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Meadow
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Joined: Apr 22 2017
Location: seattle, wa
Status: Offline
Points: 88
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Topic: Where to find a patient advocate and online suppor Posted: Nov 24 2021 at 8:59pm |
I have been on these message boards for many years, since learning I had TNBC. Today I am here for a friend who a few days ago was diagnosed with ER+, PR+ breast cancer and learned today that an MRI showed possible bone metastasis. She wants to hire a patient advocate but is not sure how to go about finding one. Any suggestions? She also is looking for a forum like this for support (because I told her how very helpful it was for me). This would not be the right forum because her cancer is hormone positive. Does anyone know of an appropriate one? A little more about her, in case it matters: She lives in the Seattle area, is 44, married, and has three kids ages 4-12. Thanks in advance for any suggestions.
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cookie54
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Joined: Oct 24 2020
Location: New Jersey
Status: Offline
Points: 78
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Posted: Nov 28 2021 at 6:55pm |
Hi Meadow, Sorry to hear of your friend's diagnosis. She is very lucky to have a friend like you on her side! I personally don't know of any patient advocates for hire maybe she can find help through her insurance? Also maybe her local breast cancer chapter? I find this tnbc site to be extremely helpful and I also use breastcancer.org forum. There are many different categories there and wonderful helpful people. Best wishes to you both.
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8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2- 9/16 BMX,AC 6/20,StageIIIC,Gr3,ER-/PR-HER2- 6/20 Carbo/Gem/pembro 10/20 ALND 5/8 nodes,Rad x25 11/20 thyroid ca Xeloda2/21 Stage IV 6/22 lung mets
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SagePatientAdvocates
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Joined: Apr 15 2009
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Points: 4748
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Posted: Nov 30 2021 at 8:35am |
Dear Meadow, I am a patient advocate and have helped many hundreds of women on this site since 2009. I would be happy to be a resource for your friend and have helped many women with breast cancer that is not TNBC. I am President of SAGE Patient Advocates, a non-profit foundation, I founded, and it is important for your friend to know that I am not a medical professional and do not give medical advice. Also the services provided by SAGE Patient Advocates (SAGE) and myself are free of charge. SAGE is independent and does not accept monies from cancer centers or oncologists for referrals or from drug companies.
If you friend would like to speak with me I would be happy to do a Zoom conference with her. She can send me a PM and I will give her my contact info or she can write to
info@sagepatientadvocates.org
Sorry to read that you friend possibly has bone metastasis. Once I understand all of her issues I may have several thoughts about whom she might consider consulting with. It may be important for your friend to have good insurance and a willingness to travel to get a second opinion.
with my love to all here,
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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Meadow
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Joined: Apr 22 2017
Location: seattle, wa
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Points: 88
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Posted: Nov 30 2021 at 4:30pm |
Thanks so much Steve. I will pass your message along to my friend.
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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13509
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Posted: Dec 03 2021 at 8:32pm |
Hi Meadow!
I sure hope your friend reaches out to Steve. He's amazing and has helped so many of us on this forum.
Regarding other forums for ER+, PR+ breast cancers, the only one I know of is breastcancer.org.
Your friend is very lucky to have you helping support her during this diagnosis. Wishing her the best.
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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