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Newbie14 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Newbie14 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 7:30pm
Ladies, so nice of you to reply! I will be 4 years out in July, Stage 1b, 4 A/C, 12 Taxol.
Bilateral mysectomy... my fear of reoccurrence is numbing...as you both know.
I am fine most days, but, terrified on others. There’s so MUCH doom and gloom attached to TNBC. I don’t know how to get past the fear of reoccurrence.
Thank you, so much for replying!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 10:47pm
9 yrs for me,,   stage IIIA/B  very aggressive... gave me a 20% chance of seeing 2014..  still in remission

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2018 at 1:05am
Here's a good thread of survivors that's recent. We have long term survivor pop in to say hey all the time!click here
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2018 at 9:06am
I just wanted to post that I was diagnosed at 59 years old TNBC Stage 3 C.  I had A/C every three weeks 4 times and taxol every week for 12 weeks.  Lumpectomy.....Radiation.  I am now almost 5 years from all the treatments and in June it will be 6 years from diagnosis.  I really do not think much about it anymore.  (Except when my toes nails decided to break off again!) I too, decided early on that worrying about this was not going to do a thing one way or the other.  As my onc said......don't look at statistics.....basically you have a 50/50 chance........it is either going to come back or not! So on that note I gave it up to God and I have never freaked out about it.  I did go to a hypnotist who gave free group sessions to Cancer patients and listened to his CD every night when I went to bed.......uplifting........peaceful.......and positive.  He felt strongly that your thoughts can affect the chemistry in your body.  So I have always tried to maintain a joyful and positive attitude which has served me well.  I was telling my mil who is 91 yesterday.........look at these beautiful snowflakes as she was complaining about the snow in April.......I said "You need to find the joy and beauty in everyday! - Yes its cold but don't the daffodils (there was a whole bunch together) look so pretty with the snow all around them."  She laughed and said "I need to be around you more you make me feel better!" LOL  Mission accomplished! Smile
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2018 at 11:15am
I've just been thru a recurrence after 9 years - don't let that scare you tho! What I learned is, having a brand new cancer after 3+ years is so rare there is no standard of care to treat it. They've done NO studies, no testing on how to treat it because there are no patients to test. My new friend here on the boards that also has a recurrence after 9 years and I are unicorns. The high risk of recurrence you hear so much about with our disease is the Same Cancer showing up, usually in the first 2 years, mostly somewhere other than breast tissue. TNBC is aggressive and fast growing, it does not lie around dormant for years, so if you've made it for 4 years cancer free your odds of recurrence are quite low. The exception to all of this is a BRCA positive patient that did not have a mastectomy the first time, but other than that you're statistically pretty dang safe at this point - congrats on a successful recovery!!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Newbie14 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2018 at 12:36pm
Kelly, you have a reoccurrence after 9 yrs.? That’s not unusual is it. What stage were you, if I may ask.
Thank you for your positive words!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2018 at 12:25pm
It's extremely unusual, very rare. I couldn't find another person that experienced it for a year and a half until Blair came here a little while ago.
I "sensed" it was back. I said I could feel it, but they found nothing on mammogram or ultrasound. My Very Experienced surgical oncologist said she'd learned to always trust the instincts of a survivor and ordered an MRI with contrast. My insurance said they wouldn't pay for it she said do it anyway, we'll sort out the payment. it showed right up, 2 thin areas side by side, total sizewise on the line of stage 1 & 2A..after biopsy confirmed insurance sent me a letter saying oops, we'll pay for that MRI now. When I saw my awesome, world famous MD Anderson oncologist for a second opinion and told him that story he said, "of course you knew, survivors always know." I wish I could describe why I knew, what I felt. ...I just knew it. After the negative mammogram & ultrasound I felt no relief, because I just KNEW it was wrong. That part was instinct - I also felt I was a goner, that it being back must mean I wouldn't survive this a second time - that part was emotion and fear and luckily wrong so far. The lessons I got from it were: You really are statistically very safe 2-4 years after the end of treatment if you don't have a genetic mutation. Trust your gut!!! With TNBC especially, see very experienced with TNBC oncologists, both medical and surgical. And lastly, GET A SECOND OPINION before doing any treatment!!!!! Always, without exception!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Newbie14 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2018 at 2:25pm
Kellyless,

I’m sorry, your going through TNBC, again!

Did you have a Braca mutation? Was your first round an early Stage?

Thank you, for replying!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PAGIRL65 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 7:30pm
Hello all,
I hope I'm in the right forum. My name is Jane and I'm a newbie! I'm 67. I'm a 19 month out BC survivor. Stage 1, lumpectomy, 2 nodes removed (clear). Four rounds chemo and 36 rounds radiation. Doing well. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 8:46pm
Hi Jane!  

Welcome and yes you are at the right place.  I hope you find lots of support here.  This community is filled with caring and loving members that will support you, answer your questions and just listen.  Glad you are doing well and a 19 month survivor.

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 cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 11:48am
Hello Jane it is very nice to meet you!
I am very happy you are doing so well post treatment
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Millsju Quote  Post ReplyReply Direct Link To This Post Posted: May 08 2018 at 3:25am
I am newly diagnosed with tnbc had lumpectomy on 5/2/2018 have to go back had another tumor on the edge of the margin. My question is I have not met with the oncologist yet I was just wondering what the average treatment time is?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 08 2018 at 8:04am
Hello and welcome Millsju,

The treatment time can be different for everyone depending on how long recovery time from surgery, if there are any healing issues, etc.  For chemo, most will get 4 treatments of A/C (Adriamycin and Cytoxin) 3 weeks apart and 12 weeks of Taxol (some will get it weekly or every 2 weeks).  Following chemo is radiation, and the time can vary - from 28 to 35 treatments or a shorter accelerated version.

Here's a good guide for patients to read through:


Chemo:




Edited by 123Donna - May 08 2018 at 8:06am
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 08 2018 at 9:04am
Dear Millsju,

Our wonderful Donna has given you a good welcome, as always.

You haven't mentioned genetic testing and while it is done very often these days, it is still missed at times. In my unprofessional view you should have that done immediately, as the results can impact your treatment plan.

If you do not have a Certified Genetic Counselor near you I can help with a referral who can talk to you on the phone and send a kit to you so that you can get tested quickly.

Just send me a PM, please, and I will respond quickly with my phone number and email.
I have helped many women on this site in the last 14 years since my daughter was diagnosed with TNBC at the age of 36. She is NED (No Evidence of Disease) and doing well. There will be no charge to you from me or my non-profit.

warmly,

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 Newbie14 Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2018 at 2:38pm
Ladies,

What have, any of you, been told about high reoccurrence time frame?
I see so many have reoccurrence even after 5 years?
Thanks❤️
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2018 at 10:26pm
I think what you see is that those of us that have not had reoccurences don't come on the site all that often.  I am 6 years from diagnosis and 5 years from treatment.  I had triple negative 3 C. 4.5 cm lump in left breast......3 lymph nodes in my underarm and both chest wall lymph nodes with cancer.  I had chemo first and was lucky enough to have PCR to the chemo.  I then had a lumpectomy and then radiation.  It was almost a whole year of treatment.  I have been told by all.......oncologist, radiologist, medical oncologist the chance of it coming back is slim and they all have given me the choice of coming back yearly or not.  I have chosen not to go back unless I see something that needs to be looked at.  I will get a mammogram yearly of course and closely monitor my health.  I count my blessings everyday. I wish for all those that are fighting this battle that their treatments work and you are NED.  
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2018 at 10:52am
Newbie,

This chart on recurrence rates was based on a study done a few years ago, but I think it's a good visual graph.


Analysis of pattern, time and risk factors influencing recurrence in triple-negative breast cancer patients.

The aim of the study was to assess the rate, pattern, and time of recurrence in patients with triple-negative breast cancer (TNBC) and to evaluate factors influencing recurrence and overall survival in this group of patients. Out of 2,534 consecutive breast cancer patients diagnosed between January 2005 and December 2006, 228 (9 %) were TNBC (ER/PR/HER2-negative). The clinicopathological characteristics were determined using descriptive statistics. The overall survival (OS) and disease-free survival (DFS) were calculated using the Kaplan-Meier method. The univariate and multivariate analyses were developed to identify factors influencing recurrence and survival in TNBC patients. After 6 years of observation, metastatic disease occurred in 35 % of all TNBC patients: 15 % in the brain, 14 % in the lungs, 11 % in the bones, 8 % in the liver, and 14 % had locoregional relapse. The highest risk of recurrence was during the first 3 years after primary treatment, and then, during the next 2 years of observation, it did not change. 6-year DFS and OS were 68 and 62 %, respectively. Factors influencing recurrence were tumor size and systemic adjuvant chemotherapy, while factors influencing overall survival were tumor size, nodal status, adjuvant/neoadjuvant treatment, and metastases in the brain, liver, and bones. Characteristic pattern of recurrence in time was revealed. The tumor size was responsible for recurrence despite lack of involvement of lymph nodes. Aggressive adjuvant/neoadjuvant treatment ordered in all clinical stages of TNBC (including N0) was factor responsible for avoiding local and distant relapse and prolonging overall survival.

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 Newbie14 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2018 at 1:06pm
MLindaG,

I will be 4 years out. I have a checkup coming in two and half weeks and am very scared. I just read so many women with reoccurrence’s, even early stages. I want to move forward and as I do I see something that deflates my hope.
Thanks, for replying.
Thank you also, 123Donna❤️

Edited by Newbie14 - Jun 01 2018 at 1:08pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tishabe Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2018 at 11:07am
Hello Everyone
I am 2 years out from TNBC and went for my mammogram on Friday, needed a follow up ultrasound.  Now I am scheduled for an MRI for a suspicious nodule on my other breast on Tuesday.  I can't even remember what the ultrasound doc said she saw, just that she was very concerned.  I can't even begin to describe how scared I am.  I have a great supportive husband and daughters but I can't tell them I am scared because I see in their faces they are too.  I just needed a place to talk with people who are in my shoes.  I wish you lovely people the best of luck! thanks for listening.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2018 at 9:02pm
Hi Tishabe,  I'm so sorry you are dealing with suspicious findings.  I hope they find you are still NED.  You've found a wonderful group that will be here for you no matter what.  Thanks for sharing your story.  Keep us posted on what you find out.

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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