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Topic: Long term survivor examples.

Forum: Triple-Negative Breast Cancer —

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

Posted on: Dec 17, 2013 12:46AM - edited Dec 17, 2013 12:53AM 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 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Nov 21, 2019 08:23PM wrenn wrote:

I am 6 years NED and only had one dose of chemo (stopped due to complications). I rarely even got a cold before cancer but since have had numerous infections. I keep seeming to get infections on my face (nose and eyes) even though I am very careful with hand washing. I have had a sore throat that scared me it was so bad, pneumonia, subluxation of shoulder, osteoarthritis in all joints and dizziness and balance issues, neuropathy to the point that I can't stand more than a few minutes (using a walker) and I keep dropping things.

I am 72 so it could be age related but 72 isn't that old and all of my siblings are the picture of health and seem younger than their chronological ages.

I sometimes wonder if it is stress related since my nerves are way worse since being diagnosed even though I don't consciously worry about recurrence.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Dec 4, 2019 04:51PM Valstim52 wrote:

Hello

Not sure if 5 years is long term but I feel like it is. Im not only triple negative, but inflammatory as well.

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Jan 5, 2020 02:14PM msjag wrote:

Happy New Year to all! I wanted to pop back to to give what I was given when I first came here for support: hope and inspiration! I am on my 10th year of being NED and doing well! I also wanted to share that a friend is 22 years NED! Sending hugs and positive thoughts to all.

Dx 9/29/2010, IDC, 1cm, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Jan 5, 2020 02:48PM santabarbarian wrote:

msjag, that is wonderful to hear!! Congratulations to you!


pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Jan 20, 2020 01:58PM VLH wrote:

Excellent news, msjag, from both you and your friend!

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast
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Feb 25, 2020 08:01AM simplelife4real wrote:

Just popping in to say I'm now a 7 year survivor. I had stage 2b TNBC and had neoadjuvant chemo, lumpectomy, ALND and rads. I had a small amount of cancer remaining in 2 nodes when I had my ALND so it wasn't the best result from chemo, but I'm still here and still NED! Good luck to everyone going through treatment.

Dx 8/1/2013, IDC, 2cm, Stage IIB, Grade 3, 2/11 nodes, ER-/PR-, HER2- Chemotherapy 9/5/2013 Taxol (paclitaxel) Chemotherapy 12/3/2013 AC Surgery 2/13/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 4/1/2014 Breast, Lymph nodes
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Feb 25, 2020 09:54AM santabarbarian wrote:

wonderful to hear that simplelife! Thanks for popping in!!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Feb 25, 2020 11:41AM VL22 wrote:

Thank you simplelife4real! Your story is both comforting and inspiring.


Dx 5/5/2017, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/14/2017 Lumpectomy: Right; Lymph node removal: Sentinel Dx 6/23/2017, IDC, Right, 1cm, Stage IB, Grade 3, 1/2 nodes, ER-/PR-, HER2- Chemotherapy 8/10/2017 AC + T (Taxol) Radiation Therapy 1/10/2018 Whole-breast: Breast Hormonal Therapy 3/11/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 25, 2020 11:57AM Maryjv wrote:

yes thank you for the inspiration!!!

Dx 11/22/2019, IDC, Right, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 12/29/2019 AC + T (Taxol) Surgery 3/27/2020 Mastectomy: Left, Right Surgery 8/26/2020 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Mar 2, 2020 06:22PM Mistiferlyn wrote:

I was diagnosed with IDC TNBC stage 2b in August 2019. I had 4 rounds of AC and 12 weekly Taxol treatments which my last was Feb.6, 2020. I have 2 spots which are connected in upper outer quadrant of left breast and into armpit. After the chemo it has shrunk a lot. I had a PET scan in Sept. which only showed the one spot. I am scheduled for a double mastectomy with reconstruction and will also be having my ovaries and fallopian tubes removed at the same time. Surgery is March 24. I had genetic testing done and am positive for BRIP1 which is a newer gene but prone to ovarian cancer. My question is my breast surgeon is saying I do not need radiation, however, I am very scared about this due to the reoccurrence rate. I am wondering if there are any survivors who did not have radiation. I am just trying to research this before my surgery. Thank you in advance for your reply. Bless all of you. You all rock and are such a great inspirtation.

Dx 8/24/2019, IDC, Left, 3cm, Stage IIB, Grade 3, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 9/23/2019 AC + T (Taxol) Surgery 3/23/2020 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 2, 2020 11:48PM Moderators wrote:

Welcome, Mistiferlyn! We're so sorry you find yourself here, but we hope you find this community to be a source of support and inspiration. You are certainly not along, and we're all here for you. Best of luck with your upcoming surgery, we'll be thinking of you!

The Mods

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Mar 3, 2020 10:34AM santabarbarian wrote:

If you did not get a pCR from chemo, I believe the 'extra' TNBC treatment you might be able to get now would be Xeloda. You might ask about that. The stats say that Mx is equal to Lx + Rads. Another thing you could look into is the kind of rads where they place radioactive beads in the tumor bed during surgery. There may be trials that give these treatments too.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Mar 3, 2020 09:37PM BanR wrote:

Wonderful stories! Thanks for sharing .. Bring on more! Much 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 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Mar 22, 2020 02:12PM Desirr77 wrote:

I am a 4 year survivor of TNBC and a palb2 mutation carrier

Dx 2/4/2016, IDC: Medullary, Right, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 2/9/2016 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery 9/28/2016 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 22, 2020 08:46PM Scoobydoo wrote:

Diagnosed in June 2009 with Stage II triple negative. That’s almost 11 years!!!!! I am thankful to the Lord for He is good.

Started Chemo 9/17/09 Finished 1/4/10 TX 4 DD AC and 4 DD Taxol Started Chlodronate 1/28/10 , start rads 2/16/10 Dx 6/4/2009, 4cm, Stage IIA, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Mar 22, 2020 10:35PM - edited Sep 20, 2020 11:37PM by NinjaMeow

Diagnosed at 40 after the birth of second child. I was completely devastated thinking how I would live life, see kids grow up but step by step I am here almost 6 years later. I had no family history or knowngenetic predisposition to cancer. Stay as much as possible to your usual routine and do the recommended treatment plan by your doctor. I really hated them at times but grateful today. I finished treatment on 3/25/14!


I totally lurked this site and never posted anything until this past year. 🤗 Many of these names are familiar and happy to see everyone well.

Diagnosed at 40 Dx 10/9/2013, DCIS, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/19/2013 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 12/15/2013 AC + T (Taxol)
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Mar 23, 2020 02:24AM SA8PG wrote:

Hi Mistiferilyn

I am 5 years out. I did not have radiation. Although my oncologist highly suggested I did with the size of my tumor. I decided not to because I received a PCR after neo adjuvant chemo. I did agreed if I had residual disease I would do it. Good luck with your decisions We are all here to support you I know you will make the best choice for you
Hugs


Until God opens the next door praise Him in the hallway! Diagnosed at 39 while pregnant. Chemotherapy 8/21/2014 AC + T (Taxol) Surgery 12/17/2014 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/8/2015 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 18, 2020 05:29AM Mistiferlyn wrote:

Thank you for your replies, they truly helped. I did not need to have radiation after double mx. I am just praying there is no metastasis down the road or reoccurrence. All I can do is live my life and pray. I know I can't dwell on it but would be lying if I said I don't think about it. You ladies are all Warriors. Continue the fight and enjoy life. And again thank you so much for your replies. This site definitely helps and gives others like me hope.

Dx 8/24/2019, IDC, Left, 3cm, Stage IIB, Grade 3, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 9/23/2019 AC + T (Taxol) Surgery 3/23/2020 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 21, 2020 05:13AM Mistiferlyn wrote:

It's so nice to have this site with people who totally get it. I was wondering of anyone that's survived had lymphovascular invasion. My initial biopsy showed none but after my mastectomy, which was march 24th, it showed it. I had clear margins, negative lymph nodes and tumor went from 2.5 cm to 0.6 mm. I have been trying not to focus on a reaccurance or metastasis but it's hard. My PET scan prior was clean but I know that doesn't predict the future. I have a friend who passed a year ago at age 45 from TNBC that metastasized to her lungs and brain so I'm very nervous. Thank you all, you are all amazing survivors..and to you just starting best of luck.

Dx 8/24/2019, IDC, Left, 3cm, Stage IIB, Grade 3, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 9/23/2019 AC + T (Taxol) Surgery 3/23/2020 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 17, 2020 10:23PM NorCalS wrote:

Hi. I am only 15 months out from original DX, but it’s great to see people check in and let us “newbies” know that there are long term survivors out there. Thank you guys for posting and letting us know that you’re out there living life. Please keep posting in.

KSteve - you’re a great source of hope and inspiration. Thank you for letting us know that you’re doing well




Dx: 06/2019, left breast, ER/PR-, Her2-. Treatment: 06/2019 - 11/2019 AC/T. Surgery: Lumpectomy with axillary dissection in 12/2019. Radiation: 01/2020-03/2020. Xeloda - 03/2020-09/2020
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Oct 9, 2020 07:31AM zfelicia wrote:

thanks for sharing this. I’m stage IV and I’ve been looking for positive outcomes, however they do not post, I didn’t however find one person on a different site-which with can’t seem to find anymore. Thanks kindly and be strong through your journey

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Oct 17, 2020 04:33AM - edited Oct 17, 2020 04:34AM by 5andcounting

first dx 2009 and local recurrence in 2013. Seven years out now from last chemo. Living life fully and trying not to focus on breast cancer

Treatment on 2009 was lumpectomy and ACT. Treatment in 2013 was bilateral Mx with diep and carboplatin and taxotere.

Thanks be to God, still here and NED. I have yearly breast MRIs and subscribe to my onc recommendation of “if it hurts more than 2 weeks, call me". Nothing usually does.

Keep fighting, it's worth it. ❤️❤️

Surgery 11/4/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Dx 11/6/2009, IDC, 1cm, Stage IIA, Grade 3, 1/20 nodes, ER-/PR-, HER2- Chemotherapy 12/30/2009 AC + T (Taxol) Radiation Therapy 4/18/2010 Breast Dx 4/16/2013, IDC, Left, 1cm, Stage IIA, Grade 3, 0/0 nodes, ER-/PR-, HER2- Surgery 5/1/2013 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 6/6/2013 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 17, 2020 08:13PM NorCalS wrote:

5andcounting,

Thanks for checking in. Great to hear that you’re doing well. Keep living a good life.

Dx: 06/2019, left breast, ER/PR-, Her2-. Treatment: 06/2019 - 11/2019 AC/T. Surgery: Lumpectomy with axillary dissection in 12/2019. Radiation: 01/2020-03/2020. Xeloda - 03/2020-09/2020

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