Very Important News re: TNBC/BRCA testing
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Topic: Very Important News re: TNBC/BRCA testing
Posted By: SagePatientAdvocates
Subject: Very Important News re: TNBC/BRCA testing
Date Posted: May 13 2011 at 1:19pm
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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/professionals/physician_gls/pdf/genetics_screening.pdf - 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 - 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.
------------- 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 |
Replies:
Posted By: Martha
Date Posted: May 13 2011 at 2:35pm
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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. |
Posted By: Charlene
Date Posted: May 13 2011 at 2:36pm
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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 |
Posted By: KatieMarie
Date Posted: May 13 2011 at 2:47pm
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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 |
Posted By: 123Donna
Date Posted: May 13 2011 at 3:13pm
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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 |
Posted By: SagePatientAdvocates
Date Posted: May 13 2011 at 3:46pm
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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 ------------- 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 |
Posted By: SagePatientAdvocates
Date Posted: May 13 2011 at 11:53pm
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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: http://www.myriadpro.com/Medi-Cal - 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 |
Posted By: jw
Date Posted: May 14 2011 at 12:34am
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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) |
Posted By: SagePatientAdvocates
Date Posted: May 14 2011 at 2:19am
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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 |
Posted By: Cinderwee
Date Posted: May 15 2011 at 1:40am
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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 |
Posted By: jw
Date Posted: Jun 23 2011 at 10:10am
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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 : ) ------------- 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; |
Posted By: denise07
Date Posted: Jun 23 2011 at 11:18am
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Thank you Steve, if you don't mind me asking what is the BART test? ------------- DX Idc 10/07,st2,gr3,2/6 lymphnodes |
Posted By: SagePatientAdvocates
Date Posted: Jun 23 2011 at 11:18am
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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 |
Posted By: SagePatientAdvocates
Date Posted: Jun 23 2011 at 11:24am
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Hi Denise, here’s a link that should be helpful...I shall write more on this later..sorry I have to run out. http://https://www.myriadpro.com/BRAC_BART - http://https://www.myriadpro.com/BRAC_BART 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 |
Posted By: DianeEE
Date Posted: Jun 23 2011 at 4:06pm
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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
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Posted By: Imasurvivor
Date Posted: Jun 28 2011 at 11:40pm
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This has been very interesting reading. I am anxiously awaiting my results.
Michelle |
Posted By: Horse Lover
Date Posted: Jun 29 2011 at 12:39am
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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 |
Posted By: SagePatientAdvocates
Date Posted: Jun 29 2011 at 1:25am
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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 tel:800-469-7423 - 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 |
Posted By: SagePatientAdvocates
Date Posted: Aug 01 2011 at 10:53am
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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 |
Posted By: mindy555
Date Posted: Aug 17 2011 at 8:44pm
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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. |
Posted By: 123Donna
Date Posted: Aug 17 2011 at 9:16pm
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Mindy, Just my opinion, but most Stage 1 and some Stage 2 are treated with surgery first, then adjuvant chemo. It's larger tumors or nodal involvement that are usually treated with neoadjuvant chemo, then surgery. Did someone tell you that surgery first will lead to poor prognosis? I think you'll find many long term survivors that had surgery first. The one benefit of having chemo first would be to see if it worked on a particular tumor by shrinking it. If it doesn't work, then you could try another chemo regime. The downside is you waste time and possibly allow the tumor to grow before trying a different chemo. So I think there is no right or wrong answer but a decision you have to make with your surgeon. For me, I couldn't get the tumor gone quick enough. I think if I could have had the surgery on the same day as the biopsy, I would have done it. Steve, A friend of mine had the BRCA test. She was negative but Myriad asked her if she wanted the additional BART testing. Her surgeon told her the BART test was directed towards hispanics and african americans. Is that true? 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 |
Posted By: Charlene
Date Posted: Aug 18 2011 at 8:09am
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I have a question. If a patient has neoadjuvant chemo and does not have pCr, they go ahead and do the surgery next, right? Then, they try a different chemo after surgery. They don't try two different chemo regimens before surgery, do they? This is just something I have been wondering about.
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 |
Posted By: 123Donna
Date Posted: Aug 18 2011 at 8:16am
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Charlene, Good question and I'd like to know the answer too. My thought is it probably depends on tumor size and staging. If a woman has a larger tumor, say 4 cm. and does neoadjuvant chemo but finds it's not working and now it's grown to 5 cm. Do they go ahead with the surgery or try a different chemo to see if it will shrink or get pCR? 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 |
Posted By: mindy555
Date Posted: Aug 18 2011 at 4:17pm
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Donna, yes that's what I was told on this forum. Thank you for your thoughtful response. It corresponds directly with what I was told by 2 oncologist's consultations. You really have relieved my mind tremendously. I kept hearing it was a mistake to have surgery first. My tumor is under 2cm and my clinical report shows no lymph node involvement. The oncologist I favor says the only way to get a true pathological report to be treated properly is through surgery. In my case I feel a double mastectomy w/reconstruction is the only way to go. Thanks again Donna (((Big Hugs))) You've always been so helpful. Now, if I didn't have to wait so long for this surgery. --Mindy |
Posted By: mindy555
Date Posted: Aug 18 2011 at 4:26pm
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ps- Yes, Donna. I can see the clear advantages of seeing if the chemo is working.. and, you're right about weighing those options. I'm like you... I would've had this tumor out the same day I was diagnosed vs. knowing it could be growing right now and playing the waiting game for surgery. It's making me very nervous. Thanks again Donna. -- Mindy |
Posted By: SagePatientAdvocates
Date Posted: Aug 18 2011 at 5:20pm
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Dear Charlene and all, I asked your question to a Breast Medical Oncologist I respect. hope this helps, Steve Here is the response- you don’t know that the patient didn’t have pathologic CR until you’ve gone to surgery. If full standard regimen is given pre-op and there is residual but resectable disease, the standard is to proceed to surgery. There are trials for postneoadj chemo in setting of residual disease, but it is by no means standard. ------------- 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 |
Posted By: Charlene
Date Posted: Aug 18 2011 at 7:22pm
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Thank you, Steve! I did not realize that the doctor did not know about pCR until surgery.
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 |
Posted By: CathyF
Date Posted: Aug 18 2011 at 8:13pm
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Steve. I was 59 when I was diagnosed & asked about BRCA testing & was advised that due to age & lack of family history, I wasn't eligble for the testing. Additionally, I was cautioned about future insurability if the results came back positive. I am now a year out from diagnosis & 60 years old. Just wondering what your thoughts are. ------------- dx: 8/10 Age:59 Stg:2A 2.1cm Grd:III 2-nodes,IDC, Lumpectomy:8/10 Mammosite Radiation: 8/10 Chemo: AC(4) x T(4)- 9/10-1/11 |
Posted By: SagePatientAdvocates
Date Posted: Aug 19 2011 at 4:54am
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Dear Cathy, Under the new NCCN guidelines it is suggested that all women < 60 years old who have been diagnosed with TNBC should be tested for the BRCA mutation. This is a big change from previous guidelines and should enable you to get tested...It is important that you do so.. I don’t know where you live in Texas but if you are in/near Houston MD Anderson Cancer Center has an excellent high-risk clinic where you can get tested...There are many other faciilities throughout the state where you can get tested. In my view, it is important that you test..If positive it may affect future treatment plans, if G-d forbid, it’s necessary and also it is important information for your family to have. A recent study showed that 20% of women with TNBC tested BRCA+, even absent a family history. The only way to find out is to test and as in my case, sometimes the BRCA mutation is hidden on the father’s side. I do not have cancer but I passed the BRCA mutation on to my daughter who was diagnosed with TNBC when she was 36. If you test positive for the BRCA mutation it should not affect(except if you work for a small company)your health insurance due to the passage of the GINA law. Life insurance companies can deny you coverage if you are BRCA+ but in my opinion your cancer diagnosis has made you uninsurable whether or not you are BRCA+. good luck to you... 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 |
Posted By: mindy555
Date Posted: Aug 19 2011 at 6:39pm
| Wow Steve, something else to worry about. I'm self insured since I have my own one woman company. Can I be denied now? |
Posted By: mindy555
Date Posted: Aug 19 2011 at 6:43pm
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Actually I have what's called an HSA - Health Savings Account. It's a high deductible per calendar year plan through Assurant Health. As of January 1st there's no limit on what they pay at 100%. But can they deny me coverage? BTW, my BRCA test is underway. I should hear something in a few weeks. |
Posted By: 123Donna
Date Posted: Aug 19 2011 at 7:05pm
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Mindy, I don't believe they can cancel your existing policy. However, it may be difficult to obtain a different policy or change companies. As long as you pay your premiums, your existing policies will remain in effect. Trying to get life insurance would be difficult or impossible with a preexisting condition like cancer. Hugs, 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 |
Posted By: SagePatientAdvocates
Date Posted: Aug 19 2011 at 7:10pm
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Dear Mindy, don’t know if it’s too late but you can also test anonymously through www.dnadirect.com From the GINA law (this is from 2008..don’t know if it has changed) http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf - http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf see p.3 • GINA’s employment provisions generally do not apply to employers with fewer than 15 employees. • For health coverage provided by a health insurer to individuals, GINA does not prohibit the health insurer from determining eligibility or premium rates for an individual based on the manifestation of a disease or disorder in that individual. For employment-based coverage provided by group health plans, GINA permits the overall premium rate for an employer to be increased because of the manifestation of a disease or disorder of an individual enrolled in the plan, but the manifested disease or disorder of one individual cannot be used as genetic information about other group members to further increase the premium. • GINA does not prohibit health insurers or health plan administrators from obtaining and using genetic test results in making health insurance payment determinations. ............ the other thing you can do is call a wonderful non-profit in CA called Cancer Legal Resource Center...they will keep everything confidential...you can tell Anya Prince that an old man with a grey beard named Steve suggested you call. Her phone is 213-736-1331..she is their Genetics discrimination expert and should be able to answer your questions in total confidence.. http://www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm - http://www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm She is very smart and very nice. 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 |
Posted By: mindy555
Date Posted: Aug 20 2011 at 12:35am
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Unfortunately it's already been sent off by my oncologists office.. I imagine it's too late to do this without the insurance company's involvement. If I lose my insurance I'm up a creek. Sorry Steve.. that was for you. Thanks for the links and info. I'll see what I can do. Very frustrating as I feel this tumor growing and now I'm worried about my insurance. I can't even think straight right now. |
Posted By: mindy555
Date Posted: Aug 20 2011 at 1:31am
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Hi Steve- In reading through the link you posted there WAS a statement which maybe applicable to my situation. There's also a good chance I'm reading it the way I want to interpret. It states: The effective date of the insurance provisions is not the same in all cases because for group health plans, Title I will take effect at the start of the “plan year” beginning one year after GINA’s enactment. Because some health plans do not designate their “plan years” to correspond to a calendar year, there will be variation among plans as to when Title I takes effect for the plans. However, for individual health insurers, GINA will take effect May 22, 2009. Of course I expect my existing insurance premium for the high deductible HSA to skyrocket. That's not the problem. I don't want them to find a loop-hole to leave me without insurance by canceling me. I thought it was illegal to do so. Since I'm my own employer, there's no problem in privacy rights in the workplace. I will indeed call Ms. Prince, your resource in CA and see if she can help with my questions. You've supplied an abundant source of very helpful information. What would this forum do without you? Can't thank you enough. With warm thoughts of you and your daughters --Mindy |
Posted By: SagePatientAdvocates
Date Posted: Aug 20 2011 at 8:02am
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Dear Mindy, hopefully you will test BRCA negative.. thanks for the kind words, 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 |
Posted By: mindy555
Date Posted: Aug 22 2011 at 10:31pm
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Myriad Labs called today with the bad news. There's a rider on my insurance policy.. according to my insurance company, which excludes genetic testing. I told them to proceed with the test and I'd come up with the money. With a daughter and three darling granddaughters I can't afford NOT to. You can't put a price on this.. peace of mind and knowing if your family needs genetic counseling. Thanks for all your help Steve. Loving thoughts to ALL -- Mindy |
Posted By: mainsailset
Date Posted: Aug 22 2011 at 11:17pm
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Mindy, for a long long time I've had fantasies of winning the lottery and then setting up a scholarship fund for members whose insurance won't cover the testing because you're right, it shouldn't have a price on it.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: SagePatientAdvocates
Date Posted: Aug 23 2011 at 6:00am
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Dear Mindy, Please see if these folks, The Lynne Cohen Foundation, can help you regarding cost of the test...not sure if they can but worth a phone call.. http://lynnecohenfoundation.org/ - http://lynnecohenfoundation.org/ Wonderful organization, based in California and they also have a relationship with MD Anderson Cancer Center in Houston. 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 |
Posted By: mindy555
Date Posted: Aug 23 2011 at 7:02pm
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Thanks Steve! Will do. My very best to all. Love, Mindy |
Posted By: mindy555
Date Posted: Aug 23 2011 at 8:22pm
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BTW, Insurance companies don't have any bias towards patients having BRCA testing. This is according to the lady I talked with at Myriad Lab. I'm not sure I buy that being a skeptic when it comes to medical insurance. Thanks to GINA laws the patient is protected in many ways- both with insurance companies and employer. I'm self-employed and my cancer prevents me from ever qualifying for new insurance anyway- so that wasn't my concern. I wanted to be assured they couldn't cancel my current policy. So yes, you were right about that Donna. I know I sound ultra paranoid. I don't know what I'd do without insurance even though I pay the first $5000 every calendar year. Ouch. ------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: SagePatientAdvocates
Date Posted: Aug 23 2011 at 9:33pm
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Dear Donna, sorry didn’t see your question from the other day.. It is my understanding that the BART test is not geared primarily to African Americans/Hispanics... hope you are feeling well, 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 |
Posted By: 123Donna
Date Posted: Aug 23 2011 at 9:42pm
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Steve, Thanks. I found the Myriad press release about BART. It's a shame it's not included as one BRCA test, but another way for them to make more money. http://investor.myriad.com/releasedetail.cfm?ReleaseID=325803 - http://investor.myriad.com/releasedetail.cfm?ReleaseID=325803 New BART™ Technology Detects Rare DNA Rearrangements in BRCA1 and BRCA2 GenesSalt Lake City, August 1, 2006—Myriad Genetics, Inc. (Nasdaq: http://www.myriad.com/mygn - MYGN ) ( http://www.myriad.com/ - www.myriad.com ) announced today the introduction of the BRACAnalysis® Rearrangement Test, a new molecular diagnostic test in the BRACAnalysis family of products. The added test detects rare, large rearrangements of the DNA in the BRCA1 and BRCA2 genes and will be performed for women with exceptionally high risk who have tested negative for sequence mutations and the common large rearrangements already included in Myriad's test. BRACAnalysis, Myriad's test for hereditary breast and ovarian cancer incorporates the most thorough full-sequence analysis for gene mutation detection ever employed on a broad commercial scale. More recently, Myriad and others have discovered and published information on an additional type of mutation, known as a large rearrangement, that has not been detectable by commercial DNA sequencing technologies, but only by laborious, manual research-based methods. Such rearrangements are responsible for a small percentage of changes in the two breast cancer genes. In 2002, Myriad added a panel of five common rearrangements to its BRACAnalysis test, accounting for nearly half of the total occurrence of large rearrangements in the two genes. Because large rearrangements are quite rare, a woman meeting the commonly employed selection criteria for BRACAnalysis has less than one half of one percent (0.5%) risk of carrying one of the large rearrangement mutations. Now, with its new BART technology for large rearrangement detection, Myriad offers an automated, robust test designed to detect all large rearrangement mutations in the BRCA1 and BRCA2 genes, even if they have not been seen previously. As of August 1, 2006, Myriad will conduct the BRACAnalysis Rearrangement Test on patient samples where the individual's personal and family history is indicative of an exceptionally high level of risk, but the sample tests negative for BRACAnalysis. The Rearrangement test will be performed, when indicated, at no additional charge, and is also available for order independently for a fee of $650. ------------- 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 |
Posted By: 123Donna
Date Posted: Oct 05 2011 at 7:59am
Posted By: mainsailset
Date Posted: Oct 05 2011 at 11:12am
|
Sorry, but I can't help but remember Dick Cheney's 2% rule, that if there were even a 2% chance a nation would strike the US, that the administration would use a pre-emptive strike rule.
Yet, when it comes to BRACA testing on women, a pre-emptive strike that would end up nationwide bearing the cost of less than than ummmm, one warhead? is something that draws a ho hum?
Piorities on women's health should be something we hold as a badge of honor, not a wait and see perspective. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: mindy555
Date Posted: Jan 05 2012 at 11:27pm
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I know this is an older post-- but mainy... you nailed it. Our priorities are so screwed up.
------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: Nadine22
Date Posted: Feb 17 2012 at 10:45pm
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I am new to the site. I just posted my information in the Welcome section this week. I was given this link by another member (which I appreciate very much). My mom was just diagnosed last week with TNBC. She is Stage 1 and lymph node negative. Based on what I was reading, I assumed that she would automatically be tested for BRCA when we go to our first appointment with the oncologist next week. Now I see that it is recommended for women under 60 - Mom is 63. What is the reason for the age cutoff? Is it still a good idea to have this done even if insurance won't cover? Thank you so much for any help!! |
Posted By: mindy555
Date Posted: Feb 18 2012 at 2:30am
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Nadine.. The testing isn't automatic and the oncologist isn't always the one to recommend testing-- even though I believe they should with all TN patients. Usually a certified genetics counselor will though. I asked for my own testing and the blood was drawn by my local oncologist's office where they sent it off to Myriad. I think the NCCN guidelines are fairly recent. I had the testing done right after diagnoses. I was (and still am) 56 at the time. (so, I know the guideline is fairly recent as I tested before they were published) My insurance denied coverage per a representative at Myriad. I plan to go back to my insurance company with the newer guidelines- which I know I should have done by now. At the time I simply couldn't afford NOT to test, for the sake of my daughter and three granddaughters. As you can see in my sig, I tested positive. Naturally I then had my daughter and maternal aunt test. In my case my mother had early onset breast cancer. No other history. My aunt tested negative. AMEN! Sadly, my daughter tested positive, too. I can't stress enough; Many BRCA positives have NO family history like I did. Myriad will work with you. For instance... they'll let you pay it out interest-free for 2 years. This is what I finally vied to do, hoping insurance will pick it up when I present my case. They give a 10% discount if you pay in full. While your Mom is outside the NCCN age guideline window, I hope she'll request the BRCA test. It's so very important, as you know or you wouldn't be questioning. Are you certain her insurance won't cover testing? Until you ask for sure, perhaps they WILL! This is Steve's bailiwick- I believe he knows an advocate who might be able to help your case if insurance denies coverage. Could be wrong, but it seems to me he posted a name of someone to call. It's really late (early) here- though I'll look in the morning for that post and write again when I find it. Wishing you and your Mom the very best! Hugs, Mindy ------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: SagePatientAdvocates
Date Posted: Feb 18 2012 at 7:13am
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Dear Nadine, Welcome to our TNBC Foundation family and sorry you have need to be here on behalf of your mom. If you can swing it financially I would suggest mom get tested. The complete panel (including BART) is about $4000- Hopefully, she will test negative. If not, her treatment plan may change and you would have a 50% chance to inherit the mutation yourself. If she is BRCA+ the allele will be none and then the testing for you would be about $400. As Mindy wrote we are finding a lot of women with the BRCA mutation who do not have an obvious family history of breast/ovarian cancer. I believe that is the case because, fairly often, the mutation is carried on the male side of the family. If a BRCA1+ woman has breast cancer it is overwhelmingly TNBC. The converse is not true. Most people with TNBC are not BRCA+ but it is best to test, I believe. The best person to talk to about all of this is a Certified Genetic Counselor (CGC) but please make sure the CGC is BRCA savvy. I am sending you my contact info in case you would like to talk. again, welcome, 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 |
Posted By: Nadine22
Date Posted: Feb 18 2012 at 10:47pm
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Mindy and Steve, Thank you so much for your responses and information!!! I wanted to make sure there wasn't a significance for the 60 cutoff other than insurance coverage. I thought maybe - for whatever reason - the test wasn't as accurate for older women so it wasn't recommended. If she can be tested accurately, I know she will have it done. If she is positive, I will do the same. If she is positive, does this impact her treatment options in any way? I apologize if this has already been answered. I have been online all day reading everything I can find so I have a lot of information floating in my head right now. I am trying to find some general consensus regarding treatment for TNBC. It seems there isn't a "tried and true" for it. I am not willing to just accept the first treatment opinion we get without doing my homework first and seeking at least a second opinion. I don't mean to sound sassy (for lack of a better word), but I will do everything I can to help Mom. Thank you again for your help and support. It means so much. Nadine |
Posted By: SagePatientAdvocates
Date Posted: Feb 19 2012 at 9:45am
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Dear Nadine, the test is accurate for women at any age. yes, if she is positive they may recommend different treatment options. That should be explained to you by a Certified Genetic Counselor and a Breast Medical Oncologist and perhaps a Breast Surgical Oncologist. If, G-d forbid, your mom was to test positive it is important that she go to professionals who understand BRCA and TNBC. good luck... 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 |
Posted By: Nadine22
Date Posted: Feb 19 2012 at 2:07pm
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Steve, Thank you so much for the information and the quick response!! If the cutoff at 60 is only relevant for insurance coverage, then Mom will definitely have the test. Steve, those of you that have been down the roads we are beginning are invaluable, and I thank you! There seems to be many variables that can point a person in different directions when it comes to treating TNBC - now including BRCA results. Am I over-thinking this? Is there a current standard for treatment for TNBC that I am not aware of or are treatment (chemo) options based on individual circumstances? You mention a Certified Genetic Counselor, a Breast Medical Oncologist, and a Breast Surgical Oncologist to start with until we find out the BRCA test results. The doctors we are meeting with Tuesday are a oncologist and radiology oncologist. I am beginning to wonder if we need to go outside of our city and see doctors that specialize in TNBC - or at least breast cancer. We are only three hours from Indianapolis so I am wondering if we need to start trying to get in to see Dr. Sledge at IU. We are also only two hours away from Nashville, and I am reading about TNBC specialists at Vanderbilt too. I don't mean to sound negative about the doctors in my city, but if Mom's type of cancer is best treated by a specialist, I want to do everything I can to find one. I am so thankful for everyone here that has "talked" to me the past few days and helped me learn more about what to do and expect. Knowing I have people to turn to has made a difference in how I am coping with all of this. I also pass along information to Mom who is as reassured that we have others "with" us along the way. Nadine |
Posted By: SagePatientAdvocates
Date Posted: Feb 19 2012 at 2:20pm
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Dear Nadine, If you can get an appointment with Dr. Sledge I would encourage you to do that even though he is an extra hour away. If you need help getting the appointment I can try to help. It should take about a week to get the BRCA results and if mom is negative she can enter a free research study- http://forum.tnbcfoundation.org/topic9633_post98112.html#98112 - http://forum.tnbcfoundation.org/topic9633_post98112.html#98112 Individual circumstances are important regarding treatment, in my opinion. good luck, 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 |
Posted By: mindy555
Date Posted: Feb 19 2012 at 4:31pm
|
Dear Nadine, For what it's worth I totally agree with everything Steve has already stated. I believe it's of utmost importance to consult a specialist in TN. Dr. Sledge has an outstanding reputation, devoting a true passion to TNBC from everything I've heard from his patients. Steve is a blessing to this forum. All of the advocacy work he does to help women out of the goodness of heart and genuine caring is invaluable. I too wish you a ton of luck. I'll be thinking of you and your Mom. Mindy ------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: Nadine22
Date Posted: Feb 19 2012 at 11:42pm
|
Steve and Mindy, I do think I will try to get an appointment with Dr. Sledge. Another forum member said it took around two months to get in to see him which doesn't surprise me. I feel like I need to start that process as soon as possible. I looked up the IU Simon Cancer Center, and there is a number to call for appointments on the Contact Us page. It seems to me that there would be more to it than this though. I would think Mom's oncologist here in Evansville would have to refer her. I will talk to the oncologist about the referral/second opinion on Tuesday when we meet with her. I will have to think of a way to approach this without offending her though. I don't want her to think that I don't believe she knows what she is doing. Guess I will have to step outside of my skin and be more aggressive and pushy than I am normally. Thank you both again. Mindy, from a different post, it sounds like you may not have had the best of days today - I hope you rest well and have a better tomorrow. Nadine ------------- Mother (age 63) diagnosed 1/25/12, lumpectomy 2/10, 1.6 cm, sent. biop. 3 nodes clear, TNBC, BRCA (not known yet), Stage 1, Grade 3, started T/C 3/16/12, 4 rounds/3 weeks apart followed by 33 rad. |
Posted By: Juliedor
Date Posted: Feb 20 2012 at 12:30am
|
Hi All,
This is the first time I have contributed to this site.I was diagnosed with TNBC in 2009 age 50.
I have had a mastectomy,15 chemo sessions and a course of radiation,since diagnosis. I have had two recurrences since but I am doing really well now.
I am not sure if there are other Australians on this site but for the record because of the triple negative status of my cancer I qualified for free genetic testing for BRACA 1&2.(I was negative)
Julie D
|
Posted By: Grateful for today
Date Posted: Feb 20 2012 at 12:50am
|
Hi Juliedor,
Welcome to the site. Glad you found it. Wonderful to hear you are doing well now. Yes, there are other Australians on the site. Maybe post on link: http://forum.tnbcfoundation.org/any-other-aussies_topic9328_post93631.html?KW=Australia#93631 - http://forum.tnbcfoundation.org/any-other-aussies_topic9328_post93631.html?KW=Australia#93631 and others from Australia will see and post on that site. With caring and positive thoughts, Grateful for today............Judy |
Posted By: Juliedor
Date Posted: Feb 20 2012 at 1:14am
| Thanks so much Judy. |
Posted By: SagePatientAdvocates
Date Posted: Feb 20 2012 at 5:37am
|
Dear Nadine, you do not need your local oncologist to refer your mom. You can self-refer her to Dr. Sledge. I can try to help you get an appointment earlier, if you wish. Or you can just try to see what you can get, on your own. I have no idea what his availability is or travel schedule. The mark of a truly great oncologist is someone who welcomes a second opinion and doesn’t make the patient feel bad about getting one. There is one agenda here, your mother’s treatment plan. This is her life and she owes herself a second or third opinion if she would like. This utube video is by a great cardio-physician at the Cleveland Clinic but the principle is the same- http://www.youtube.com/watch?v=Sd48rSvBGrk - http://www.youtube.com/watch?v=Sd48rSvBGrk When I spoke to a wonderful oncologist, recently, about a patient getting a second opinion the response was..”by all means...this is a difficult case...and maybe I will learn something...the goal is to help the patient.” Cancer is a very humbling disease and TNBC can be particularly challenging. Any oncologist who has the arrogance to tell a patient, in essence, “I have all the expertise you need, don’t see anyone else” is potentially doing the patient a disservice, in my unprofessional view. Having said that I don’t think Dr. Sledge has a magic wand and he would be the first to tell you that but he is very experienced with TNBC has an extensive research/clinical background and just finished a term as President of the American Society of Clinical Oncologists, an important honor. He also sits on the TNBC Foundation Medical Advisory Board and everyone I have sent to him has loved him. He has maintained a lovely, gentle way about him...not full of himself. And again, I am not saying he will have the answer but at least your mom will have a different perspective and that is worthwhile even if he totally reconfirms everything that the local oncologist is recommending. If that happens you have some peace of mind and if not your mom may have some tough decisions to make. I believe if Dr. Sledge and the local oncologist can get on the same page mom should be able to continue her treatment locally. 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 |
Posted By: ds21
Date Posted: Feb 20 2012 at 9:23am
|
Second Steve's comment on second opinions. When a patient seeks a second opinion, it is a chance for the physician to learn how someone, often a recognized expert at another center, would handle the patient that they are seeing. Really an invaluable part of continuing medical education. David ------------- Co-survivor |
Posted By: Nadine22
Date Posted: Feb 20 2012 at 9:48am
|
Steve and David, Thank you both for your feedback. You are right - if a physician doesn't welcome a second opinion, then that is the first sign you are with the wrong one! Steve, I hate to ask for your help again - I have been on the forum less than a week and have already asked you for help more than once. If there is anything you can do or direction you can provide to help us get an appointment with Dr. Sledge, mom and I would be grateful! I have been passing your information on to her. She definitely wants to see a TNBC specialist. I don't want to put extra work on you so if there is direction you can give me, I will do the legwork. I don't want to take up your time. I am at work today so I am limited to time to check in - it may be this evening before I can get back on the forum. If it is best to email you directly, just let me know. If others can learn from the steps I take, I certainly don't mind keeping our conversations open to others here on the forum. Thank you both again for your input and help!!!! Nadine ------------- Mother (age 63) diagnosed 1/25/12, lumpectomy 2/10, 1.6 cm, sent. biop. 3 nodes clear, TNBC, BRCA (not known yet), Stage 1, Grade 3, started T/C 3/16/12, 4 rounds/3 weeks apart followed by 33 rad. |
Posted By: frostygirl
Date Posted: Mar 03 2012 at 2:29pm
| I am 74. Should I get the TNBC/BRCA testing? (Diagnosed 1/2011) I have a daughter and a granddaughter I'm concerned about. |
Posted By: ds21
Date Posted: Mar 03 2012 at 3:31pm
|
Frosty, This is a question to discuss with your physician. While triple negative is a greater fraction of breast cancer in young women, the absolute incidence of all breast cancers including triple negative increases with age. The NCCN Guidelines recommend BRCA testing for triple negative patients less than age 60 or for patients with a family history of breast/ovarian cancer in close relatives. There are quite a few other familial cancer syndromes, in addition to BRCA 1 and 2, so again, if "cancer runs in the family" you need to review this in detail with your physicians. David ------------- Co-survivor |
Posted By: frostygirl
Date Posted: Mar 03 2012 at 6:11pm
| I will and thanks for the info. |
Posted By: Nadine22
Date Posted: Mar 03 2012 at 7:15pm
|
We just met with my Mom's oncologist for the first time last week, and I asked the same question about having the BRCA test because she is 63. We have no history of breast cancer in our family. Mom is the first. Since Mom is triple negative though, we thought it was best to have the test just in case she would happen to be positive. This is what we were told during her appointment: >> if you are over 60, insurance may or may not pay for it, and the cost can be around $3500 for the test. >> if you have your blood drawn and sent in for the test, the company doing the testing (I forget the name right now) will contact you if the cost is going to be over $300 for you before proceeding. >> BRCA status may not effect chemo or radiation treatment options, but it could effect surgery decisions (mastectomy and/or removal of ovaries) >> of course, if you test positive, your children - sons and/or daughters - should be tested too. From what I have been told and read, men can pass this gene on to their daughters. (If you haven't, you should read Steve's posts here on the forum. His information is very helpful.) The test results take around 10 days so we won't know anything until the end of the week. If you have any questions about my information here, just let me know. I am new to the forum and just want to try to help others because so many here have helped me. Healthy Wishes, Nadine ------------- Mother (age 63) diagnosed 1/25/12, lumpectomy 2/10, 1.6 cm, sent. biop. 3 nodes clear, TNBC, BRCA (not known yet), Stage 1, Grade 3, started T/C 3/16/12, 4 rounds/3 weeks apart followed by 33 rad. |
Posted By: frostygirl
Date Posted: Mar 03 2012 at 10:37pm
| Just a quick reply for your mom. My tumor last year was 1.5 cm. Lumpectomy 3/7/11. All nodes clear. Stage 1, Grade 3. I was treated in Denver with ACT (16 treatments + Neulasta shots) followed by 30 RT. I had no issues. Both chemo and radiation went well. I am enjoying the Winter in AZ. I'm 10+ years older than your Mom and am glad I trusted in my Dr and my faith, refusing to listen to anything or anyone that would bring me down. Best of luck to you and your family. |
Posted By: SagePatientAdvocates
Date Posted: Mar 04 2012 at 1:29am
|
Dear Frosty, I don’t know your financial circumstances and don’t want to know... Here is what I would do. If you can afford it I would suggest you get tested. If you test negative, which hopefully you will, you will then be eligible for Dr. Mary-Claire King’s study which will re-test you for the BRCA mutation plus 20 other genes. In order for you to qualify for Dr. King’s study, which is a free study, you have to have had TNBC and have tested BRCA+ or BRCA-. So your daughter and granddaughter would not be eligible for the test. If you are BRCA negative via Myriad and then the King study finds another gene that causes breast cancer I believe they would then test your daughter for the new gene, again for free. If G-d forbid she carries it they would test your granddaughter, again without charge. Here are the details on the study- http://forum.tnbcfoundation.org/important-tnbc-studyking-lab_topic9642.html - http://forum.tnbcfoundation.org/important-tnbc-studyking-lab_topic9642.html 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 |
Posted By: Grateful for today
Date Posted: Apr 02 2012 at 9:22pm
----------------------------------- Hi, Skclayton posted the above on another thread. (Above is my response on the other thread) Does anyone have information about the new BRCA testing info Skclayton referred to? Thanks. Grateful for today..............Judy |
Grateful for today wrote:Posted By: Skclayton
Date Posted: Apr 03 2012 at 12:07am
| Since I was diagnosed at 60 years and 5 months, I was rejected by both my insurances. I guess they are saying " 60 and over" don't matter......... |
Posted By: SagePatientAdvocates
Date Posted: Apr 03 2012 at 2:29am
|
Dear Skclayton, Please call Myriad and ask for their insurance dept. It is in their economic interest to try and help you get tested so I believe they will try to help you. It may fail, but it is worth a try, in my opinion. Tel: (801) 584-3600 good luck!!! 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 |
Posted By: Skclayton
Date Posted: Apr 03 2012 at 8:59am
| I already had talked to them directly. They and the cu genetic staff appealed since I met all other medical criteria. The finalfi al results was to pay the $3700 test fee out of pocket. |
Posted By: Grateful for today
Date Posted: Apr 04 2012 at 8:26pm
|
Hi Skclayton,
Sounds like you have already researched and tried multiple ways to have the BRCA test via insurance. As you said, as of January 1, 2012, BRCA testing is no longer a benefit with Tricare. For those with other government funded policies: The following seems to be the current situation in general: (always re-check for one's own case) Medicare: BRCA testing is covered when certain criteria are met. (Myriad will go over the Medicare criteria for BRCA testing when one calls Myriad) Medicaid: Each state has it's own policy about BRCA testing. Some states cover BRCA testing and others do not. For those states that do have a benefit for BRCA testing, each state sets it's own criteria for when BRCA testing is covered. One last thought. You mentioned that you have already appealed the insurance denial. Believe after an insurance denial for commercial insurance products like BCBS/Aetna/United etc, there is an option for an outside external appeal. This is sometimes coordinated by the insurance's member services dept or the consumer affairs dept or the grievance dept. If you have not had an external outside appeal, you may want to consider if this is an option and how to proceed with your insurance company. With caring thoughts to you, Grateful for today...............Judy Just a FYI for all. From Myriad website: Myriad Financial Assistance Program Myriad is able to offer testing at no charge to uninsured patients that meet specific financial and medical criteria. Due to regulatory limitations, patients who are recipients of governmentfunded programs (ie, Medicaid, Medicare) or those that have any third-party insurance are not eligible to apply. |
Posted By: Skclayton
Date Posted: Apr 08 2012 at 5:52pm
| This is great news for those under 60. But for those of us over 60---not so much. Last week, spent 2 hours on phone with NIH and Tricare. No one could explain to me why the must be under "<60" criteria. |
Posted By: Skclayton
Date Posted: Apr 08 2012 at 5:55pm
| Both of my insurances turned me down because I was over 60 at the time of diagnosis. Doubtful you can get an insurance---especially medicare---to pay for the very expensive test. You will be told the same as me---"too old". |
Posted By: debby
Date Posted: Apr 09 2012 at 5:43pm
|
hi there again from EnglandWhen i was diagonised two years ago my tumor size was 3cm, no history of anyone in my family having BC, i had adjacent chemotherapy which was 3 fec and then 3 taxatere, when i had a mammogram there was no change so i had a mascetomy. I waited 4 weeks from having my last chemo to having the mas, when i got my results two weeks later, my tumor size was 7cm and i had all of my lymphs taken out and none were positive. |
Posted By: Grateful for today
Date Posted: Dec 22 2012 at 11:51am
|
debby,
Noticed there were no responses to your April post. Sometimes that does happen........members intend to go back and post a response.......or one posts on a day where there are a lot of new posts ..........and sometimes there are no definitive answers to questions asked.....or no one reading the forum had a similar experience (believe others might have had the experience it's just they are not on the forum) PLEASE if you or anyone post and do not get a response........post again asking for responses. Was glad to see you posted after April on other threads and did get responses. Sending you lots of caring and good thoughts, Grateful for today..............Judy ======================================================== FYI. Re; Myriad Genetics and the BRCA test pattern. Wondering what the outcome of this will be? SALT LAKE CITY, Nov. 30, 2012 (GLOBE NEWSWIRE) -- Myriad Genetics, Inc. (Nasdaq:MYGN) reported today that the Supreme Court of the United States granted certiorari(*) agreeing to hear the case of The Association for Molecular Pathology, et al., v. Myriad Genetics, Inc., et al (Docket No. 12-398). The Supreme Court will review the earlier decision by the U.S. Court of Appeals for the Federal Circuit, which declared that Myriad's composition of matter claims covering isolated DNA of the BRCA 1 and BRCA 2 genes are patent-eligible under Section 101 of the United States Patent Act. Link for full article: http://globenewswire.com/news-release/2012/11/30/508826/10014200/en/Supreme-Court-of-the-United-States-to-Hear-Isolated-DNA-Patent-Case.html - http://globenewswire.com/news-release/2012/11/30/508826/10014200/en/Supreme-Court-of-the-United-States-to-Hear-Isolated-DNA-Patent-Case.html * DEFINITION FROM NOLO’S PLAIN-ENGLISH LAW DICTIONARY of "certiorari" Certiorari: Latin for "to be fully informed." In cases in which there is no appeal as a matter of right, certiorari is a writ (order) by the appeals court to a lower court to send all the documents in a case so that the appeals court can review the decision. Certiorari is most commonly used by the United States Supreme Court, which grants certiorari when at least four Justices believe that the case involves a sufficiently significant federal issue. Definition provided by Nolo’s Plain-English Law Dictionary. Grateful for today...........Judy |
Posted By: sweetpickle
Date Posted: Dec 22 2012 at 2:01pm
|
Great information! I don't know if this will help anyone but I thought I'd share my experience with the BRCA testing in case it could. I was uninsured when diagnosed and the company that did my testing had a program to pay for the test if you qualified based on income. I had to fill out an application and include the first page of my tax return from last year. Based on my income I was able to qualify for their program. I'm very grateful that I did because now I know I carry BRCA1. It may be an option for some folks depending on their situation. The nurse who worked at my Onc. office told me about it. Heather ------------- 11/13/12 DX TNBC, BRCA 1+ Grade 3, 4.3cm tumor, susp. node under arm, 4 A/C biweekly & 4 Taxol biweekly |
Posted By: Skclayton
Date Posted: Dec 22 2012 at 2:32pm
| Debbie in England----please give us an update since April.................. |
Posted By: Skclayton
Date Posted: Dec 22 2012 at 2:34pm
|
Sweetpickle----I was not denied because of income or insurance. I had insurance. I was denied because of age. I was 60 years and 5 months at diagnosis. The cutoff was "before 60" for insurance. The change was due to Obamacare on January 1, 2012. I had friends that were over 60 prior to the medical law change. |
Posted By: Skclayton
Date Posted: Dec 22 2012 at 2:37pm
| I have TRICARE as my secondary (retired military) and since I was 60 years and 4 months at diagnosis, I am not under the 60 years ----as Steve indicates. So Tricare denied me based on no family history and over 60 at diagnosis. |
Posted By: overwhelmed
Date Posted: Dec 22 2012 at 7:37pm
|
I believe the guidelines to test those who are under 60 (?- I am not sure of the age) is new. When I was first diagnosed, testing wasn't considered because there was no history of breast cancer in my immediate family. That changed about a year and a half ago when the NCCN changed their guidelines to recommend testing of those with TNBC under a certain age. I had to point the insurance company to the new guidelines. At first they said no, and then they said yes because of the new guidelines regarding TNBC before a certain age. At any rate, when looking into this a bit further I found that a Myriad Genetics actually owns the patent on the BRAC 1 &2 genes. That's the reason the test is so costly. Who would have thought a company could own the patent on a gene. That just doesn't seem right. http://articles.baltimoresun.com/2012-09-22/health/bs-hs-brca-patents-20120922_1_myriad-genetics-patents-brca - http://articles.baltimoresun.com/2012-09-22/health/bs-hs-brca-patents-20120922_1_myriad-genetics-patents-brca ------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: SagePatientAdvocates
Date Posted: Dec 22 2012 at 8:33pm
|
Dear overwhelmed, In my view it isn't right and if the Supreme Court agrees the cost of testing will drop dramatically. http://www.nytimes.com/2012/12/01/us/supreme-court-takes-up-question-of-patents-in-gene-research.html?_r=0 I believe that each year many women in our community do not get tested for economic reasons and that is very, very unfortunate. There is another component to having the BRCA mutation and that is a separate risk (in addition to the 75-85% lifetime breast cancer risk) 25%-45% risk of ovarian cancer. Unfortunately, there are no accurate diagnostic tests for detecting early ovarian cancer. 80% of ovarian cancer is not found until it is Stage III-IV disease which is just a tragic situation. So many women with the BRCA mutation have risk-reducing gynecologic surgery. If a woman can't afford to find out whether she has the BRCA mutation and does have it she remains at high risk for ovarian cancer and well as not truly understand her increased risks for cancer in her contralateral breast. Myriad does have a program, as sweetpickle wrote (and thank you for mentioning that), for certain women who meet their very stringent requirements for free testing. In my view, more needs to be done for the women in our community..When a woman has the BRCA11+ mutation and has breast cancer 70% of the time it is TNBC but the converse is not true; if you have TNBC that does not mean that 70% of the time you are BRCA+. So you need to test to find out and if your insurance company will not pay for it and you cannot afford the test, you are stuck. I don't use words like tragedy lightly but I feel this is a tragic situation. Not only can't the woman, for economic reasons, get the information that could possibly save her life, her family remains uninformed, perhaps putting many other lives at risk. And please remember, for those of you with the BRCA mutation, you had to get the mutation from either your mother or dad. It is important for them to get tested as well. At times, it is clear, as in my family with at least ten in the family with breast and/or ovarian cancer that it was on my Mother's side. Suggest you get the word out to relatives on the affected side (if you can find out). Also very importantly, if you have children, there is a 50-50% chance that they will inherit the mutation. My eldest daughter has it and my youngest daughter doesn't. And it doesn't skip generations so that my youngest daughter's son, my adored grandson, will not have it because his mom doesn't and his dad's family is basically cancer-free. with my love to all, 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 |
Posted By: overwhelmed
Date Posted: Dec 22 2012 at 8:53pm
|
Steve, I agree. We all need the information. In my case, I wasn't BRAC 1 or 2 positive, but I believe I have a genetic connection that hasn't yet been identified. My paternal gr mother had colon cancer in her 60's. Her daughter, my aunt, died of colon cancer in her 50's. My aunt's daughter had breast cancer i her 40's, and I had breast cancer just shy of my 50th birthday. My brother has pre cancerous lesions in his colon. While I am not Brac 1 or 2 positive, I believe that there is a colon/breast cancer genetic issue on my dad's side of the family. More testing would help define, not only those that are Brac 1 &2, but those who may have another genetic relationship not yet identified. The only way they will find out this information is through testing. Yet, a patent on a genetic mutation means that testing is too expensive for many who may actually carry the gene. I know that I was floored when I found out that testing cost nearly $4000. But, it seems that the cost relates to the patent and not to the actual cost of the testing. I find that really sad and disturbing. It seems that not all are in it to find the cure as quickly as possible. I am not usually a cynic, but sometimes it's difficult not to be. We all need to know if we are BRAC 1 or 2+. We can make decisions based on that knowlege and our children, siblings and parents can make decisions based on that knowledge. We can also begin to identify the other genetic mutations. I am always amazed to find out that finding the best treatment and a cure isn't always the number one priority with these companies. Lori ------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: SagePatientAdvocates
Date Posted: Dec 22 2012 at 9:34pm
|
Dear Lori, If you haven't yet, I would suggest speaking to a Certified Genetic Counselor(CGC) about something called Lynch Syndrome which is characterized by a heavy family involvement with colon cancer. There is also a breast cancer and ovarian cancer component to the disease. Testing can be complicated...The basic one is HNPCC but there are other more specific ones that can be done..believe the test is much less expensive. http://www.ambrygen.com/tests/hnpcc-lynch-syndrome-dna-analysis - http://www.ambrygen.com/tests/hnpcc-lynch-syndrome-dna-analysis Many Lynch Syndrome families have colon cancer at early ages than your family but I think it would make sense to have a CGC look at your complete cancer family tree and see if HNPCC tresting is suggested. 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 |
Posted By: overwhelmed
Date Posted: Dec 22 2012 at 11:28pm
|
Thanks, Steve. I haven't heard about Lynch Syndrome, but have heard that there can be a breast/colon cancer genetics relationship. When I first got cancer I only knew of my aunt dying of colon cancer. It was when I spoke to her daughter that I found out about my grandmother having colon cancer and my cousin having breast cancer. If I look at my dad's side of the family, his mother had colon cancer, one of her two children had colon cancer and two of her six grandchildren had breast cancer and one grandson had precancerous colon polyps. So, half of each generation. It seems to me that there is some gnetic connection, but it could also just be random. I wonder why they didn't test for Lynch Syndrome when they tested me for Brac 1 & 2. I know that it is an expsense, but it seems that if a cure is to happen sooner rather than later, they need to have all of the available information about each one of us. Unfortunately, that isn't the way it is. Lori ------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: SagePatientAdvocates
Date Posted: Dec 23 2012 at 12:50am
|
Dear Lori, With the amount of colon cancer (especially) and breast cancer in your family I would be surprised if your insurance company did not cover the cost of testing. But then again, with the number of insurance company stories I have heard over the last several years from women who had to fight(and many ultimately won the battle) for various things I suppose I should say I am cautiously optimistic that it will get paid. Here is a good review from The Mayo Clinic on Lynch Syndrome. By the way this genetic condition is named after Dr. Henry Lynch. I had the good fortune to meet Dr. Lynch at a genetics conference a few years ago. What a brilliant, lovely man. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1483189/ - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1483189/ By the way, his son Dr. Patrick Lynch specializes in colorectal cancer at MDACC. I met him briefly last year when I had a colonoscopy. We had a very nice short talk and I told him that he reminded me of his dad..as they say sometimes "the apple doesn't fall far from the tree." 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 |
Posted By: cheeks
Date Posted: Jan 14 2013 at 12:01pm
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Bump for new members ------------- Lump found 11/08 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 1/17. New Primary right breast TN, 2/2018. |
Posted By: Grateful for today
Date Posted: Apr 16 2013 at 12:06am
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FYI: 4/15/13 Viewpoints: Editorial Boards Offer Advice To Supreme Court On Gene Patents http://www.kaiserhealthnews.org/Daily-Reports/2013/April/15/mon-opeds.aspx" rel="nofollow - http://www.kaiserhealthnews.org/Daily-Reports/2013/April/15/mon-opeds.aspx 4/16/13 High Court Skeptical That Biotech Firm Can Patent Human Genes http://www.kaiserhealthnews.org/Daily-Reports/2013/April/16/supreme-court-gene-patents.aspx?utm_source=khn&utm_medium=internal&utm_campaign=widget" rel="nofollow - http://www.kaiserhealthnews.org/Daily-Reports/2013/April/16/supreme-court-gene-patents.aspx?utm_source=khn&utm_medium=internal&utm_campaign=widget Justices Consider Whether Patents on Genes Are Valid http://www.nytimes.com/2013/04/15/business/as-court-considers-gene-patents-case-may-overlook-relevant-issues.html" rel="nofollow - http://www.nytimes.com/2013/04/15/business/as-court-considers-gene-patents-case-may-overlook-relevant-issues.html 4/15/2013 BRCA Gene Testing. Today's the Day: Challenging Human Gene Patents Before the Supreme Court. Case: Association for Molecular Pathology v. Myriad Genetics http://www.aclu.org/blog/womens-rights-free-speech-technology-and-liberty/todays-day-challenging-human-gene-patents" rel="nofollow - http://www.aclu.org/blog/womens-rights-free-speech-technology-and-liberty/todays-day-challenging-human-gene-patents Supreme Court considers gene patents; scientists react http://www.latimes.com/news/science/sciencenow/la-sci-sn-myriad-supreme-court-scientists-react-20130415,0,7266970.story" rel="nofollow - http://www.latimes.com/news/science/sciencenow/la-sci-sn-myriad-supreme-court-scientists-react-20130415,0,7266970.story This article states: "The Supreme Court is expected to issue its ruling on the Myriad Genetics case before its term ends in June." If anyone has a better article on the matter of the Supreme Court hearing the Case of: Association for Molecular Pathology v. Myriad Genetics, please post. Grateful for today.......Judy |
Posted By: Grateful for today
Date Posted: Jun 03 2013 at 9:25pm
|
FYI: Thread on BRCA1 and BRCA2 variants http://forum.tnbcfoundation.org/topic11231_post114300.html#114300" rel="nofollow - http://forum.tnbcfoundation.org/topic11231_post114300.html#114300 RE: The Supreme Court hearing the Case of: Association for Molecular Pathology v. Myriad Genetics with ruling expected June 2013. See above post and also other thread with info on that: http://forum.tnbcfoundation.org/myriad-are-genes-patentable_topic8064.html" rel="nofollow - http://forum.tnbcfoundation.org/myriad-are-genes-patentable_topic8064.html Grateful for today..............Judy |
Posted By: 123Donna
Date Posted: Sep 27 2016 at 10:36pm
First-ever $50 hereditary cancer test for families with a mutation“BRCA testing began 20 years ago, yet it is estimated that under 20% of adults with that mutation are aware they are a carrier.” Family is often the first thing people mention when they https://blog.getcolor.com/tagged/knowledgeispower" rel="nofollow - share their reasons for genetic testing. When a family member has a genetic mutation, there is a 50% chance that each of their first-degree relatives also has that same mutation. Yet even with a mutation in the family, genetic testing can be difficult for some people to access mainly due to high-costs and complicated processes acting as a barrier. For example, BRCA testing began 20 years ago, yet it is estimated that under 20% of adults with that mutation are aware they are a carrier.  To address this gap, Color, the BRCA Foundation and private donors are collaborating to offer genetic testing to parents, siblings, and adult children of people with mutations for a cost similar to filling a tank of gas at just $50, rather than the normal $249 price. Called the https://getcolor.com/family-testing" rel="nofollow - Color Family Testing Program , it is available to first-degree relatives of people who have tested positive for a mutation on any of the 30 genes analyzed on Color’s panel. They simply submit their report, or the report of a family member, to request the discounted testing. Color accepts reports of a deceased loved one’s mutation and also reports that came from other clinical labs. The program is being funded through generous donations from private donors and the BRCA Foundation. The benefits of genetic testing go beyond basic risk assessment. Knowing about a mutation gives people important information they can use to create personalized screening plans with their healthcare providers, which can aid in early detection, treatment and prevention. Confirming that a person has not inherited a family mutation is just as important to know, as it means that his or her children will not inherit that mutation either. It also gives healthcare providers additional details to use when personalizing their care. In parallel with the Color program, the BRCA Foundation is also launching the http://www.brcafoundation.org/registry/" rel="nofollow - BRCA Registry . The registry will serve as a resource to researchers working toward the cure and prevention of cancers caused by the BRCA mutations. By joining the registry, people with a BRCA mutation are selecting to be contacted about any upcoming opportunities to participate in relevant research studies. The BRCA Registry is funded by the BRCA Foundation. Our goals, along with those of the BRCA Foundation and generous private donors, are to improve access to genetic testing for everyone — individuals, families, healthcare providers, and researchers. The new Family Testing program will help more family members access their genetic information and the registry will connect researchers with a wide-range of participants in order to advance society’s collective understanding of cancer. http://blog.getcolor.com/first-ever-50-hereditary-cancer-test-for-families-with-a-mutation-ba04a6be3052#.zdkpax83o" rel="nofollow - http://blog.getcolor.com/first-ever-50-hereditary-cancer-test-for-families-with-a-mutation-ba04a6be3052#.zdkpax83o ------------- 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 |
Posted By: SagePatientAdvocates
Date Posted: Sep 27 2016 at 11:23pm
|
Dear Donna, This is wonderful news. Thank you so much for posting this!!!!!!!!! I have heard from several Certified Genetic Counselors, I respect, that getcolor is doing a really good job. 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 |
Posted By: Ssam
Date Posted: Sep 28 2016 at 5:52am
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Hi Steve, I'm in the UK and things are different here on the NHS. I just had what they call 'Level 1' BRCA testing because I don't qualify for the full screening as I do not have any family members who have had breast or ovarian cancer. I tested negative for the Level 1, which is obviously good news but it was disappointing to discover they had not run the full screening and they said I still cannot describe myself as BRCA negative. It would just be good if all the medics either side of the pond could agree on full tests for all Triple Negative ladies. ------------- Dx Dec 2015. Stage 1 Grade 2. 6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50. |
Posted By: SagePatientAdvocates
Date Posted: Sep 28 2016 at 12:22pm
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Dear Ssam, I have helped, as a patient advocate, a number of women in the UK. I know some of the challenges of NHS. I have a suggestion and that would be to contact Prof. Ros Eeles at Royal Marsden. She is one of the leading experts in the UK regarding the BRCA mutation and others that my be deleterious. In addition, I have found her to be a dedicated, caring professional. http://www.icr.ac.uk/our-research/researchers-and-teams/professor-rosalind-eeles/professional-activities" rel="nofollow - http://www.icr.ac.uk/our-research/researchers-and-teams/professor-rosalind-eeles/professional-activities If you are interested please send me a PM and we can exchange contact info. I would be happy to call you and then make an introduction to Prof. Eeles if you wish. And please know there are never any charges. 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 |