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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 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.

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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Posts 601 - 621 (621 total)

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Jul 30, 2021 07:30PM Murfy wrote:

Nottoday, are you done with your AI? My plan is to have ctDNA measured when I hit year 5 of my AI. That would be the only reason I might stay on this hell drug beyond 5 yrs. Hoping in the next 1.5 yrs that test becomes more mainstream.

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/13/2017 Mastectomy: Left Chemotherapy 1/12/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/29/2018 Aromasin (exemestane)
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Jul 31, 2021 07:23AM nottoday wrote:

Hi Murfy,

I did 5 years of AI, finishing in March 2020. My MO and I discussed the evidence we could find, and it did not indicate a big benefit beyond 5 years. I was getting concerned about bone density issues, and general fatigue.

Are you able to get your ctDNA measured at your medical center? If so, maybe I'll go there.

This kind of testing seems to have been in development for years without having yet become routine.

Hang in there on the AI! Sorry it has been difficult.

Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/22/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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Aug 4, 2021 10:43AM pt1234 wrote:

Hi

With on other score 50 was there any recurrence

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Aug 15, 2021 02:47PM Emily21 wrote:

Looking for some more information from high oncotype score survivors. Any node positive survivors out there. 🙂

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Aug 16, 2021 01:28PM Emily21 wrote:

Bump

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Aug 25, 2021 02:27PM Emily21 wrote:

Any new high oncotype scores out there especially those who may have positive nodes as well!

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Aug 26, 2021 08:08AM Boston12 wrote:

My Oncotype was 35, stage 2A with a positive node. Right now I'm three and half years out and healthy. My oncologists watched me like a hawk for the first two years.

I've adopted every healthy lifestyle measure that's been recommended: weight loss, no alcohol, mostly plant-based diet, daily exercise, and never miss my meds - ever. I also joined a survivorship program that was very helpful and we formed a support group after it ended that has continued. That's been hugely helpful for my peace of mind.

I knew I needed chemo from seeing slides of the node. The pathologist was actually the one who told me I needed it. I don't know why they bothered with the Oncotype. Frankly, it did nothing for me except raise my anxiety.

The pathologist gave me way more information about my situation than the Oncotype report, which I found very disappointing. When I tried to get more specific information about my scores from the company, they were very resistant and I had to go through a number of channels before they released my medical information to me. I was not impressed. While I recognize that trials have been done on the test, all it did for me was delay the start of treatment for 3 weeks.

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Aug 26, 2021 05:16PM UpstateNYer wrote:

Hello Boston12,

So happy to hear you are doing so well. We are certainly not defined by our Onco scores! I , too, met with my wonderful pathologist who went over my slides with me as well. But, the Onco score gave my oncologist the information needed to recommend chemo. I was a high 48. There was no indication of me needing chemo prior to receiving the Onco result. But, over 2 years later, I am doing well and feeling pretty good. Pat😊

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/2/2019 Lumpectomy: Right Chemotherapy 5/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/6/2019 Lumpectomy Hormonal Therapy 9/4/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019
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Sep 2, 2021 01:02AM Emily21 wrote:

I'd love to keep this page active. Any more high scores out there. 💐

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Sep 2, 2021 04:09AM Emily21 wrote:

Just out from oncology appointment, it seems my high oncotype score and recurance risk is due to 3 positive lymph nodes and lvi. I don't know whether that is good or bad, I have approx 15% benefit from chemo that leaves me with 27% risk of recurance in 9yrs. Fuck that's high.


Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Sep 2, 2021 12:25PM PatK wrote:

Was diagnosed stage 2 August 2018. Had lumpectomy no nodes involved. Surgeon assured me there was no need for chemo or radiation. But then the Onco score came back 48. Had 4 rounds chemo with 37 radiation treatments. I am going for my 6 month checkup in 2 weeks and praying that I am still negative. Only doing anastrozole

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Sep 4, 2021 11:02AM UpstateNYer wrote:

Hi Patk,

My diagnosis is similar to yours. I had lumpectomy (3 times due to unclear margins), chemo, rads, negative nodes, stage 1. The good news is that Chemo is giving us a high percentage of effectiveness for higher onco scores . My Onco was 48 also. Also taking anastrozole. Hair is thinning and bone density loss as a result of anastrozole. Been on it 2 years. Seeing oncologist this month. Let us know how your appointment goes. Wishing you well.

Pat:)👍

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/2/2019 Lumpectomy: Right Chemotherapy 5/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/6/2019 Lumpectomy Hormonal Therapy 9/4/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019
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Sep 4, 2021 01:09PM PatK wrote:

Well prayers for all of us going through this. I have to say kind of forgot about myself because my husband was diagnosed with stage 4 colon cancer right after I finished my chemo. So he was going through surgery, chemo and I started radiation. Unfortunately he just passed away in April but I am still here. Kind of scared for my next appointments due to all the stress I have been under for the last few months but praying all will be OK. Wishing you the best as well

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Sep 4, 2021 01:24PM nottoday wrote:

So sorry about your loss, PatK. Will be praying for your health and wellbeing.


Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/22/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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Sep 4, 2021 02:16PM UpstateNYer wrote:

So sorry for the loss of your beloved husband. That certainly would account for higher stress levels. Try to make time for yourself. Mediation helps. My hubby lost his mother to Covid this past January. He contracted Covid in January with double pneumonia. He was sick over 3 months. Thank God, I never contracted it. Go figure. It was difficult taking care of him, but at least I was healthy enough to do so. He has recovered since, but still dealing with " long hauler" effects. I feel so badly for those people going through their cancer treatments during this pandemic. It has to be so difficult for them.

Keep the faith, will pray that your upcoming appointments bring good news to you.

Pat🙏

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/2/2019 Lumpectomy: Right Chemotherapy 5/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/6/2019 Lumpectomy Hormonal Therapy 9/4/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019
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Sep 4, 2021 02:25PM PatK wrote:

Again thank you so much and prayers for you and your husband.


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Sep 15, 2021 11:24AM Emily21 wrote:

How's everybody doing today, would love to keep this thread active x

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Sep 21, 2021 12:29PM UpstateNYer wrote:

Hi everyone,

I meet with my oncologist tomorrow for my yearly check up. Have many questions regarding getting the ctDNA test, as well as bone density result. Also wanted to go over my original gene scores that determined my high oncotype score. She's going to really love me tomorrow.😚

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/2/2019 Lumpectomy: Right Chemotherapy 5/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/6/2019 Lumpectomy Hormonal Therapy 9/4/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019
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Sep 21, 2021 12:48PM 2019whatayear wrote:

I hope she is delighted to talk with an engaged forward-thinking patient! Please come back and share how things go!

On the one hand I'd like to get a ctDNA test, on the other hand....

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Sep 21, 2021 02:08PM Murfy wrote:

Upstate, a number of us 'earlies' are curious about getting the ctDNA test. We also await what your MO has to say!

Good luck tomorrow!

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/13/2017 Mastectomy: Left Chemotherapy 1/12/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/29/2018 Aromasin (exemestane)
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Sep 21, 2021 08:03PM UpstateNYer wrote:

You are both so sweet, I will certainly let you know what she has to say. I am willing to pay for the ctDNA test if my insurance doesn't cover it. I think you were supposed to be Stage 2 for insurance to possibly pay for it. I feel that with my Onco score bring as high as it was, I may be a reasonable candidate for the test. Hope she will at least be willing to order it for me. Pat👍🙏

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/2/2019 Lumpectomy: Right Chemotherapy 5/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/6/2019 Lumpectomy Hormonal Therapy 9/4/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019

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