Go To Main TNBC Website


  New Posts New Posts RSS Feed - New with Chemo question
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

New with Chemo question

 Post Reply Post Reply Page  <12
Author
Katdoll View Drop Down
Senior Member
Senior Member
Avatar

Joined: Mar 13 2012
Location: WA
Status: Offline
Points: 214
Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Sep 24 2016 at 11:59pm
Doctors should be candid, but for a doctor to say someone has the worst diagnosis possible is not at all helpful and just plain insensitive. Dawn, I am sorry that happened to you. I am glad you posted your experience, and if you were feeling scared or beat down from what your doctor said, I hope our responses have added hope and confidence. There are so many women here who have beat TNBC or are living many years with TNBC. There are multiple long term survivors of TNBC in my extended family. It definitely is not the worst diagnosis possible.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
Back to Top
Tulips View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 04 2015
Location: RI
Status: Offline
Points: 377
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2016 at 5:08pm
Yes, Dawn, I hope my tone didn't come across as scolding, but more hopeful.  I think your surgeon's comments must have been terrifying, and on top of that, I think he/she was off-base, too.  I hope you are getting to a place where you are getting more comfortable with your diagnosis, given that you are already a couple of years out--your prognosis continues to improve the more time passes!

I wonder if someday you might talk to your surgeon and remind him/her of what they said and how that affected you.  Your surgeon might learn to be more careful in their wording for future patients if they really understood the impact their words have!
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
Back to Top
MayMay View Drop Down
Newbie
Newbie
Avatar

Joined: Sep 29 2016
Location: MS
Status: Offline
Points: 24
Post Options Post Options   Thanks (1) Thanks(1)   Quote MayMay Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 5:47pm
My 9 year diagnosis anniversary is next Month.. October 11th! I had 2 tumors right breast and at least 4 nodes positive. I had 4 months of chemo and afterwards double mastectomies and then radiation to my entire left chest wall. I have had multiple reconstruction surgeries. I came back to this site because I remember 9 year ago being SO scared by what I read and at that time there just weren't very many women saying "I am a long term survivor" I began reading this thread and just thought maybe I should tell anyone that's out there that that there is hope! I am healthy and happy and living life to the fullest. There is light at the end of this long dark tunnel! I remember how I thought "I'll never feel good again" but guess what.... You will! I am 38 years old and was 29 when diagnosed! I had 1 year old twin boys and now they are 10my daughters were 10 and 13 at the time now they are both all grown up. I have my first grandchild on the way he is due in a couple of weeks! God what a joyous blessing that is that I would have never foreseen 9 years ago. Bless you all and keep encouraged! 😘
Back to Top
AmyL View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 21 2016
Location: Colorado
Status: Offline
Points: 237
Post Options Post Options   Thanks (2) Thanks(2)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 11:20pm
MayMay,

Thanks for the absolutely uplifting message of hope. It's so great to hear from a long term survivor and to remember that it's all worth it in the end! Congrats on the new grand baby and for your 11 years.

Amy
Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
Back to Top
Jacklin View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 26 2015
Location: Canada
Status: Offline
Points: 556
Post Options Post Options   Thanks (2) Thanks(2)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2016 at 6:36pm
Congratulations MayMay!! How wonderful to hear how well you're doing, so glad you came and posted. Great encouragement for me while I'm in the middle of active treatment. Aren't grandchildren the best? It's such a wonderful time in my life and I love them so much. Am looking forward to being back to my normal energy levels so I can really enjoy every moment with them.

Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
Back to Top
Penny View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 28 2016
Location: Sacramento
Status: Offline
Points: 37
Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2017 at 12:22am
Thank goodness you wrote what you did.  I have just been dx within the last month and have had a lumpectomy with node removal (came back .6cm with zero node involvement).  I just got my port put in on Monday 1/9 and am heading into chemo on the 23rd of January.  I felt relieved to get my surgical path results of such a small tumor (MO said early detection for sure and if it was .5cm chemo would be a discussion) but have been reading and don't know if I should be relieved at this point.  My MO says I received the best results possible and he doesn't give percentages of survival but is really not concerned at all.  I am so confused.  He order 4 cycles of CT (no A) and then radiation.  I have read TN should get ACT.  I called their office and the nurse checked with him and said, no the doctor said just CT.  This is all very confusing.  Does this sound right?  My PCP is of no help and I tried to get into another oncologist for a second opinion and no one could take me for 6 weeks.  Any advice is appreciated.

Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1 Grade A, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC

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

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12383
Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2017 at 8:03am
Penny,

It's not uncommon for an onc to order C/T chemo (without the A) for small tumors like yours.  The NCCN guidelines for TNBC says to consider chemo if tumor is 0.5 cm or larger.


Chemo regimens:


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
julesd3611 View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 17 2017
Location: NC
Status: Offline
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote julesd3611 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2017 at 4:14pm
Hi, I just wanted to share that I am an 11 year survivor of TNBC!  I did 6 ACT (taxotere) and 50 rounds of radiation.  No issues, no recurrence and doing really well.  My Onc was very aggressive and we partnered together to win the battle!  I go every year for a complete check up.  Everyone is different but I believe that due to the aggressiveness of the cancer and the aggressiveness of my treatment, it has given me these beautiful 11 years!  I hope that helps some of you see that TNBC is not the death sentence it has been called.  Be diligent with your care during treatment.  Take super great care of yourself!  I made sure to be so careful so that I didn't get sick and delay my treatments. 
Love, prayers, hope and strength to all that are in the midst of this battle.  I'm not a Dr. but I'd be glad to support or help anyone through this very emotional roller coaster! 

With hope and Love,
Julia
Back to Top
Katdoll View Drop Down
Senior Member
Senior Member
Avatar

Joined: Mar 13 2012
Location: WA
Status: Offline
Points: 214
Post Options Post Options   Thanks (1) Thanks(1)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2017 at 5:53pm
Penny, I have a friend who had a 0.6 TNBC IDC, with no node involvement, and her medical team said exactly what yours did - that at 0.5 it would be a "discussion" and at O.6 C/T was the appropriate choice for chemo. So that's what she did. She opted for mastectomy due to have a BRCA mutation, so radiation was not needed. She was treated at one of the top 5 cancer centers in the country. She's many years down the road with no recurrence. I hope that's reassuring!
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
Back to Top
Rocky View Drop Down
Newbie
Newbie
Avatar

Joined: Sep 03 2016
Location: Nh
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocky Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2017 at 8:22pm
On the lumpectomy vs mastectomy decision, I will share my experience for what it is worth.   I started with 1 cm tumor, no lymphs, did 4 rounds of AC, tumor grew to 2 cm and 2 lymphs so I went to surgery before completing the chemo regimen since the AC was not effective for me. I then had a bilateral skin and nipple saving mastectomy with immediate reconstruction, and I am thrilled with the results. Yes it is major surgery and you have to weigh those risks with the benefits. However, in terms of body image I awoke from surgery feeling "whole" and like myself, comfortable in my own skin so to speak.   For those who are candidates for this,I give this a big thumbs up.

In terms of chemo after surgery I continued with Taxol, I had three opinions all stressed completing the regimen and I did not want to take any chances.   Will go to radiation next and then hopefully a clinical trial on immunotherapy. Having surgery before completing chemo leaves me in the position of not knowing what my residual risk is, so I have chosen to try to hit it hard.   Best of Luck. There is definitely hope but I do think this diagnosis suggests aggressive treatment.

All the long term survivors have given me so much hope. I feel very positive now about where I am heading. I agree best plan is to take super good care of yourself and getting thru the treatments is not that bad, they really do a great job managing side effects

Rocky

Edited by Rocky - Jan 17 2017 at 8:33pm
Back to Top
adagilbert View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 05 2016
Location: Los Angeles
Status: Offline
Points: 11
Post Options Post Options   Thanks (0) Thanks(0)   Quote adagilbert Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 4:50am
Hello,you guys having good discussion about Chemo ,it must be very difficult after Chemo treatment.The Chemo treatment lead to many side effect such as dry,flaky skin & redness.After Chemo the product which free from harsh chemicals can be taken into use.
The Natural Moisturizer can be used regularly for better result.The 

Back to Top
 Post Reply Post Reply Page  <12
  Share Topic   

Forum Jump Forum Permissions View Drop Down

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