Topic: Long term "high oncotype test" survivors

Forum: High Risk of Recurrence or Second Breast Cancer — Managing high recurrence risk or high risk of developing a second breast cancer.

Posted on: Aug 8, 2008 12:54PM

Posted on: Aug 8, 2008 12:54PM

1OUgirl wrote:

Is there any long term survivors who have had a high oncotype score.  I know that this test is relatively new but I also know that it has been on the market at least 4 years.  So I know that "long term" regarding this test isn't very long term.  I had it done 3 years and 4 months ago.  My oncotype score was 52.  My onc told me that the test had been on the market only about 8 months.  I'm just curious about others who have had an extremely high score and are still clear (so to speak).  I am doing great with no signs of any kind.  Is there alot of others out there?  By the way, I love this site.

Dx 4/1/2005, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+, HER2- Surgery Lumpectomy: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Saline implant
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Mar 15, 2016 07:06PM - edited Mar 15, 2016 07:07PM by Moondust

ThinkingPositive, I should maybe put all the other pathology info in my signature, because it explains why my tumor is a little wonky and got a 26. Even though I am Grade 1 (4 on the Nottingham scale) and my mitotic rate was a 1, several other factors are not so good. My Ki67 (which my MO has little faith in but I can't ignore) was high at 30%. My ER+ is 80% and my PR+ is 40%. The oncotype report classified me as ER+, PR- because PR has to be higher than mine to get into their + range. I think most Grade 1 tumors come back with a much lower score than mine.Possibly your MO knows that a Grade 3 with one pos node will make your score high. If your ER and PR are high percentages then you have an excellent chance of responding well to hormonal therapy. My thoughts only, and I am not an expert.

Alice. DX at 61. Onco score 26. Ki67 30%. Dx 12/7/2015, IDC, Right, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 1/15/2016 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 2/23/2016 Whole breast Hormonal Therapy 4/22/2016 Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 15, 2016 09:03PM thinkingpositive wrote:

Moondust. Thanks. For responding. My er was98% and pr was 68%. Ki67 was 27%. I had Lvi present and extra capsulated extension in the one positive node. I know it could be worse. I am just hoping the chemo did what it was supposed to do and that the AI works as well!! I just find myself more paranoid now the year has passed.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 16, 2016 10:03AM 1OUgirl wrote:

Hi all, It's 1OUgirl here. I just wanted to check in here again and say that this month makes me an 11 year survivor of breast cancer!!! I started this post many years ago and was scared and unsure of the future because Oncotype DX testing was brand new. My doctor told me that the test was approved only 11 months before I was diagnosed. I did not know anyone that had a score near mine. I had a 52 on my Oncotype test score. My doctor would not release me from her care until I got to the 10 year mark. Well now it has been 11 years and I rarely think of my score or that I once had cancer. It will come to the back of my mind sometimes but not to a point of worry. I am very aware that anyone can have breast cancer recur, not just us ladies with high onco scores so I never fool myself into believing that it can't ever come back but I refuse to let that rule my moods and behavior. I try to live above my circumstances and just LIVE. I just came on here to give encouragement to all the ladies that are still going through the process i.e. chemo, radiation, tamoxifen etc. There truly are long term survivors out there that had really high scores.

Dx 4/1/2005, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+, HER2- Surgery Lumpectomy: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Saline implant
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Mar 16, 2016 03:45PM - edited Mar 16, 2016 08:49PM by thinkingpositive

thank you for sharing that!! I am finding it very difficult since its been only13 months since I finished chemo. It's on my mind more now than it was 6 months ago. I guess it will worry me until after I go for me Mammo ultrasound and MRI. I guess it's normal to feel this way? I can't tell you how what you posted gives me hope. I thought about your post all day. I am so happy for you!

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 16, 2016 05:05PM meow13 wrote:

10Ugirl, thank you for checking in. So happy your oncodx number didn't predict your outcome.

Each year that passes reduces our risk.

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Mar 16, 2016 08:19PM hopeful82014 wrote:

1OUgirl - Thank you for starting this thread and for coming back here to update.Congratulations as well. Not just on reaching the 11 year mark, but on 'beating' cancer by successfully moving beyond it. That's a huge challenge. I'm so happy to hear of women who are able to do it. Best wishes to you always!

Dx IDC, HER2-
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Mar 17, 2016 08:24AM Golden01 wrote:

1OUgirl - Congratulations and thank you for sharing your story. I am coming up on my five year mark and doing well but have found I am experiencing an unexplained case of the blues (might be better described as unnamed anxiety or simply no motivation to do what I need to do to keep my cancer at bay). You've lifted my spirits today.

Mucinous Carcinoma, Hypercellular Variant; Oncotype DX 27, Dx 7/8/2011, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2- Hormonal Therapy 7/20/2014 Arimidex (anastrozole)
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Mar 18, 2016 11:18PM cajunqueen15 wrote:

yeeeeeeah,10u! That is fantastic news. Come back and let us know when another 10 has passed!

35 @ dx. BRCA2. Disciple, wife, mother of twins (6) & son (4), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 8/28/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/19/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Mar 22, 2016 01:11PM tkemp67 wrote:

canjunqueen1- Just checking in. How are you doing?

Dx 8/8/2015, IDC, Right, 2cm, Stage IIIA, Grade 2, 4/23 nodes, ER+, HER2- Surgery 8/18/2015 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 9/25/2015 AC + T (Taxol) Radiation Therapy 3/12/2016
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Mar 26, 2016 12:31AM QuinnCat wrote:

10Ugirl

You are my touchstone in this thread and the reason I keep coming back, so very happy to see your newest post! Thank you for being so diligent about returning 11 years later. Congratulations. I will do the same too. My oncoscore was 39, and while not the highest, within the parameters of who should get the test, their are a handful higher and much higher, here, the head MO at OHSU (an NCI hospital) didn't help when he told me it was the second highest score he had seen as he handed me the papers. I am 4 years and 2 months out from surgery. Finished chemo August 2012 (AC/T DD plus 6 weeks of carboplatin for brca2+). Doing fine thus far. Ki67 was 60% Grade 3, 1.4 cm, no node, no LVI, ER+ PR- (IHC er 90%, pr, 5%). ER came out only barely positive on the oncoscore, go figure. I figure some of the tumor was headed to triple negative and some still ER+. 3.5 years on exemestane.

Ki67 is one element in the oncoscore, but not explicitly stated. It's been 4 years since I got that report, so things could have changed. I got mine from the biopsy report.

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