New Posts New Posts RSS Feed - Where to find a patient advocate and online suppor
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Where to find a patient advocate and online suppor

 Post Reply Post Reply
Author
Meadow View Drop Down
Groupie
Groupie
Avatar

Joined: Apr 22 2017
Location: seattle, wa
Status: Offline
Points: 88
Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
cookie54 View Drop Down
Groupie
Groupie
Avatar

Joined: Oct 24 2020
Location: New Jersey
Status: Offline
Points: 78
Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post 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.
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



Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4748
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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




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
Back to Top
Meadow View Drop Down
Groupie
Groupie
Avatar

Joined: Apr 22 2017
Location: seattle, wa
Status: Offline
Points: 88
Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2021 at 4:30pm
Thanks so much Steve.  I will pass your message along to my friend.  
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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
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

Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.