Young and Oncotype score

Lvp84

i originally posted this elsewhere but figure it fits best here, i’m 35 years old and waiting for the final piece of the puzzle.. my Oncotype. I’m highly ER/PR positive and Her2- and grade 3 tumour. Very curious to know what score you guys got and what decision you made on chemo...

JamieGillham

Hi there,

I was diagnosed at 28 years old and had an oncotype score of 13. I was scheduled to do 6 rounds of chemo but my oncologist lowered it to 4 rounds after my results. He did say that with such a low score usually I wouldn't have received chemo at all but because I only 28 years old he felt better if I did chemo.

I was estrogen positive and grade 2 tumor. Two tumors were found in my left breast with the distance between them I only had the option of a mastectomy and later had a mastectomy on my other side as well.

Lisey

I was 40 when diagnosed with a 20 score. I got a Mammaprint as a second opinion and it said 'low risk' so no chemo for me. The TailorX study is now showing that even younger women can safely skip chemo if lower than a 25 score. I'm glad I didn't do chemo, I'm saving it for if/when BC ever comes back. With that, I'm on Tamoxifen for 10 years. I'm 3.5 years in.

MirandaPriestly

I was 31 at dx and my Oncotype was 0. I think (at least at the time) that my Onc had never seen that before. I also had Mammaprint, which came back at low risk.

buttonsmachine

My Oncotype was 32. I did do chemo.

If it looks like you need to do chemo, ask your MO about possibly adding ovarian suppression during chemo - it helps protect your ovaries, but also might help chemo to be more effective because the cancer is not being simultaneously fed by estrogen.

Best wishes to you. It's a hard situation at any age, but especially when we are supposed to be in our "prime."

Blackrose231105

mine was 16 but because I was 30, my oncologist wanted to go ahead with chemo

Rambros

Mine score was 19 (12% risk of recurrence with or without chemo). Did chemo for my age (36), size & grade of tumor plus one positive lymph node. Hope you get a low score. I was 90% ER and 90% PR plus grade 3

PoojaMG

Hi! Do you know of anyone with a high oncotype score? Mine just came back and it is 66 (?!?!). I feel like that has to be a mistake?

Redkitty815

I have a similar diagnosis-grade 3, ER/PR+, Her 2- and am 43. I have nodal involvement and my team actually put me on neo-adjuvant chemo therapy and in a clinical trial (adding in immunotherapy or placebo) because the high grade makes it both higher risk and more responsive to chemo. I just got my last dose of chemo and don’t regret my decision

Peregrinelady

Pooja, what are your percentages of ER,PR.? If they are low, maybe you are closer to triple negative?

Moderators

Hi PoojaMG,

We are sorry you find yourself here, but glad you found this community.

The numbers can be difficult to understand. Here is a something we've written that may help make more sense of it: Oncotype DX: Genomic Test to inform breast cancer treatment. What is your treatment team suggesting for you?

Thinking of all of you! Keep us posted!

PoojaMG

Thanks, Redkitty. That's helpful to hear that you don't regret your decision to proceed with chemo!

Peregrinelady, my ER is 81% and my PR is 85%. Because of that and the fact that I was HER2-, node negative and clear margins, my understanding was that I would not need to do chemo. Now my MO is recommending chemo because of the Oncotype score and I'm not sure the data is there for people my age (early 30s).

I actually spoke with my MO today and I decided not to do chemo. The sacrifice for me (in terms of fertility, life style, etc.) is just a bit too much for me to handle. I am going to proceed with hormone therapy (letrozole and Zoladex) and then have a mastectomy/prophylactic ovary removal in a few years.

It's impossible to know for certain cancer won't come back and/or that we make the right decisions--here's to having faith!

Peregrinelady

Wow, Pooja, I usually don’t give my opinion to people about their treatment. However, with that Oncotype, it scares me that you have decided against chemo. Maybe you could ask for a mammaprint as another piece of info. Have you already had a lumpectomy?

Lisey

Yes, the mammaprint should be used as a second opinion. Science is backing these tests Pooja, so you'd be wise not to ignore the findings. I had a 20 score, and that wasn't great, so I got the mammaprint as a second opinion and it said 'low risk' so I didn't do chemo.

I think in a couple of years, if you end up stage 4, and on chemo for the rest of your life, you would have regretted not throwing everything at a high score. Yes, chemo would suck, but if it can prevent stage 4, it's very much worth it.

OnTarget

I think people should be very careful of assuming that TAILORx says that people with scores under 25 can skip chemo.

The latest results also show that women under 50 who have high clinical risk tumors who score in the intermediate oncotype range (16-25) have a definite chemo benefit.

The likelihood of distant recurrence and absolute chemo benefit that are printed on the oncotype score will NOT apply to these people.

Ask for the RSPC score (part of oncotype).

Lisey

On Target, I scored a 20, and was only 40 when diagnosed. Chemo would help 3%, but it could also harm 3%. I was told it was a net zero and my choice. That's why I did the mammaprint, which then said low risk. I would be careful stating all of those under 50 with intermediate results would benefit, that is just not the case.

Beesie

Lisey, your results were pre-TAILORx. The results were not broken out by age then.

This is the current Oncotype recurrence risk chart for Intermediate scores, taken from the TAILORx study and specifically for women aged 50 and under:

Additionally, to OnTarget's comment, Oncotype make available to MOs the RSPC (Recurrence Score Pathology Clinical) computer program, which takes an Oncotype score and refines the recurrence risk even further by incorporating the patient's age, tumor size and tumor grade. In some cases this recalculation of the recurrence risk doesn't change things much, but if the patient is older or younger than average, if the tumor is much smaller or larger than average, and if the grade of the tumor is a 1or a 3, the estimated recurrence risk associated with the patient's Oncotype score might either increase (younger age, larger tumor, grade 3) or decrease (older age, smaller tumor, grade 1) substantially. This means that someone in her 30s or even early 40s might have a higher metastatic risk and get even more benefit from chemo than the chart shows.

Lisey

Beesie, The graph you uploaded is super helpful and absolutely shows the same numbers I have. Thank you for posting it.

As you can see, on average, (obviously there is a range depending on Grade 1 or 3, size, etc)... There is only a 3% rate reduction with Chemo at a 20 Score. This is EXACTLY what my MO said. And if you look up the risk factors for Chemo, there is a 3% risk of serious harm or death. At a 20 score, at the standard lines, not the variances, the net is zero based on all the factors.

Looks like my graph and your graph align, TailorX simply confirmed what we already knew.

Beesie

Lisey, I think there is a difference between what your MO told you based on the previous Oncotype results and the results in the TAILORx study. Maybe it comes down to the assumption on chemo side effects and the point at which an overall benefit from chemo kicks in. Because the Oncotype results are now separating out younger women, and because it is well established that younger women do not experience the same degree of serious side effects from chemo as older women, the recommendation from the TAILORx study is that for women aged 50 and under, those with intermediate scores in the 16 to 25 range should consider chemo (i.e. not a definite recommendation but a consideration based on other patient factors such as age and comorbidities).

This has also been incorporated into the NCCN Treatment Guidelines:

This is the table with the Age 50 and under results from the TAILORx study, showing both recurrence rates and survival at 5 years and 9 years:

Cowgirl13

Beesie, you are amazing and your input is invaluable. And you can explain it like no one else!

ShetlandPony

I am one who would get a different recommendation in 2020 than I got in 2011. I was premenopausal (under 50) and had an Oncotype score of 16. Back then, I was told no chemo, not even ovarian suppression and aromatase inhibitor, just tamoxifen. Now with the TAILORx results, for premenopausal (under 50) with an Oncotype score of 16, I would fall into the “consider chemo" group. And I certainly would have done chemo or at least OS + AI. There were several details about my case that worried me but not the oncologists. I did not know about Mammaprint or the RSPC. My “stats" below tell my story.

Lisey

Beesie,
Please explain this article recently updated showing the TailorX study does NOT say those 16-26 younger women should consider chemo. Not at all.. I think you are looking at the original TailorX study, but not the subsequent one that actually determined the opposite of what you are saying.

https://ecancer.org/en/news/16128-asco-2019-new-tailorx-data-guides-adjuvant-therapy-in-younger-breast-cancer-patients

Snippet from article:

"With this new analysis, it is clear that women ages 50 or younger with a Recurrence Score result between 16 and 20 and at low risk, clinically, do not need chemotherapy. Furthermore, the integration of the Recurrence Score with clinical risk information could identify premenopausal women with higher clinical risk who may benefit from ovarian function suppression and more aggressive anti-oestrogen therapy."

Researchers studied the association between age at diagnosis and chemotherapy benefit in the group of younger women (age 50 or less) in TAILORx with a RS of 16-25.

This group was of particular interest because they were part (14 percent) of the 30 percent of women in the original TAILORx findings for whom it was suggested that chemotherapy may be considered.

Researchers sought to determine whether integration of RS and clinical information would help define this group.

They found there was no benefit from chemotherapy for younger women (age 50 or less) with a RS of 16-20 and at low risk, clinically.

Lisey

I think there is a disconnect with women knowing the initial results from the TailorX study, which did state what Beesie said, but not the subsequent studies that dug deeper and found that women who are younger can safely avoid chemo with scores from 16-20. (I'm a 20). The NCCN guidelines is always slightly behind, and with the deeper dive TailorX has now done, I think it does a disservice to new members to state old info and scare younger women into chemo when they are low risk.

Now I'm not saying Pooja's score of 66 is low risk, I would highly urge her to consider chemo and get a second opinion. But younger women who are low risk and have a score of 16-20 can feel better having skipped chemo based on the TailorX.

Bottom line, TailorX has modified their results based on new studies as of 2019-2020 and is finding, more and more, that women can safely avoid chemo. I'm certainly glad I did.

ShetlandPony

Nobody should be “scared into chemo" based on what they read on a discussion board. Rather, they should evaluate what is said, do their own research, and most importantly let what they read suggest questions to ask their oncologist and things to discuss with their oncologist, who ought to be in a position to evaluate all the data as it relates to their particular patient. Not all doctors are that thorough or informed, so being an informed patient is helpful, as is getting a second opinion when things are unclear. I see two main ideas in the article linked above. One is that the decision-making for this population (premenopausal with middling Oncotype scores) needs to be nuanced, and include clinical risk and age. The second, and this is not a new idea, is that the benefit of chemo for premenopausal women with ER+ breast cancer may be in the ovarian suppression it causes rather than its cytotoxic effects per se.

In my situation, some of my concerns did hinge on whether I was truly low risk clinically. I questioned whether isolated tumor cells, considered technically node-negative, ought to be considered so in the case of ILC when ILC can spread in a single-file pattern. I was also concerned with data on postmenopausal women with ILC that showed more favorable survival rates with aromatase inhibitors vs. tamoxifen, perhaps because there might be a subset of ILC de novo resistant to tamoxifen. Also there was data suggesting that palpable ILC tumors, and low vitamin D at diagnosis, were associated with worse outcomes. It is quite true that it takes a while for research or data to influence the NCCN guidelines. They are very conservative and demand a high level of evidence. So to my concerns, the oncologists said, “We have no proof." My current oncologist does agree that if I had done Oophorectomy/OS +AI back then, I might not be stage iv today. Obviously we will never know.

That brings me to my last comment. We all make the best decisions we can based on what is known at the time. After that we should go forward and do our best not to live in regret or fear. New treatments and new data will come along and we are glad when new people can benefit from them. We did the best we could with what we knew.

P.S. Pooja, that score is not in a grey area...

Beesie

Lisey, there is no disconnect or inconsistency. The subsequent analysis that you've linked builds upon and supplements the TAILORx study - it does not over-ride the previous conclusions. It is in fact not a new study but simply reflects further analysis of the TAILORx data.

TAILORx concluded that patients who are age 50 and younger with Oncotype scores of 16 to 25 should consider chemo. This remains true. In considering chemo, patients and their doctors should review other factors related to the cancer itself and the patient herself. In some cases the decision will be made that chemo is an appropriate and beneficial treatment and in other cases it will be decided that chemo is not necessary / would not be beneficial.

The addition analysis of the TAILORx results provides guidance on this decision. Specifically, it shows that women with 16-25 scores who have low clinical risk gain no benefit from chemo. This is not surprising and is quite consistent with how most MOs and patients have been making this decision since the TAILORx results were released in 2018. It is also in effect the same as applying the Oncotype RSPC model, which I mentioned/suggested in one of my posts above.

Here is the actual ASCO Post article: https://www.ascopost.com/News/60141

And here is the concluding paragraph:

"The authors concluded, "Clinical risk stratification provides additional prognostic information to the 21-gene recurrence score, but not prediction of chemotherapy benefit in the overall TAILORx population or those > 50 years, and facilitates more refined estimates of absolute chemotherapy benefit for women ≤ 50 years with a recurrence score [of] 16–25.""

Jojo0529

Lisey it looks like you are in the low clinical risk based on grade and tumor size according to the study. If your tumor was bigger or grade 3 chemo may have been recommended.

Lisey

Shetland, I totally agree with you that ILC is a different animal entirely. The ovary suppression that chemo does seems to be what is advantageous, not the chemo itself, which means women should look more to that when considering options.

JoJo, yes I was low risk per the mammaprint though my ki was rather high and I had grade 2 (thus the second opinion).

Beesie, I posted that at a 20 score, I only got a 3% bump from Chemo.. and the risks of Chemo were about 3% so a net zero. you then posted DIRECTLY at my statement saying I had old info. and the Tailorx said younger women in the 16-20 should consider chemo. When in fact it was saying that younger women 16-20 can be more assured chemo isn't necessary for most - which is EXACTLY what I had been saying before you tried to negate my info. My results and MO were correct that not outdated, and the science is showing how little chemo helps for even younger women in the 16-20 category and most who have grade 1 and 2 tumors, can safely avoid it.

Peregrinelady

Pooja, if you are still around, can you please let us know if you have changed your mind about chemo? Or at least sought a second opinion. For those of us who have been here a while, it is disconcerting to see a young woman not do the most she can to avoid a recurrence with the Oncotype score that you received. I hope your oncologist explained the ramifications and differences between local recurrence and distant recurrence. Best wishes and please keep us posted.

Lisey

In thinking about Pooja's score, maybe there is confusion and she got a DCIS score which usually is much higher than a typical score? A 66 on a typical score would be mandatory chemo, but not necessarily on a DCIS score... Looks like a 57 Score for DCIS is only 13% recurrence rate, which is nearly the same as my score of 20.

https://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-dcis-score/about-the-test

Peregrinelady

Maybe, but she definitely has IDC according to her signature. I am very curious as to the 66 score with fairly high ER, PR percentages. I thought those scores were usually associated with women who had very low ER,PR. I would definitely ask for a mammaprint if I was her.

Beesie

The Oncotype test for DCIS is a different test than the Oncotype test for IDC - fewer genes are analyzed and the recommendation for those with high scores is that they have radiation after a lumpectomy. Chemo is never a consideration for DCIS so a high DCIS Oncotype score would never come with a recommendation to do chemo. The DCIS Oncotype is also not used for patients who have both DCIS and invasive breast cancer, not even if it's just a microinvasion.

Pooja, I agree too that asking for a Mammaprint test seems like a good idea.

Lisey, to your comment directed at me, the differences in what we are saying are subtle but I think they are important.

You have made definitive statements that are only partially correct and therefore could bemisleading ("Please explain this article recently updated showing the TailorX study does NOT say those 16-26 younger women should consider chemo. Not at all".... "the subsequent studies that dug deeper and found that women who are younger can safely avoid chemo with scores from 16-20"). You have been adding in the critical contingency ("younger women who are low risk") only some of the time.

If the TAILORx guidance to younger women in the 16 - 20 group was that they could safely skip chemo, then none of the patients in this group would even consider the need for chemo, and those who are high clinical risk - who would benefit from chemo and for whom chemo is recommended, based on the TAILORx results - would not get it. This is why TAILORx does recommend that younger women in the 16 - 20 range consider chemo. Then as part of the consideration, those in this group who have low clinical risk can relatively safely choose to not have chemo.

This back and forth is getting tiresome. Lisey, I am not challenging your decision. It's the same decision I would have made with the information you were given and the same decision I would make today, with the information from TAILORx. I simply want to ensure that those reading get all the information necessary for their discussions with their MOs so that everyone can make the best decision for themselves, based on their Oncotype score, clinical risk, personal risk factors (relative to cancer and chemo) and risk tolerance. I'm sure at this point anyone reading can figure it out.