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BRCA study re: change surveillance

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SagePatientAdvocates View Drop Down
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    Posted: Sep 17 2018 at 8:16pm
Dear TNBC family,

Rarely post but am still active in our community and continue to help many here. And my heart remains with all here.

This article was brought to my attention by my dear friend, Lisa Guzzardi, who has a wonderful BRCA blog.

Traditional surveillance, it is my understanding, for BRCA+ women is yearly, a mammogram every six months alternating with a Breast MRI every six months.

The new University of Chicago suggested protocol as outlined, calls for Breast MRI's every six months.

http:// https://www.eurekalert.org/pub_releases/2018-09/uocm-fww091218.php

I am not a doctor and am not suggesting this, or any protocol, but rather suggest that anyone here, who is BRCA+, ask their breast medical oncologist about the plan. 

Donna123 also brought up a valid question "will insurance pay for this new protocol?"
My answer, at the moment, is 'not sure.' I will try to find out and revert. 

And if anyone does get an answer on this, please let us know.

with my love to all here,

Steve

p.s. by the way, my daughter just celebrated 14 years NED. Still the most beautiful acronym I have ever heard..No Evidence of Disease. Thanks to all of you for your prayers/support for her/me over the years.


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 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2018 at 8:48pm
This link will work:

For women with genetic risk, twice-a-year MRI beats mammograms

Enhanced scans found more cancers, all smaller than 1 centimeter


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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Post Options Post Options   Thanks (0) Thanks(0)   Quote nurseruthie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2018 at 8:54pm
Steve, I am new to this site as my 35 year old daughter has just recently been diagnosed.  I am so happy that your daughter is well and so terrified for my own daughter and the challenges we will face.  Can you recommend a good website for obtaining accurate information? There are so many questions that only seem to generate ambiguous responses.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2018 at 6:06pm
Nurseruthie,

A good website would be the NCCN Guidelines.  I'm not sure what stage your daughter is, but they have different links for breast cancer by stage.




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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Post Options Post Options   Thanks (0) Thanks(0)   Quote nurseruthie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 20 2018 at 8:37pm
Thank you Donna!
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