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Topic: oncotype scores..

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Feb 19, 2019 01:38PM

everetta wrote:

I am wondering the range of oncotype scores. They say the scores go up to 100 but most of the highs I have heard referenced are in the 30s..are there people who have scores in the 40 and up range?

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Feb 19, 2019 02:01PM Boston12 wrote:

I don't know the number of scores above the 30's. but the 30's definitely mean something but my report didn't explain the rationale. I have heard that a very high score usually means that you're not ER+ PR+, HER-, and that accounts for a very high score.

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Feb 19, 2019 04:22PM Murfy wrote:

I had RS of 52 and was highly ER positive, but had zero PR and high Ki-67. My doc said it was the highest RS he'd seen in someone with 100% ER.

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 3/31/2018 Aromasin (exemestane)
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Feb 20, 2019 02:31AM - edited Feb 20, 2019 02:32AM by ZEKE

I have a score of 41 and am trying to make a decision on whether I get chemo or not. I am 62 years old and was trying to find people on this site that had a high score and did not get chemo but had radation and hormone therapy.  I wanted to get some stats and results to help me make a decision that is best for me.

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Feb 20, 2019 05:23AM AliceBastable wrote:

Isn't the purpose of the oncotype score to determine if you need chemo, and to actually settle that question? I would think 41 would put you in the "definitely benefits from chemo" category.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Feb 20, 2019 05:27AM Murfy wrote:

According to a different thread ZEKE has posted in, her tumor was triple negative, grade 3 with high Oncotype. I suggested she get a second opinion, or third, if she remains undecided on what to do.

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 3/31/2018 Aromasin (exemestane)
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Feb 20, 2019 07:24AM Beesie wrote:

No, the role of the Oncotype test is not to determine if you need chemo.

The role of the Oncotype test is to guide treatment decisions by providing an individualized risk assessment specific to one's risk of distant recurrence, along with an estimate of the benefit of chemotherapy.

For those who receive an Oncotype score, treatment decisions should incorporate this information, but can also consider other factors, such as concerns about the health risks associated with chemo (which may be more significant for patients who are older and/or have other health issues), quality of life, how one views their risk level, how one views the benefit from chemo, etc.. This assessment can vary considerably from one patient to another, even if they have the same Oncotype score. A 4% reduction in risk from chemo might lead one individual to have no question about proceeding with chemo, whereas another individual might feel that a 4% benefit is not enough to warrant the potential side effects and health risks from chemo. This assessment might even vary for the same individual depending on age. Someone might react very differently to an Oncotype score of 35 when they are 40 years old than when they are 65.

Whatever Oncotype score someone receives, there is nothing wrong with asking questions to ensure a complete understanding of why chemo is or isn't being recommended, and to understand the benefits and risks associated with each option.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 21, 2019 12:03AM everetta wrote:

Hi Zeke, I think a score of 41 would recommend chemo but if you were concerned about chemo because of side effects you might talk with your doctor about which chemo to use. I had a much lower score but chemo was recommended but some doctors suggested I get CMF an older chemo but one that had less toxicity (and perhaps slightly less effectiveness but still effective). So you might talk about chemo but also about which chemo. CMF has a longer course of treatment and might not be helpful to you. Good luck with your decision.

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Feb 21, 2019 01:22AM keepthefaith wrote:

ZEKE, You mentioned "find people that had a high score but did not get chemo but had radiation and Hormone therapy."... If you are ER-, as another poster mentioned, I may be mistaken, but I don't think Tamoxifen (hormone therapy) is a benefit or option for you The onco risk/benefit score is based on the assumption that you will take Tamoxifen for 5 yrs. If you are Triple Negative, that may reduce your treatment options. I would suggest discussing with your MO to be clear in what options are available to you. If Hormone therapy is not an option, would you be willing to forego chemo?

It is a personal choice and one that should not be taken lightly. Please get all of the information available before you decide. The SE's of chemo are real, but most of them are very manageable. I say that as someone who tolerated chemo well. Best wishes.

Dx 9/17/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/18/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 12/3/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/26/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/16/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 2/11/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/1/2014 Breast Hormonal Therapy 5/23/2014
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Feb 21, 2019 05:27PM - edited Feb 21, 2019 05:30PM by Meow13

Zeke, a good point was made about maybe doing CMF, the oncodx is quoting statistics based off CMF for chemo. It is a longer treatment I think 6 months vs 3 months on ACT. If you decide to do chemo that might have less side effects. But your tumor was small at 7mm but grade 3, I completely understand not wanting to do chemo to maybe make the odds of recurrence smaller. It is frustrating because there is no correct decision.

Your ER shows receptors even though it isn't strongly positive hormone therapy can still be effective you also have a small percentage of pr receptors which is better than none.

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Feb 21, 2019 08:02PM Willive1 wrote:

Hi my score was 49. And iam in the middle of my chemo EC treatment. Had my third infussion. Iam progesterone positive +8. And HER -

My tumour was 2.8 cm grade 2 stage 2. No vascular and 0 nodes involvement. But I had mastectomy with reconstruction because lumpescopy wasn't successful. They discovered 5cm DCSI within the first tumour. I have Mucinous ductal carcinoma.

I won't be having radiation due to synthetic implant.

I still don't understand how mucinous tumour can have such high oncotype as it is less invasive cancer in the way. I am 44. And was diagnosed in September.

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Mar 4, 2019 12:29PM Appyfan wrote:

everetta, my oncotype score was 49. I had 2 tumors, one 1.9 cm and one either .9 or .7 cm, I forget. I’m also not sure what tissue they did the test on. I’m assuming the larger tumor

Dx 5/10/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 6/11/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 8/8/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/12/2018 Whole-breast: Breast Hormonal Therapy 1/9/2019 Arimidex (anastrozole)
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Mar 5, 2019 09:34AM - edited Mar 5, 2019 09:36AM by PebblesV

Beesie's post is SO WELL SAID! We all have to evaluate our own personal risk / benefit scenario and make the decision that is best for us and what we are comfortable with, with full knowledge of the potential benefits in reducing a risk of recurrence as well as all the potential side effects. Just because the doctor said to do something doesn't mean you have to follow it without question... also different doctors say different things, that's why people get second opinions sometimes.

The statistics say that the higher the oncotype score, the more impactful the benefit of chemo is. But there are also plenty of people who have thrived without chemo. Chemo is adjuvant therapy to keep the cancer from coming back, the initial surgery most people do is what removes the actual cancer to begin with. There have also been studies proving that a 1/2 hour of moderate exercise could reduce your risk of recurrence substantially as well.

I know of people on all ends - those who were recommended chemo, declined it, and thrived and the cancer never came back; those who did chemo, survived it, and the cancer never came back; those who did chemo and the cancer still came back, etc. At the end of the day we just need to make the best decision for ourselves, feel good about it and move forward, and NOT feel pressured to do something that doesn't feel right.

I made a risk/benefit decision every step of the way for me based on my own unique situation and a whole lot of data and research that I could find. I did the lumpectomy and sentinel node biopsy, declined the axillary node dissection (due to the 40% risk of chronic lymphedema and studies showing women in my situation did better with just the SN dissection), did a very full and aggressive radiation (and had minimal side effects, this one had a 10-15% risk of chronic lymphedema but I felt the benefit now outweighed the risk), did not need chemo due to my oncotype score (but might have declined it anyways based on my personal experiences around friends and family who did chemo), and have started tamoxifen (again there are SEs but I've determined the benefits outweigh the risks here too).

I don't know if I'll be one of the lucky ones with no recurrence or whether this might come back and I'd have to re-evaluate and fight/decide again... We can't predict the future so we have to make the smartest decisions for ourselves today and have faith in it. I just know I feel good about the choices I have made, and I'm better able to face things and fight this with that faith that I've evaluated and made the best decisions for myself. That's all we can do, and take it day by day.

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 9, 2019 01:00PM Ittmccoy wrote:

I had an oncotype score of 35 and had chemo because my doctor said my reoccurance rate was high. My sister who coincidently was diagnosed a month after me, had a score of 9. She did not have chemo. Now six years later, she is diagnosed with breast cancer metastases to the bone. Something we never realized, once the cancer metastises to other parts of the body, you are stage IV. If you can get chemo and your insurance will pay for it, get it. Just do not get the chemo that begins with an A and can damage your heart.
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Oct 9, 2019 01:16PM - edited Oct 9, 2019 02:26PM by voraciousreader

itt....i am sorry to hear about your sister's recurrence that metastasized. Please keep in mind that having a low Oncotype score like your sister's meant that there was NO benefit to doing chemo. Having that low score doesn't mean it would not recur. The chance of recurrence was small, but nonetheless, it did. Likewise, having a high Oncotype score means that chemo will diminish your chances of recurrence. But that doesn't mean if you do chemo, you won't recur either...

the point....

all of us try to get the most info about our unique tumors and then try to develop a treatment plan that is right for each of us based on whatever the current data tells us. Afterwards, it is a crapshoot of who will live a long life and die from something else....

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Oct 9, 2019 01:33PM Beesie wrote:

lttmccoy, I'm sorry that your sister has developed mets, despite her low risk. There will always be some people who do develop mets, despite having a favorable prognosis and a low risk of mets. Your sister is one of those unlucky ones.

And here's the thing. Even if she'd had chemo, she might still have developed mets - there is no way to know. Chemo doesn't stop mets and eliminate the risk, it only reduces the risk, and it's still possible to develop mets despite having chemo.

The other thing is that chemo itself can cause other health problems, and that's why someone with an Oncotype score as low as your sister's will not and should not be given chemo. When the risk of mets is low, the risks from the chemo itself are actually greater than the reduction in the risk of mets. So it might be that if there are 100 patients with an Oncotype score of 9, chemo will provide real benefit and stop the development of mets in just 1 person, but all 100 will experience the chemo side effects and 3 or 4 people might have very serious side effects that permanently impact their health.

For someone with a higher Oncotype score, such as your score of 35, the risk of mets is higher, and this means that there is a greater chance that chemo will provide real benefit and stop the development of mets. But still, some of the people who have chemo will still develop mets.

Unfortunately to avoid mets, it's not as easy as saying "get chemo". Sometimes chemo is lifesaving, but sometimes mets develops despite a patient having had chemo, and sometimes chemo causes more harm to the patient than good. And this is why different Oncotype scores and different pathologies get different treatments. It doesn't always work out the way it should and the way we want it to, but to change the treatment plan - to give chemo to many patients who probably don't need it - isn't the answer and would actually end up harming a greater number of patients.
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 9, 2019 01:49PM LimnoGal wrote:

Everetta-my oncotype score was 49. Higher than most, but certainly not the highest out there. My tumor was weakly ER+/PR-/HER-. I did a lumpectomy, radiation, TC x 4 chemo and have completed a little over 3 years of AIs. Doing chemo is not the end of the world (even though it feels like it might be)- it is doable. In many ways, chemo was easier than the AIs have been. The treatment period was shorter (but intense), and the vast majority of the side effects were tolerable and went away once treatment was completed.

I did have a second opinion. It helped to hear that the treatment plan proposed was a good choice

Whatever you choose to do, I wish you the very best!

Moving on.... Dx 11/2016, DCIS/IDC: Papillary, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR-, HER2- Surgery 2/11/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Balloon-catheter: Breast
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Oct 9, 2019 10:39PM everetta wrote:

I am so sorry to hear about your sister. As others have said, one can have a low oncotype and still have a recurrence and also have chemo and still have a recurrence. Some centers don't give oncotype when the clinical features would override the decision either being too high risk or very low risk. So someone with a very small tumor might not even be given an onctohype test since even if it was a high score they would not recommend chemo and also if the clinical features were high risk age, (large mass or lymph node involvement) they would give chemo even with a low score. Were your sisters clinical features also low risk? The clinical features in addition to the score play a part..but again it is only likelihood not a guarantee. And even for people who have a high RS and get chemo it still reoccurs in 13% of the people. I am sorry to hear about your sister but there are many treatments now available and I hope they will be successful for her. I did not do chemo but agree that the Ais, although important to take can have some difficult side effects.

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