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 17, 2010 12:31PM mmm5 wrote:

Terry

I was wondering why you got 10 rounds of TCH most of the gals with same stats had 4 or 6 what was the reasoning? Makes me think I missed something. As far as your 47 recurrence score it is pretty typical for those that were Her2, they did this test without the benefit of knowing what Herceptin would do.. Did you have a high level of estrogen positive or on the lowere end.

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jan 28, 2010 05:37PM paml wrote:

I have a high oncotype score also. It was 52 which really freaks me out. I am not HER2 postive.

I got a double mastectomy/ 8 rounds of chem and 33 rads. I am not  what you would say a long term survivor( finished treatment in July of 09.) but I certainly hope to be.

Dx 12/12/2008, ILC, 5cm, Stage IIIB, Grade 2, 2/9 nodes, ER+/PR+, HER2-
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Feb 2, 2010 01:16PM 1OUgirl wrote:

Hi paml.  I also had a score of 52 back in April of 2005.  So far I'm still doing great.  That was a freak out score for me also but as time goes by it will get much better.  I did 8 rounds dose dense chemo and 33 rads also.  Now I'm on Tamox.  My doc reminds me time and again that JUST BECAUSE the score is 52 dosen't mean we are doomed.  What it means is 'our chemo will be much more effective for us' and the chemo is not a waste of time for us as it might be for someone with a much lower score.  The MOST important stat is that we are still stage 1.  I am not HER2 positive either and I hope you and I both are going to be very very long term survivors.

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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Feb 22, 2010 04:41PM Katie2u wrote:

I can relate to waiting for the other shoe to drop.  There is a heaviness that doesn't want to leave.  I heard a commercial saying that taking Aspirin is reducing recurrence rates by as much as 50% and for a brief few minutes I felt complete releif when I ran to the cabinet to take my aspirin.  That "light" feeling of carefree was short lived.  I hope I can get it back again. 

Dx: 6/2008 IDC 1 cm, Grade 3, ER+, PR-, HER2 -
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Apr 30, 2010 10:44PM pjreeder wrote:

Hi There,

I had an Oncotype test score of 50. I am ER+,PR+ HER-. I was stage IIb, grade 3 and have passed the menopause (age 59). I was pretty scared too.  Had a mastectomy and no radiation due to immune problems.  Did 8 rounds of chemo and tried Arimidex.  That stuff is nasty, and so I have changed to Femara.  I have itchy skin, get dizzy, short term memory problems, chemo coldness in hands and feet, neuropathy, achy joints, muscle cramping in legs at times and have little energy.  I am putting on weight too.  I am certainly tempted to stop the drug but am wondering what my survival rate will be without it.  There is supposedly a 34% chance of recurrence without both the infusions and the five years of pills.  I wonder if that is a sure thing or if I can take my chances by not continuing the pills.  Anyone else in my boat?  

PJR 

Dx 8/24/2009, IDC, 2cm, Stage IIB, Grade 3, 1/1 nodes, ER+/PR+, HER2-
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Apr 30, 2010 11:39PM RaiderDee wrote:

As much as I hate to admit it, I've got you all beat.  The lab messed up my path report and we didn't know I was triple negative until I got my oncotype score back.  It was 84.  Normally they won't bother doing an oncotype test on a triple negative person because it's a given we will do chemo,  Thankfully the test score raised a huge red flag and I was retested and dx'd as triple negative.  I know it's neither here nor there because chemo was in my future regardless but getting a score of 84 is not comforting in any way.  I had a bmx and 4 rounds of AC and 4 rounds of Taxotere,  I'm not a long term survivor yet but I sure plan to be one.  Good luck and good health to everyone.

Dee 

EVERY month is breast cancer awareness month once you have it. Dx 5/18/2009, IDC, 3cm, Stage II, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Nov 15, 2010 10:01AM artteacher wrote:

I'd like to read more encouraging stories from long term survivors with high oncotype scores.  I just, minutes ago, found out my score is 54.  I actually started with chemo (TAC) then discovered the tumor was growing, not shrinking, so they went ahead with a mastectomy and sent my tumor to Rational Therapeutics for tumor profiling.  Found out that it was resistant to all of the traditional chemo choices for BC.  Crap.  So now I will see my onco tomorrow and find out what other choices are out there for me.  I may be taking a trip to Houston for more help.  Any recommendations on that aspect?  I hate feeling like a ticking time bomb.  I've really GOT to get a grip on the fear and negative thoughts.

Thanks, Patti

www.pattihatescancer.blogspot.com Dx 7/27/2010, IDC, 4cm, Stage IIB, Grade 3, 2/5 nodes, ER-/PR-, HER2-
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Nov 15, 2010 10:06AM Makratz wrote:

((((((Patti))))))

Sorry I can't help but wanted to send you a cyber hug.

Linda...♥♥♥ Never, never, never give up ~ Winston Churchill
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Jan 4, 2012 10:43AM Katiep1388 wrote:

Hi ladies. Im 23 years old diagnosed August 2011 my oncotype score was 50 and im totally freaked out im ER+ but the oncotype said i was ER- anyone know what thats about?.. Im doing 4 AC / 4 Taxol and almost done.. Im doing my mastectomy in february prophilactic on the other side even though im negative for the gene mutations... A doctor told me the oncotype RRisk predicted is for distant cancer reccurance which totally freaked me out. Being node negative.... Do any of you know the %!after chemo an rads with a score of 50?????

Katie.P Dx 8/10/2011, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Jan 4, 2012 10:44AM Katiep1388 wrote:

Hi ladies. Im 23 years old diagnosed August 2011 my oncotype score was 50 and im totally freaked out im ER+ but the oncotype said i was ER- anyone know what thats about?.. Im doing 4 AC / 4 Taxol and almost done.. Im doing my mastectomy in february prophilactic on the other side even though im negative for the gene mutations... A doctor told me the oncotype RRisk predicted is for distant cancer reccurance which totally freaked me out. Being node negative.... Do any of you know the RR after chemo an rads with a score of 50?????

Katie.P Dx 8/10/2011, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-

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