Join Us

We are 216,859 members in 84 forums discussing 160,262 topics.

Help with Abbreviations

Topic: Cancer 10+ years survivors no chemo during thirties

Forum: Young With Breast Cancer —

Connect with those under 40 who have been diagnosed.

Posted on: Nov 13, 2018 06:50AM

Raysal wrote:

are there any cancer survivors who had IDC er/pr+ in their thirties, declined chemo, and currently a survivor 10+ years out? So basically looking for women who survived cancer over 10 years despite not taking chemo even though they were in their thirties when cancer hit.

Just looking for inspiration and hope. I know many women move on once they go past treatment so even if you know someone please mention it. Many of the survivorship stories I read are for women who had cancer when they were over 40.


Diagnosed on 9/27/18 shortly after 34th birthday. ER/PR+, HER2-, 0/2, oncotype 13. Next up rads & tamoxifen
Log in to post a reply

Page 1 of 1 (22 results)

Posts 1 - 22 (22 total)

Log in to post a reply

Nov 13, 2018 08:01AM JoE777 wrote:

are you taking AIs

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 1/8/2018 Femara (letrozole) Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Other Radiation Therapy External: Bone Targeted Therapy Kisqali
Log in to post a reply

Nov 13, 2018 09:35AM Raysal wrote:

joe777 I havent started treatment yet. Its suggested by my BS that most likely I'll be on tamoxifen and take rads but they need to do the oncotype testing once I transfer to the oncologist. They're waiting for my lumpectomy re-excision pathology report.

I'm just curious because I keep reading how the outlook for those under 40 isnt so great and how it's more aggressive. So I'm wondering whether how hard I need to fight the cancer. I want to be around and watch my kids grow.

Diagnosed on 9/27/18 shortly after 34th birthday. ER/PR+, HER2-, 0/2, oncotype 13. Next up rads & tamoxifen
Log in to post a reply

Nov 13, 2018 12:35PM BCFighter2017 wrote:

I was 34 when diagnosed and initially i was also looking to avoid chemo.

My onco told me that in younger age cancer tends to be aggressive and in my case chemo worked as it shrunk the tumor in 2 treatments (neo adjuvant) that resulted in more breast conservation ( I had lumpectomy)

I know my friends mother denied chemo and she is doing fine but again she is over 60's and her cancer was stage 1



Dx @ 34 thinking it was closed milk duct after stopping breast milk pumping Dx 4/10/2017, IDC, Right, 3cm, Stage IIB, Grade 3, ER+/PR+, HER2- Chemotherapy 5/2/2017 AC + T (Taxol) Surgery 9/5/2017 Lumpectomy: Right; Lymph node removal: Underarm/Axillary
Log in to post a reply

Nov 13, 2018 04:28PM Dreamers1989 wrote:

I think it depends on your pathology really. Younger women tend to have more aggressive cancer because their pathology is more aggressive or because they were diagnosed when things had progressed. Younger women are less likely to have regular mammograms etc especially if not genetically predisposed. So by the time we find it or feel it it’s progressed beyond stage 1. I’m in my thirties but I didn’t decline chemo. My MO actually advised against it.

Having said that I do know a lady that’s 10 years out and had radiation only!!!:)

Dx 7/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/15/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/15/2018
Log in to post a reply

Jan 12, 2019 09:22PM Palesa2018 wrote:

Bump.

Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/12/2018 Lymph node removal: Sentinel Surgery 7/9/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/9/2018 Hormonal Therapy 9/12/2018 Zoladex (goserelin) Radiation Therapy 9/16/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/4/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Apr 2, 2019 07:58AM nem126 wrote:

I'm 34 and 2 years out... did not have chemo. I had a lumpectomy, radiation, and am now on tamoxifen.

I was stage 1, oncotype score of 16 I believe, and my oncologist advised against chemo. There have been a lot of recent studies saying chemo is not usually necessary for stage 1, as it hasn't moved into your lymph nodes. (however, tumor type and her 2 etc also play into that decision... and it's all very personal).

For me, they thought the benefit was very little compared to the risks and side effects.

Again, I'm only 2 years out but I'm doing very well. Looking at taking a break from tamoxifen to hopefully conceive this year. We shall see.

I'd love to hear from 10+ year survivors too! I know they are out there!!


Diagnosed at 32. Life is weird! Dx 12/6/2016, ILC/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/11/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 2/28/2017 Whole-breast: Breast, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Apr 2, 2019 02:14PM Salamandra wrote:

I could be wrong, but I think that 10+ years ago, chemo was pretty much standard of care for younger women with breast cancer. The genomic tests like Oncotype and mammaprint weren't so well proven/common then. That might make it harder to find the women you're looking for.

Did your doctor offer you chemo with the 13 oncotype score? Mine did not. She said she would have insisted on it if I'd had any node involvement though.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
Log in to post a reply

Apr 7, 2019 09:19AM Adelozier wrote:

bump

Dx 5/2/2017, DCIS/IDC, Right, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

Apr 27, 2019 10:00AM Valentina7 wrote:

I also didn't have chemo... they said, it was not necessary..@nem126 how big was your tumor?

Dx 11/27/2017, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 12/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 1/12/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/22/2018 3DCRT: Breast
Log in to post a reply

Apr 30, 2019 02:38PM MirandaPriestly wrote:

I am 2 years, 8 months NED and also did not have chemo (agree with previous poster who said you will have a hard time finding 10+ year survivors who did not have chemo since it was the standard of care back then for young women). I was dx'd at 31 years old with IDC ER/PR+, HER2-, Stage 1B, Grade 1 and my oncotype was 0. My mammaprint was low, as well. I think I remember my MO saying that for oncotype 0-18 he would not recommend chemo. I decided to get a BMX in order to avoid radiation and the regular scans which went with the lumpectomy and I also will take tamoxifen for 10 years, but am going to take a break soon to try for a baby.

I do know a few women who were diagnosed in their early 30s who are now mid 60s and early 70s. I guess I'm not sure if they had chemo (probably yes?), but either way they are well and have not had a recurrence.

Dx 6/14/2016, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Mastectomy: Left, Right; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

May 2, 2019 12:34PM VioletKali wrote:

I was DX 3 weeks shy of my 32nd birthday. I quit chemo.AND eventually stoppes Herceptin. I had a bilateral nipple sparing mastectomy. I declined Anti hormonals...i am still alive and well.

I will be 37 in July.. :)

5 YEARS survivor.

My tumor was 1.7cm, 10% of it was noted to be DCIS. No family history of cancer at all. Discontinued Chemo d/t uncontrollable side effects which caused hospitalizations, blood transfusions, and poor quality of life. I am doing well! Dx 6/19/2014, DCIS, Stage 0 Dx 6/19/2014, IDC, 1cm, Stage IA, Grade 3, 0/10 nodes, ER+/PR+, HER2+ Surgery 8/18/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/15/2014 Herceptin (trastuzumab) Chemotherapy 9/15/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
Log in to post a reply

May 22, 2019 12:52PM Margun wrote:

violetkali- your story is so encouraging. You had Her2positive timoré and survived it without even completing chimo. But you did mastectomy. How long was the recovery time? My surgeon suggest lumpectomy. She says no difference in outcome with her2

Log in to post a reply

May 22, 2019 05:47PM Mabs wrote:

hello girls, i was dx at 36, while doing my medical check up to ger pregnant again (i have a girl that was 2 at dx and is 7 now). I am 40 now. Bmx, no rads, no chemo, tamox and zoladex. Oncotype 11. Almost 5 years since dx and doing fine. Confident that i made the right decision not to do chemo. I hope to live a lot, to see my girl grow up and have her own babies... i will try to conceive again if my periods came back after ending treatment september this year! Wish you all the best! Live long and prosper!

Dx 8/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 9/1/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 11/3/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
Log in to post a reply

May 22, 2019 07:40PM Margun wrote:

mabs- your Mo gave you the option or you went agains it’s recommandation to do chimo

Log in to post a reply

May 25, 2019 04:23PM - edited May 25, 2019 04:25PM by Tmh0921

Dx at 27 years old in 1999. Had a few scares along the way, and currently waiting for a biopsy on a new lump, but I'm at 19+ years and counting Smile


BTW, I've also had two babies post BC Dx

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/15 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/31/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/5/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin) Surgery 7/16/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

May 26, 2019 09:30PM Palesa2018 wrote:

thanks for sharing tmh0921. That is really encouraging. I feel insecure sometimes about no chemo. It was discouraged due to low oncotype (12) in my case.

All the best and I wish you well with your tests. Let us know how it goes.

Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/12/2018 Lymph node removal: Sentinel Surgery 7/9/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/9/2018 Hormonal Therapy 9/12/2018 Zoladex (goserelin) Radiation Therapy 9/16/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/4/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

May 28, 2019 10:26AM - edited May 28, 2019 10:26AM by Tmh0921

In 1999 they didn't do oncotype testing, and were just starting the HER2 testing. I was honestly shocked when my oncologist (and tumor board) recommended no chemo. At the time, I felt like they were ripping a safety net away from me. In the long run, however, it appears to have been the right decision.

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/15 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/31/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/5/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin) Surgery 7/16/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

May 28, 2019 10:58AM Mabs wrote:

Margun, my doctor said no chemo for me. Oncotype of 11 was decisive on that.

Dx 8/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 9/1/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 11/3/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
Log in to post a reply

Jul 20, 2019 01:47PM Margun wrote:

what is the difference between the nipple sparing mastectomy and Goldilocks mastectomy

Log in to post a reply

Dec 18, 2019 08:10AM Lvp84 wrote:

this is a really interesting thread, want to bump to see if we get anymore? Recently diagnosed at 35 and waiting on Oncotype to make an informed decision

Log in to post a reply

Dec 19, 2019 11:24AM Mabs wrote:

This year at SABCS, they released another part of TAILORX, confirming that oncotype test predicts recurrence in younger women as well as in older women.

Dx 8/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 9/1/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 11/3/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
Log in to post a reply

Dec 19, 2019 11:26AM Mabs wrote:

https://www.prnewswire.com/news-releases/new-evidence-from-large-studies-highlights-value-of-oncotype-dx-breast-recurrence-score-to-guide-chemotherapy-treatment-in-young-patients-with-node-negative-or-node-positive-early-stage-breast-cancer-300973702.html

Dx 8/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 9/1/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 11/3/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)

Page 1 of 1 (22 results)