OncotypeDX results and the results of the TAILORx study

PatsyKB

Hey all - if you're in the position I'm in, waiting for your OncotypeDX results, be sure to read up on the results of the TAILORx study. Here's a link to the Washington Post story this morning but it is being covered by multiple news outlets. https://www.washingtonpost.com/national/health-sci...

chocomousse

i had a MX in 2015 but don't think I was given the OncotypeDX test. I was stage 1A, triple+ and grade 3, node negative and didn't receive chemo. This is good news for those with scores below 25.

momand2kids

this is great-- confirms my decision to have chemo from the gray area... good luck to all

beach2beach

yes, read that earlier today. Nice to have some solid backing on it.

deedledee

Very happy to have the results. This will help many with the tough decision- no more intermidiate/grey zone.

ChelseaSculler

Well, less of an intermediate grey zone anyway.

If you're under 50, there's still discussion to be had.

GreenEyes81

chocomousse- you would not have qualified being hers + to my understanding.

Was anyone able to find the actual findings? Not just news articles? I'm still confused....I had a 15 the first time and I keep reading that this would mean it wouldn't matter weather I did chemo or not. Yet, my MO who is in communications with an MO directly working on the TAILORx is recommending chemo.

I have an appointment with my MO tomorrow to discuss. Just thought maybe someone could help shed some light sooner. lol

Meow13

I thought I read your menopausal status is more a factor than your age. I might be wrong.

ChelseaSculler

Both are mentioned in the report, the slide shown at ASCO is menopausal status, mainstream media is using age. I'm going to be speaking to my oncologist today. I am totally not an expert, just an interested party (oncotype 22) trying to figure it out.

GreenEyes81

Ya, I remomved my post as I found the menopausal status details afterwards. lol I'm meeting with my MO this afternoon as well. Hoping my 2nd onco dx is finally back today! crossing my fingers!

PatsyKB

GreenEyes81 - we'll be eagerly awaiting word from you later today. (My MO appt is this Thurs.) Meow13, you're right about the menopausal status being important (at least I think you are...I'm not a doctor, nor do I play one on tv, as they say ).

Moderators

Hi All,

Here is our Research News article regarding the findings:

Women with mid-range Oncotype DX scores can skip chemo, NEJM and 2018 ASCO Annual Meeting, June 4, 2018

https://www.breastcancer.org/research-news/oncotypedx-intermediate-results-skip-chemo

Meow13

I think that is the news eliminating the confusion associated with the intermediate range. I often wonder if my information is used in this data collection. I plan to ask my doctor. I am in the minority as a patient that received a high oncodx score and didn't do the recommended chemo. However, I didn't take tamoxifen I took AI drugs.

Anyone else know if they are included in the data collection?

Inthegrey

Just to add, I read the full report in the New England Journal of Medicine. They break down smaller intermediate ranges that are very informative to help make a decision for women under 50: scores of <10; 11-15; 16-20; 21-25; over 26. Worth a read! The statement that intermediate scores can skip chemo is very general to me. Read the report for yourself and discuss with your oncologist. Knowledge is power. My score is 21 and I am 51 years oldand feel good that I am going forward with chemo CMF to gain a few extra percentage points.

Meow13

Inthegrey, don't forget the benefit of hormone therapy, I sometimes wonder if some are given a disservice by not getting hormone therapy for over 6 months later because of chemo therapy.

Cpeachymom

meow- That was actually one of the reasons I wanted to skip chemo with a score of 14! I was 100% er +, Tamoxifen was my best chance at fighting this.

moth

for premenopausal women chemo usually works like hormone therapy in that it puts the breaks on the ovaries & tips women into 'chemopause', so I'm not sure that waiting for endocrine therapy while doing chemo is necessarily a disservice.

GreenEyes81

taking tamoxifen while on chemo will stop chemo from working. Don’t know about AIs though.

PatsyKB

Well rats. I had my meeting with my MO today and, wouldn't you know it, my OncotypeDX number was 24. Annoyingly high-intermediate. So under old protocol, chemo would be recommended. Now, it's really a gray area. I am single receptor positive (ER+99%, PR-0%, HER2-, so more aggressive than if my ER+ number were lower or if I'd had any PR+ at all). On the other hand, my tumor was tiny - 5mm. And the OncotypeDX assumes chemo and tamoxifen and a larger tumor than mine...I will note be taking tamoxifen as my MO has prescribed Letrozole, an AI, because it's more effective for post-menopausal women like me.

So: The graph on the report shows that, given the parameters of the OncotypeDX (some of which don't apply to me - tumor size and choice of hormone therapy) I would have a 10% chance of recurrence in the next 10 years without chemo; 7% chance with chemo.

Assuming that if we adjusted for my tumor size and drug choice, the 3% gain stays constant, is chemo worth it when considering the side effects of chemo plus the possible complications (1% chance of developing leukemia for instance)?

I am 67 and I have a lot more living to do.

I also have a lot of thinking to do.

I know no one can decide for me - and even my MO couldn't TELL me what to do. He could just give me the information and help me understand it. (In an oblique way he let us know that he wouldn't recommend chemo but that if I wanted to do it, he would order it.)

I was an art history major...not pre-med! I'm not equipped for this!!

Sigh.

I'm going to go watch something really mind-numbingly stupid on tv now.

Meow13

Patsy like you my tumors had strong 95% er and pr negative (totally negative) the alarming combination my grade was low mitotic score 1 so not fast growing. I was never convinced chemo would benefit I went directly on AI no waiting around. I am 7 years NED. And yes I do feel it helped me more than chemo would have. My onco says it was essential that I was protected by AI drugs. I was post menopausal, as moth points out. If I were premenopausal chemo may have been a benefit, chemopause. The problem is there is no way to know how effective treatment is. In the cases where chemo is done before surgery you can get an idea if the tumor shrinks in size drastically.

I don't think it is reasonable to think chemo will get everything but it sure killings those fast growing cells.

Many oncologist rely on chemo if there is a high risk ancer some don't have any faith in homone therapy or don't think it works as well.

Traveltext

I've read this important report on the TAILORx research and can't find any reference as to how the new guidelines might help newly diagnosed men. It's a pity that no men were included in the study and it's a pity that there's no analysis of the revised treatment options for guys.

nat_blue

I'm not in human medicine, but in veterinary medicine and have a tumor that will most likely have a similar high intermediate oncotype. Each person must make an individual choice, but for me, who is far younger than you, I would want more than ten percent absolute difference before even considering chemotherapy and even then might walk away from it as chemotherapy will be life changing. While chemotherapy is and can be lifesaving, it is not a benign regime but has its own effects on morbidity and even mortality down the line. It also is most effective against rapidly dividing cells. Unfortunately with more slowly dividing cells, it kills the dangerous cells at no better rate than it kills normal, healthy cells. As I understand the Tailorx study, those of us who fall in the intermediate range will have a 10-15% chance of recurrence with hormone blockers no matter the currently other available therapies. I, of course, prefer to think of it as 85%-90% chance I'm cured, and I then look at the small lifestyle changes that may or may not improve my odds by 2-3% but have no down side: normal BMI, intense exercise daily, a shopping cart heavy with fruits and vegetables, no processed foods, no alcohol, and absolutely no smoking.. Certainly the scentific literature suggests these changes decrease recurrence, but I got the blasted cancer with a healthy lifestyle. There are no guarantees in this world. Best of luck with your choice.

Georgia1

Good morning Patsy. Given the high ER+ score, Tamoxifen or an AI should do wonders for you, so it is only the PR- that seems to be indicating there might be an extra benefit of chemo. Can you get a second opinion nearby? I found that hugely helpful. And if that's not possible I've heard that MD Anderson or Johns Hopkins might do a consult via Skype or phone.

And Traveltext, yes I know, it's so disappointing when clinical trial leave out segments of the population. I hope you are getting good care.

moth

Patsy, what about doing the Mammaprint - it's another genomic test but gives a binary answer to the chemo question.

Meow13

Travel, it is all about statistics in this game and when you are part of a small group there is much data to go on. I am in a smaller subset but you are in even a smaller one than I am.

PatsyKB

Thanks for the feedback all - this is a difficult decision for me, at least it seems difficult right now.


moth - can't do the Mammaprint mostly because I've already done OncotypeDX and insurance will only pay for one such test. The Mammaprint will be simply a high/low answer and I consciously chose OncotypeDX because I wanted more information. In all likelihood Mammaprint would point to no chemo.


Georgia1 - I'm thinking about a second opinion and we do have a good oncologist here in our town. However, all she can do is to look at the same pathology and OncotypeDx results and give me her read on it which will, I'd bet, be the same as my present MO's - pointing to the small improvement in outcome with chemo (7% recurrence chance with chemo vs 10% recurrence chance without) and pointing out the differences in the study subjects vs me (they all had Tamoxifen, I'm going to have AI), and the tiny size of my tumor (very early, very small). And she may be constrained in the same way my MO is - as he said, in a different country, an oncologist would just TELL the patient what to do but he can't; he can give information and wisdom and guide me, but not tell me what to do. I am not sure there's anything to gain. As I said, I'm thinking about it.


nat blue - you and I are in the same boat in terms of diagnosis (single receptor, small tumor, IDC) and OncotypeDX and I appreciate your take on the statistics. My husband, like you, thinks in terms of a 10% chance of recurrence meaning a 90% chance of NO recurrence. And he also points out that many statistics are +/-3% or some other number, so that the 3% benefit I'd get from chemo could be negligible or nonexistent. FURTHERMORE, nat blue, I'm in that grocery cart with you - I have maintained an exceptionally healthy lifestyle and eating regimen. I even reversed pre-diabetes last year when I went to about 90% plant-based eating (and brought my cholesterol down to normal for the first time in 20 years). So this cancer crap comes as a giant "what the hell?" moment but a humbling reminder that we can't always control this stuff.

Meow13 - your reminder to Travel that this is all about statistics is right on the money. And as for being part of a small group, my RO yesterday commented that "It's never good in medicine to be part of a small subset." She's just realistic and frank which is one of the things I love about her.

I am definitely finding this harder than I should probably - had tears this morning and some disagreement with DH last night, which he didn't deserve...he's trying to help and understand and this is so hard for HIM to, so he shed a few tears this morning as well. I want to make the right choice. But is there really one Right Choice? Even with chemo and Letrazole I could STILL have a recurrence. And without chemo, I could be just ducky. Or the recurrence could come along in 10 years when I'll be 77 which is a hell of a lot older than my parents lived to... The thoughts roiling around in my head are exhausting today.

Thank you for being here.

PatsyKB

Maybe I'm overthinking this but I thought I'd ask - at what point do risks outweigh benefit when it comes to the question of chemo or no chemo? (Since I'm in the intermediate range of OncotypeDX, although high intermediate at 24), conventional wisdom now says chemo is not necessary. But I am still worrying over this.

The test results, assuming tamoxifen (but I'll be taking Letrozole) say that without chemo, I have a 10% recurrence risk (10 year); WITH chemo I have a 7% recurrence risk.

Is 3% benefit enough to outweigh the risks of the chemo side effects and possible serious problems?

And am I over-worrying and overthinking?

I need wisdom and I seem to be all out.

Cpeachymom

PatsyKB- uggh! Decisions...all awful choices that we have to make. No one can really answer them for you though. You have to weigh your risk tolerance and what decision you can live with. If you don’t do chemo and have a recurrence, will you be angrier than if you do chemo and suffer long term effects? There are no guarantees even with chemo, which you already know.

I think once you settle on the right choice, you will be at peace with it. I think so many of us make ourselves crazy with the “what ifs”. A second opinion doesn’t hurt and may help steer you. Good luck.

PatsyKB

Decision made and moving on with life. I’ve opted not to do chemo and I started my Letrozole on Tuesday. Only 5 (or 7 or 10) years to go!

Onward

nonomimi5

Patsy - I made the same choice. Will start hormonal early July when I come back from a trip. Probably AI since I am probably post menopausal. I had Oncotype 17. Enjoy your life!

Meow13

I actually went against advice of getting chemo, oncodx of 34, and did AI drugs. I am glad I didn't panic and really looked at the data. I hear so many BC patients throw the kitchen sink at it just to recur later down the line. Cancer is a strange beast if it were just that simple to do surgery, chemo, radiation and hormone therapy and you are done it would be a no brainer but it is not. We all should push back demand better treatment and better results.