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Meg3352 View Drop Down
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    Posted: Jan 04 2012 at 12:47pm
I just came from my surgeon's office for my post op from a modified radical mastectomy I had on Thurs.. She told me I was stage 3c with 15/15 positive nodes. She pretty much told me it's coming back and to figure out how I want to live the rest of my life..I am 34, have only been married 2 years, no children. I can't stop crying, I have no hope now:(
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vikkie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vikkie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 1:48pm

Dear Meg,

I will be praying for you, please know that YOU HAVE HOPE IN CHRIST JESUS! No matter what the doctors say, no matter what the pathology reports reveal, you have to summon all courage at this time and trust in the LORD, because he will make way for you where there seems to be no way, he will do miraculous things in your life, your life is NOT over yet until GOD says it's over! Only BELIEVE the report of the LORD because your life (and mine) is in his MIGHTY HANDS!!
 
Best Wishes,
 
Vikkie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 2:21pm
Meg.
   The answer is NO. No, to your surgeon's answer to your situation is not to pack your life's bags.
Instead, the answer is, now is the time to go back to your oncologist and say she/he needs to do a better job.
   Now is the time to throw the kitchen sink at all aspects of this. Now is the time to get a 2nd opinion. Now is the time to get connected with a good Clinical Trial (a phase III if possible). Now is the time to count your positives, gather your focus strengths and make yourself into a fighting warrior.
   I have a wee bit of experience in this, more than I ever bargained for, and I can tell you that it ain't over til it's over. You have today and many days to follow and there are better treatments than give up.
   So pick yourself up, dust off the hellish feelings you're having of abject fear, tell yourself you'll cry later, breathe, and pick up the phone to call the oncologist and demand that he/she point you in the right direction for an all out fight. The fight is yours. No one can take that away from you, not even cancer.
Mainy
 


Edited by mainsailset - Jan 05 2012 at 10:35am
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 3:18pm
Meg,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

Please listen to Mainy's very wise advice.  It's OK to cry right now, but then you need to pick yourself up, dust yourself off, pull on your big girl britches and get ready to fight this with all you've got.  It's either fight or give up.  I bet you're the type of person that's going to fight the good fight.

We have a very long term survivor, Rena.  Here's one of her posts:
Originally posted by rena rena wrote:

Hi Tracy. First, I have to say that I was diagnosed in 1986, before the HER test was available. But my tumor was ER/PR-negative, and my oncologist says that I fit the profile for triple negative (diagnosed at age 37, aggressive tumor), but of course I can never be 100-percent certain.  Many years later, I tested positive for BRCA2. This is the first time I've heard that the combination is actually rare. I know that we hear more about BRCA1 and triple negative.  At any rate, I had 22 positive lymph nodes, and I will soon be a 24-year survivor. I wish you the best. Take care. Rena

Rena doesn't post much anymore.  She posted the above in June 2010.  As you can see, she's a very long term survivor.  She had 22 positive nodes and took chemo for a year.  I look towards her as a beacon of hope for all of us.

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 krisa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 3:19pm
I agree, get some other opinions. I know a woman who had 19 nodes positive and that was 35 years ago. Back then , she had a mastectomy and a year of chemo. She now counsels women with breast cancer. Have you had chemo?
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Meg3352 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meg3352 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 3:26pm
Thanks ladies. Yes I had 11 weeks of taxol to find out it wasn't working and then 4 AC to which there was some response. I just had my mastectomy and next is Rads. I just cant believe that Dr's can make you feel that there is NO hope. Why the hell go on then? I am so mad.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 3:28pm
Meg,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

One recommendation right now is to get yourself ready for a second (or third) opinion as soon as possible.  Can you get yourself to an NCCN facility?  Here's a link to their locations:


Is Dana-Farber close to you?

What about MS-KCC?

Also, please consider a clinical trial.  Clinical trials provide us with the most current research in TNBC and provides excellent monitoring.  Here's a list of clinical trials that are phase III or higher.  


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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Meg3352 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meg3352 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 3:31pm
Thank you so much, I actually go to a Dana Farber near Boston. I will get right on this.. Thank you so much, God Bless you:)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 3:39pm
Hi Meg,
It is not the place of a surgeon to tell you that. The surgeon is the technician. What has your oncologist suggested? More chemo? There are other drugs and treatments to try, so don't give up hope, please. Like the ladies above have said there are survivors out there that have had lots of nodes involved and doing great years after treatment. Remember that. 

And you know, we all have to figure out how we want to live the rest of our life - but that could mean another 50 years for you. Last I heard surgeons don't wear a crystal ball around their neck.

Sandra
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 4:55pm
Taxol does not work for everyone and in some cases the taxol will help the cancer to grow. There are other chemos available such as a carboplatin.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 5:03pm
Meg thats so wrong for a medical profesional to practically put date stamp on you like that. Very negative.
Hope u get better outcome with someone else. Cutters are not the be all of this disease.
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 5:54pm
Meg, they are not God.  Nobody knows how things will play out for any of us.  Women on here with great prognoses have recurred, and those with terrible prognoses have not.    Having positive nodes after chemo is certainly not a reason to do the jig, but our futures are unknown.  There is always hope.  Plus, you can do something about this *now*.  There are trials out there for women in exactly your position, to try and prevent recurrence. I agree with Donna and others that it's time to get second and third opinions and to find out what your options are.  One is certainly to live well and hope for the best.  Others are to join the new clinical trials for women with significant residual disease after neoadjuvant chemo.   If you do the latter, I'd recommend choosing one with a platinum drug as part of the regimen, as women who are resistant to anthracyclines and taxanes might very well be sensitive to platinum drugs like carboplatin.  Do you know your BRCA status?  (Do you have first degree relatives who have had premenopausal breast or/and ovarian cancer?)   If you carry a BRCA mutation you could try carboplatin and a PARP inhibitor like Olaparib or ABT-888.  Those work very well for BRCA mutation carriers and could mop up any residual cancer in your body.

No matter what, we are here for you.

Much 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 (0) Thanks(0)   Quote rmichaels Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 6:16pm
Meg3352
Surgeons know how to cut stuff out but they don't know about oncology. 
I call on plastics and Reconn docs all day long.  They have no business giving you that type of
"diagnosis" and have no real information to back that statement up.
As I have said on other posts - My Mom is stage 4 with Mets on the liver.  She has been doing Taxol and Carboplatin for about 9 weeks now.  All 3 tumors are responding, shrinking and her tumor markers are normal.  She is 59 and went from Stage 2b to Stage 4 in about 38 days.  Yes, this cancer moves fast and is aggresive but dialing in the right cocktail of chemo is essential and worth working towards.  There are lots of stage 4 people walking around living life to the fullest.
I'm 34 also...you have so much to live for.  You can do this!!!
-Rachel.
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meg3352 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 9:46pm
Thanks so much for all your comments ladies, you have no idea ( actually I'm sure you do) how nice it is to talk to people who know what I am feeling. I am trying to relax and get some sleep, I hate when my mind keeps racing.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2012 at 11:20pm
What a great group of warriors, eh?   You all are major inspiration. 

Go after it Meg.  There's so much out there for you.   You get to be in the driver's seat.  Not a surgeon who really knows nothing about you...  and one with a negative attitude to boot.
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 rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 7:39am
Hi Meg,
I'm on one of the clinical trials that the above are talking about.  I will include the link below.  Everyone gets Cisplatin, which is a cousin to Carboplatin.  The trial is a phase II and is for TN that have residual disease after neo-adjuvant chemo.  You might look into this one or give it to whoever you see.  I am in the maintanence phase where I get the PARP every week.
Nita
 
Here's the link to your clinical trial:

http://www.clinicaltrials.gov/ct2/show/NCT01074970?term=BRE09-146&rank=1
PARP Inhibition for Triple Negative Breast Cancer (ER-/PR-/HER2-)With BRCA1/2 Mutations
This study is currently recruiting participants.
Verified on August 2011 by Hoosier Oncology Group
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 debB Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 8:54am
Dear Meg,

It makes me mad that you had this response. NO one has the right to make you feel this way! The crying, the fear, the anger...all of those go hand in hand with this stinking diagnosis, and we are all certainly entitled to those feelings, but like someone else said, no date stamp and no crystal ball. Just remember, theses docs put their pants on one leg at a time, fight with their spouses, and take out the trash just like the rest of us do. They are not all knowing and some of them just plain don't have enough experience with TNBC to make the call.

I would strongly agree to get that next opinion and find out what you need to do to be as aggressive as you can be. I am going to be starting the same trial Nita is in when I am done with rads and it sounds like maybe a good one to consider, especially since you didn't respond well to the other drugs. The platins and the possibility of a PARP could be good!

Working through the system can be a pain, but you came to the right place! Go get 'em!
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 8:56am
Dear Meg,

I am very sorry you received such difficult news.

I agree that you should get a second opinion from a Breast Medical Oncologist. It may be politically difficult for you to see another physician at Dana Farber because you are being seen there already. The two people at Dana Farber, in Boston, I suggest you see are Drs Eric Winer or Ann Partridge. But again, I am not sure it would be feasible. I assume (always dangerous to do) that you have been tested for tne BRCA mutation. You should have been advised to see a Certified Genetic Counselor and been tested.

I will send you my contact info and we can talk about this if you wish..

If you have good inusurance coverage and the energy to make a trip I would also suggest going to MD Anderson Cancer Center in Houston or Memorial Sloan-Kettering Cancer Center in NYC. Specifically at MDACC I would try to see Dr. Ana Maria Gonzalez-Angulo and at MSKCC I would try to see Dr. Tiffany Traina. They are both TNBC savvy and while neither has a ‘magic wand' perhaps they have some suggestions that may help you. I would try to see what their advice is and that advice may include a clinical trial. I can try to help you get an appointment with both/either physicians/physician. The reason I am mentioning multiple institutions is because, often, different cancer centers have different clinical trials that are only available at that institution.

Dr. Eric Winer

http://doctors.dana-farber.org/directory/profile.asp?pict_id=0000262

Dr. Ann Partridge

http://doctors.dana-farber.org/directory/profile.asp?pict_id=0000306

Dr. Ana Maria Gonzalez-Angulo


Here are some links-

Dr. Traina


I am not a medical professional and will never give you medical advice but I agree with those above who suggest you should get an opinion from a Breast Medical Oncologist in addition to a Breast Surgical Oncologist.

good luck to you,

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 christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 10:41am
Meg,
I'm so sorry.  No one can predict the future for any of us.  I also had a limited response to neoadjuvant chemo and am in a clinical trial now with additional chemo. I never realized until recently that Lance Armstrong was Stage 4 at diagnosis - the cancer had already spread.  He took control of his treatment, and I believe he also traveled for second opinions, etc.  I agree strongly with what everyone has said here about getting a second opinion.  I ended up with 3 opinions from oncologists - and that was after my local oncologist had consulted with other oncologists out of state at Emory.  I traveled out of state for the third oncologist opinion.  If I had had strongly estrogen positive grade one cancer I would not have gotten other advice, but because the options are more limited for triple negatives, it is very important to get in touch with those who have handled many, many cases of it and/or specialize in it.  Try to keep your spirits up day by day. I use every resource I can to help with that. I'm on the internet chatting here or on other support sites; I go see the free counselor at my hospital and practice guided imagery and relaxation with her; and I talk to my sister who is an estrogen positive 3C cancer survivor who had 10 of 12 nodes positive at the time of surgery 5 years ago.  This site has been a tremendous resource for me both in support and keeping me up to date on research.


Edited by christina1961 - Jan 05 2012 at 10:44am
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KarenC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 10:51am
Hi Meg, I am glad you are looking into other options. I know what it feels like to get the sorrowful looks from doctors and it really robs your spirit of hope. I have to dig deep to feel like living after I was told to expect a recurrence, but I do it every day. I was in a Gemzar/Carboplatin /parp trial April to June 2011. During the trial I tested BRACA neg. After the trial they found that patients who were BRACA pos responded better than BRACA neg pts to that chemo combination, as Denise said. I had a double mastectomy with residual nodes ( but showed some response to the chemo) and just finished 12 weeks of Taxol and 4 cycle of Dose Dense Adriamycin/Cytoxin. Starting Rads with Xeloda in two weeks. The doctors at Stanford and Kaiser are starting to give additional chemo after mastectomies to patients with residual cancer who had chemo before surgery (neoadjuvant). The usual standard of care was not to give more chemo after neoadjuvant chemo, but my cancer coordinator said this has changed in their practice. I will be getting Xeloda pills on radiation days per the Stanford onc who said this drug makes the cancer cells more receptable to radiation. Hang in there, you have a whole group of supporters cheering you on! Karen
2/25/11 BX Lft SNode/TN.Trial of Gemzar/Carb/Parp 3/31-6/31.BMX
7/11.Clear mrgns,6/30 nodes.TaxolX12,DD A/CX4 done1/3/12.25 Rads/Xeloda/bolus pad done 2/28/12.PET-7/12

BRCA-Ki6720%.Stg111a,gr3,RCB3
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