RISK OF RECURRENCE AFTER 2 YRS? |
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mamawof4 
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Joined: Jan 14 2010 Location: Lebanon, Ohio Status: Offline Points: 49 |
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 Posted: Jun 29 2010 at 9:00pm |
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When do you start counting? After surgery or chemo. I get so confused.
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dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+
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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: Jun 29 2010 at 9:04pm |
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We've had this discussion before and I don't think there's a general consensus. I count the day of surgery. Some people count the day of dx, but to me the bc was still in me and the surgery date was when it was removed. Just my opinion.
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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denise07
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Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
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Posted: Jun 29 2010 at 9:10pm |
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My onc told me to start counting from the day of surgery.
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mamawof4
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Joined: Jan 14 2010 Location: Lebanon, Ohio Status: Offline Points: 49 |
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Posted: Jun 29 2010 at 9:53pm |
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Thanks now I know how to count it. I had my surgery May 15, 2009. And so far so go.
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dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Jun 29 2010 at 10:22pm |
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Hi Bonnie,
Thanks for offering the info on the parp inhibitors. I would be very interested in knowing
if your daughter is in a clinical trial and which one. From what I have read and heard at
the onc's office the parp meds seem to be what the excitement is about for us. If the
pharmaceutical companies would just hurry up and get it to market.
Good luck to Ashley in her treatment.
Hummie
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Jun 30 2010 at 1:25am |
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I personally think the day of diagnosis should be the starting date..and if others feel differently that is totally fine with me.
more and more women are getting neoadjuvant therapy....they are dx with TNBC...normally a large tumor and then they have treatment to see if the chemo works and shrinks the tumor...hopefully pCR...if that is e.g a two month process that starts one month after diagnosis that's three months since treatment started and 9 months later (either post-lumpectomy or mastecomy/ies) you are one year out... anyhow that's how one oncologist explained and again the printed word on a message board can be taken the wrong way..Donna and all, I mean no harm...just one way to look at things... 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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Bonnie
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Joined: Sep 29 2009 Location: St. Augustine, FL Status: Offline Points: 137 |
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Posted: Jun 30 2010 at 7:59am |
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Hummie: Ashley is not in a clinical trial, but was blessed and fortunate enough to receive the BSI-201 PARP Inhibitor (Iniparib) from Bi-Par on a compassionate care basis. Ashley has had to miss multiple chemo treatments due to low platelets and low WBC counts, but the onc said it is just as important to get the PARP into her. She's able to get the parp on those days, just not chemo. I too hope that the FDA gets the PARP Inhibitors approved quickly so all those in need can get it.
Bonnie
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Bonnie - Daughter Ashley dx TN 8/09 @ 22; St3, BRCA1/2-; AC&Ixempra done 2/10; mets to lung 3/10; G/C 3/10; PARP 6/10; sternum mets 9/10; NK012 failed; mets to liver, spine, kidney; Avastin/Xeloda
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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: Jun 30 2010 at 8:11am |
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Steve,
I agree with your point also. Some of us have surgery first and others neoadjuvant treatment. We're all survivors! 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: Jun 30 2010 at 10:24am |
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Bonnie,
Thank you very much for sharing with me Ashley's message. Please tell her I am
rooting her on, and that the PARPs are THE best from everything I've read and
from one of the docs I've discussed it with a lot. Good for her and good for
Bi-Par!!!!!!!!!!! Tell Ashley we have some things in common, also: stage III,
nodes involved. I haven't started chemo yet, go for the mediport tomorrow and
them shortly will start ACT. But, as I believe strongly PARPS are the way for us!!!!
God bless Bonnie and Ashley.
Love,
Hummie
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scared
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Joined: Nov 09 2009 Location: Seattle Status: Offline Points: 224 |
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Posted: Jun 30 2010 at 10:30am |
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Sorry I have not been around for awhile, but I'll add my two cents in in regards to when time starts counting for the anniversary date of cancer. I asked this of our oncologist and she said it should be counted from the time of diagnosis.
Why would you do it from the surgery date, not everyone gets surgery...right?
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Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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hummingbird10
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Posted: Jun 30 2010 at 10:31am |
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Steve,
I agree with you. The day of diagnosis.
My onc briefly mentionned 3 months of neo-adjuvant and then surgery
OR mastectomy in 2 weeks. You can guess what I chose. I was
totally scared---I jumped at the total surgery--I wanted to take
no chances at a breast (that had "failed" me)---that's not everyone's
decision, but it worked for me. I couldn't sit around for 3 more mos.
thinking about this tumor growing bigger inside me even with neo-adj.
The tumor ended up to be 3 INCHES! I think I made the right decision.
The did get clean margins so that was one good thing. Ax. dissection with
nodes involved and 17 total removed----that has been the most painful part.
Hummie
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LauraT
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Joined: May 05 2010 Location: Georgia Status: Offline Points: 739 |
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Posted: Jun 30 2010 at 11:43am |
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I was told that I had dense breast tissue for years. I was never told that I had a higher risk of cancer, but was told that it would be more difficult to detect by mammogram. I found my tumor in July after having a normal mammogram in March.
Laura |
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DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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hummingbird10
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Posted: Jun 30 2010 at 10:00pm |
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Bonnie,
Did Ashley get her treatment in Florida (saw you are in St. Augustine)?
Was the parp part of it put in the IV ?
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Frenchie
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Joined: Nov 30 2008 Status: Offline Points: 57 |
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Posted: Jul 01 2010 at 4:04am |
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Guys, is this 2 years from finishing chemo, or 2 years from diagnosis?
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Age 39 Dx Nov 2008 2cm 2/13 nodes - 4 x AC 4 x Taxol 2 Weekly - 25 rads. Avastin (trial).
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SagePatientAdvocates
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Posted: Jul 01 2010 at 4:10am |
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Hello Frenchie,
2 years from diagnosis, in my opinion... please send me a PM or email to let me know how you are doing... my apologies for not writing...was at a loss for words.. all the best, 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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Bonnie
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Joined: Sep 29 2009 Location: St. Augustine, FL Status: Offline Points: 137 |
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Posted: Jul 01 2010 at 7:04am |
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Hummie: Yes. We live in St. Augustine, but Ashley is getting all of her treatments in Jacksonville, FL. And yes, the parp was administered via IV.
Bonnie
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Bonnie - Daughter Ashley dx TN 8/09 @ 22; St3, BRCA1/2-; AC&Ixempra done 2/10; mets to lung 3/10; G/C 3/10; PARP 6/10; sternum mets 9/10; NK012 failed; mets to liver, spine, kidney; Avastin/Xeloda
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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: Jul 01 2010 at 8:58am |
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Okay, my two cents worth...I agree with Steve...count from diagnosis...which is what I do...now what happens when you have a recurrence? I guess I'm still surviving
 ...I guess I answered my own question.
Also, the dense breast issue....I have fribrocystic breasts...oops...breast  and my surgeon told me that my tumor was so in-bedded that I wouldn't have noticed it myself until it got much much bigger. So thank you mammogram!
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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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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Jul 01 2010 at 10:01am |
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Carol, when someone has a local recurrence, her clock starts over. So you would count starting 7/09. (not that it matters!)
love, Denise **btw research shows that women with dense breasts are more likely to get bc. I think these results are fairly recent. |
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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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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jul 01 2010 at 11:28am |
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Denise,
Both me and my friend had dense breasts and we both got tnbc. Interesting and the fact we grew up together and we both got this horrible disease within 14 months of each other. Makes me wonder about the environmental connection. 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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The Texas Woman
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Joined: Sep 07 2009 Location: Bryan Texas Status: Offline Points: 74 |
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Posted: Jul 07 2010 at 6:41pm |
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I just got through with my six weeks of radiation at MDAnderson yesterday and I asked my med onc, my surgeon, and my rad onc when to start counting. They ALL said from the date of surgery. Now if you didn't have surgery, who knows but they were all in agreement. Wish it was date of diagnosis because Friday is my cancerversary and I'd be a year out instead of 3 1/2 months!
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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