RISK OF RECURRENCE AFTER 2 YRS? |
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zoomommy2 
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Joined: Sep 26 2009 Location: Denver, CO Status: Offline Points: 1356 |
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 Posted: Aug 01 2010 at 10:14pm |
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Pam,
That's what my oncologist said. He said he's seen too many false positives and false negatives to do them. He doesn't want to give people good or bad news when it isn't warranted. I still wish he'd do something besides having me wait for symptoms.
Lee in Denver
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dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Aug 01 2010 at 11:06pm |
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Yes i was 10 years in between dx's. my firs BC dx was ER+ and PR+, the 2nd one is TN.... both in the same breast, but two different BC's.
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DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Julia
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Joined: Jun 14 2009 Status: Offline Points: 156 |
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Posted: Aug 02 2010 at 4:26am |
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I've met one other TNBCer - at a Look Good Feel Better event. She came up to me and said "I hear you've got triple-negative, too. You don't meet many of us - we're all dead!" Fortunately we both found that hilarious and had a great time together.
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Diag. 3/09 TNBC, IBC, 55mm.
4 rounds AC, 4 weekly Paclitaxol. Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads. 2 more rounds of A/C, 6 months low-dose CMF. |
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Aug 02 2010 at 10:18am |
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Donna,
It is very strange your friend would get it also within a short period of time.
I, too, believe "environment" has a lot to do with it. There is so much to
do in that arena it's hard to know where to start. We can continue to
stay as close to natural foods and products and avoid any for of
contaminant is my guess.
Take care
 ---Hummingbirds on the attack of TNBCHummie
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Aug 02 2010 at 10:22am |
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Julia,
I'm scheduled for one of those event soon. I'll see it I meet anyone.
Great comment!
Will let you know if I ever find one. Should I wear a sign on my back?
Hummie
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Carol (Tenn)
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Joined: Aug 06 2009 Location: Paris,Tennessee Status: Offline Points: 2707 |
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Posted: Aug 02 2010 at 11:22am |
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I live in a small town and I asked both my surgeon and onc if they had any other TNbc patients. They both said yes, but couldn't divulge their identity due to privacy concerns...but I like the idea of the sign on your back..
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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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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Aug 02 2010 at 11:32am |
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I vote for the sign, you just may make someone's day!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Aug 02 2010 at 11:44am |
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Hummie,
It is more common to have the marker's done when one has metastatic disease to see how they are doing according to one of those links I gave you.
No I don't plan on going to Mayo, too far away.
Weight and chemo.. http://www.chemocare.com/managing/weight_changes.asp
Have a good one, Edited by trip2 - Aug 02 2010 at 11:45am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Aug 02 2010 at 12:18pm |
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Dear Eileen and bjoangtx,
I am not a doctor so please don't rely on anything I say..this is a conversation with your oncologist and just as oncologists may recommend various chemo protocols that also have different views on markers... In general, I think it is clear that no marker is perfect and some are very imperfect..Nevertheless, it is my impression that most oncologists/physicians doing surveillance still recommend using them because at times, they work especially if there is a profound upward trend..but, again, even with that trend, at times, the markers are still not efficient...very frustrating..I personally am doing surveillance for pancreatic cancer and use the CA19-9 marker...again, often inaccurate I have been told but especially if it goes crazy on the up side it would perhaps dictate diagnostic tests. my daughter is still doing surveillance, six years after her breast surgery...it is now done on an annual basis but markers are still used..markers for gynecologic cancer as well even thogh she had surgery...she is still at risk for primary peritoneal cancer and even though CA-125 is a lousy marker most doctors are still using it..if anyone is doing surveillance for ovarian cancer recurrence you might ask your gynecologist or gyn/oncologist about HE4 test..Steve |
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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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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Aug 02 2010 at 12:25pm |
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Steve I want to congratulate your daughter, 6 years, how wonderful!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Aug 02 2010 at 12:29pm |
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Dear Pam,
thank you so much, dear friend...I will be seeing her in NY next week...can't wait.. hugs, Steve
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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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Lorene
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Joined: Jul 10 2010 Location: Alabama Status: Offline Points: 211 |
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Posted: Aug 02 2010 at 12:34pm |
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zoomommy2,
I guess I missed previous discussions, but what tests was your onc. speaking of there being too many false positives and false negatives? I don't remember your story. What symptoms are you watching out for? I'm waiting to have a post-mammogram a month after my core needle biopsy. Reading about the mistakes Drs. make raises the anxiety level!
Lorene
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dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Aug 02 2010 at 2:29pm |
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Steve,
My onc agrees with what you said. Tumor markers aren't perfect but they will show a trend. She monitors mine and last November when the CA 27.29 spiked, they did a CT scan. It's not perfect but does give a trend and if the numbers change drastically, it may mean more surveillance and testing. My df, who had tnbc, now has peritonneal cancer. Her new onc is monitoring the effectiveness of the chemo treatment with the tumor marker, CA 125. Donna |
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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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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Aug 02 2010 at 7:17pm |
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Hi All,
I have my sign ready for tomorrow. Can't wait to wear it--
pink with bold lettering ----will let you guys know if anyone
says they are a "triple."
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zoomommy2
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Joined: Sep 26 2009 Location: Denver, CO Status: Offline Points: 1356 |
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Posted: Aug 03 2010 at 2:23pm |
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Lorene,
My oncologist doesn't do tumor markers for breast cancer because he has seen too many false positives and false negatives to have too much faith in them. He said he doesn't want to give women the wrong information based on them. I don't really know what "symptoms" I'm supposed to wait for. I felt fine before I discovered a golf ball size tumor in my left breast. Of course I do breast exams myself and every doctor that sees me does, too. I try not to concern myself about the everyday aches and pains since chemo. I see the onc every 3 months for 2 years. It disturbed me when he said that once you've had a mastectomy and chemo that your relapse rate isn't all that different from non TNBC!
Lee in Denver
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dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Aug 03 2010 at 3:27pm |
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Hi all,
The sign WORKED!! Met TWO triples, can you believe it!!!
It was great. I think they were as amazed as I was.
More later. Just came back from chemo.
Hummingbird10
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zoomommy2
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Joined: Sep 26 2009 Location: Denver, CO Status: Offline Points: 1356 |
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Posted: Aug 03 2010 at 5:56pm |
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Hummingbird,
I'm sure they were as excited to find you as you found them!
Lee in Denver
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dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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The Texas Woman
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Joined: Sep 07 2009 Location: Bryan Texas Status: Offline Points: 74 |
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Posted: Aug 03 2010 at 6:35pm |
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The mother of a friend of my daughter's has just been diagnosed with inflammatory TNBC.
In June we even had an obit where TNBC was mentioned. It was shocking to see in that context for my family and me but it does get the word out about how deadly this disease is and how badly we need a cure. Cher |
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Dx: 7/09 TN IDC Stage llB, T2, N1, Grade 3 and associated DCIS, BRCA Neg, Taxol x 12, FAC x 4, left mastectomy March 2010
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Aug 03 2010 at 7:28pm |
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I was just involved in a photoshoot for my local Komen Affiliate which is on billboards at trainstations and I made a point of mentioning my TN status. That has been my soap box for the last 18 months, and I will not step off of it. Heres the link if you are interested, I am at the end (alphabetical by first name).
I was dx a week after a neighbor and within the last 2 years there have been 12 of us dx in my neighborhood and another close neighborhood. We are all under 50, 4 of us are TN. 2 of us are BRCA+. Very creepy.
I also have always been told I had dense fibrocystic breasts, but never that it caused any risk other than its difficult to see anything on a mammo.
Aside from the CA 125 (because of my BRCA+ status) I have never had a tumor marker test. I see my onc every 6 months and she tells me all my aches are not cancer related, and that is it for me. They tell me pain would need to be "persistant, profound, and worsening" before they will be alarmed. So I try to use that guide to keep myself sane. I am not always successful.
Best wishes to everyone.
XO
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Aug 05 2010 at 7:37pm |
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Hummie, you are kidding, two? That is awesome, how exciting for the 3 of you.
The sign worked!
Take it easy and listen to your body. If you feel tired be sure and lay down and drink
plenty of water.
Hope you do well after you infusion.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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