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 10:54AM

Posted on: Aug 8, 2008 10:54AM

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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Sep 12, 2008 05:51PM - edited Sep 18, 2008 12:43AM by LizinKS

This Post was deleted by LizinKS.
Dx 5/16/2008, IDC, <1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Sep 15, 2008 09:21PM Katie2u wrote:

Hi Liz:

   My score came back the same as yours on the OncoDX 30.   I had 1.1 cm of IDC, Stage 1, Grade 3 with associated DCIS.   When my oncologist called me he was concerned about the 30 score and said he personally would do chemo because with Tamoxifen alone my chances of recurrence was 20% and this would lower it to 12%.   I got a second opinion who felt chemo was a necessity for that score.  31 and up is considered high risk and the average high risk person scores exactly 31 according to the OncoDX site if I read it correctly.   I would get a second opinion.  The test will also tell you if there is a mutation or overexpression of the P53 gene.  From what I've read, Adriamyacin may not work in that case scenerio and a taxane drug (Taxotere and Taxol) with Cytoxin may provide more benefit.  I would think twice about skipping chemo.  Good luck!

Dx: 6/2008 IDC 1 cm, Grade 3, ER+, PR-, HER2 -
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Sep 17, 2008 11:11AM - edited Sep 17, 2008 11:13AM by 1OUgirl

Thanks for the response ladies.  I had Adriamyacin with Cytoxin for the first 4 chemo treatments and now I am finding out that Adriamyacin does not help some individuals.  I did have Taxotere after the AC and I believe that is defintely recommended.  If 31 is the average high risk score then I am most certainly high risk with a score of 52.  I would never have turned down chemo.  I said "give me anything and everything that might help me out".  Didn't even have to think about it.  I heard the score and said "Chemo, here I come". lol

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 27, 2008 12:04AM FacingLIFE wrote:

My mast was Oct 31,   2006 followed by dose dense AC then 1 Taxol (to which I had a huge reaction) and switched to Taxotere for 7 more infusions. I had to stop a little early because of staph, strep, thrush and numerous side effects that were making me very ill. 

 My onc put me on Arimidex which I took for 7 months. I hate the stuff. It turned my 61 year old body into a 90+ year old body. My joints were extrermely painful. Walking and rising from a chair were really difficiult. After 7 weeks off of Arimidex, I was put on Tamoxifen. I have stopped taking it due to extreme cramping in my upper thighs. 

 Are there any "high" risk Oncogene scoring patients who are not taking adjunctive hormone therapy? I have started to think that quality of life is more important than quantity. 

Dx 9/25/2006, IDC, 2cm, Stage IIA, Grade 2, 0/5 nodes, ER-/PR+, HER2-
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Oct 27, 2008 08:06PM Katie2u wrote:

Hi Facing Life:

     What was your Onco score?   I saw a Chinese Herbalist who will give me an herb that is an Aromatase Inhibitor like Arimidex.  He is also going to give me other herbs to counter the side effects of Arimidex.  If you would like to know about him, please private message me.  He is in NY.  I flew a thousand miles to meet with him.  He is well known.

Katie2u

Dx: 6/2008 IDC 1 cm, Grade 3, ER+, PR-, HER2 -
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Oct 28, 2008 02:11AM FacingLIFE wrote:

My onco score was 32. My oncologist called me late on a Friday afternoon to say the test score was high and indicated chemo would be appropriate. She "neglected" to say what "high" meant. I went to the Oncogene site and found the scores and their meaning. High begins at 30 and continues to 100. Finding out that I was near to the beginning helped only a little with the worry of recurrence.

Does the Chinese herb cause side effects similar to Arimidex? Arimidex gave me terrible joint pain.

I'm in California so traveling to NY doesn't appeal to me but what is life worth? Perhaps there is a Chinese Herbalist here that is also knowledgeable. I'm 15 minutes from San Francisco. Any ideas.

 Thanks for your words of wisdom.

Barbara 

Dx 9/25/2006, IDC, 2cm, Stage IIA, Grade 2, 0/5 nodes, ER-/PR+, HER2-
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Oct 31, 2008 09:53AM Katie2u wrote:

HI Barbara:

     I'm going to private message you.

Katie2u

Dx: 6/2008 IDC 1 cm, Grade 3, ER+, PR-, HER2 -
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Nov 12, 2008 04:08PM lili7 wrote:

Please private message me ... at lerakny@yahoo.com thank you
LILI
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Sep 30, 2009 11:06AM Sukiann wrote:

Hi, I want to bump this thread up to see if anyone else out there has a high oncotype score and hasn't had a recurrance.  My oncotype is 32 and I just finished treatment.  I feel like I'm just sitting here waiting for the cancer to come back because of the score.  I did 4 rounds of TC and 33 rads. Also lumpectomy for a 2.5 cm tumor.  ER+, PR-, Her2-.

Dx 1/14/2009, IDC, 2cm, Stage IIA, Grade 2, 1/9 nodes, ER+/PR-, HER2-
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Jan 15, 2010 05:36AM talbrig13 wrote:

My oncotype was 47...I am still recurrence free.   But like you, I keep waiting for the other shoe to drop.    I am 3 years out.

I had lumpectomy, 10 rounds of TCH, and radiation.    Herceptin for a year and am now on Femara. 

Terry :) Dx 12/8/2006, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+, Surgery 12/27/2006 Lumpectomy: Right; Lymph node removal: Right, Sentinel Targeted Therapy 2/7/2007 Herceptin (trastuzumab) Chemotherapy 2/7/2007 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 7/11/2007 Whole breast: Breast, Lymph nodes Hormonal Therapy 8/31/2007 Femara (letrozole)

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