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dragonwing 
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Joined: Feb 07 2009 Location: Michigan Status: Offline Points: 327 |
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 Topic: BRCA TestingPosted: Feb 23 2009 at 3:02pm |
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Hi Everyone!
I am still new not only to the TNBC Forum, but new to understanding all that being a TNBC survivor entails. On March 17, I am have the BRCA test done. Now, from what I understand is that this is a blood test that is done to see if I have the genetic whatever that could possibly make my TNBC hereditary. Can someone please explain to me in laymen's terms what this is all about and what results I want to have. Obviously, I am hoping not to pass anything on to my daughter or grandchildren. The main reason I am having this test done is because I am adopted, and I know that my birth mother was also adopted so there is no family medical history and the Wonderful State of Michigan tells me that my family history is none of my business!  Personally, when it comes to medical needs -- I think that should trump any adoption confidentiality, however, obviously Michigan doesn't agree with me. |
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Joyce
http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Feb 23 2009 at 3:17pm |
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Dear Joyce,
I'm so sorry that you are going through this now. Your and your medical team are smart to check out a genetic mutation. While not all TNBCer's have the BRCA1+ mutation, 85% of BRCA1+'s who get cancer are TN.
The risks can be different from BRCA1 and BRCA2. For instance, BRCA1 risk is around 87% in a lifetime for BC and about 50% for OVCA. It tends to hit earlier in life (premenopausally). BRCA2 tends to hit later in life and also is more likely hormone positive. The odds of a man having BC are higher with BRCA2 than BRCA1.
There is a 50% chance, if you are positive, of passing the mutation on to each of your children.
It's difficult with being adopted, but a certified genetic counselor can tell you a lot about what it means to have the mutation.
I also HIGHLY recommend the FORCE website where you will find HUGE amounts of information about BRCA and other hereditary mutations. www.facingourrisk.org
I hope that this helps.
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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ChrissieD
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Joined: Dec 30 2008 Location: United States Status: Offline Points: 131 |
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Posted: Feb 23 2009 at 3:22pm |
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Hi Joyce -
The genetic testing test for 2 gene mutations BRCA1 and BRCA2. It is a simple blood test providing you tolerate having blood taken okay. Results take up to 2 weeks to come back. You want to test negative for both which means your tumor was not caused by the BRCA1 or BRCA2 mutation. There are more significant implications if you test positive.
Did you meet with the genetic councelor yet? You want to be sure to do that before they do the test. Mine happened to be the nurse practitioner at the breast center of my hospital. He or she will go over the statistical implications if you were to test positive and possible next steps to consider (i.e., oopherectomy, etc.) She was the one who ordered my test the day I met with the oncologist and radiologist following my surgery and pathology coming back.
Hoping you test negative!
Chrissie
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39 from MA, Mom(8.5 and 6),
Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 23 2009 at 3:24pm |
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Joyce,
You are hoping for BRCA1- and BRCA2- without a variance. That means that your cancer is not hereditary/not genetic.
If you have time please go to the FORCE web site. There is a ton of info there as to the BRCA gene mutation. 85% of BRCA1+ are triple negative. I am not certain as to the % of BRCA2+. Caryn will see this and respond, and trust me she is the expert on the BRCA status.
It is www.facingourrisk.org
I think that the state of Michigan is still living in the 18th century. Medical information is so very important. Probably more than half of PA's laws are obsolete also. Laws that were passed in the 1800's, and are still in effect.
Nancy
see...I told you she would reply as did Chrissie...all in the time it took me to type!!
 Edited by Nancy - Feb 23 2009 at 3:26pm |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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dragonwing
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Joined: Feb 07 2009 Location: Michigan Status: Offline Points: 327 |
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Posted: Feb 23 2009 at 3:25pm |
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No, I have not met with anyone yet, but I have gotten a ton of paper work to fill out already -- of course, 4 pages of it, I can leave blank since I have no family history... I the starting point!
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Joyce
http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 23 2009 at 3:27pm |
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Joyce,
It took less than 2 weeks for Lori to get the results....but it was 2 agonizing weeks.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Feb 23 2009 at 5:25pm |
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Hello Joyce and welcome!
Lots of good information out there about BRCA testing, I'm sure you're reading up. From a practical standpoint, you and your doctors will often take this status into account when deciding on treatments. For example, since there is an increased risk of ovarian cancer with BRCA+, many women choose to have an oopherectomy (ovaries out) or a complete hysterectomy after their bc treatments. If you are positive, your daughter will likely choose to be tested as well, and may want to be very proactive with mammograms, etc. You will run into recent articles stating that family history often trumps BRCA- status; in other words, since you have been dx, even if your BRCA test comes back negative, your daughter and grandchildren should be on heightened alert and vigilent about prevention. It's a lot to take in! Best of luck with everything. Come back often. Love and light, Donna |
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Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
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vickyann
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Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
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Posted: Mar 06 2009 at 2:57pm |
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The BRCA testing in Texas is 3000.00 dollars. Is there any place you can have it done cheaper? I do not quailfy for assistance. My insurance does not cover it.
If I test positive I want to have my other breast removed. Am i crazy or scared?
vickyann
Dx12/2007
stage 2
no nod,single mast
chemo 6 tac
I have not had recon yet
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dragonwing
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Joined: Feb 07 2009 Location: Michigan Status: Offline Points: 327 |
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Posted: Mar 06 2009 at 3:00pm |
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Well, unfortunately, my daughter is one of the many here in Michigan with no insurance and no full-time job so unless she can find a place that will test for close to free, she won't be able to afford testing.
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Joyce
http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 06 2009 at 3:05pm |
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Joyce,
If you test positive Donna (sibu) told me that you can talk with the people at Myriad, and there is s possibilty that they will test your daughter for free. I will have to email her to ask. I will get back to you.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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dragonwing
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Posted: Mar 06 2009 at 3:22pm |
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What is Myriad and where is that?
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Joyce
http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
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shellieh51
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Posted: Mar 06 2009 at 3:42pm |
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Ladies,
Please don't forget that the BRCA genes can be passed down through the father too. I tested negative but my husband's mother (who was adopted) died of BC at the age of 51. When I had my counseling, I was surprised at attention given to my father's family history. Best wishes for a negative result. |
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dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -
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dragonwing
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Joined: Feb 07 2009 Location: Michigan Status: Offline Points: 327 |
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Posted: Mar 06 2009 at 3:47pm |
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Yeah, I met with an instructor at the college I teach at. He teaches genetics and biology, and he was telling me that also -- that 1/2 of our DNA comes from Mom and the other 1/2 from Dad so there is a potential to get 2 positives, 2 negatives, or a positive and a negative reading, but all you need is one positive to be a "carrier" so to speak.
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Joyce
http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 06 2009 at 3:53pm |
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Joyce,
Myriad is the genetic testing labs. I have a few links for you. This is where they send your blood to test for the BRCA gene mutation.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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vickyann
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Posted: Mar 06 2009 at 4:29pm |
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Nancy,
Is the cost the same in every state? Is 3000.00 reasonable?
vickyann
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kirby
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Posted: Mar 06 2009 at 4:34pm |
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$3000.00 is what it cost for testing in 2000- 2003 so the price hasn't gone up at all. So that may now be considered a bargain considering inflation/our economy !
When & where I had it done it, included several [at least 3] meetings with 2 geneticists, with them telling me to call them with any little questions, several meetings with a therapist, to ensure handling of information. I assummed that was standard but I have never heard anyone else mention this.
Edited by kirby - Mar 06 2009 at 4:40pm |
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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vickyann
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Posted: Mar 06 2009 at 4:37pm |
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Thank you...Kirby
vickyann
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 06 2009 at 4:57pm |
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Kirby,
Lori had paperwork to fill out and then she had a...what do you call it...where you sit and talk to someone with screen in front and you can see each other? Oh crap...my mind is a blur tonight. That's all she had, and then went to the lab for the blood work. She got the results in 2 weeks, and they thought that my husband's sisiter (dx with bc 14 years ago) was a closer family member than my maternal grandmother who died of OVC. Lori tested negative and not even a variance.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 06 2009 at 5:00pm |
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Vickyann,
There is only one place that does the testing and that is Myriad. It is in Utah. So I am guessing that there is a standard fee? You can check the FORCE site and maybe there is more info.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Crystal
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Joined: Mar 07 2009 Location: Alabama Status: Offline Points: 15 |
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Posted: Mar 07 2009 at 2:13am |
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Hey everyone! I am new to this site and have found it very helpful and it gives me hope. My mom has TNBC. She has not had the BRCA test. How does she go about getting this test? Does she need to have her doctor request it? Does insurance pay? Any info on how to go about this would be helpful.
Thanks,
Crystal
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