the BROCA test and while the turnaround time is long (84 days) it may be worthwhile for some here to take. As always, please consult your Certified Genetic Counselor, if possible. 

There is an 800 number listed for questions and I will be calling it today with some questions I have about the BROCA test and will revert.

1-800-713-5198

warmly,

Steve


Edited by steve - Oct 30 2013 at 8:14am
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: Oct 30 2013 at 7:17am
Evaluation of all 24 genes implicated in breast cancer explains occurrence when women have normal BRCA genes

Since 1994, many thousands of women with breast cancerfrom families severely affected with the disease have been tested for inherited mutations in BRCA1 and BRCA2. The vast majority of those patients were told that their gene sequences were normal.

With the development of modern genomics sequencing tools, the discovery of additional genes implicated in breast cancer and the change in the legal status of genetic testing for BRCA1 and BRCA2, it is now possible to determine how often families in these circumstances actually do carry cancer-predisposing mutations in BRCA1, BRCA2, or another gene implicated in breast cancer, despite the results of their previous genetic tests.

This was the challenge addressed by Mary-Claire King, Ph.D., American Cancer Society Professor of Medicine and Genome Sciences, and Tomas Walsh, Ph.D., Associate Research Professor of Medical Genetics, both at the University of Washington, Seattle. They conducted complete genomic sequencing of all genes implicated in breast cancer on DNA samples from breast cancer patients who had normal BRCA1 and BRCA2 commercial test results. The commercial testing occurred because the patients had a severe family history of breast cancer, defined as a family with three or more relatives affected by breast or ovarian cancer.

The results were presented by Dr. Walsh at the American Society of Human Genetics 2013 meeting in Boston.

The researchers found that over 25 percent of index patients with normal results from commercial testing of BRCA1 and BRCA2, but with families severely affected by breast cancer, could be resolved by sequencing all genes known to be involved in breast cancer.

Sequencing was carried out using BROCA, an openly available, targeted capture and genomic sequencing approach that was developed and validated by Drs. Walsh and King in 2010. BROCA detects all single base substitutions, insertions and deletions and copy number variants in all 24 genes implicated in breast cancer.

The researchers used BROCA to test 2,285 members of 743 families with at least three relatives with breast or ovarian cancer. Each of those families included at least one woman with breast cancer who had received normal results from complete commercial genetic testing for BRCA1 and BRCA2. The commercial tests were based on both Sanger sequencing and supplementary testing for large genomic rearrangements in both genes.

Of the 743 families, 26% (191) were resolved by BROCA. The 191 resolved families were found to harbor 149 different inherited, damaging mutations in 18 distinct genes.

Of the 191 resolved families, 35% (66) carried inherited, damaging mutations in BRCA1 or BRCA2 that were not detected by commercial sequencing. The scientists explained that the BRCA mutations were not detected by commercial testing for one of two reasons. In some families, the patient who was tested had normal sequences of BRCA1 and BRCA2, but her relatives with breast cancer carried a mutation in one of those genes. In other families, both the patient who was tested and her relatives carried a BRCA1 or BRCA2 mutation of a type not reported by commercial testing.

In the remaining families resolved by BROCA, 65% (125) carried inherited, damaging mutations in genes other than BRCA1 or BRCA2 that also have been associated with breast cancer. The researchers found that 18 different genes harbored cancer-predisposing mutations in those 125 families, but each affected person carried a mutation in only one gene.

Carriers of mutations in some of the genes were at significantly increased risk of ovarian cancer for women and increased risk of breast cancer in men as well as in women.

Comprehensive testing is rapidly becoming more widespread. "It is important to determine more precisely the risks associated with damaging mutations in each of these genes so as to incorporate them most effectively into clinical care," Dr. Walsh said.

These assessments are best undertaken by sharing data across all centers that carry out genetic testing for breast and ovarian cancer risk, said Dr. King.

http://www.medicalnewstoday.com/releases/267950.php

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 Loveforlife Quote  Post ReplyReply Direct Link To This Post Posted: Sep 28 2013 at 5:44pm
Thanks for the answer that the study is closed. 
Dx 1/2011 2b, Gr 3, TNBC, AC/T chemo, L lumpectomy/re-excision/lymph node diss/rads. DX DCIS R Breast 4/2012 - Lumpectomy/Rads.
DX Lung Spine mets 5/2013 Carbo/Gemzar 10/2013 Xeloda 1/2014 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 27 2013 at 11:24pm


Originally posted by steve steve wrote:


<span ="Apple-style-span" style="font-family: arial; font-size: small; line-height: normal; "><blockquote ="cite">
Dear TNBC Family,

I just heard back from Dr. Mary-Claire King and she reports that "enrollment in the study is closed." Also, she informed me that in the next few months all DNA from every participant will be sequenced, the results evaluated and the results provided to participants. However, there is no precise schedule to all of this so that there is "no one size fits all" date that can be given.

She explained that- 

"Research and clinical testing occur in different time frames. Because we are searching for new mutations in new genes, and therefore a great deal more follow up is required, the time frame is inevitably longer than for a more limited test."

Dr. Bernier is a breast surgeon and will be returning to her practice after her fellowship in the King Lab working on this important project. I wanted to take this opportunity to thank her for her work on the study and I wish her much success in her career as a breast surgeon. On a personal level I am a bit sad that enrollment is closed but I believe much good came from the study. I don't have any specifics but I am certain that some women are now better informed than they were, previously. One of the marvelous things about all of Dr. King's studies, to date, is that the participant is informed of the results.

Thanks to all at the King Lab for this study and to all, please be patient..

warmly,

Steve
</span>


Based on Steve's post I believe the study is now closed. It was a great opportunity for our TNBC family and hopefully other opportunities will be available in the future.
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 Loveforlife Quote  Post ReplyReply Direct Link To This Post Posted: Sep 27 2013 at 4:39pm
I can't tell from the thread if this study is closed to new participants at this time. Anyone know the answer?
Dx 1/2011 2b, Gr 3, TNBC, AC/T chemo, L lumpectomy/re-excision/lymph node diss/rads. DX DCIS R Breast 4/2012 - Lumpectomy/Rads.
DX Lung Spine mets 5/2013 Carbo/Gemzar 10/2013 Xeloda 1/2014 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 27 2013 at 2:26pm
Thanks for your responses, Steve & Donna! And yes, Steve, I will be volunteering again this year at the Breast Cancer Symposium in December. Don't know yet what days I will be volunteering but would love to see you while you are here in San Antonio.

Jessica did tell me that the BARD1 mutation carries a risk for breast and ovarian cancer so I am hoping and praying that my family members are open to being tested for that gene.

I too am looking forward to the movie, Decoding Annie Parker.

Thank you Steve & Donna! You have both helped those of us on the forum in more ways than you will ever know.

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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