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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Jan 4, 2012 01:48PM Racy wrote:

Katie, google cancermath and you can input the details of your cancer and treatment and it will give you some predictive info about recurrence risk, independent of oncotype.

So sorry you are facing BC at only 23. That must be hard in so many ways.

Wishing you well.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Feb 25, 2012 10:23AM squidess wrote:

I'm closing in on the 5 year mark.

Don't let that score eat you up inside, ladies. Keep in mind that what it is really saying is that with TAMOXIFEN ONLY (no chemo) we're at high risk of recurrence. That's also on an older CMF regimen which is less effective than the chemo you'll likely receive. Put another way, it identifies those of us who are known to benefit hugely from chemo.

The newer chemo regimens are more effective than CMF. Aromatase inhibitors are likely more effective than tamoxifen. Of course there are no guarantees with this disease, but you have NOT been given a death sentence. No no no! Stop freaking out!!!!! Or I will come over to your house and personally kick your backside with my pink blingy cowboy boots. And let's not go there because - dang it - they really hurt my feet.

Personally, I find the thought that I benefited hugely from chemo very reassuring. 

2007: 2.4 cm ER+/PR- Her2- Oncotype: 35. Flat-chested and more Bada$$ than ever.
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Mar 6, 2012 07:53PM - edited Mar 19, 2012 03:38PM by QuinnCat

Thanks Squdness- I needed to hear this. Bumping for more stories on this topic.

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Apr 6, 2012 05:13PM Rose12 wrote:

My Score came back 61. I was not happy at all about that. I only planned for radiation. The doctor called me and asked if I knew of anyone I would like to do chemo with. I guess I had no choice in the matter. Starting next Wed. T/C X 4. Then 6 weeks radiation. Got to do it.

Dx 11/30/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2-
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May 18, 2012 08:22PM vickilind61 wrote:

Just found this thread.  My score was 51, which I know is high.  I should be starting my chemo at the beginning of June.  I have an appt with my Med Onco on Monday to discuss the path report from my mastectomy, which included some node activity.  I haven't said this to ANYONE in my circle yet, but the onco score has me more freaked than anything, and now add to that node activity and I am pretty freaked.  I know I will go on Herceptin and Tamoxifan and not sure what kinds of chemo she will want or how many rounds. 

Rose, I agree with you; got to do it.  Whatever it takes.

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 17, 2012 09:10PM Medwick711 wrote:

My oncotype test came back as a 22. I am ER+PR+ and Her negative.my lymph nodes are clear as are my margins. I am a stage 1 grade 2, 53 years old and no history of cancer in my family. Can anyone give me feedback about chemo. I am definetely leaning towards NO chemo, but will do the radiation and a hormone pill. Any feedback would be appreciated.


Thanks
Patricia

Dx 5/18/2012, DCIS, 1cm, Stage I, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 6/20/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/13/2012 Breast
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Jul 24, 2012 03:58PM encoremom wrote:

Hi Patricia.  My dx was similar to yours although I'm ER+PR- with a family history of BC.  I had the BRCA test and was negative but opted for a oophectomy anyway.  I had two tumors (I believe only one was tested) and my oncotype test came back as 24.  I was 52 at the time of my diagnosis, was HER2 negative, stage 1, grade 2 with no lymph node involvement.  I had a BMX, did not have chemo and have been on Arimidex for almost 4 years now.  I was told I would need radiation if I had a lumpectomy but I opted for the mastectomy.

I was treated at Johns Hopkins where they stress that chemo is not recommended unless it is clearly indicated.  My oncotype test was in the intermediate range and based on other factors (size of tumor(s), no lymph node involvement, age, etc), the doctors there recommended no chemo.  They told me that based on their estimates, the chances of serious side effects from the chemo were just slightly less than my estimated benefit and they recommended that I not do chemo.  I chose to follow their recommendation although they told me I could have chemo if I really wanted it.   I think each situation (and personal preference) is different but I wanted to share my journey with you.  Maybe try asking your doctors what the risks of chemo are for you versus the relative benefit.  This intermediate oncotype range is a bear....  

Sending good thoughts your way.

Debbie

Debbie - BMX, DIEP and Arimidex. Dx 8/8/2008, IDC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2-
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Jul 24, 2012 09:15PM QuinnCat wrote:

Vicki - but is your oncotype score really that high for Her2+ which is mitagable with Herceptin.  It is my understanding they don't do Oncotesting on Her2+ because they always use Herceptin and with Herceptin, they need to use chemo, so there is no reason to do Oncoscoring.  Also, as far as Her2+, I've seen scores in the 70's, so maybe yours is not so high in the Her2+ world?

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Jul 24, 2012 10:04PM cookiegal wrote:

I'm surprised so many her2+ people are getting oncotyped. None of the graphs include people who had Herceptin, so I am not sure the score really reflects prognosis.

You deserve a cookie!
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Jul 25, 2012 07:29AM 1OUgirl wrote:

Hi Vicki, I had a score of 52 and it was the one number that had me freaked out for a while too.  But it has now been 7 years and I'm still cancer free.  I am so glad that I got that test done because my doctor would never have given me chemo without it.  I was Stage 1, 9mm tumor and no nodes affected.  I had 8 rounds of chemo and radiation.   I was my doctors FIRST high score.  She was in total shock because her words to me were "Let's do this Oncotype DX test just to be sure but I have never had a score come back high and I don't expect your's to be the first".  I have since asked her if there have been any onco test scores as high as mine and she told me "yes, but very few".  I am still going to my oncologist every year.  She STILL wants to watch me.  I figured after 5 years my appointments with her would be halted but she wants to continue seeing me for a while longer.  Here's hoping you have great success with few side effects.

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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