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 12, 2016 01:02PM ThinkingPositive wrote:

Boys62 - that makes me feel a little more hopeful for myself. But I guess my higher Ki67 can push me out there with chance of recurrence. I try not to think of it, I know I did chemo and am taking the letrozole, but I still worry. Others tell me that the Ki67 could have been alot higher, it was on the low end of high. What are the zoladex shots for? I am taking Letrozole (fermara) and I take Actonel once a month, as the Letrozole put me at the beginning for Osteporosis in my spine and osteopenia everywhere else. Also increased my cholesterol which I am trying to get down without adding another pill. We were even diagnosed around the same time.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 12, 2016 04:29PM rambros wrote:

thinking positive- zoladex stops my ovaries from working so I can take an AI (femara) instead of tamoxifen since I'm not naturally in menopause

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- Surgery 11/17/2014 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right) Chemotherapy 1/6/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Radiation Therapy Lymph nodes, Chest wall
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Mar 12, 2016 04:42PM ThinkingPositive wrote:

oh, okay. I had my ovaries removed even though I am post menopausal. I had a cyst on one that didn't go away so it was time after getting be to get rid of them! How are you doing on the Fermara. Are you on a generic

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 13, 2016 10:02AM rambros wrote:

Yes, I'm on generic femara and doing well so far. I've only been taking it for 3 months though, I took tamoxifen for 6 months before that. I have hot flashes and minor joint pain, but nothing bad enough to make me even consider not taking it. I know I have to take these pills for a long time so I will just learn to live with any of the side effects

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- Surgery 11/17/2014 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right) Chemotherapy 1/6/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Radiation Therapy Lymph nodes, Chest wall
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Mar 13, 2016 12:37PM ThinkingPositive wrote:

I agree with you Boys62. I would rather live with the side effects of joint pain then going through what we have in the past. I have been on it for 13 months. Hoping the joint pain doesn't get any worse

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 13, 2016 01:01PM - edited Mar 13, 2016 01:02PM by cajunqueen15

hi all and thanks for this thread! I did not have oncotype testing but my ki67 was 78! that combined with my two positive lymph nodes - I'm pretty sure my oncotype score would be off the chart!!! But means chemo is particularly effective. I elected the heaviest hit and pushed hard hard hard all the way through treatment to get done on time despite a plethora of problems . Thank you for sharing your stories those that are still disease-free.

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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Mar 13, 2016 05:57PM ThinkingPositive wrote:

what is the everolimus trial? I have similar pathology to you so wondering if I should ask about it???

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 13, 2016 09:29PM cajunqueen15 wrote:

hi think pos. They are testing Everolimus, which is currently approved for metastatic patients in early stage HR+/Her2- patients. You must take it in combo with an AI or Tamoxifen and be followed for 10 years. 50% chance of placebo. I am hoping to contribute something to research. :) I would ask your MO, they are still enrolling new patients.

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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Mar 13, 2016 10:01PM ThinkingPositive wrote:

cajunqueen15..was there some criteria you had to meet? I would assume that they are trying to see if both drugs work better than just an ai in preventing stage IV?? Side effects if any ?

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 13, 2016 11:46PM cajunqueen15 wrote:

Finished with trx and NED at the end. No previous BC trx. They want to see if Everolimus increases survival rates and/or time to recurrence. According to MO I will know if I'm getting the drug as it will cause mouth sores. You only take it for 1 year but are followed for 10. Monthly blood work. I'm hoping I get the drug and not the placebo.

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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