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 12:54PM

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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Nov 7, 2021 01:01AM murfy wrote:

Emily, I think high-risk individuals are those with LN involvement and you fit that description. Bring a copy of the paper to your next appt. Tell your Doc you want to start taking Verzenio and see what s(he) says! They may just be unaware!

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; Mastectomy (Left) Chemotherapy 12/1/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Aromasin (exemestane)
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Dec 21, 2021 05:40PM Emily21 wrote:

Happy Christmas and a Happy New year to all my high oncotype friends. Best of health and Happiness for 2022.xAnne

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2-, 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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Dec 22, 2021 10:43AM upstatenyer wrote:

Same to you, Emily and everyone💕

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- Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- Surgery 3/20/2019 Lumpectomy; Lumpectomy (Right) Surgery 4/3/2019 Lumpectomy; Lumpectomy (Right) Chemotherapy 5/8/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/7/2019 Lumpectomy Hormonal Therapy 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/11/2019
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Dec 27, 2021 02:32AM Lo71 wrote:

hi there I’m glad you started this thread. My onco was 30. I had a partial mastectomy but had to refuse chemo and Verzenio because they both decked me. I also refused radiation for fear of permanent nerve damage. My surgery was just August 4 and now I’m looking at having my ovaries and fallopian tubes removed. How are you doing and where are you in the process

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Dec 27, 2021 06:39AM kaylie57410 wrote:

good morning to you--my onco score was 45 4.5 years ago at dx- stage 2 --- 2cm tumor- 2/ 2nodes positive -estrogen/progest positive and Her neg--had lumpectomy, 4 rounds TC ,radiation and have been on aromatase inhibitor for 4 years next month and other than stiff joints in the morinings-have done well and am one who will need to stay on it beyond 5 years due to high risk of recurrence. I am followed at an academic cancer center in the hospital where I work as an RN

not sure what you referring to as to nerve damage from radiation--it can be quite effective in eliminating any remaining microscopic cells left behind in your breast area--maybe weigh your fear of side effects against your fear of a recurrence. Same with chemo as kills any remaining circulating cells that can cause a recurrence--going thru the variouis treatments isnt fun but is our best chance of coming out the other side lowering recurrence risk as best possible-nothing is 100 percent and the recurrence risk will always be a possibility

I think my advice would be to work with a team you hopefully trust and have confidence in and put your faith in their expertise and guidance- they are trying to save you per the latest protocols. also what helped me was to do lots of research thru legitimate sources--like this site and other sites connected with reputable cancer centers--beware of many sites that put out false- possibly harmful info--

I also cold capped with Penguin caps thru chemo and saved 75-80 perpcent of my hair--yea!

I did well with chemo -suprisingly so with the premeds and post meds-never had any nausea-mostly fatigue and some diarrhea-

with 33 radiations treatments I had mild skin inflmmation but resolved quickly after treatment stopped

stay with us on this site- there is so much helpful support as you continue on this journey--best to you in the coming year--You can do this--you can---hugs from Vermont,Kaylie

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Dec 27, 2021 12:13PM oldladyblue wrote:

Although my score of 28 was "barely high" per my surgeon, and my age is 65, I did the recommended TC chemo, will start radiation mid Jan for 16 treatments, and will be on hormone suppression pills for 5 years . I have a friend who had a double mastectomy 10 years ago call me to urge me to do all possible treatments I was recommended for as she had breast cancer spread to her bones 1.5 years ago and is thus stage 4 terminal with 3.5 years left per her doctors. She didn't know her oncotype score from 10 years ago, but she scared me enough to do all the treatments no matter how they affected me. My side effects from TC chemo were bearable, I hope the rads and AIs go well too.

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/1/2022 Arimidex (anastrozole)
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Feb 20, 2022 04:24PM Emily21 wrote:

Bump

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2-, 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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Feb 28, 2022 12:51AM meow13 wrote:

My score was 34, I am glad I didn't do the chemo kind of wish I didn't do 4 years of AI treatment. I think I aged a great deal these past 10 years but you know I am still NED. Treated myself to a neck/facelift and I am really happy the way it turned out.

Still happy with my DIEP, still looks great. Almost like the mastectomy never happened.

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Feb 28, 2022 10:15AM loral wrote:

Hi Meow I’m glad you are well. I’m cancer free also it will be 10 years this October. Like you I had a high Onco score too. Only took Tamoxifen. But then we see articles like this and still wonder.

“Risk of Early-Stage Breast Cancer Recurring 10 or More Years After Diagnosis Linked to Estrogen Receptor Status, Other Factors”

Take Care, oh I want a neck lift too👍🏼👍🏼 Loral
Oncotype DX 34....When NOTHING is sure, EVERYTHING is possible ,so NEVER, EVER, GIVE UP HOPE!! Dx 9/11/2012, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR-, HER2- Surgery 10/9/2012 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Hormonal Therapy 12/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 2, 2022 06:46AM oldladyblue wrote:

Thanks for posting Meow and Loral. I wasn't brave enough to skip the chemo, though I wanted to. It sure has aged me. I am nowhere near how active and well-feeling I was before chemo, rads and now the horrible little tiny daily hormone pills. I sure long for the days of feeling "well".

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/1/2022 Arimidex (anastrozole)

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