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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

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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Oct 14, 2015 01:53AM - edited Oct 14, 2015 01:54AM by Mamagrammy

This Post was deleted by Mamagrammy.
Dx 5/2015, IDC, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Chemotherapy 7/6/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 14, 2015 02:12AM Mamagrammy wrote:

Preliminary results were released from the TAILORx trial validating low Oncotype scores not needing chemo. Higher scores are still being studied. But there is some good news from other studies that Genomic Health did announce regarding intermediate and high scores.

"Complementing the data from TAILORx, Genomic Health announced presentation of real-world clinical outcomes from a large cohort of patients in the Clalit registry. Over half of the 930 patients in the analysis were identified as low-risk and were treated with hormone therapy alone based on Recurrence Score results. A nearly six-year follow-up showed very high survival rates (99.8%) and low distant recurrence rates (0.5%) in this patient group.

Survival and recurrence rates in patients with high Recurrence Score results, most of whom received chemotherapy, were 96% and 4% respectively while for patients in the intermediate group survival and recurrence rates were 98.8% and 2.3% respectively."

Dx 5/2015, IDC, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Chemotherapy 7/6/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 14, 2015 06:08AM jojo2373 wrote:

Well its a year later and how is everyone? I too am Luminal B and am now 3 yrs out.

Once you choose hope, anything's possible. ~Christopher Reeve Dx 7/27/2012, IDC, Left, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 8/31/2012 AC + T (Taxol) Surgery 1/7/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 2/4/2013 Whole-breast: Breast, Lymph nodes Hormonal Therapy 4/8/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 11, 2015 09:59AM squidess wrote:

Hey Jojo,

Also ER+/PR-/Her2-. Rounding the corner and heading into 9 years with no problems.

TYG!

2007: 2.4 cm ER+/PR- Her2- Oncotype: 35. Flat-chested and more Bada$$ than ever.
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Dec 11, 2015 10:24AM Wildflower2015 wrote:

"Survival and recurrence rates in patients with high Recurrence Score results, most of whom received chemotherapy, were 96% and 4%"

So is this actually saying the 6 year study only showed 4% recurrence in patients who had high oncotype scores and received chemo? I was told my risk of recurrence was somewhere around 15% with chemo and hormonal therapy. I would love to be able to see 4% instead.


Cold capping saved my hair during chemo :-) Dx 4/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery 4/23/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/18/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/19/2015
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Dec 11, 2015 11:59AM - edited Mar 10, 2018 03:40PM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Dec 11, 2015 12:23PM 1OUgirl wrote:

BarredOwl - I'm not sure what all that stuff actually means. Does it mean that if a woman with a high onco score has only 4% chance of recurrence AFTER doing Chemo? I started this thread 8 years ago and didn't know anyone with an onco score as high as mine (52). I just visited my oncologist and she said "it's patient's like you that made me want to practice oncology for the past 30 years". She was not meaning that I'm a fantastic patient - she meant that what she does in medicine does help a lot of people survive long periods of time, even with mean cancerous tumors such as I had. I am 10 years clean and feel great. I love to encourage woman with the dreaded "high score" that I am still here and they can be survivors too. I never want to say that I'm free of this forever because breast cancer can come back 25 years later. It's just that I rarely think about it anymore and I'm am so grateful to my Lord for allowing me to live this long to see my children get married and have children of their own. PTL. But BarredOwl if you could explain in layman's terms what exactly all this information means, many of us reading this form would be very appreciative.

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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Dec 11, 2015 12:37PM Wildflower2015 wrote:

BarredOwl,

Yes, it's still unclear to me, I don't even know what a confidence interval is

Cold capping saved my hair during chemo :-) Dx 4/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery 4/23/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/18/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/19/2015
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Dec 11, 2015 05:40PM - edited Mar 10, 2018 03:40PM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Dec 11, 2015 07:10PM - edited Mar 10, 2018 03:40PM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Dec 11, 2015 08:37PM Warrior_Woman wrote:

My ability to understand oncology and study data has grown enormously since my diagnosis. Frankly, this is information I would have preferred to have never learned.

BarredOwl - I always appreciate your informed posts. I'm having a difficult time reconciling some of the numbers from various studies. The research you're citing leads me to believe the recurrence rates are not terribly high compared with studies that show significantly higher systemic recurrence rates. Does any of this make sense to you?

Wildflower - I too have a higher recurrence risk than what the study suggests. It makes me think my tumor was far more aggressive than anyone revealed to me. I just don't know.

IOUgirl - Good for you. I love to see women doing well many years out. I look forward to the day this looks like a blip on the radar.

Neurofibromatosis type 1, BMX & a total of 11 surgeries, chemo and hormonal treatment. FU cancer. I'm better than ever! Dx 9/2013, IDC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/2013, LCIS, 0/1 nodes Dx 12/2013, DCIS, 0/1 nodes Hormonal Therapy Aromasin (exemestane) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 11, 2015 09:07PM - edited Mar 10, 2018 03:41PM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Dec 12, 2015 09:36AM Warrior_Woman wrote:

Thanks BarredOwl. I like the numbers for this study. I like any study that gives me a better chance.

Neurofibromatosis type 1, BMX & a total of 11 surgeries, chemo and hormonal treatment. FU cancer. I'm better than ever! Dx 9/2013, IDC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/2013, LCIS, 0/1 nodes Dx 12/2013, DCIS, 0/1 nodes Hormonal Therapy Aromasin (exemestane) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 14, 2015 10:33PM - edited Mar 10, 2018 03:41PM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Dec 16, 2015 08:57AM Golden01 wrote:

Thank you for sharing. I fell into that dreaded intermediate group and, while I try to never second-guess my decisions, these numbers were reassuring -distant recurrence rate for intermediate 5.6% with chemotherapy and 5.3% without. After a second opinion at the NCI designated research center in my state, I decided to pass on the chemotherapy. I know that we make the best decisions we can with the information we have at the time but if these numbers had been different for the intermediate range, it would be hard not to feel I should have gone with the first doctor's recommendations.

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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Jan 15, 2016 05:14PM nottoday wrote:

Barred Owl,


Thanks so much for pointing out the SABC abstract. I had missed it, and it's good to see an update on DFS by RS. The big push for AIs came only after this study, so maybe those will push down that 5-year KM estimate a bit.

Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/21/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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Jan 16, 2016 01:53PM QuinnCat wrote:

I love this thread and thank you to all of the contributors!

JoJo - I am 4 years out from surgery (chemo followed) and my Oncoscore 39. Luminal B.

IOUgirl and other longterm survivors that have posted...I very much appreciate your posts!

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Mar 10, 2016 11:12PM ThinkingPositive wrote:

my pathology report mentioned nothing about luminal a or b ?? How or what determines this? I unfortunately did not have the oncotype test. Do all grade 3 generally have very high oncotype scores and does node positive, Lvi increase the score?

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 10, 2016 11:57PM Meow13 wrote:

Doing OK at 4 years oncodx was 34, I chose no chemo just AIs

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Mar 11, 2016 09:28AM Golden01 wrote:

Good for you Meow13! My score was 27 and I did not do chemo either, (one MO recommended, MO at NCI research center did not), and am five years out doing fine. Wasn't an easy decision but once I made it, I've done my best to not look back.

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 11, 2016 06:43PM - edited Mar 11, 2016 06:44PM by QuinnCat

Thinking positive:

I don't know if all grade 3's have high Oncoscores, but most "high" Oncoscores are grade 3. Genomics use to have graphs /statistics about this on their web site.

Luminal B is not usually reported on pathology. It is a subtype of ER+ BC. Roughly, luminal B is ER+, PR-, Her2-, Ki67 > 12%. Not everyone gets their Ki67 % reported on their pathology because most pathologists feel it is hard to precisely, or even accurately, measure. Oncoscore considers Ki67 and hormone factors and since these factors are less favorable in Luminal B than Luminal A, it follows Luminal B will get higher Oncotype scores.

As far as the more nuanced differences between A and B, I think that is the stuff of medical journal articles. Once I was deep into that stuff, even considering Metformin to prevent recurrence due to Luminal B being more affected by Insulin like growth factor, but then I found things contrary to this. Survival statistics are sometimes differentiated between A and B.

I research less, maybe not at all, these days, and my memory for precise facts less reliable. I may be off a percent here and there.

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Mar 11, 2016 06:57PM ThinkingPositive wrote:

Quinncat, thanks for the response.. it seems that the further along I get from my final chemo (which was 13 months ago, the more worried I become. I thought it was supposed to go the other way, that as time goes on, you worry less?? My Ki67 was 28% but I was ER+ and PR+ Her2-. I read so many different things and I know I should just move on and not worry, but it really is difficult. It doesn't make me depressed or not able to function, just that I worry about Stage 4.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 11, 2016 08:27PM QuinnCat wrote:

ThinkingPositive - I am the queen of worry, so I get it. It does get better and occasionally a day, or may be even two in a row, goes by and I haven't thought of cancer. From all my reading, I do believe I'm in my own personal risk timeframe (year 3-5, being 4 years plus from surgery), but even given that, I worry less. After 5 years, my risk is the same as a luminal A, but I still know that isnt zero.

I was PR+ too, but IHC 5% and Oncotype showed similar. That was enough (or not enough 🙃) to still qualify as luminal B per my MO

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Mar 11, 2016 08:47PM Rambros wrote:

I had grade 3, ER 90%, PR 90%, KI-67 10%, one positive node (1 cm), LVI and my oncotype score was 19. I'm not sure if I'm luminal A or B though - seems like every study I read has a different definition.

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- (FISH) Surgery 11/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/6/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Prophylactic ovary removal Radiation Therapy Lymph nodes, Chest wall
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Mar 11, 2016 09:00PM QuinnCat wrote:

Boys62 - luminal A, unless definitionhas changed lately.


Someone asked if LVI part of the oncoscore calculation -NO

The test, for sure ER+, Her2-. Not sure about a node, but might allow 1 node or micromet, or whatever still qualifies one as Stage 1. Chemo burned my brain out.



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Mar 11, 2016 09:16PM ThinkingPositive wrote:

Boys62, your pathology is very similar to mine, but I was Stage 2A. My Ki67 was 27%. Had node positive that was 8mm, tumor was mix of DCIS and IDC... 1.1mm. Had LVI that was present as well I assume you did chemo? Based on what my MO said, my oncotype would come back probably high, so he was recommending chemo. I went ahead and did the chemo.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 11, 2016 10:00PM QuinnCat wrote:

ThinkingPositive - I just found this little factoid about luminal B. Seems to agree with what I think I knew at one point in this process:

"Luminal B is higher risk but the risk drops to something similar to Luminal A after 5 years. Half of recurrences occur in the first 5 years and the 2-3 year mark is a time of higher incidence."

And perhaps, since I am 4 years out, I started worrying less this last year, though it hasn't gone away, by any means, it's just less

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Mar 12, 2016 07:16AM Rambros wrote:

thinking positive- yes, I did AC-T chemo. My MO agreed to order the oncotype test (I was just curious about what my score was) but told me no matter what the score was she was recommending chemo based on all of my other factors - grade 3, positive node, tumor size, LVI and I'm young (late 30's).

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- (FISH) Surgery 11/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/6/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Prophylactic ovary removal Radiation Therapy Lymph nodes, Chest wall
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Mar 12, 2016 07:29AM ThinkingPositive wrote:

Boys62- I did TC. MO gave me two choices but would not tell me which one to do. I picked TC due to heart problems act could cause and since I have extremely high blood pressure I chose tc. So you never ended up having the oncotype test either? If you did whst was your score? Did your MO give you any percentages? Mine didn't really didn't answer questions to my satisfaction but I felt I didn't have time to get second opinion and felt I was at a pretty goodso I stayed.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 12, 2016 08:31AM Rambros wrote:

my score was a 19 which is a 12% chance of recurrence in 5 years with or without chemo per the report. Even though oncotype didn't show any benefit to adding chemo my MO thought it would get a few percentage points. I never considered not doing chemo - I'm a young mom and needed to do everything I could. I also did not get a 2nd opinion. Now I'm doing zoladex shots, taking femara, twice a year Prolia shots and hoping for the best

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- (FISH) Surgery 11/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/6/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Prophylactic ovary removal Radiation Therapy Lymph nodes, Chest wall

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