Very Important News re: TNBC/BRCA testing |
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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 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 |
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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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Charlene
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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
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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 |
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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 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 |
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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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mindy555
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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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 |
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mindy555
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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
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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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. |
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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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Charlene
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Joined: Aug 14 2010 Location: Atlanta, GA Status: Offline Points: 613 |
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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
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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 |
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CathyF
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Joined: Aug 21 2010 Location: Texas Status: Offline Points: 29 |
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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.
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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 |
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SagePatientAdvocates
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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 |
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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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Posted: Aug 19 2011 at 6:39pm |
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Wow Steve, something else to worry about. I'm self insured since I have my own one woman company. Can I be denied now?
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mindy555
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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. |
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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 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 |
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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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SagePatientAdvocates
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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) 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 She is very smart and very nice. all the best, 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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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. Edited by mindy555 - Aug 20 2011 at 12:38am |
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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 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 Edited by mindy555 - Aug 20 2011 at 1:41am |
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SagePatientAdvocates
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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
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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: 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 |
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mainsailset
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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.
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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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SagePatientAdvocates
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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.. Wonderful organization, based in California and they also have a relationship with MD Anderson Cancer Center in Houston. all the best, Steve
Edited by steve - Aug 23 2011 at 6:32am |
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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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Posted: Aug 23 2011 at 7:02pm |
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Thanks Steve!
Will do. My very best to all. Love, Mindy |
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