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 11:54AM

Posted on: Aug 8, 2008 11:54AM

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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Mar 26, 2016 03:54PM thinkingpositive wrote:

Quinncat. Thanks for posting that. It makes me feel alot better!!

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/22/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Apr 25, 2016 08:42PM nottoday wrote:

IOUgirl,

Thanks so much for creating this thread and for continuing to post on it! I've learned a lot from everyone here and it has helped me navigate my own anxieties about my RS39!

Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/21/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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May 1, 2016 01:57PM cajunqueen15 wrote:

tkemp, hugs to you!!! Let me know how you are doing.😊

I am hanging in after my hysterectomy. But that's all it feels like I am doing. Praying for brighter days ahead.

Hoping to hear more good stories here.

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 1, 2016 05:21PM thinkingpositive wrote:

cajunqueen15. Hope you are doing well? Was there any reason you discontinued with the evirolimus? I was going to talk to my MO about it next week.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/22/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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May 1, 2016 05:50PM cajunqueen15 wrote:

thinking - I have hit my first real depression during this period. The instant menopause has proved really tough. I feel very unstable, angry, and sad.

Re: Everolimus, I had once of those rare but serious reactions nobody prepares you for. I started having symptoms mimicking a heart attack, called 911 and ended up in the ER. I was told there could be mouth sores, peeling hands and feet and reduced immunity. I was really frightened. I have never called 911 before in my life!

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 3, 2016 07:43PM QuinnCat wrote:

Notoday - we are both 39's! You are the only other 39 I have ever met. :) See my previous post on this thread for my stats. I suspect both of us got that score because of PR-.

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May 5, 2016 06:17AM thinkingpositive wrote:

cajunqueen15...hope you are doing better!! I go to my mo today. Have not dropped a pound and I am not eating very much so I know it's the Fermara. Depressed over the weight gain. I know cholesterol is probably still high due to the Fermara.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/22/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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May 5, 2016 09:46PM cajunqueen15 wrote:

Thinking, I'm sorry about the weight gain... That must be very frustrating. Can you try another AI? I take Arimidex... Other than initial depression now being relieved by Effexor, no SEs...yet.

I'm actually feeling much better. I started the Everolimus (which is specifically for high risk of recurrence patients) trial with xanax this time and no ill effects.

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 6, 2016 03:49PM - edited May 6, 2016 03:51PM by thinkingpositive

Cajun.. Glad you are feeling better. I mentioned not being able to lose any weight to my mo and he suggested if I wanted he would change me to anestrole?? Not sure how to spell it. Maybe the generic for arimidex? I told him I would think about it. I hate to change and end up with worse side effects. Right now I don't have any depression. Only minor joint pain when I get up and weight gain and high cholesterol. I also asked him about Prolia as recent studies have shown that to help with recurrence he said I could switch to that as well from actonel that I take

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/22/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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May 7, 2016 12:13PM cajunqueen15 wrote:

yes, anastrozole =Arimidex.

I'm not taking anything for nine density yet - I'm afraid of the jaw necrosis thing. I need to go to the dentist and have a mercury filling replaced first, ugh.

Is the actonal causing the high cholesterol too? Everolimus can do that too...I get monitored regularly now.

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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