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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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...
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....
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!
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.
Just want to add that 30% of grade 3's have a low Oncotype and don't need chemo (according to the test). Also, other tests like Mammaprint, Endopredict and Prosigna may give other info on risk of recurrence. Oncotype is the only one that gives info on benefit of chemo. (Breast Cancer Index is the only one that gives benefit of hormonal treatment in years 5-10.)
I'm curious what attributes favour a low Oncotype score. My tumour was sent for the test. I come from the world of triple negative per my diagnosis 10 years ago so hormone positive is all new to me. I don't know what to expect in terms of a score. I did chemo last time and am hoping I am spared from doing it this time. My tumour is ER+/PR+ Her2- and grade 2 and I'm 55 years old.
I am confused. My understanding is that if there are Mets but no new cancer, the stage remains the same as the original tumor. For example, initial dx is stage 1, later Mets to lung would be stage 1 bc metastasis to the lung. Can someone clarify this for me
Sugar, I’m curious too. I’m getting mine back this week and a bit nervous. They test the tumor for 21 things. Not sure, but I believe it includes factors like grade, size, age, er/pr percentages, ki score, etc. My MO says no matter what, she will probably just recommend hormone treatment. I’ll pray for low scores for both of ys
Yogatyme, you are correct - officially stage never changes. However when someone progresses to mets, it's usually easier for people to understand "Stage IV" rather than "Stage II with metastasis". So from a communications standpoint, just saying "Stage IV" is most common.
Sugar, Badluckbdaygirl, here is the formula for the Oncotype test. It's lots of genes we never hear about, but ER and PR are big factors, and Ki-67 is significant as well. High ER and/or PR drive lower scores, low ER and/or PR drive higher scores. High Ki-67 drives a higher score.
Grade, tumor size and patient age are not considered in the score. However since the TAILORx study results have been incorporated into the recurrence risk estimates (as of late 2018), there are different recurrence risks provided for those who are 50 & younger and those who are over 50, for the node negative Oncotype.
There is a simple and quick computer model that Genomic Health makes available to MOs that takes the inputs of 1) the Oncotype score, 2) the patient's age, 3) the tumor size, 4) the tumor grade, and 5) whether the patient will be taking Tamoxifen or taking an AI, and it recalculates the recurrence risk. This is the Oncotype RSPC model (Recurrence Score Pathology-Clinical). For patients who have one or more factors that are far off from average - younger or older than average, a very small or very large tumor, a grade 1 tumor - the RSPC recurrence risk associated with any particular Oncotype score can be quite different than the average recurrence risk that is provided in the report that comes from Genomic Health with the Oncotype score.
For example, say we have a patient who is 68 with a 6mm grade 1 tumor, and who has a high Oncotype score that normally would lead to a recommendation of chemo. When the RSPC model recalculates her recurrence risk with these additional factors, her revised recurrence risk might fall well below the chemo range. Alternately, a patient who is 42 with a 3cm grade 3 tumor and who has a low intermediate Oncotype score, which normally would indicate no chemo, might have a recalculated RSPC recurrence risk that would strongly recommend chemo. Unfortunately not many MOs offer up the Oncotype RSPC to their patients, although several people on this site have heard about it here and have asked their MOs to run it for them, sometimes leading a different chemo recommendation.
Thank you for the information. Crossing my fingers
Beesie, thanks, this is very helpful. I don't know what my Ki-67 is so hopefully it's low. I know my ER was high (around 93%) and PR was around 23% per the biopsy. I assume the final pathology would be similar to what was analyzed at biopsy.
I just found out my Onco score which came back at 12. It’s interesting because now they seem to include the Tailorx analysis which is supposed to help with the intermediate (grey) areas and they break it down for < or > 50 years of age. My distant recurrence for 9 years was 3%. So no chemo for me. Now terrified to start Tamoxifen. I pray for a low score for you as I know you have been through chemo before.
Hi Badluckbday - fantastic news on your low score! Fingers crossed mine is too
Thank you, Sugar. Just picked up the Tamoxifen and already want to wait a few more days. Also, found out my estradiol levels were in the 300's so nowhere near peri menopause. After I see if I can tolerate this drug, I may have to look at ovary suppression. Just ready to move on.... crossing my fingers for you
I had a recurrance score of 4 but a distance recurrance risk of 10% - but that's for those with micromets & 1-3 nodes positive. (I had micromets in the sentinel lymph node)
The graph accompanying it suggests that for really low recurrance scores the 5 year risk of recurrance or mortality is actually higher for those that got chemotherapy. (There may have been clinical reasons they had CT despite their low scores).
Not sure what hormone drug I'll be taking. Chemo put me into menopause 10 years ago