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Prior IBC threads from other forums

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Grateful for today View Drop Down
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    Posted: Nov 14 2012 at 11:46pm
Here's a listing of some of the prior IBC (Inflammatory Breast Cancer) related threads that are on
other forums:


Inflammatory Breast Cancer
http://forum.tnbcfoundation.org/inflammatory-breast-cancer_topic8337.html
which includes this link with pictures
      http://www.ibcresearch.org/visual-symptoms-of-ibc/

Just posted Inflammatory Breast Cancer
http://forum.tnbcfoundation.org/just-posted-inflammatory-breast-cancer_topic8338_page1.html

IBC
http://forum.tnbcfoundation.org/i-b-c_topic9110_page1.html
which includes:
2012 Abstract from Ann Oncol 2012 Apr;23(4):870-5. Epub 2011 Jul 15:
Identifying factors that impact survival among women with inflammatory breast cancer.
Dawood S, Ueno NT, Valero V, Woodward WA, Buchholz TA, Hortobagyi GN, Gonzalez-Angulo AM, Cristofanilli M.
http://www.ncbi.nlm.nih.gov/pubmed/21765048


If others remember/find prior threads related to IBC, please add......so one will be easily able
to find the prior posts on this new forum: Inflammatory Breast Cancer.



With caring and hopeful thoughts,
Grateful for today...............Judy
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2012 at 2:38pm
Thank you Judy,

much appreciated,

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2013 at 5:24pm
Bumping for new members.


For the newly diagnosed:
               Please be aware IBC (Inflammatory Breast Cancer) is NOT common.



Grateful for today.............Judy


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Post Options Post Options   Thanks (0) Thanks(0)   Quote JudyAnn Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2013 at 6:38pm
I was recently diagnosed with IBC triple negative. When I had my bone scan, I recieved a call that said they had detected activity in the femur area and needed me to return to the hospital for more pictures. When I saw my surgeon and Chemo doc, shortly thereafter, I asked about this and they stated the hospital had mistaken a screw in my left knee for this activity. Isnt the femur near the hip, not the knee? What are the odds that the doctors simply didnt want to tell me the truth to help maintain my positive attitude? I just joined this forum, and have been reading some posts that say 18 month survival, and I am 43 and feel overall healthy and like i am going to live to see old age. I start my chemo tommorrow, and I understand my general well being after this will substancially decrease due to the many side effects. Without it I know my disease will progress and lead to death, and this could possibly be the last day I feel "healthy". I guess my main concern and question is, What are my chances of beating this thing? I want to know if I only have a certain amount of time left. I fully intend to stay positive despite all, and continue to fight regardless. I just want to know what type of honesty can I expect from my doctors, from everyones experiences. 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2013 at 6:51pm
Hi, Judy.  Your femur is your thigh bone, extending from your knee to hip.   
If they say they saw a screw, not a met, you can believe them.  Besides, mets to the femur are very rare and unlikely to present as a first site in case of recurrence.  It is really hard to do this, but try to believe all will be ok.  The odds are in your favor, despite all the frightening language around triple negative breast cancer.    Good luck with your chemo!!  I think you will find that it is not as bad as you are expecting. 

We are here for you.
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2013 at 7:22pm
JudyAnn,

Where are you being treated?  There are a couple of IBC specialists that you might want to see for a second opinion.  Steve has many contacts and has posted them in this thread.  

Terry Arnold is an IBC survivor and advocate.  You might also want to check out this link:


If you're on Facebook, there is an IBC Page:






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 MayM Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2013 at 5:36pm
I've checked out theibcnetwork.org and you can indeed find some good information from there. :) If you're in doubt, I think it is best if you seek a second opinion.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2013 at 6:01pm
Dear Judy Ann,

it is inconceivable to me that if a doc said a mistake was made and that it was a screw..like Denise said "it is a screw."

Having said all of the above TNBC/IBC can be very aggressive and you should make sure you are seeing an IBC specialist. S/he may recommend a different treatment plan but that is generally done only after you have progression and hopefully that does not happen. It is rare that a new doctor will recommend a change when you are on a certain protocol.

But, it may make sense to have your pathology re-done to make sure your HER2/neu is truly negative.
One of the best places to do that is at Vanderbilt and I believe you can ask your oncologist to do do that for you. I do not believe you have to go there.

The two IBC experts that I suggest you consider seeing, at some point, are Dr. Vicente Valero at MD Anderson Cancer Center in Houston and Dr. Massimo Cristofanilli at Jefferson, Philadelphia. 

I have worked with several women at both IBC centers and would be happy to talk with you if you wish.
I am a patient advocate working on a volunteer basis, so no charge, but also no medical advice. Nevertheless maybe it can be helpful if we talk. I am sending you my contact info.

warmly,

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
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