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debB View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2012 at 11:22pm
Maggie,

From everything that I have read here, you can have IBC and it can stillbe Triple Negative. Please don't be fooled into thinking otherwise- it is too important!!!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote OzWomen2011 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2012 at 5:26pm
Hello I'm so glad I found this site! I was diagnosed last year at 29. I just recently finished with all my cancer steps: -) It's been tough finding other women I know that have had TNBC.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2012 at 5:42pm
OzWomen,
This is a great board to come to.  The people here are caring and loving and very informative.  Ask any questions you have or rant if you need to.  Again, welcome.
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2012 at 10:09pm
OzWomen,

I'm sorry you have a reason to be here, but please stick around.  The other women & gents are the most beautiful compassionate & super helpful people I've had the privileged to meet & get to know.   We're all in different age groups & various walks of life.. Yet our TN bond unites us --with a loving respect & genuine concern for one another... like NO other.

I'd love to hear your story when/if you're ready and feel up to it.  Congratulations for finishing treatment!!!  Thumbs Up  A HUGE step.   It's slow tonight- so be sure to check back in.  And Often!!  Take a look around.  There are many interesting, useful resources just a click away.

Big Welcoming Hugs, Oz!!!!! Hug
Mindy


Edited by mindy555 - Apr 13 2012 at 10:37pm
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaggieBr Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2012 at 8:28am
Deb,
Thank you so much for the information- I have gotten a couple of opinions on IBC and the consensus seems to be that this is the recurrence coming through the skin.  The good news is that I'm 3 days out from my second infusion with ixempra and the rash has faded significantly,and in some places is gone!  I've still got 4 more to go, then oral with xeloda, then maybe back to this or something else.   I really appreciate all of your advice and any info. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2012 at 9:43am
Dear Maggie,

Although Inflammatory Breast Cancer (IBC) is quite rare (estimated 1-2% of all breast cancer) I have helped six women over the last year who had IBC and unfortunately all, but one, were originally mis-diagnosed as "skin mets." 

It seems to be a huge problem, from my perspective. I say "huge" because to me, each woman is special and each deserves the best care and expert advice. And when, I imagine, hundreds of women a year are misdiagnosed that is a major problem, in my opinion.

I know you said you got several opinions about whether you have IBC. I just want to make sure that you have seen IBC experts. In order to get a proper diagnosis a 'skin-punch' biopsy has to be performed. Have you had that done?

Also, you want to see an oncologist who is an expert in IBC...someone who has seen thousands of cases.
Deb is correct; you can have IBC that is TNBC. In fact, I have been told that 30-50% of all IBC cases are TNBC. THe converse is not true. 

IBC is often a very nasty, aggressive breast cancer and it is essential that you get the proper treatment. Normally surgery is not suggested, initially, but chemo is given to try to kill the IBC and then, often, surgery is suggested. Radiation therapy is offered on a case-by-case basis and again you want to make sure you have an expert oncologist in IBC and also a radiation oncologist who is an expert in IBC advising you. 

Maggie, I don't mean to upset you. I just want to make sure you have seen IBC experts. I think it is extremely important to get an accurate diagnosis and from my experience, unfortunately, all too many oncologists are not experts in IBC. It is essential that IBC is ruled out or confirmed.

I am sending you my contact info and I would be happy to talk with you, if you wish. I am a volunteer patient advocate and I am not a medical professional and will not give you medical advice but maybe the talk can be helpful?

warmly,

Steve

from-


Skin punch biopsy – This kind of biopsy is performed when inflammatory breast cancer orPaget’s disease is suspected. A tiny device that looks like a miniature cookie cutter is used to core out a piece of the skin of the breast (in the case of inflammatory breast cancer) or a piece of the nipple/areola complex (in the case of Paget’s disease). Usually, one to two stitches are needed to close the puncture site.
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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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2012 at 3:01pm
Hello Misty,
I am so glad you found us.  I had already finished treatment when I found this site also.  It makes no difference, you can still learn things to help you in your journey and you can share things to help others along the journey.
 
Us Triple Negative girls are a Great Support Group.  Please share more about your situation if you would/could. 
 
God Bless and Thank You,
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 - 11/2015-9 yrs NED
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debB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2012 at 3:47pm
Hi Ozwomen,

So glad you found us! This is a great place to learn and share!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cochise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 4:58am
Thank you  for this wonderful site .
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 5:09am
To all our new members to this site;
 
This is an invitation to join us at the Spiritual Support thread also. We are a group of caring, loving believers with soft shoulders and a praying heart. Please join us....we all need a boost in our faith every once in awhile. This is the thread to get just that.
Waiting to see you all there.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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rigatonismom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 8:58am
Hi Cochise,
Welcome to this web site.  You will find a lot of good information and very supportive people here.  You are welcome to tell us your story if you want to or to rant and rave if you need to.
Again welcome,
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maureen0424 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 6:47pm
Well, today I had my first meeting with my oncologist and found out the 2.2 cm tumor I had removed last week was triple negative.  I also had one positive node.  I think I was more shocked today than when I was told last month that the lump I had discovered was positive.  I'm glad I found this site.  I need to read some positive messages about TNBC.   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 6:53pm
Maureen,

Yes, getting the TNBC diagnosis can be quite shocking and a little overwhelming.  Check out the Resource link at the top of the screen for some helpful information.  Did you onc tell you what type of chemo you'll be getting?  Please ask questions or just vent.  We listen and understand what you're going through.

Have you had your Vitamin D level checked?  Most of us have extremely low levels upon diagnosis.


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 Maureen0424 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 7:35pm
Donna,

I haven't had my Vitamin D levels checked, but my onc told me I should take 2,000 mg per day.  I've been taking Vitamin D for years because my mother has severe osteoporis.  As far as chemo, the onc said I will get AC X 4, and then Taxol X 4.  She said I would get Neulasta shots the day after treatments, but I'm not sure if she meant just the first part, or for both.  My mind was spinning today, and I may have missed a thing or two.  I have an appointment on 4/30 with a nurse practitioner for a one-hour "cancer talk."  I just read about the benefits of baby aspirin, but it wasn't clear if we should wait until treatment is over.  One reason I was shocked at the TN diagnosis is because I'm going to be 62 next week, and I know this is more common in younger women.
DX 3/9/12, Stage 2b, 2.2cm & 1/9 nodes, Grade 3, TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 8:19pm
Dear Maureen
I got the exact same diagnoses as you on June 9, 2006.  I was 65 years old.  I had the exact same chemo as you except I was in a clinical trial and had gemzar as the trial drug with the 4 taxol treatments.  I did have a neulasta shot the day after every treatment.
 
Will your chemo be given every two weeks (dose dense) or every three weeks?   Mine was every two weeks and my trial protocol did not call for radiation.
 
Have you had any surgery yet?  If you are anticipating surgery right away you might hold off on the aspirin.
 
I tell you Maureen, I can feel your anxiety and 'spinning mind'... So can all the other girls here on the site.  Please keep posting, asking questions, sharing, venting... WE UNDERSTAND.
 
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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 8:24pm
Hi Cochise,
You are in good company here with several other men.   Do you have a triple negative breast cancer wife or friend?  If so, please share.
 
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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maureen0424 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 9:47pm
Hi Lillian,

I had a lumpectomy with 1/9 nodes last Monday, before I knew about TN.  My chemo will be dose dense, every 2 weeks, and I will have radiation after chemo.  My onc did say she might see about a trial.  So, aspirin is OK while on chemo and radiation? Thank you for being there, Lillian, and everyone else on this site.
DX 3/9/12, Stage 2b, 2.2cm & 1/9 nodes, Grade 3, TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2012 at 11:43pm
Hi Maureen.. (and all new to TNBC Foundation forum)

A bit about me.  I was ultimately diagnosed from a needle biopsy w/ 4 tissue samples due to a palpable lump which seemed to appear overnight back in July of last year.  From there I interpreted my own pathology report to find I was Triple Negative and all the implications that went with the diagnoses.  Through THAT research I found this site.  All my regular GYN was able to tell me was I had IBC, which represents the majority of breast cancers.  At that point he hadn't received the second page of my report, but I had. 

The rest of the footwork led me down a path of dismal website reports, studies that were frightening... and nothing I could really sink my teeth into.. until I found the forum.  Thank Goodness.   Everyone extended their hearts to me, while I was still dumbfounded-- in a stage of shock reflecting back.  The mere diagnoses significantly affected my ability to concentrate.    Sort of the opposite spectrum of PTSD.  Some days I was lucky to remember my own name.  I'd never heard of TNBC, as I imagine is the case with many newly diagnosed TNs.   Thru the help of this forum while simultaneously interviewing my GYN's referrals for oncologists and surgeons,  I knew "enough" to carry on a semi-intelligent conversation and have reasonable questions for these docs.  Remembering everything they said was another story.  I took another set of ears along with a tape recorder which proved to be invaluable.

It  took me a while to make a final decision on course of treatment.  There was too much to wrap my brain around back then.  It was overwhelming to put it mildly.

Sorry for all the ramble.  I'm glad you're here, but sorry about your diagnoses. This forum is rich with resources and people who totally understand and relate... when others may not. 

Everyone's case is so individual. Don't allow yourself be overwhelmed by negative you might see in research reports and general web information, like I was.  I learned quickly there is so much hope and the majority of TNs do very well.   Please do look around the resources sections and ask any questions which come to mind. 

Maureen- Seems every oncologist or institution has their own preferences and protocol as to what you can and can't take.  I would certainly check with you oncologist before taking aspirin while on chemo.. or anything you're unsure of.  I know I was banned from aspirin and all pain relievers during my own chemotherapy.  They didn't want me to take anything which might mask fever.  Among other OTC meds, I wasn't allowed any supplements classified as antioxidants.   I had chemo first, then surgery.  I knew I wanted a BMX- even before I learned I was BRCA+.

It's been quite a journey.  I hope finding the forum can make yours more fruitful, as it's done for me.  I feel fortunate to have made my way here early on... but it doesn't matter one bit.  The main thing is you're here now.  Allow us to help in any way possible.

Hugs,
Mindy 


Edited by mindy555 - Apr 18 2012 at 12:39am
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maureen0424 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 6:02am
Thanks so much for your post, Mindy.  I also had a lump that seemed to appear out of nowhere.  Seems to be pretty typical with TN.  I was one of those people who never went to doctors, and was thinking this thing had been growing for some time; but my onc said if I had a mammo 3 months ago, they probably wouldn't have caught it - that's how aggressive this is.  I'm also very glad I found this forum.  There is so much scary info out there.  I need to stay positive.  I won't take aspirin until I speak to the onc, and I'll ask her about other supplements - I already gave my list to the nurse.  In a discussion on another forum (breastcancer.org), I read that if you are TN and get through 2 years with no recurrence, your long-term prognosis is actually better than those with positive receptors.  Is this true?
DX 3/9/12, Stage 2b, 2.2cm & 1/9 nodes, Grade 3, TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 9:06am
Hello Again Maureen,
 
You and I are so similar in diagnoses.  The reason I did not have radiation was because I had a complete left mastectomy.  I re-read that you had a lumpectomy.  After a lumpectomy radiation is most always a part of treatment.
I must say that a lot of women who have mastectomies have radiation also.  In my case, it was not part of the protocol. 
I'm posting to offer you and otheres HOPE.  June 9th will make 6 years since my diagnoses.
 
All the information I have read says that at 5 years cancer free we catch-up with the positive receptor girls in respect to liklihood of recurrence.  I will say that after the 3rd and 4th year I began to breathe easier.  We have no guarantees, but we have lots of HOPE. 
 
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 - 11/2015-9 yrs NED
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