Join Us

We are 225,688 members in 83 forums discussing 164,174 topics.

Help with Abbreviations

Topic: Long term survivor examples.

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM by BanR

BanR wrote:

Just an idea came across my mind.

Can we share stories and examples of long term triple negative survivors. They dont participate in such forums. So its only by word of mouth that we get to hear about them.

But I also see few of them in this website, who themselves are long term survivors. I feel so happy to see how they have moved on so beautifully with their lives.

I know two such women. Both close to 10 years out of diagnosis. Both without any family history of cancer.

One diagnosed in 2003 and another in 2004. Both were in their late 30s then. Those days they were not aware that they were triple negative. But they say that tamoxifilin didnot work on them, they had only surgery chemo and radiation. So in all probability they were tnbc patients.

One was stage 1, another stage 2b. One had 6 rounds FEC and another had 6 rounds TAC. They both have yearly check ups now and are leading completely normal lives.

I also know another woman, who got diagnosed 5 years ago but stage 3, body didnot respond to tamoxifilin and had complete mastectomy. She had 6 rounds TAc, plus rads. Living a normal life...and put the entire episode behind her.

If you also know someone having similar treatment and diagnosis years ago and is still living ...please share. It will be very insipiring.

Love u all!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
Log in to post a reply

Page 9 of 13 (369 results)

Posts 241 - 270 (369 total)

Log in to post a reply

Sep 28, 2015 07:56PM SlowDeepBreaths wrote:

Great news Sjreed!!

char, Wow....twice! Thanks for sharing! Great to hear you're doing well.

shori, I blame everything on chemo brain!!

yellow, congrats on 7 years!! Great advice!!

Thanks ladies!!

Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
Log in to post a reply

Oct 13, 2015 11:51AM - edited Oct 13, 2015 11:52AM by Gorilla12

It feels good to post under long term survivor. Not what I thought I would be a veteran at, but okay. It is going on 11 years out for me. I have remarried, my daughter got her master's - a new job and my son is in the Marines in Japan. Life does move on after this horrible disease.

I have my yearly mammogram next week, God please let that be NED again. I hope my story can help someone else have hope. I know that is what I wanted so desperately when I was sick.

Love - Gorilla12


Log in to post a reply

Oct 15, 2015 07:20PM SlowDeepBreaths wrote:

Gorilla, WOW....eleven years is wonderful to hear!!
Sending best wishes for your mammo next week!! Please let us know how it goes if you can!!

Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
Log in to post a reply

Oct 18, 2015 10:32PM Tninj wrote:

Hi. Is anyone currently participating in a clinical study for triple negative IDC at Dana Farber? My onc suggested I might be a "good candidate", but I've already pushed for chemo (began last Tuesday), and I am curious about trials as well. It's hard to be your own best advocate! I know I just wanted to be treated- ASAP.

Warmly,

T

Dx 10/1/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 2/11/2016 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Dx 3/2020, IDC, Right, 4cm, Grade 3, ER-/PR-, HER2- Chemotherapy 4/1/2020 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin) Surgery 10/7/2020 Reconstruction (right) Radiation Therapy Whole-breast: Breast Chemotherapy AC + T (Taxol) Immunotherapy Tecentriq (atezolizumab)
Log in to post a reply

Oct 21, 2015 04:27PM Gorilla12 wrote:

Hello Everyone,

I don't post here often, however today I have to. I just came back from getting my yearly mammogram. We have moved recently and I went to a new breast center. They took such great care with me. They had all my prior records and film. I received a normal reading after a diagnostic mammogram. I am so relieved and excited!!

I was diagnosed 11 years ago with triple-negative and I was defined as "cured" by my oncologist after 10 years disease free. I want to give hope to others that there are long term survivors of this disease.

I am so happy to be here with my husband, daughter, son and two pups. Live is wonderful and the possibilities are endless to dream and fulfill life.

Love you all,

Gorilla12

Log in to post a reply

Oct 30, 2015 06:00PM SlowDeepBreaths wrote:

Great news Gorilla!! You give us all hope. Thanks for sharing your news!!!

Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
Log in to post a reply

Nov 4, 2015 09:00PM dprice74 wrote:

I just happened across this board, and thought I would pop in with some words of encouragement. I remember the shock of my cancer diagnosis, the dark days of treatment that seemed to go on forever, and how scared and depressed I was. I was diagnosed with aggressive stage 2B ER-/PR- breast cancer in February 2000. It wasn't until later that the HER2 test became available, and it was determined I was also negative for that. So yes, triple-negative. I opted for a lumpectomy followed by seven long months of treatment, including A/C, radiation therapy, and Taxol. It felt like treatments would never end, that cancer would rule my days forever. Unbelievably, the treatments did eventually end, my hair grew back, I could eat without throwing up, and my life returned to normal. And eventually the day came when I went a whole day without thinking about cancer. I remember hitting that magic 5-year mark and feeling like my life had been given back to me! It's been nearly 16 years since my diagnosis, and I'm still cancer-free, and I rarely even think about it. I really did kick cancer's butt! So for those of you who are newly diagnosed, or in the middle of treatments that seem like they will never end, for those of you who are scared, depressed, feeling helpless to order your own destiny, I just want to say hang in there and stay strong. There is life after cancer, and it is good. I pray that each and every person reading this forum lives a long, healthy, beautiful life with cancer far behind you and only loveliness ahead.

Log in to post a reply

Nov 9, 2015 12:31PM BanR wrote:

Whenever I feel low...I make sure to come read this thread.

TNBC can be conquered....yes it can!!

dprice...you are right, there is life after cancer and i wish everyone here a long one!!!

T, do let us know more about the clinical trials and the studies...

hugs to all!!

cheers to good health!!


Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
Log in to post a reply

Nov 9, 2015 02:16PM Luvmydobies wrote:

Gorilla and dprice thanks for posting here! Congrats!!

I also know a TN survivor who is 17 years NED and another who is about 20 years NED!

Dx 1/16/2013, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 2/5/2013 Mastectomy: Left, Right Chemotherapy 3/26/2013 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide)
Log in to post a reply

Nov 10, 2015 01:45AM sylviaexmouthuk wrote:

Hello everyone,

I have just been reading through some of the posts on this thread created by BanR. I am from the UK and was diagnosed with IDC triple negative back in 2005. It was not called as such at the time. I was told the prognosis was not good, but I had my treatment. At the end of this I was NED. I was with the hospital for ten years for check ups and then was able to be discharged this year. I am thus alive and well ten years on.

I hope my post will encourage and motivate you all.

Greetings from the UK.

Sylvia

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
Log in to post a reply

Nov 17, 2015 09:20PM BanR wrote:

Thanks so much Sylvia!

Getting diagnosed with a 6cm lump would have been scary but then it looks like, that little monster, wasn't behaving as aggressively ..since it affected just one of your lymph nodes inspite of its size. A co patient here got a 2.5 cm lump but 3 lymph nodes affected!!

I am so happy that you have come out of it so well and thank you for joining here and encouraging us.

We will look forward to hear more from you..


I hope everybody else is doing well.

Advance wishes for the festive season ahead!!!


Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
Log in to post a reply

Nov 17, 2015 09:23PM BanR wrote:

Luvmy...

So very glad to hear about your freinds.....one 17 year survivor and another 20 year!! Both TNBCs? How did they find out that it was TNBC those days and what was the treatment protocol....if you know, then please share with us too..

love!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
Log in to post a reply

Nov 18, 2015 04:55PM Meadow wrote:

love love hearing from you all, thank you!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/25/2013 AC + T (Taxol) Radiation Therapy 2/10/2014 Breast, Lymph nodes Surgery 1/14/2017 Reconstruction (left)
Log in to post a reply

Nov 18, 2015 05:01PM Mamiya wrote:

I have a personal friend who is about 11 years out with TNBC. She had another BC episode at about 5 years on the other side (was very early, did not need chemo again, did another mastectomy on that side), but now she is 6 years out from that one and doing really well. There's hope!

Dx IBC, 6cm+, Grade 3, ER-/PR-, HER2- Chemotherapy Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
Log in to post a reply

Nov 25, 2015 11:17AM BanR wrote:

thats wonderful to hear notdoneyet.. Good that they caught her second BC early. sending warm wishes to her!!

happy thanksgiving everyone..

wishing good health and happiness...

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
Log in to post a reply

Dec 1, 2015 07:06AM Katzie wrote:


To all of you on this forum. Reading the responses of longterm survivors of TNBC gives more hope to all of us. Reading stuff on the internet scares the life out of you , makes you feel there is no hope , no life after diagnosis. All you survivors prove that there is hope. Thank you all

Dx 7/3/2014, ICD 5cm, Grade 3, 0/24 nodes, ER-/PR-, HER2-

Chemotherapy April 2014-july 2014

Surgery 11/08/2014 Right mastectomy, left risk reducing mastectomy, node clearance right , left sentinal node

Radiation 4/10/2014 x15

Log in to post a reply

Dec 1, 2015 09:36AM KSteve wrote:

I posted in the Calling TNs thread in September, but realized I didn't post here.  I hit my 5-year mark in September.  As you will see below I had a large tumor and some lymph node involvement.  I was grateful to have a complete response to the chemo, followed by BMX and radiation.  While the reconstruction part was kind of a long road for me (due to radiated skin breaking down a couple years later), I can honestly say breast cancer doesn't rule my life anymore.  We travel as much as possible (while holding down our full time jobs).  I'm loving life and making lots of new memories with family and friends.  That's one of the biggest personal lessons I learned during this journey.  I'd much rather make memories with my loved ones, then give them "stuff".  We still exchange presents with each other, but most of the presents are for an activity.  Luckily, my family and friends love this.  We just came back from a long weekend in Napa to celebrate my daughter's 25th birthday, and it grew into a group of 17 people!  It was a great time and something that none of us will forget.  So, for those of you in the middle of treatment, there will come a time when breast cancer isn't the only thing you think about.  I still remember it, but it doesn't creep into my thoughts as often as it used to.

Happy holidays and hugs to all!

Kathy

Dx 9/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 3/15 nodes, ER-/PR-, HER2- Chemotherapy 9/20/2010 AC + T (Taxol) Surgery 1/7/2011 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/14/2011 Breast, Lymph nodes Surgery 5/31/2011 Reconstruction (left); Reconstruction (right) Surgery 12/5/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 1/22/2014 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 4/3/2014 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Dec 1, 2015 08:00PM sbeddows123 wrote:

Thanks all....it really does help reading these posts when the anxiety creeps in :

Dx 7/2015, IDC, Right, 3cm, ER-/PR-, HER2-
Log in to post a reply

Dec 16, 2015 01:46PM BanR wrote:

I was reading a beautiful little story, in another thread, ..written by a lady called debwarrier. She was diagnosed with TNBC in 1997, when she was pregnant . 19 long years passed by and now her daughter is about to go to college!! Her story just made my day... I wish ..I so much wish even I can see my daughter grow up into a beautiful woman some day!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
Log in to post a reply

Dec 21, 2015 10:46AM pamcycle wrote:

Just had my 5 year check up. I was also diagnosed with DCIS TNBC, had a bilateral mastectomy. The path report showed another cancer in the same breast a 1.8 cm tumor micropapillary triple negative tumor. My oncologist said at my last visit that the chance of a recurrence is very low, I'm as likely to get cancer as anyone else in the population. Wonderful Christmas present and I thank all my doctors for doing an outstanding job. CHEERS!!!

pamcycle Dx 6/16/2010, DCIS/IDC: Papillary, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2-
Log in to post a reply

Dec 27, 2015 03:54PM Tninj wrote:

I needed to read this tonight. Thank you.

Dx 10/1/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 2/11/2016 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Dx 3/2020, IDC, Right, 4cm, Grade 3, ER-/PR-, HER2- Chemotherapy 4/1/2020 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin) Surgery 10/7/2020 Reconstruction (right) Radiation Therapy Whole-breast: Breast Chemotherapy AC + T (Taxol) Immunotherapy Tecentriq (atezolizumab)
Log in to post a reply

Dec 30, 2015 06:52PM - edited Jul 27, 2020 07:42AM by TectonicShift

This Post was deleted by TectonicShift.
Log in to post a reply

Jan 13, 2016 04:49PM - edited Jan 13, 2016 04:52PM by Ruru99

You can read my diagnosis in my 'signature line'. I just found out today (I might have been told earlier and forgot) that I was triple-negative in 1999. They didn't test for Her2 back then but they re-tested the pathology in 2004 for some reason and I was negative. I had a mastectomy, 6 cycles of FEC and 35 radiation treatments. Took up running 6 years after treatment and I think that was my 'prevention medicine' since tamoxifen wasn't going to be effective.

Unfortunately, right now I'm being worked up for what doesn't present like a recurrence but a new cancer but I have no definitive results yet.

Good luck to everyone!

Dx 11/18/1999, IDC, Right, 5cm, Stage IIIA, Grade 3, 17/20 nodes, ER-/PR-, HER2-
Log in to post a reply

Jan 13, 2016 10:49PM BanR wrote:

Thanks for the info Tectonic..

Ruru.. thanks for stopping by and sharing your diagnosis with us. Sorry to hear that you are having to go through the stress of recurrence... i am sure you would have seen may ups and downs the last 17 years. This too shall pass...pls keep us posted about the results


wishing good health and lots of happiness to everyone...

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
Log in to post a reply

Feb 4, 2016 07:43PM Meggy wrote:

8 years out.  Hugs to you all.

See my 10 years out post regarding my extensive treatment. Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dose dense A/C then 4 Taxol, Then Bilat in 6/08, then 2 more AC, then 4 Carboplatin/Taxotere. Then Radiation. Node Positive (5+). Dx 1/9/2008, IDC, Right, 2cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 2/2/2008 AC + T (Taxol) Surgery 5/10/2008 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 6/4/2008 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/10/2008 Breast, Lymph nodes Dx
Log in to post a reply

Feb 4, 2016 09:52PM Honeytagh wrote:

Congrats Meggy. Thanks for sharing Heart

Dx at 32 Dx 7/11/2014, IDC: Medullary, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 7/23/2014 Lumpectomy; Mastectomy Dx 11/8/2017, IDC, Right, 4cm, Stage IIA, Grade 3, 0/0 nodes, ER-/PR-, HER2- Radiation Therapy Whole-breast: Breast Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
Log in to post a reply

Feb 6, 2016 07:32PM TulipsAndDaffodils wrote:

Hi everyone,

Thanks for sharing your stories! They really help!

Meggy, if you don't mind me asking, why did you have more chemo after surgery? I had neoadjuvant chemo, and then my surgery in November. I did not get a pCR (I had .8cm tumor left after the chemo). So often, it seems that the survivors all had pCRs. I'm wondering if you had more chemo after surgery because you had residual cancer, too? If that's the case, it makes it extra great for me to read your story! Also, did you have to be part of a clinical trial to get the extra chemo, or did your oncologist just decide to prescribe extra chemo? Because right now, it seems, that the protocol is really just watchful waiting if there isn't a good clinical trial (right now, there aren't any appealing trials that I qualify for). So my oncologist is not really recommending additional treatment. I am seeing him again in 2 weeks and plan to push for more chemo (specifically, capecitabine). Just wondering if you had to really advocate for more, or how it all came about in your case. No worries if you don't feel like going into all of this--thanks for your story and I'm so glad you are well!

Tulips

Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
Log in to post a reply

Feb 20, 2016 07:02AM - edited Feb 20, 2016 07:06AM by lululani

This Post was deleted by lululani.
Dx 5/20/2010, IDC, <1cm, Stage IIIA, Grade 3, 8/24 nodes, ER-/PR-, HER2-
Log in to post a reply

Feb 29, 2016 03:52AM Ag23 wrote:

Hello all,

I would love to hear a long term survivor story from someone that had significant tumor size left after chemo. My fear is that all of those who have survived disease free are women who had a pcr or near pcr. After act, the tumor taken out at bmx was 3.2. They gave it a score of 2 (in terms of response to chemo, with 5 being the best).

If you or anyone you know is a long term survivor with a high residual cancer burden, I would love to hear from you! I plant to collect these stories to read on days when I need encouragement.





Dx 10/6/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Surgery 2/4/2016 Mastectomy: Right Chemotherapy AC + T (Taxol)
Log in to post a reply

Feb 29, 2016 11:29AM BanR wrote:

We have a few women posting on and off, who couldnt take chemo or who had residual tumor left, or whose tumor was resistant to chemo......I have been hearing from them at regular intervals, posting in threads ... since 2013. I cant recollect their names right now...but yes, there are.

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014

Page 9 of 13 (369 results)