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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.

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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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Oct 6, 2021 07:03AM kaylie57410 wrote:

good morning to you- I am almost 4 and a half years out from my dx and doing fine--2cm lump with 2/2 nodes grade 3- onc-45 so high risk of recurrence.I had lumpectomy chemo-4 TC and full course rads-have been on letrozole for 4 years this January and have minor side effects--stiff joints in am and insomnia-very doable--I take naps-lol. At last doc visit she let me know she would recommend 7 full years of letrozole as studies show- 10 years doesnt offer much additonal in the way of prevention, She also started me on every 6 months infusions of Zometa-helps ward off osteopenia,which I have , progressing to osteporosis, and has a positive effect in bone metz prevention.

I did cold capping with Penguin and saved 75-80 percent of my hair- was so helpful to my emotional health to look normal thru it all

life is 98 percent back to normal and looking forward- rarely backwards anymore--sending hugs your way from Vermont--

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Oct 6, 2021 09:56PM UpstateNYer wrote:

PatK, we are Onco sisters, my score was also 48, diagnosed just a few months after you. Also did lx, chemo and rads and on anastrozole for past 2 years. So happy to hear that you are doing so well. My MO congratulated me on getting past the 2 year mark. Congrats to you too on reaching the 3 year mark. Yes, initial diagnosis was devestating to me too. Did alot of research and was lucky to have an excellent team of doctors. 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 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019
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Oct 6, 2021 10:07PM UpstateNYer wrote:

Oldladyblue,

So sorry to hear about your friend in stage 4 bc. Will keep her in my prayers. I think you have a great attitude and made the best informed decision regarding having chemo. Have to hit this thing with everything you can. Hoping chemo goes well for you. I had a rough time, but very happy that I got through it. If you want to hear some good tips regarding handling side effects, etc., Please feel free to PM me. The ladies on thee boards are so supportive and helpful. That is how I got through my journey. Best wishes , take care. 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 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/10/2019
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Oct 7, 2021 06:27AM oldladyblue wrote:

Hi UpstateNYer, thanks for your reply. I appreciate your prayers for my friend Lori, she has a great attitude, it was better than mine. She says she will just keep doing chemo/treatments until they don't work for her anymore. She went out and played tennis the other day and has inspired me to start exercising again. I haven't run in years, but used to. I think any woman with Stage 4 is very brave for not crumpling down totally, but when Lori reached out to share with me, it made me willing to fight through all treatments recommended. I will PM you later today, thanks for offering to give me tips.

Kalie57410, I needed hugs, thanks! My husband has backed off touching me much since my diagnosis, few hugs and kisses. So thanks for yours. It is great to know you are 98% back to normal and rarely look backwards anymore. If I hadn't been so disbelieving for so long that my doctor felt 28 was a high enough score to do chemo, I might have decided to do cold capping, but there's not time to set it up now. I hope to be able to tolerate hormone therapy for years too. I'm glad you are.

It makes me very very hopeful to see all the earlier posts on this thread too. I hope your lives continue to get better.


64 years old, Oncotype 28 Dx 6/25/2021, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 7/26/2021 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 10/7/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 17, 2021 12:47PM Emily21 wrote:

Hi, Can I ask if any of my high oncotype friends are on Zometa (zoledronic acid???) and or baby asprin, as an added boost to our protection against mets. I just walked the pink 10km today, I really don't appreciate the assignment of a colour such as pink to an ugly deforming catastrophic shit show as BC but I walked the walk cos s I can and hopefully my money and effort will help someone. Anyway, happy Autumn

X Anne



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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Oct 17, 2021 03:29PM Murfy wrote:

I'm taking the bisphosphonate Fosamax for AI-induced osteopenia. Thinking that taking that, calcium, and vit D will help prophylactically strengthen bones. And, exercise...thanks for walking for BC research!

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 11/14/2017 Mastectomy: Left Chemotherapy 1/13/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/30/2018 Aromasin (exemestane)
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Oct 18, 2021 04:06PM Emily21 wrote:

Thanks Murfy, Laura, hope all is well with you, have you made it home yet? I hope that hip pain has moved on. I'm getting a list of requests together for my BS visit, my oncologist doesn't give me much time to talk, I generally see a young registrar. Not good. So I want to make sure I'm on everything I should be on. Are you on fosamax long? Otherwise all is good, walking, swimming, living. Anne.

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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