Very Important News re: TNBC/BRCA testing |
Post Reply 
|
Page 123 5> |
| Author | |
SagePatientAdvocates 
Senior Advisor 
Joined: Apr 15 2009 Status: Offline Points: 4748 |
 Post Options
 Thanks(0)
 Quote Reply
 Topic: Very Important News re: TNBC/BRCA testingPosted: May 13 2011 at 1:19pm |
|
Dear TNBC Foundation family, Recently, I talked, at length, with a dear friend at Myriad Genetics, about the fact that many women who had limited insurance might have trouble getting tested for the BRCA mutation (Myriad calls it BRACAnalysis). Also, most insurance companies, unfortunately, my friend agreed, do not pay for Myriad’s BART testing. However, very importantly, my friend pointed out to me that several weeks ago there was a change in the NCCN guidelines. http://www.nccn.org/ I just printed out about 50 pages of the guidelines and I am too short of time to try to summarize the key points, but I will try my best to do so within the next week, BUT, as was pointed out to me, there is a major change in the guidelines that affects our community. Under the Genetic/Familial High-Risk Assessment BR/OV1 criteria has been separated into two sections “an affected individual” and “an unaffected individual with a family history.” For an affected individual (i.e. a woman with breast cancer) a new bullet has been added- Triple Negative (ER- PR- HER2-) Breast Cancer; and the guidelines further state that, it is suggested, that every woman < age of 60, diagnosed with TNBC, should be tested for the BRCA mutation. If you are currently being denied coverage please go back to your insurance company and give them a copy of the NCCN guidelines. If anyone is having trouble, printing them up, please send me a PM and I am happy to mail you a copy at no charge... I think this is absolutely wonderful news for our community and I will keep you all posted, as best I can. As you all know, I am not a medical professional, nor a genetics expert but the way I read the language any woman with TNBC < age 60 should be tested, if they would like, for the BRCA mutation, even absent family history. I have spoken to many women here who been denied this testing and cannot afford the cost but now, in my opinion, your insurance company will be much more likely to pay for it as they normally do not ignore NCCN (National Comprehensive Cancer Network, the leading authority in the country) guidelines. If anyone would like to talk about this please feel free to send me a PM and I will send you my contact information. I have written a lot on this topic because I feel it is so important. By testing, the results are not just important to you, personally, in many ways but is also essential information for other family members to have. Also, I would strongly suggest, that even if you have TNBC, and are getting tested that you try to speak to a Certified Genetic Counselor (CGC) who, in my opinion, is the best professional to explain what all the ramifications are of having a BRCA mutation. I would be happy to help you find a counselor in your area or you can go to http://www.nsgc.org In my unprofessional opinion, it is ideal to try to see a board Certified Genetic Counselor, if possible, rather than a genetic counselor who is not board certified. A CGC can also explain the significance of a positive BRCA mutation regarding breast and ovarian cancer. It is my understanding that the risks for ovarian cancer are distinct from breast cancer. I am sorry if I am upsetting some here with this information, but I feel ‘knowledge is power’ and again, not just for you but for your loved ones. A personal aside....when I found out that my eldest daughter was BRCA1+ and I tested BRCA1+, as well,, a CGC explained to me that each of my six children had a 50-50 chance to inherit the mutation from me. Incredibly, I could not get it into my head that the odds were 50-50 and I was absolutely convinced that my youngest daughter would test positive. She was 24 at the time and the thought of her being positive was really deeply troubling me (those words are totally inadequate to express the angst I felt). Thank G-d, she tested negative and those results have brought us great peace of mind. And, for those of you who decide to test, you have my prayers for negative results. all the best, Steve p.s. my problems with the cost of Myriad’s tests remains but that is not under my friend’s control and I greatly appreciate the time he spent with me and calling the new (they were published just a few weeks ago) guidelines to my attention.
Edited by steve - May 13 2011 at 1:53pm |
|
|
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
|
|
 |
|
|
Martha
Groupie 
Joined: Mar 29 2011 Location: Texas Status: Offline Points: 61 |
Post Options
Thanks(0)
Quote Reply
Posted: May 13 2011 at 2:35pm |
|
I just recently was able to get my insurance (Tricare Prime - I'm a 20 yr military retiree) to let me get the BRAC 1 & 2 test done. Back in 2008, they denied me....saying my family history wasn't indicative that I would be positive, so they wouldn't agree to have me tested. I just received my results, and I am NOT BRAC positive. I am grateful to know that information, for myself, and for my 2 daughters. Don't know if the "change" in guidelines is why Tricare let me have the test or not....but I strongly recommend folks to go back to their insurance and see if they can be tested now, even if they have denied you previously. The worst that could happen, they say no. Also, it is my understanding that the price has actually gone down from when they first marketed the test. I am grateful that I am negative. Knowledge is power. I don't feel like I have to have a hysterectomy now to prevent additional cancers (ovarian or cervical).
|
|
|
Dx 10/08;mastect 11/08; T2/N1/M0;TACX6;rads 5-6/09; recur 11/09;recur 3/10; xeloda + Ixempx5;recur 1/11; gem + carbo + iniparib 2/11; BRCA1/2 -; dx prog 1/12; Havalen Mar Apr 12;Abraxane, May-present.
|
|
|
|
|
Charlene
Senior Member 
Joined: Aug 14 2010 Location: Atlanta, GA Status: Offline Points: 613 |
Post Options
Thanks(0)
Quote Reply
Posted: May 13 2011 at 2:36pm |
|
Steve,
I think this is great news. Thank you for everything you post on this site. Your contributions are invaluable.
Charlene
|
|
|
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED |
|
|
|
|
KatieMarie
Groupie
Joined: Jun 05 2009 Location: Missouri Status: Offline Points: 80 |
Post Options
Thanks(0)
Quote Reply
Posted: May 13 2011 at 2:47pm |
|
Thank you Steve for all your hard work. Bless you...
|
|
|
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 |
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: May 13 2011 at 3:13pm |
|
Steve,
This is great news indeed. I think everyone with TNBC should be tested for BRCA gene. I'm glad the guidelines have changed and this test should be covered for more women. 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 |
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: May 13 2011 at 3:46pm |
|
Dear all,
A favor please...if anyone here with TNBC, under the age of 60, with some insurance is still turned down after submitting the NCCN guidelines could you please let us know. I don’t want to get hopes up, only to find out, for whatever reason that testing is still being denied by an insurance company..I would definitely request that whomever is requesting a test from Myriad gives your insurance company a copy of the guidelines or a reference to them. Perhaps you can ask your insurance company if they have already established a code within BRCA testing for women with TNBC? Don’t know if they are doing that...that would probably be too easy, huh?
 I am not trying to pry and ask you your name, name of insurance company, policy number but just generically what reasons were given. Hopefully, my take on this is correct and things will be approved more smoothly. Posting this was kind of a Catch 22- if I am incorrect and these guidelines don’t help, I will feel bad about my misinterpretation but if I waited to see what happens many woman might not try to get insurance approval based on the new guidelines and then I would feel bad that I delayed this post...so two feel bads=one post. There are still some trials out there e.g. for BRCA1+ women and if you are positive the information is important so that you can meet the inclusion criteria.Dear Martha, I have been working with a woman who had BRCA testing denied, several months ago, despite a family history...she is in her late 40’s and about three weeks ago she got approved for testing. I have a feeling these new guidelines could have played a part in the approval, as well. all the best, Steve Edited by steve - May 13 2011 at 3:47pm |
|
|
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
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: May 13 2011 at 11:53pm |
|
Some more feedback from Myriad...
I spoke to someone at the company today...who did not want to be quoted by name and I was told the following- It is my understanding that the new NCCN guidelines will make insurance coverage for the BRCA mutation easier to obtain, for a woman with TNBC, especially if the woman is covered by a major insurance company that already has an ‘provider’ agreement in place with Myriad. The person I spoke to was also pleased to inform me that California women who are covered by Medi-Cal can now have their BRCA testing paid for by Medi-Cal if certain criteria are met. Medi-Cal, previously would not pay for testing. I was told that an agreement was reached this year between Medi-Cal and Myriad. It is my understanding that it might be 6 months to a year before most of the insurance companies would incorporate the new NCCN guidelines into their policies, but some have already done so...so, again, I would encourage those of you, with TNBC, who have been turned down or were reluctant to try to test because you feel you will be turned down to try again. Again, this applies to women with insurance, especially at major companies. There are more complicated guidelines regarding Medi-Caid (Myriad does not have an agreement with all the States..only about 30 of them) and I await some further guidance from Myriad as to which states they are working with. Here is Myriad’s announcement regarding Medi-Cal. In the past, I was extremely frustrated that Medi-Cal and Myriad did not have an agreement so I view it as very positive news that they now do. "We are pleased to announce that Myriad Genetic Laboratories is currently processing BRACAnalysis® samples for Medi-Cal members. Medi-Cal covers Comprehensive BRACAnalysis®, MultiSite 3 BRACAnalysis®, Reflex BRACAnalysis® and Single Site BRACAnalysis®. Defined medical criteria are published on-line and can be accessed via the following website: www.myriadpro.com/Medi-Cal.
For all BRCA testing, Medi-Cal requires preauthorization using their Treatment Authorization Request (TAR) that can be facilitated by Myriad’s Customer Service department. A completed test requisition form needs to be submitted with the sample in addition to copies of the patient’s insurance card(s) and a letter of medical necessity outlining the patient’s personal and family history of cancer and medical management options. In general, the turnaround time to obtain an authorization is one week.” Going back almost 7 years when my daughter and I were tested I paid an extra $200 (maybe $250?) to get ‘expedited processing.’ That enabled us to get the results in about ten days instead of 4-6 weeks. I was told today that the maximum processing time, from time of receipt of blood or saliva sample, is now 14 days, with results “almost always” done in 7 days. all the best, 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
|
|
|
|
|
jw
Newbie 
Joined: Sep 09 2010 Location: CT Status: Offline Points: 16 |
Post Options
Thanks(0)
Quote Reply
Posted: May 14 2011 at 12:34am |
|
THANK YOU SO MUCH, STEVE!
I was denied BRCA testing by my insurance because my tnbc cancer was not diagnosed at age 45 or younger. I had been to a genetic counselor for this testing and also for Lynch Syndrome. The Lynch Syndrome test was approved by the insurance company but the BRCA test was denied because of age. I was 47 when diagnosed with tnbc - if I had been 45 or younger it would have been covered. I plan to contact my genetic counselor on Monday and ask her about re-testing per this information. Will let you know the results of this inquiry - am very excited as I have a daughter and am concerned about her future. Thank you so much for all you do for the tnbc foundation - the information you provide and your care and compassion is fantastic. (I am a "lurker" on this forum but have learned so much from all of the brave women who post here) |
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: May 14 2011 at 2:19am |
|
Dear jw,
very kind of you to post and thank you for your beautiful words but it is I who is blessed to be in the presence of such marvelous women and their loved ones. They are my heroes.
your genetic counselor should have no problem in pulling up the guidelines from the link I gave but just in case here is the full title- NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) Genetic/Familial High-Risk Assessment: Breast and Ovarian Version 1.2011 (see page 4, top left, for reference to TNBC) NCCN.org published April 7, 2011 good luck, jw. Hopefully your insurance company will come through and if so, we will be rooting for a BRCA negative result. all the best, 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
|
|
|
|
|
Cinderwee
Groupie
Joined: Feb 05 2011 Location: AZ Status: Offline Points: 52 |
Post Options
Thanks(0)
Quote Reply
Posted: May 15 2011 at 1:40am |
|
Steve,
You are wonderful, thank you and bless you! Cindy
 |
|
|
Cindy 46
DX 11/29/10 Stg1 G3 IDC ER-PR-Her2- <1cm,cln marg,0/1 neg No BRCA Lumpectomy 12/28/10 MammoSite rads 1/10-1/14 Taxol/Her x12 DONE! CVP/Her ev 3wks x4 begin 6/23 Continue Her Mar2012 |
|
|
|
|
jw
Newbie
Joined: Sep 09 2010 Location: CT Status: Offline Points: 16 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 23 2011 at 10:10am |
|
Thank you again, Steve!
I am now relieved to find that I am BRCA 1/2 NEGATIVE! Less worry for my daughter's future - thanks to your information. The BRCA testing was again initially denied by Aetna but the geneticist requested reconsideration per the new guidelines and coverage was approved. I received the good news today. Many thanks for all you do here. And heartfelt hugs for all of the brave women on this forum who continue to help each other every day. Thank you thank you thank you! Janice : ) Edited by jw - Jun 23 2011 at 10:13am |
|
|
Dx 3/16/10 age 47; Stage 2a, Gr3; 2 tumors - 2.6cm + 2.4cm; BRCA Neg.
L-Mast 3/22/10; 0 nodes - clear margins; Chemo 4/29/10-8/5/10 Dose Dense ACx4 + Taxolx4 No Rads; |
|
|
|
|
denise07
Senior Member
Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 23 2011 at 11:18am |
|
Thank you Steve, if you don't mind me asking what is the BART test? |
|
|
DX Idc 10/07,st2,gr3,2/6 lymphnodes
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 23 2011 at 11:18am |
|
Dear Janice,
thank you for writing...I am so delighted you tested negative. I really appreciate the fact that you posted the information that the new NCCN guidelines changed Aetna’s perspective, as I hoped it would. There is much you have to dealt with; at least the BRCA mutation is not something you ever need think about, again, for you and especially your daughter. At times, the test does bring peace of mind. I am so happy that is the case now. You caught me during a particularly difficult time...so I must confess, I am crying as I type this...but they are tears of joy. Thank you so much for sharing your marvelous news. Didn’t expect that reaction, but there it is, and this is the place to share... Janice, you shall remain in my prayers, as are 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
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 23 2011 at 11:24am |
|
Hi Denise,
here’s a link that should be helpful...I shall write more on this later..sorry I have to run out. all the best, 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
|
|
|
|
|
DianeEE
Senior Member
Joined: Nov 29 2010 Location: Richland, MI Status: Offline Points: 105 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 23 2011 at 4:06pm |
|
Just a plug for getting the testing done absent any family history. We have no family history of breast cancer (or any other time of cancer). But, when I was diagnosed when I was 43, my surgeon pushed for genetic counseling & BRCA testing. I am BRCA2 positive. Because the gene comes down from my father (my sister & mother are both negative), and he has all brothers & uncles, the genetic mutation wasn't readily apparent. I am very fortunate that I had the information before I had surgery. So, I opted for a bilateral mastectomy as well as having my ovaries removed. Without the BRCA info., I probably would've had a single mastectomy. Also, just a plug for Myriad. I have a high deductible health plan which means that I had to pay for the entire cost of the test out of pocket. They were very good about setting up a payment plan with me so that I didn't have to come up with the entire cost of the test all at once.
Thanks, Steve, for your research & info. on insurance coverage. I was fortunate that I didn't have any problem with my insurance covering the test (though it was applied to my deductible). However, I was 43 at the time which may have made a difference.
Diane
|
|
|
|
|
Imasurvivor
Newbie
Joined: Jun 17 2011 Location: Greenville, NC Status: Offline Points: 30 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 28 2011 at 11:40pm |
|
This has been very interesting reading. I am anxiously awaiting my results.
Michelle |
|
|
|
|
Horse Lover
Groupie
Joined: Mar 06 2011 Location: Las Vegas, NV Status: Offline Points: 71 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 29 2011 at 12:39am |
|
Steve: Thanks for the great information. Although I am BRCA 1/2 -, I am wondering if the new guidelines cover further testing for other aleals (sp?).
|
|
|
57 years old, mother of two daughters. 5/09 lumpectomy, rad; 3/11 C/T 6X, clear scans; 9/11 bilateral/lymph nodes surgery, NED
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 29 2011 at 1:25am |
|
Hi Horselover,
It is my understanding that the BART test for additional alleles is normally not covered by insurance...you can check with Myriad on this...I would give them your family history and see if they can advise you if there is some way for the test to be covered. It is in their economic interest to do so..please let us know what you find out.. contact Customer Service at 800-469-7423 all the best, 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
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Aug 01 2011 at 10:53am |
|
bump for someone I just talked to..
all the best, 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
|
|
|
|
|
mindy555
Senior Member
Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
Post Options
Thanks(0)
Quote Reply
Posted: Aug 17 2011 at 8:44pm |
|
I will soon find out, as I had blood drawn today and sent off for BRCA testing.
FYI- In my case this needed to be done through my oncologist, not GYN. I'll ask about paying to put a rush on the results. I can't get into see my desired surgeon for another 2.5 weeks now anyway and the wait is driving me crazy. I do think I'll qualify for insurance coverage through Assurant Health due to family history. I'm rather upset however that a blanket statement would be made that primary treatment (surgery) in my case a double mast. before adjuvant chemo- and if needed radiation, too often results in a poor prognosis. Where did that stat come from? There's a big difference between a clinical staging and pathological staging. A big difference. As a result some patients are under-treated or are put through treatment that isn't necessary. Right now our chemo options are limited to variations of two chemo treatments as I understand it. After 2 oncologist consults, I'm convinced this simply isn't so. We must hold on to hope. My doctors tell me quite differently. I'll let you know the results of my BRCA. Edited by mindy555 - Aug 17 2011 at 9:04pm |
|
|
|
Topic Options|
Post Reply
|
Page 123 5> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |