Go To Main TNBC Website


  New Posts New Posts RSS Feed - Welcome From TNBC Foundation
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Welcome From TNBC Foundation

 Post Reply Post Reply Page  <1 324325326
Author
Newbie14 View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 06 2016
Location: NE
Status: Offline
Points: 39
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!
Back to Top
Autumn10182001 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 18 2009
Location: Highland, NY
Status: Offline
Points: 557
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
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 917
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!
Back to Top
MLindaG View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 16 2013
Location: Pittsburgh PA
Status: Offline
Points: 378
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.
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 917
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!
Back to Top
Newbie14 View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 06 2016
Location: NE
Status: Offline
Points: 39
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!
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 917
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!
Back to Top
Newbie14 View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 06 2016
Location: NE
Status: Offline
Points: 39
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!
Back to Top
PAGIRL65 View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 24 2018
Location: Pennsylvania
Status: Offline
Points: 7
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. 


Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12806
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

Back to Top
cheeks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 14 2011
Location: North Carolina
Status: Offline
Points: 652
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.
Back to Top
Millsju View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2018
Location: Idaho
Status: Offline
Points: 1
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?
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12806
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

Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4454
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
Back to Top
 Post Reply Post Reply Page  <1 324325326
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.