Very Important News re: TNBC/BRCA testing |
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mindy555 
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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 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. Edited by mindy555 - Mar 04 2012 at 12:44am |
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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 |
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SagePatientAdvocates
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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
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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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 New BART™ Technology Detects Rare DNA Rearrangements in BRCA1 and BRCA2 GenesSalt Lake City, August 1, 2006—Myriad Genetics, Inc. (Nasdaq: MYGN) (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. |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 05 2011 at 7:59am |
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This is just my two cents about this article. I think everyone dx with tnbc should automatically be tested for the BRCA gene. Interesting on how they view screening.
Testing For Breast Cancer Mutations, Not For EveryoneToo many average-risk women and too few high-risk women receive genetic counseling and testing for hereditary breast and ovarian cancers, research shows. Experts at The University of Texas MD Anderson Cancer Center share advice to help patients and their doctors better evaluate family history and make more sound decisions about who should be tested."If you find out you're the right candidate for genetic testing, one benefit of learning you have a mutation is that you and your doctor can work together to monitor and address yourcancer risks," said Karen Lu, M.D., co-medical director of the Clinical Cancer Genetics program at MD Anderson. "This can help prevent cancer or find it early, when it's most treatable." Women with BRCA1 or BRCA2 gene mutations are much more likely to get breast and ovarian cancers. Men with these mutations face an increased risk of breast cancer and possibly pancreatic and early-onset prostate cancers. Focus on close blood relatives. But, only about 5 to 10% of cancer cases are due to an inherited cause. So, the chances that the disease "runs in the family" are slim, even if several family members have had cancer. Before jumping to conclusions, Lu suggests focusing on first-degree blood relatives (parents, siblings, children) and second-degree relatives (grandparents, aunts, uncles, nieces, nephews). Women are twice as likely to develop breast cancer if one or more of these relatives have had the disease. Breast cancer risk is even higher if the disease has appeared in multiple generations on the same side of the family. "For example, breast cancer probably doesn't run in the family if your mother's sister and father's sister had breast cancer," Lu said. Size up these relatives' personal cancer histories. Testing for BRCA mutations may be appropriate if one or more close blood relatives were diagnosed with: the same type of cancer, a BRCA1 or BRCA2 mutation, breast or ovarian cancer before age 50, both breast and ovarian cancer, or male breast cancer The chances for a BRCA mutation is even higher for people of Ashkenazi (Eastern European) Jewish descent with one or more relatives who fit this description. Speak with a genetic counselor. If one or more close blood relatives fit these criteria, ask a doctor for a genetic counseling referral. A genetic counselor can discuss the risks and benefits of genetic testing. If genetic testing is appropriate, the best person to test is usually the person with cancer. "After we identify the mutation that caused their cancer, we can test first-degree relatives mother, sisters, daughters to see if they also carry it," Lu said. Carefully weigh testing's pros and cons. It's also important to consider family members' feelings. That's because the test results may forecast their cancer risks as well. "No matter what you decide, remember that finding out you have a gene mutation doesn't mean you'll definitely get cancer," Lu said. "And, learning you don't have a gene mutation doesn't guarantee that you won't get cancer." |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: Oct 05 2011 at 11:12am |
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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.
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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 |
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mindy555
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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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.
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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 |
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Nadine22
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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!! |
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mindy555
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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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 Edited by mindy555 - Feb 18 2012 at 2:48am |
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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 |
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SagePatientAdvocates
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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
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Nadine22
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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 |
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SagePatientAdvocates
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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
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Nadine22
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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 |
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SagePatientAdvocates
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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- Individual circumstances are important regarding treatment, in my opinion. good luck, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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mindy555
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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Posted: Feb 19 2012 at 4:31pm |
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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 |
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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 |
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Nadine22
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Posted: Feb 19 2012 at 11:42pm |
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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 |
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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.
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Juliedor
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Posted: Feb 20 2012 at 12:30am |
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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
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Feb 20 2012 at 12:50am |
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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 and others from Australia will see and post on that site. With caring and positive thoughts, Grateful for today............Judy Edited by Grateful for today - Feb 20 2012 at 12:51am |
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Juliedor
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Posted: Feb 20 2012 at 1:14am |
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Thanks so much Judy.
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SagePatientAdvocates
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Posted: Feb 20 2012 at 5:37am |
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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- 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 Edited by steve - Feb 20 2012 at 7:17am |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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ds21
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Joined: Dec 23 2011 Location: Michigan Status: Offline Points: 92 |
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Posted: Feb 20 2012 at 9:23am |
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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 |
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