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123Donna View Drop Down
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    Posted: Jun 12 2012 at 7:00pm
Jaime,

With being BRCA positive, it's probably a good time to meet with a Certified Genetics Counselor.  They can go over your options for reducing future risks.

Momsbabygirl,

Welcome to a great place for information and support for TNBC.  If your mother is having a lumpectomy, chemo and radiation are almost always part of the treatment plan.  If a woman has a mastectomy and clear nodes, chemo will be recommended, but not necessarily radiation.  

There's been much talk about sugar feeding cancer.  From what I've learned is that cancer is fast growing and that everything turns to sugar in our bodies.  Eating healthy is important and fruits and vegetables are natural and good for us.  I stay away from extra added sugar in my food.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomsBabyGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2012 at 6:14pm
Hello all... My name is Sasha I'm 26 yo and my mother is 53 just diagnosed with tnbc I'm April 2012. My grandmother 75yo diagnosed with her 2 nu oct 2011. Ive joined this forum to reach out for help. I want to do everything that I can to increase my moms survival rate. I love her and I need her and so dose my 3month old. She is the strongest woman I know. The dr said her tumor was the size of a pea and a lumpectomy would be best. We have surgery tomorrow at 10a in winston salem NC. What should I expect? I'm just soo freaked out because of how this tnbc can be soo tricky and come back in soft tissue organs like the brain. What can we do to prevent that? I'm new to the game and very clueless. I need some direction, I'm so scattered brained. I just Don't want her to be in any pain. She is saying now something like she hasnt been told that she will be taking chemo, but from what I read I thought everyone took chemo and it was radiation that everyone may not need. Another question, I know sugar feeds cancer but what about natural sugar like in fruits ... She loves fruit smoothies like the Naked brand. We are being strong for her because we know God is an awesome God.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2012 at 6:03pm
Jamie and Amy,
Welcome to the best group of cyber sisters ever!  There is a wealth of support, information and wisdom here plus a place to vent anytime you need to.  Sorry you are going through this horrible ordeal but you will get through it one day at a time.
 
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2012 at 12:15pm

Dear Amy Michael,

So sorry you needed to find this site, but you are in good company.  This is a fantastic Support Group for TNBC.
It sounds as though you are progressing along with treatments and future surgery in much the same manner as the others here.  Giving control is hard, but we all learn through this journey that there are just some things we can't control.  I pray that the sentinel node will be clear and your surgery goes well.  I will keep you in my prayers and your family also.  It sounds as though everyone is making the best of a bad situation.  Please keep posting and sharing.  We understand TNBC probably better than anyone, except maybe a few very gifted professionals.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ann u Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2012 at 10:54am
Jamie -
 
So sorry you have to join our club.
 
Have you thought of talking with a Certified Genetics Counselor about your BRCA results?  If you have access to one, they can offer a wealth of information, as well as emotional support for you.  They can give you names of surgeons who are well-versed in BRCA patients, as well as protocol that should be followed with surgeries.  You are so fortunate that you asked for a copy of your report - it's something that cancer patients usually do with each and every procedure, scan and biopsy that we have. 
 
You'll get through this and we're here to support you.
 
Ann
8/06: IDC 1cm, 0/9 lymph nodes, lumpectomy, Mammosite radiation, 4 x A/C
5/07: BRCA1+ (5382insC)
11/09: IDC 3mm, double mastectomy w/reconstruction

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Team Michael Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2012 at 8:09am
Hey everyone I am 44 years old and dx TNBC on April 19, 2012, tumor grade 3~2.5 cm~lateral position.   I found a lump in my rt breast on Easter Sunday! Staged right now at a 2A but may change after surgery.   I really had no idea about Triple Negative until I got my biopsy back and started internet searching prior to meeting with my surgeon. Boy was that a terrifying time.  All the info about how aggressive TNBC is and all the awful stats about survival.  I had my port placement on 5/14 and started chemo on 5/15.  I am getting ready for round three on Thursday 5/14.  I have to have 16 wks of chemo, followed by a month of recovery then surgery.  I have opted to have both breast taken.  I have a strong family hx on my fathers side.  I am BRCA 1 and 2 negative.  My axillary nodes were biopsied and found to be benign (Thank God).  Still pretty nervous about not knowing about the sentinel nodes.  All in all I am blessed, I feel good, have my appetite still and I am surrounded by loving family and friends!  The hardest part for me is how long the process takes and giving up the control.  I am trying to control the things that I can (like shaving my head before my hair fell out) and letting go of the things that I can no longer be in charge of.   I have had a range of emotions in the last 6 wks.  I feel guilty that my kids (son age 15; daughter age 12) and my husband have to be put through all of this.  They are troopers and seem to be doing well.  I am trying to keep a positive attitude and remain in "day" meaning focusing on today and how wonderful it is, not looking too far ahead.  If I focus too far ahead I start to get overwhelmed and sad.  So glad I found the TNBC foundation and this forum!  XOXOXOXOXOXOXXOXOXO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote survivor31 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2012 at 5:00pm
Jamie,
You probably feel like your world is upside down, but please know that things will get better. I've been dealing with BR Cancer for almost 31 years. June 15th is my 31st anniversary from my first cancer and I work with a lot of cancer survivors. What I like to share with people is there are many pieces of the pie in beating cancer. Faith, a good medical team, great friends and family, good attitude, laughter and a good sense of humo, good nutrition (staying away from sugar) and stay away from negative people. Also, be educated, but don't believe everything you read on the Internet. There are many alternative products out there, the most important is to make sure it has Gold Standard Research Behind it.
The best of luck to you and know you have people who are here for you.
JP
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2012 at 1:29pm
Jamie,

It seems so surreal that 3 sisters are fighting this disease around the same time.  When it impacts you, it makes treatment decisions so much more difficult to make.  Having a positive BRCA tests also poses more decisions to make at a time when you're probably overwhelmed.  You've found a good place here where you can ask questions, cry or just vent.  We get it and understand what you're feeling.  This is one club no one wants to join. 

Have you had your Vitamin D level checked?  Most of us diagnosed with TNBC have very low levels of Vitamin D. 

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page30.html

http://www.vitamindcouncil.org/health-conditions/cancer/

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2012 at 1:24pm
Jamie, you are dealing with the worst of it now, I am so terribly sorry.  The shock and fear can be overwhelming. But reading between the lines of your post, I can sense you have a lot of strength, more than enough to deal with this, and also the blessing of being able to reach out to others for support.  You will get through this.  And you will find lots of support amd compassion here.
I you have not already done so, you should also check out www.facingourrisk.org, a website and nonprofit devoted to HBOC (Hereditary Breast and Ovarian Cancer).  Both sites have been a lifeline for me.  On this site I can talk about TNBC.  On the other site most women are "previvors" and the talk is mostly about dealing with loss of breasts and ovaries.  (And God bless the people who created these sites and keep them running.)
Pleae consider working with a therapist who can help you through this.  I was overwhelmed with anxiety and sadness, not just about the cancer but about the impact of losing my ovaries and the loss of my breasts.  I cried and cried too.  I would not have thought before my journey that my identity and sense of self depended so much on feminine self, and how much my feminine self was wrapped up with my "girl parts," as you call them.  I found a really gifted psychiatrist and saw him twice a week through my journey.  He did so much to help me talk about, process, understand, and manage these complex feelings.  The woman in you is in your heart and your soul, not your body parts.
 
I had a lot in common with you--diagnosed in my early 40's (a little older than you), found out about my BRCA mutation AND cancer after a cousin was diagnosed, my sister diagnosed with TNBC a few months after me (I flew cross country to be with her for her BMX ten days after my last chemo), single mom terrified for my daughter.  I have had my ovaries and breasts removed.  When I was in the thick of it, it was hard to imagine life would ever feel normal or calm again, but I'm 2.5 years since treatment and I do feel like I have my life back, and my happiness, despite the losses and trauma I've experienced.  You will get to that place also.  If you want to talk one-on-one with me, you can email separately here and I can give you my contact info.  I check this site often.
Many hugs and kind thoughts going to you. 
 
Katdoll
 
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2012 at 12:38pm
Hi Jamie -
I am sorry you are now part of the "club," obviously no one voluntarily joins...:)
I remember when I was diagnosed; it is very overwhelming to say the least. Try and take things one day at a time, treatment for TNBC is a lengthy process, but one that you will get through and move on from. It sounds like you have a lot of family support to count on. That will be a tremendous help in dealing with this. This site also offers much support too; there are many many of us who have been through it! My thoughts are with you as you sort out your course of treatment...we are all here for you too!
hugs,
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote josie42 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2012 at 10:12am
hello, I am 42. in march of 2012 my world was disturbed by the news that my 57 y/o sister mag was diagnosed with breast cancer. I am one of 7 children, 6 girls, 1 boy. needless to say we are ver close. we activated "sister power" & took turns trying to provide "comforting words' to both Mag & ourselves. (I have since apoligized to her as now I understand those words don't make anyone actually feel better) we sat next to her during the surgeon's visits, her decision for bilateral masectomy, & starting chemo.

I made my mammo appt. it had been a year & a half since the last one, so what right? April 26th, I went, I told my story, got my boobs squeezed..... about 4pm that day was the first time I got THE LOOK from the technician & "OH Jamie, I'm soo sorry, but I see something." my universe shifted that very moment, somehow I realized I would never be the same.

I was diagnosed with Stage 2 , invasive ductal cancer, Triple neg. I had a secong opinion from two great surgeons. I am a CRNP, know my way around a medical diagnosis. but all that changes when it's you. I waited to tell Mag until I knew. I did the BRCA test, sweated the results, & scheduled surgery (eother lumpectomy or bilaterall masectomy) depending on the results. of course there was a delay in the results, i called Myriad labs in Utah, i cried i begged to get the results. 

meantime i went to the onco. listened to the recommendations: BRCA results, then decide; 1) lumpectomy (if its negative) or if positive  2)lumpectomy & try to live with the fact that i have upto an 87%chance  to redevelope BC before age 70. or 3) bilateral masectomy, have my ovaries out. take aware most of my girlie parts this year if possible. 

you never realize how much ur breasts are a part of ur womanhood until someone threatens to remove them. ovaries too. well , anyway about 5 days before my surgery, i get a call from the onco. CRNP she tells me "you are BRCA negative Jamie" I get off the phone, inform my boyfriend, call Mag then call every other poor soul who has been living on pins & needles waiting for these bloody results. celebrations throughout the land we are all sooo very happy. it will stop at Mag & I. my  sisters & neices will be safe!!!

not so fast.... I ask to have the report faxed to me. (must keep my own chart) I look at the paper I almost didn't, something in the back of my mind says this isn't right. i re read it over & over, my brain isn't registering it...... i call the NP, wait for her to call back ( 45 minutes later). i call the lab, ask to speak to someone to verify what I am reading as a positive result. they kindly verify that i am correct it is POSITIVE......  i am sobbing uncontrollably at this moment. my sisters, my neices..... it is decided that my best option is Lumpectomy, sentinel node Biopsy, & portacath placement(done 6/5/12), then do the chemo, then I will decide if bilateral masectomy is my fate. 

i am scared on a whole new level today. sister Joyce the one who has held both my & mag's hand every step of the way has calcifications, she had a biopsy which showed DCIS in situ. she goes for a lumpectomy on thursday. we are  holding our breath, waiting for her BRCA results. so when will this stop? Why does God have to be soo cruel? When will i be able to wear a bra again? most importantly: should i opt for a "DD" size implant? hahaha ..... i have to laugh, am dehydrated form the tears. peace to all of you. i have discovered i have many new sisters. sorry to join ur club though. no offense, jamie
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