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Topic: Long term "high oncotype test" survivors

Forum: High Risk of Recurrence or Second Breast Cancer — Managing high recurrence risk of developing a second breast cancer.

Posted on: Aug 8, 2008 10:54AM

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.

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Jul 31, 2018 03:02PM DebAL wrote:

Rimroc, I agree with scrafgal. You mentioned already being 5 weeks out from surgery. I started chemo at 6 weeks. I also agree you fall in that 60 day window. Maybe a nurse navigator can help direct you to a second opinion? It's really important that you feel comfortable with your plan. Maybe your breast surgeon can facilitate things along and help line up a second MO opinion?

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/12/2018 Mastectomy: Left, Right Surgery 2/12/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/14/2018 Arimidex (anastrozole) Surgery 8/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/20/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Jul 31, 2018 08:16PM RimRoc wrote:

thanks Scrafgal-- I appreciate your insights. The way I see it, the procedure that most disturbed the intact tumor was the core biopsy, which was May 22 or >60 days ago. The mastectomy "should" have taken out the entire mass of glandular tissue, tumor intact. So if any cells escaped to cause trouble, I would guess it was from the biopsy.

My plan of the moment is to start chemo in the next week or two, and go for a second opinion when the appointment finally rolls around. If I hear profoundly different results, I can always just leave the practice I'm in locally...but if I get the same basic message I guess I'll just stay the course. So much is so indeterminate...very frustrating and unsettling.

thanks again for your reply

Surgery 10/23/2013 Lumpectomy: Left Dx 10/24/2013, DCIS, 1cm, Stage 0, Grade 3, ER+/PR- Radiation Therapy 10/31/2013 Dx 5/22/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- (IHC) Surgery 6/26/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel; Mastectomy: Left Hormonal Therapy Arimidex (anastrozole)
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Aug 6, 2018 07:01PM susie_2017 wrote:


I'm sort of in the same boat as you. My breast biopsies stated I was Er+, Pr+ and Her-, grade 3, stage 1. I had lumpectomy and my lymph nodes(4) were clear. Then I waited for onco-score to come back. It was a high 44. Took me by surprise because my MO thought I wouldn't need chemo as I caught it early. However, my breast surgeon thought it was strange that my MO wasnt preparing me for chemo since I was a grade 3, usually a sign of triple negatives. So my oncoscore also showed me as triple negative when the actual tumor was dissected. When I see my breast surgeon she said the biopsies have the highest chance of human error and I was weakly positive. Therefore I should go by the actual tumor results of triple negative. My MO says the opposite, he said we must treat as positives. I did 6 months of AC+T chemo, and 20 days of radiation. I did get my ovaries taken out but not because I believe I'm positive hormones but because I simply didnt want a period anymore! So my big question is do I take the Arimidex or not. My DEXA scan shows me having osteopenia. I wish there was one guideline and all the docs followed it cause I'm so confused as to why I got AC+T and others didnt.

Oncotyping = 44 Dx 3/24/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 5/5/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/23/2017 AC + T (Taxol) Radiation Therapy 1/4/2018 Whole-breast: Breast
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Aug 7, 2018 12:28PM edwards750 wrote:

Dang Susie your doctors are all over the place.

I had osteopenia too - now have osteoporosis. Ugh. I took Arimidex for 1 year and then my MO put me on Tamoxifen. I had to question her about it because Arimidex attacks the bones so I had a year of that. I would talk to my MO and express your concerns about taking it.

Thing is they should already know likemy MO.


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Jan 4, 2019 11:31PM Meow13 wrote:

I am a 7 year survivor with oncodx score 34 for invasive cancer. I did 4 years AI drugs no chemo.

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Jan 5, 2019 04:01AM kaylie57410 wrote:

Good morning to all..I was dx stage 2 18 months ago-lumpectomy-sentinel node positive--grade 3; hormone positive-was offered 4 TC or DD ACT- chose tc as I was 68-have 15 year hx mild hypertension- a cardiac risk factor-and on researching learned the ACT would have higher risk of hair loss-this more upsetting than the dx- my oncotype was 45--I chose the Tc and did Cold capping with Penguin caps= saved 75-80 % of my hair--I accepted that the TC might be about 3 percent less effective for 5 year disease free statistics,but willing to be at peace with this choice as saving my hair made all the difference for me coping emotionally. Had I been 50 years old , may have chosen differently.

I then had full course of radiation including nodes and "boost" to the tumor site-I have just passed the 1 year point on Letrozole with only mild side effects. I do have some mild hair shedding starting at 5 months in-hoping it will level off- will probably have to stay on it for 7/8 years per the newer guidelines.

I am also in the Pallas trial on the letrozole only arm' evaluating the addition of Ibrance for prevention of recurrence in early stage-will be another year and a half before results start coming out.

We each have to make the choices we can be ok with. I am disease free now- a year and a half out and moving on with life.a day at a time..best to all,Kaylie

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