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 09:54AM

Posted on: Aug 8, 2008 09:54AM

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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Jul 25, 2012 02:50PM QuinnCat wrote:

IOU-if I remember correctly, you were her2 negative. Is that correct? (you are my inspiration, btw, as I'm score 39 er+, no nodes) As Cookie said, the studies on recurrence only involved her2 negative. I could be wrong, but that is my understanding. Anyway, comparing scores between her2+ and her2- is like comparing apples and oranges as herceptin totally changes the game.

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Jul 25, 2012 07:59PM cookiegal wrote:

I remember my her2 results came later than the rest of my path, so perhaps the sample is getting sent out before the Her2 results are back.

You deserve a cookie!
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Jul 26, 2012 10:09AM 1OUgirl wrote:

Kam, Yes I was her2negative and I too believe the studies were only on her2negative patients.  Even after my chemo, my doc said chances of recurring were 20% in 10 years.  But she also said that it is extremely rare for a cancer to recur in distant areas after 10 years.  She says she has only one patient that had a distant recurrence after 10 years and he was NOT a breast cancer patient.  I still know that I will never be out of the clear, but I live each day like I never had cancer and I truly love growing older.  I was only 43 when i got breast cancer and I'm thankful to the Lord for every day He gives me.

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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Jul 28, 2012 11:40AM vickilind61 wrote:

1ougirl,

thanks for the encouragement.  At this point, the onco score is just one more thing in my bag that has me angry/frustrated/worried.  However, my surgeries went well and I am past the halfway point in chemo.  So, we will see.

It's not the years, it's the mileage. Oncotype of 51. Lumpectomy followed by mastecomy on the right side with TE. Dx 2/13/2012, IDC, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR+, HER2+
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Jul 31, 2012 08:23PM BonoboGirrl wrote:

For those who are Her2+, bear in mind that the oncotype DX is designed for early stage ER+ BC, not HER2+. The Her2 skews the results. That said, if you're ER + and Her2+ your score will be lower than if you're hormone neg and Her2+. The results are really only valid if you're Her2 neg. I'm glad I had the Oncotype DX, though, since according to it I'm not ER+. My biobsy path had indicated otherwise. The score is a determinent of whether chemo will be beneficial. Beyond that, it's just number, not a prediction. :)

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Jul 31, 2012 08:28PM BonoboGirrl wrote:

@Raider: Wow. I thought I had the highest Onco DX score. Mine was 65. But I'm hormone neg, Her2+. Makes sense a triple neg would receive a higher score.

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Oct 28, 2012 06:47AM IllinoisNative wrote:

I have you all beat.  My score was 70.  I'm low ER and PR positive which I guess is almost triple negative, but my doctor said that my ER and PR status was high enough that I'm not considered triple negative and they aren't treating me that way.  He also said chemo reduced my score so it's almost like I'm someone with a low Onco Dx score now.  My last chemo was April 29, 2011 and everything has come back clean...MRI, mammogram, etc.  Of course, he also said most recurrences of cancer happens in the second year.  lol

BRCA 2 Positive Dx 11/27/2010, IDC, 4cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Oct 28, 2012 03:17PM - edited Oct 28, 2012 03:18PM by Rose12

Hello Ladies,

My score was 61. I was very upset to hear this, but I eneded up with T/C X 4, radiation 33 rounds, and now I am on Femara. It has dropped my risk way down. Hope it all worked. Only time will tell. Embarassed Sorry I am not long term yet, but wanted to share with my high score. Thanks.

Dx 11/30/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2-
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Oct 28, 2012 04:00PM QuinnCat wrote:

IllinoisNative - 70. That's a legit high score in the range of ER+ and/or PR+ scores.  I see you are BRCA2+ like myself.  Two MO's told me my score was the second highest score they've seen...(one saw a 42).  Again, only referring to hormone positive Her2 negative.  I'm curious, what did Oncotype Dx report back on your ER and PR scores?? Also, did you have a Ki67 from an initial biopsy?  Rose - 61...same questions.  

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Oct 29, 2012 03:12AM Rose12 wrote:

Kam, My Oncotype DX report showed the same scores as my first initial pathology report. Very strong E postivie, no P at all, and Her- it was right on the money. My Ki67 was 50% from the hospital. I don't think Oncotype checked the Ki67. My gene's were high. I wonder if I would classified as Tripel Negative? Does anyone know?

Dx 11/30/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2-

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