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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May 7, 2016 04:53PM - edited May 7, 2016 04:54PM by thinkingpositive

yes the Letrozole has caused weight gain and high cholesterol. Also caused osteoporosis in my spine. So I am hesitant sinceI have no other side effects other than minor joint pain when I get up after sitting about switching the Letrozole. Heard some horror stories about arimidex too! Not sure if the actonel causes high cholesterol with.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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May 8, 2016 12:57AM cajunqueen15 wrote:

It's all just fun and games, isn't it? If it's not one thing, it's another. Sheeeeeesh! Sending you hugs today!. :)

35 @ dx. BRCA2. Disciple, wife, mother of twins (6) & son (4), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 8/28/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/19/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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May 8, 2016 12:16PM thinkingpositive wrote:

I guess it's all better than the alternative ! Have a great day! First day the sun is out in a week here in Jersey

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Jul 26, 2016 11:32PM Scarysadday wrote:

I recently got my oncotype dx of 37! Recurrence rate with tamoxifen 27%, mo said with chemotherapy will reduce 3-5%! That's it? Just 3-5%!? she said even getting one percentage point is important ..but I thought chemo would at least drop it by half!? Why do chemo it's going to come back anyways...really need some advise from you ladies..how accurate is this oncotype dx test?thank you!

Oncotype DX 37, IDC, ER+PR+, HER2-, stage 1, 0/13 nodes, grade 3. 39 year old mommy from Canada
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Jul 26, 2016 11:43PM meow13 wrote:

mine was 34, had I very recent scare but still no cancer. I did not do chemo.

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Jul 27, 2016 07:43AM doxie wrote:

I thought that chemo knocked recurrence off by a third, so in your case 9% down to 18%. Maybe there is some other factor coming in to play for you?

Dx 8/2011, IDC, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 9/2/2011 Lumpectomy: Right Hormonal Therapy Aromasin (exemestane) Radiation Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 27, 2016 06:25PM - edited Mar 10, 2018 03:42PM by BarredOwl

This Post was deleted by BarredOwl.
Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Jul 27, 2016 10:38PM Scarysadday wrote:

  • thanks for the info barred owl. I actually saw my MO today and had a long list of questions, including her previous 'conclusion ' of my oncotype and recurrence rate/reduction. She did provide me with the report ( from my previous visit), and pg 1 clearly states my score, a graph to show recurrence rate with 5 yrs of tamoxifen only, on the graph it showed 27%(b-14 sample size) HOWEVER, I read through the report once I got home and on pg 2 of the report based on b-20sample size, shows 2 plotted lines one with tamoxifen, the other one with tamoxifen +CMF( which I know it's an older regiment)' and the recurrence rates are very different...from 19% reduced to 10% with tax +CMF...and should really be lower, as treatment s should be more effective nowadays . So I ask my MO today about the second page. Her reaction immediately showed me that it was a 'missed' on her end...she gave me some sort of explanation on why she said 3-5% from our last visit...very high level..but what's important is she confirmed the b20 sample is very valid...
Do you guys also get the b14 and b20 sample size report? And which one does your mo referto?
Oncotype DX 37, IDC, ER+PR+, HER2-, stage 1, 0/13 nodes, grade 3. 39 year old mommy from Canada
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Jul 28, 2016 02:44AM meow13 wrote:

My mo said chemo could take my risk of 23% to 10-15%. I just am not sold on the oncodx test results.

I can't believe how different doctors seem to approach the treatment plan. Mine thought at 53 in excellent health I should take the most aggressive chemo regiment but afterwards do AI treatment for only 5 years. Mo didn't think I should have bmx just because I had ilc and idc.

Aside from my horrible scare last week. I've been good and cancer free with no chemo. My scare was in my DIEP not my good side, go figure it was scared tissue. I hate this poking and proding and scaring me half out of my mind.

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Jul 28, 2016 01:58PM Moondust wrote:

Scarysadday, my second opinion expert at UCSF used the B-14 page to give me my recurrence risk of 14-20% This range spans the confidence interval for my score of 26 on the B-14 graph. He said chemo would reduce the risk by half, which makes my risk 7-10% because I'm having the chemo. Since the B-20 page is the only place that shows risk reduction with chemo, I assume that's where the estimate comes from. When I use the B-20 page to estimate my risk with chemo, it looks like 5-10%. That graph is hard to use. I wish it had a better grid. But at least it's in the right ballpark.

Having the two different pages with two different studies is certainly confusing

Alice. DX at 61. Onco score 26. Ki67 30%. Dx 12/7/2015, IDC, Right, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 1/15/2016 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 2/23/2016 Whole breast Hormonal Therapy 4/22/2016 Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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