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scared4herlife View Drop Down
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    Posted: Apr 14 2014 at 5:29pm
Hello I don't have this myself but my babY sister was diagnosed a couple days before her 25th birthday. She has stage 4 and it is in her bones as far as I know. She lives about 6hrs away and I dont get all the answers I want I di know that they won't do a mastectomy which I am very confused about, they say it wont do any good. Im pretty sure you can add inflammatory breast cancer in there because that was the original diagnosis. This is all overwhelming and everything is just a spin. Have any of you had to deal with it like this I would like to know what to expect. I am a nurse but when it comes to this its out of my comfort zone.
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2014 at 6:37pm
Welcome.  I'm so sorry your sister was dx with IBC TNBC at such an early age.  There is a special group for IBC with more information that you might want to check out.  Here's a link to the forum on IBC:



Terry Arnold is the founder and survivor of the IBC Network and tirelessly involved in research and awareness of IBC.  You may want to contact her directly through the link above.

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 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: Apr 15 2014 at 11:20pm
Dear scared4herlife,

Words cannot come close to describing what is in my heart when I read your post. I am truly sorry.

I have had some experience, as a volunteer patient advocate, with IBC. 

I can't give you or your sister medical advice regarding her condition but a conversation might be helpful as I am in touch with several IBC experts that I could refer your sister to, with her permission. 

Will send you my contact info in a PM. I am in San Diego and should be up for another hour.

I will be at MD Anderson Cancer Center on Sunday and Johns Hopkins next Wed.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2014 at 8:26pm
Dear Scared4herlife,

I hope that you have more information now about your sister's condition and that she has been able to get started on a treatment plan.

As for the issue of her medical team not doing a mastectomy at this time - if the cancer is already in her bones, then they need to start a systemic treatment, meaning chemotherapy most likely, to treat all  the cancer that is anywhere in her body and not just the breasts.  Standardly, surgeons won't operate while you are on chemotherapy and most docs require about 3 weeks of healing post-surgery before they will start chemo, so if she had a mastectomy that would delay starting chemo for quite awhile and the cancer in the bones would still be growing during that time and maybe spreading to other organs.  It's not the cancer in the breasts that can directly threaten your life, right? It's when the cancer invades organs and causes them to quit functioning properly that your life is threatened.  Make sense?

I am praying for peace for you and your sister and your entire family that you will experience the miracle of complete healing.  25 is just insanely young to have breast cancer.  Her adult life is just getting started!  

Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Kitkat View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kitkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2014 at 10:03pm
I am So very very sorry to hear this as your sister is way to young to have this. My heart goes out to you and your family.
Dx 6-10 stage 1, grade 3, 1.2 cm tumor w microvascular invasion, CTx4. 25 rads w 7 boost. 1-13 stage 4 w 4-1 cm tumors to lungs. Xeloda 1500x 2 a day, ct scan 3-29, 50% shrinkage! Hopin and praying
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hydeskate View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hydeskate Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2014 at 9:52pm
So sorry to hear about your sister, your situation reminds me of me and my sister.  I was the baby sister with the cancer and my big sister was there from the beginning.  I don't have inflammatory so can't help with that, I can tell you just being there or a phone call away will mean alot.   My sister doesn't push for information she waits till I am ready to disperse info, she wasn't a nurse but she had cared for my mom during her battle with ovarian.

Helping around the house not pushing to talk about the bad word starting with a C, keeping overly helpful relatives at an arm''s length.   She also a good cook making sure that we had ready made meals that just needed to be warmed. 

Now I was able to get a Bilateral Mastectomy ONLY after my scans showed NED (no evidence of disease), and I am happy to say I am Still NED going on 5 years, I was dx in 2008 with Stage IV .
IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER-
Mets Liver & Lungs
Sjogren's Syndrome
http://heidiy13.blogspot.com/
http://heidyplayscalediorama.blogspot.com/
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Adnerb View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2014 at 10:55pm
So sorry to hear about your kid sister.  She is so young!  When I was diagnosed with TNBC in 2005 not a lot was known about it.  That has changed.  I hope that whatever treatment she is currently getting will help her!

Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Tigger View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tigger Quote  Post ReplyReply Direct Link To This Post Posted: May 06 2014 at 5:39pm
Doing a Mastectomy will get rid of some of the cancer immediately and that is a good thing because that is the cancer that broke off into her bloodstream and spread.

However there are good reasons for doing the mastectomy both before or after chemo, that decision is up to both your sister and her doctor.  I personally just wanted the traitors gone and got the Mastectomy ASAP

While your sister is stage iv, which sucks,  know that bone mets are the best possible mets.  They are not in any major organ like long liver or brain. So that is good news and you need to take the good news where you can find it

What is most important is for you to know that her future, and how long you have with her, is completely uncertain.  Both myself and Hydeskate (above) are five year survivors (almost) of stage iv with No Evidence of Disease so, you never know what might happen.  But it is important to remember that the median survival for stage iv is only a bit over a year.  Love your sister and be there for her,  either one of you could get hit by a bus tomorrow.

Ask her what she wants but know she probably does not know the answer and will be exhausted from Chemo. 
  I know people who hated the idea of guests during chemo, because they think they have to be "on," and clean the house, and entertain, etc.   For me, having guests stop by for 15 minutes while they were passing by would have been perfect (but i didn't think of this until chemo was over)

I do not know how close you are to your baby sister.  maybe if you can visit her before chemo starts and zonks her,  and be sure to call her regularly during chemo. Just let her know you love her but know she will need space to sleep.  Lots of space to sleep. 

All chemo regimens and how individuals react to them are different I hope the best for your sister.

Tigger


Tigger~
diag 8/24/9. BRCA 1+. mets to lungs found 9/3/9. double mast 9/10/09. Treated with Taxol, Avasin and Zometa. No radiation. Had ovaries removed summer of 2010. NED since May 2010
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