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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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Jun 21, 2019 01:36PM HikingLady wrote:

Fairydragonfly Thanks for sharing all the context and history. I am glad we have each other to support and listen and contextualize on this site, and this thread.

"Weakly positive ER" is also what I have--I think mine is 14% I would have thought that AI treatment wouldn't matter that much, but my MO was very clear that it has a hugely important part in my treatment plan. Basically, it's a tool, and we need all the tools we can get, I guess is his point.

I know that as I was learning more details about my DX, each additional fact was certainly more clarifying, AND more worrisome, so I truly empathize with your anxiety about all this. On the other hand, it made the path forward quite specific, and there was a reason for each TX choice. That gave me some (just a little, but some!) peace of mind. It helps me that my MO is compassionate and kind, so when he gives difficult news and information, he also throws in a good helping of Hope, which I am happy to hang onto!

I love it that my DH is not full of platitudes and knee-jerk reactions of false comfort. When I share my real fears and my real anxieties, he usually says, "Yes, of course. It's normal for you to feel that way. This is serious stuff. You have every right to be angry/scared/overwhelmed/derailed, etc." My husband has a long career as a hospice nurse and nurse manager. He knows cancer is terrifying, and he knows that my anxiety and terror are justified.

ON THE OTHER HAND, the glass is also half full. I appreciate the fact that even though my DX is serious, so is my TX plan. It's aggressive, and it has a really good shot at working. I'm going forward now, healed and mostly recovered, as the New Me, and walking that weird tightrope between Still Furious That This Happened and Extremely Grateful To Be Alive.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/8/2003 Lumpectomy Radiation Therapy 6/9/2003 3DCRT: Breast Hormonal Therapy 8/7/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 21, 2019 08:00PM - edited Jun 22, 2019 10:57AM by Fairydragonfly

HikingLady - both my surgeon and oncologist said that no matter how weak, endocrine/hormonal therapy was needed. I do agree and I want to and will use any and every tool available. I'm lucky that my oncologist is pretty caring too.

Now just waiting for my first chemo session to be scheduled. Threw myself a "Kick Cancer's A$$" party tonight. It lifted my spirits immensely.


DX at age 43. Weak staining ER, Oncotype score 50, BRCA1 mutation. Lost both parents to cancer in 2018 Dx 4/17/2019, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR-, HER2- (IHC) Surgery 5/1/2019 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 21, 2019 10:38PM moth wrote:

I'm a weak ER/ Oncotype says TNBC (scored as 65 but also says it's not validated for TNBC) and my medical team said they could not make a recommendation either way about hormonal therapy. After much discussion, we decided against it. I'm 18months out from surgery.

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Jul 22, 2019 07:06AM Scrafgal wrote:

BUMP

There are a couple of similar threads starting up...high oncotype survivors need to find each other....enjoy this thread!

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/15/2017 FAC Hormonal Therapy 9/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/13/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 3/16/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 22, 2019 07:33AM - edited Jul 22, 2019 07:46AM by 1OUgirl

Hey Ladies!!! It's 1OUGIRL here. Just wanted to touch base and say "I'm still doing great!" To refresh your memories, I started this thread because I didn't know a single lady that had breast cancer and had a high onco score and I had no one to commiserate with. I had an Oncotype score of 52 in 2005. I was treated with the whole medical protocol that was available at that time such as chemo, radiation and 5 years of Tamoxifen and I just had my bi-annual MRI and everything is still looking great. I feel great too. I love to hear about other ladies that have been cancer-free for years who had a high onco score. When reading this thread i have noticed that there seems to be different things that doctors are exploring with breast cancer patients from when I was diagnosed. When I had breast cancer, my oncologist didn't know much about what this score meant and I at that time spoke to numbers of breast cancer survivors and NO ONE seemed to know anything about the Oncotype Score Test. I am so thankful there are more avenues for those diagnosed with breast cancer and getting a high score such as I did. I remember having dose dense chemo back then and even THAT was kind of new on the horizon. I like to jump on this thread every now and again to hopefully lift another ladies spirits and to remind you that we are NOT just an onco score number and we have every reason to feel hopeful and confident that we can survive this period of uncertainty and go on to have a fantastic life.

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Jul 22, 2019 07:49AM - edited Jul 22, 2019 07:50AM by Scrafgal

1OUgirl, thank you for starting this thread. It gave me such hope when I found it. My score was 46 and I was devastated and felt doomed when my MO told me over two years ago. I now feel fine because upon my last visit, he told me that I was no longer defined by that score because I had the mastectomy, strongest chemo and taking tamoxifen. That score told us that those treatments were useful and that it would significantly help me reduce recurrence. I see him today for my check-up!

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/15/2017 FAC Hormonal Therapy 9/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/13/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 3/16/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 22, 2019 07:53AM Scrafgal wrote:

keep coming back 1OUgirl...no matter how far out I get, I still need a little encouragement, every now and then...

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/15/2017 FAC Hormonal Therapy 9/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/13/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 3/16/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 22, 2019 09:07AM nottoday wrote:

Thank you, IOUgirl, for starting this thread, and to all others for posting here. I was diagnosed 5 years ago today, Oncotype score 39. I have had 5 wonderful years.

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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