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 13, 2013 09:26PM loral wrote:

Did you have chemo, radiation and tamoxifen. My score is 34 and I was just diagnoised on 9/11/12.

Oncotype DX 34....When NOTHING is sure, EVERYTHING is possible ,so NEVER, EVER, GIVE UP HOPE!! Dx 9/11/2012, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR-, HER2- Surgery 10/9/2012 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Hormonal Therapy 12/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 14, 2013 06:15AM the_roadshow wrote:

Very grateful to IOUgirl for starting this post and continuing to contribute to it. Based on the results of the Oncotype DX test I have opted to have chemo, which I'm due to start tomorrow. If this doesn't propel me into the menopause (I was 39 when diagnosed and had surgery on my 40th birthday) I will request either an oopherectomy or Zoladex. I would prefer an ooopherectomy though to avoid the possible side effects of Zoladex which I believe is arthritis. Hang in there ladies.

Oncotype DX score 44 Hormonal Therapy 1/23/2013 Dx 1/24/2013, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 1/27/2013 Lumpectomy: Left Surgery 1/27/2013 Lymph node removal: Left, Sentinel Chemotherapy 3/14/2013 CEF
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Mar 14, 2013 12:15PM 1OUgirl wrote:

I had adriamycin/cytoxan 4 times (dose dense - meaning every 2 weeks instead of the conventional 3 weeks) and then I had taxatere 4 times dose dense.  Then radiation and since I wasn't menopausal I had Tamoxifen for 5 years.  The dose dense method knocked me on my rear.  By the time I was finished with chemo, it took at least a month to begin to feel like I had any energy at all.  The doctor warned me of this before hand but told me that the studies she had been looking at showed a significantly better success rate against the cancer doing the dose dense method because essentially the chemo is hitting at the cancer cells more relentlessly. I had a choice which method to use but I went with her advice and did dose dense.  Incidentally, my dear sweet mother-in-law was going through breast cancer at the exact same time and she choice the every 3 week method and she is doing great also.  Another consequentially important benefit of the dose dense method is that I went through the chemotherapy process faster.  In the beginning I worried SO MUCH about that one little detail of my breast cancer....the Onco score of 52.  It is such a waste of time.  It is what it is and lets just be glad we absolutely know we are one of those that need chemotherapy.  I am feeling great and doing great, as is my mother-in-law.  I have met ladies that were on the fence about chemo because they were in the mid-range of the onco test score.  I truly do not know what I would choose in their situation but I hope all of us on this thread have great success fighting this awful disease.

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 14, 2013 12:27PM QuinnCat wrote:

Like you IOUGirl - I had DD AC/T and DD Taxol.  My MO wanted to throw the kitchen sink at my Stage 1 high oncotype BC.  (I had an additional 6 weeks of Carboplatin, as brca cancers, specifically, respond to platins.)  I finished August 1...by January 15, I totally got my mojo back, but with some residual and annoying neuropathy in my feet (taxol related).

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Mar 14, 2013 02:43PM nancyhb wrote:

Like IOUGirl and Kam170, I too had dd AC (4 rounds) and dd Taxol (6 rounds).  I'm actually part of a clinical trial on the efficacy of dd Taxol (there's a convenience factor in not having to go for chemo every week for 12 weeks, but rather every other week for 12 weeks).  DD put me on my butt, too - and I really struggled with SEs - but wanted to throw everything at this with a score of 42. 

It is what is is.  It'll come back...or it won't.  Only time will tell.

"Be happy for this moment. This moment is your life." - Omar Khayyam Surgery 12/5/2011 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole breast: Breast, Lymph nodes Surgery 2/15/2016 Lumpectomy; Lymph node removal; Lymph node removal (Left) Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy; Mastectomy (Left); Reconstruction (Left): DIEP flap Chemotherapy 6/2/2022 Surgery 6/2/2022
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Mar 14, 2013 04:23PM QuinnCat wrote:

Hey Nancy - I haven't seen you around.  I remember reading something on your blog about struggles with Tamoxifen.  Do you continue taking it??

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Mar 14, 2013 04:59PM nancyhb wrote:

Kam - I started Tami the week after chemo ended, and stopped three months later because the SEs were so bad.  Took a one-month holiday, then started Aromasin - THAT only lasted about 6 weeks before it was in the trash can.  Took another holiday, now back on Tami - and doing relatively well, I must say.  My MO thinks the original SEs might have been related to chemo and not Tami; all I know is that the pain is greatly diminished, and my butt has gained about 25 pounds.  I hope to stay on it as long as possible.

"Be happy for this moment. This moment is your life." - Omar Khayyam Surgery 12/5/2011 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole breast: Breast, Lymph nodes Surgery 2/15/2016 Lumpectomy; Lymph node removal; Lymph node removal (Left) Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy; Mastectomy (Left); Reconstruction (Left): DIEP flap Chemotherapy 6/2/2022 Surgery 6/2/2022
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Mar 14, 2013 05:09PM - edited Mar 14, 2013 05:10PM by QuinnCat

So glad it worked for you the second time - as my gyn/onc says, it is more important than chemo!  I'm on the generic Aromasin (exemestane) and continue to work through the SE's, the most notable, hand swelling when walking and stiff finger joints after not moving for awhile (like after sleeping).

Sorry about the 25 lbs.  I seem to have the opposite thing going on (which is good), but have changed my diet and picked up on the exercise.  My gf said she gained weight on Tami too and it stopped when she switched to Arimidex.

I just looked at your blog again and am so suprised you get tumor marker tests and bone scans.  Is that related to your clinical trial?  My MO doesn't do anything but general blood work on my quarterly visits.  I worry about this light touch, given my brca status and prophy not guaranteeing against a second primary, let alone recurrence.

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Mar 14, 2013 08:48PM nancyhb wrote:

If I remember correctly (and chemo just killed my memory cells!) my MO only did the tumor marker test and bone scan because I was having so much pain on the Tami.  He just didn't seem to think it was the medication and did the tests "just to be sure."  He doesn't put much stock in tumor marker tests - says they are simply unreliable.  I doubt I'll get either again unless I have some sort of symptoms.  It does seem kinda weird to me, too, that doctors don't do more testing.  I know it won't prevent anything, but I'd really like to know early in the game, rather than later (or too late).  I hope your MO picks up the pace a little.  Will you have "big tests" at your 1-year appointment, by chance?

"Be happy for this moment. This moment is your life." - Omar Khayyam Surgery 12/5/2011 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole breast: Breast, Lymph nodes Surgery 2/15/2016 Lumpectomy; Lymph node removal; Lymph node removal (Left) Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy; Mastectomy (Left); Reconstruction (Left): DIEP flap Chemotherapy 6/2/2022 Surgery 6/2/2022
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Mar 14, 2013 09:16PM QuinnCat wrote:

Nancy - I think the message I get is "until I have symptoms."  And my MO feels the same about tumor markers.

When I was originally dx'd, Stage 1, Grade 3, I was scheduled for a lumpectomy for 12/12.  My brca results came in on 12/7 and that operation was cancelled.  All of a sudden my BS was sending me for Pet/CT Scans (shoulders to knees) and then all of the ovarian ultrasounds.  The latter I understood, given the risk of ovarian cancer, but I was never quite clear why brca positive, all other things being equal to pre 12/7 dx demanded a PET/CT Scan.  I've never figured out the rhyme and reason of these things!

Another BCO member gets scans every year.

I think if I insisted, she would do something to ease my worries.  Thus far, my insurance hasn't balked at anything ordered.

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