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 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; 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 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- Surgery 11/17/2014 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; 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 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; 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 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- Surgery 11/17/2014 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; 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 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; 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 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- Surgery 11/17/2014 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; 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 Radiation Therapy Lymph nodes, Chest wall

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