OncotypeDX results and the results of the TAILORx study

Optimist52

Patsy, glad you've come to a decision! My Oncotype was 22 and my MO was quite certain chemo would not be of benefit (my other stats were worse than yours). Best wishes with the letrozole.

Reckless

My oncotype was 19, and I did not do chemo. Now it seems I should have as I was 46 and pre-meno...

PatsyKB

Amazing how stress evaporates once the decision has been made! Now, as I tell concerned friends first hearing about my BC, I am living my "New Normal," which means taking a pill once a day and moving on with life.

Breast cancer? Been there done that...in the rear view mirror. Not even thinking "unless/until there's a recurrence;" nope, not going there.

Opptimist52 - I envy you the certainty your MO expressed; mine felt he could only provide information and, even when I asked directly, "What do you recommend?" did not give me a definitive recommendation. In retrospect, I think he was actually wise and prudent in this. We have all the information necessary, and I could sense in the various statistics and facts and pieces of information he provided, what his inclination was. Ultimately, that's the direction I took and, maybe because it was my decision and I have to own it, that is the source of my calm.

Who the hell knows! All I am certain of at this moment is: I'm me, today is June 16, 2018, I have 1823 days (at least) of Letrozole to go, I feel great, and I'm getting pedicure in two hours.

nonomimi5

Patsy - LOVE your new normal. Good luck and I'll join you soon!

Meow13

I think there are oncologists that just don't have confidence in hormone therapy and prefer to use chemo first to knock it down. Unfortunately, there is not a way to know if the hormone drugs are working. In my case, for recurrence my doctor says there are no tests to tell, he just looks at tumor markers. There is one if you have detectable circulating cells, doctor says won't help in my case. It is all about statistics.

Also the 5 vs 10 on hormone therapy has flipped back and forth. Last appointment in December my oncologist still says 5 years.

PatsyKB

Meow13 - I agree absolutely that BC can recur even with absolutely everything done to prevent it; what a crap-shoot it can be. Sounds like we both approached it from a risks vs benefits standpoint. I feel like I'm in good company, having opted to go directly to the letrozole.

nonomimi5 - Keep us posted and let us know what AI you're on. I'm on letrozole (brand name: Femara) because it's my MO's go-to 1st AI to recommend. As he said, everyone reacts differently to each of the 3 AIs and so we have to start somewhere.

And Reckless, is it every possible for us to make exactly the right choice? As though there IS one? All we can do is to act on the information available at the time of decision making and throw in some gut-instinct for good measure.

Fingers crossed for all of us!

Dodgerick

Hello brave ladies!

My ONCOTYPE DX came back with a score of 17, and my oncologist encouraged me that chemotherapy would not be necessary or add significant benefit in my situation. I was so excited that I wouldn't have chemo! I've completed 5 weeks of radiation to my chest wall and regional lymph nodes with minimal side effects on May 31, 2018. I have yet to find another breast cancer survivor of ILC and DCIS with lymph node involvement, that has skipped chemotherapy and I'm really nervous about it! I would like to know if there is anyone out there in my situation, please?

Meow13

Dodgerick, lily55 is one but her situation was different stage 3 with I think 7 lymph nodes. I think she is having her reconstruction surgery now and is at the hospital. You could message her. She is nice and friendly.

edwards750

My sister has ILC. Chemo wasn’t recommended for her. She did hormone therapy. Her Oncotype score was intermediate. She is 5 years out. I will be 7 in August God willing. I took Tamoxifen for 5 years and MO said that was enough.

You make the best choice at the time based on information you have. Don’t second guess yourself. It will make you crazy. I am not sure I would have had chemo had it been recommended but fortunately didn’t have to make that choice. I had 33 radiation treatments. My Oncotype score was 11.

Thing is we all know you can do everything and the beast still comes back. It truly is s crap shoot.

Good luck!

Diane

Meow13

I never had to deal with a positive node, but oncodx scores you if you have less than 3 nodes positive. They tend to error on the conservative side of treatment. Don't let your friends influence you, my family strong armed on chemo but I made the choice not them. My oncologist wanted chemo too, but I really thought no. I didn't get the cancer back yet, 7 years.

lala1

One thing an MO friend told me when I was diagnosed....he said to keep in mind that just by having been diagnosed with BC I would now receive some of the best health care available. He said I would probably outlive all my peers just by being closely monitored by doctors pretty much for the rest of my life. He also said that if I had a recurrence, it would most likely be caught when it's early and small and treatable and that with my stats that if it recurred distantly it would probably be 10 years or more from now and that by then we'd have all sorts of new treatment available. He told me that the advances in BC in the last 5 years are almost equal to what has been achieved in the previous 40 years! Based on a crappy BCI test score that showed me high risk of recurrence but low benefit to continuing Tamoxifen, I finished my 5 years and elected to do no more so I'm trying to remember these words whenever I second guess stopping Tamoxifen. And my sister's MIL who just received her THIRD breast cancer diagnosis 4 months ago (first 2 were separate tumors but third was Stage IV--in her bones, liver, spine, everywhere) just messaged me to tell me her PET scan just came back clean!! No sign of any tumors!! So I'm coming to peace with not being on any therapy and trying to exercise and eat (mostly) right and just live my life with as much joy as possible.

Meow13

lala, so true my mo prescribes MRIs at the drop of a hat for me. I did have one doctor ear,nose and throat that tried to make me feel ridiculous for having a sinus mri but I just said hey my oncologist insisted I have it so there.

CBK

lala1

When did you have the BCI test done?  I haven't had that completed or even mentioned to me. 

I like your MO's line of thinking.

Lisey

Just a note.  I had an intermediate oncotype of 20.   I was 41 on diagnosis.  I had low PR of 5%.   I chose to do mammaprint and they told me it would max cost me $500 if insurance didnt' cover it.  (they never did bill me - 2 years so far)..   Mammaprint was so HELPFUL in deciding to do chemo or not.  They test the material twice and both times came back low risk.  No chemo for me.   My doc told me at 3% benefit for chemo, the risks equal the benefits (3% chance of cancer, heart issues and higher chance of neuropathy and lingering conditions).  

SpecialK

CBK - Breast Cancer Index (BCI/bioTheranostics Lab) is done at the 5 year point to help with the decision whether to continue taking anti-hormonals or not.

chocomousse

I asked my oncologist for an Oncotype DX test during my last visit as it wasn't ordered for me after my path. report since I was HER2+ and it was assumed to be high but I wanted to know anyway so he ordered it and based on the results, my recurrence score is 63.

In the quantitative single gene report section it says:

ER score 7.4 positive

PR score 5.6 posive

HER2 score 13.0 positive.

I don't know know what these results mean.

edwards750

chocomousse - if I understand your stats correctly you have had BC twice in one year? Early stage at least.

I had the Oncotype test done too to see if chemo would be beneficial. I had IDC, Stage 1b, Grade 1.

My score came back at 11 -8% chance of a recurrence so I dodged chemo. 5 years on Tamoxifen. 7 years out next month.

Idk about the other info but 63 is a very high score. I would consult my doctor.

Diane

chocomousse

@edwards. My BC was diagnosed and treated in 2015. I was initially diagnosed with DCIS via biopsy in April 2015. I had a mastectomy in August 2018 which also revealed the presence of IDC tumors. I had other comorbidities so my oncologist thought the risks of herceptin and hormone therapy outweighed the benefits, especialy since the IDC tumors were small and I was node negative. I'm 3 years out and my oncologist told me that the risk of recurrence is highest within the first 2 years but reaching the 5 year mark with NED is the goal. But I noticed that the oncotype test assesses risk over a 10 year period.

Tigerlily318

Hi all, this post is my first. Thank you for the discussion, I had found that article. I had my biopsy on 7/17, was diagnosed on 7/20, and am having surgery tomorrow (7/30). The doctors believe, based on the biopsy, it is not in the nodes (fingers crossed) so an OncotypeDX is most likely in my future. I'm 45 and pre-menopausal. What I cannot seem to figure out is whether there is any information about what percentage of women are in the "safe" zone, intermediate zone, or clear cut for chemo (I recognize it is different for women over 50/post menopausal). At this point, given that the most biopsy results are benign percentages did not work out in my favor, I know I need to wait for the results, but am curious if there are ranges. My cancer is 90% ER+ and PR+ so I believe will be highly receptive to hormone therapy. My doctors went over potential treatments and are optimistic I can avoid chemo, but emphasized that until the surgery and analysis we don't know anything and have to take it one step at a time, which I appreciate. Any thoughts are helpful, thank you. 

SpecialK

tigerlily - here is a graphic that shows a compilation of several studies and the breakdown of results on OncotyoeDx scores:

Tigerlily318

Thank you so much, that's something. Looks like its 50/50....

PatsyKB

chocomousse - I agree with edwards750: have a discussion with your oncologist and ask him/her to explain the results, the risks, the implications, the numbers and graphs with you. My MO spent a long time with my husband and with me and we went home with a thorough understanding. In addition, the results of the TAILORx studies (the previous plus the most recent one) are very helpful. But mostly, talk to your MO. 63 is quite high and indicates the need for chemotherapy.

My number was 24, in the top 1/3 of the Intermediate range (11-30). Above 30 is the High range and chemo is recommended, as the benefits outweigh the risks. There were many factors which went into my decision (risks vs benefits, the medication I'm on - an AI as opposed to Tamoxifen, the profile of my cancer - stage, grade, aggressiveness, size, etc, and more) all factors discussed with my oncologist.

The more information you have, the easier it will be to make a rational decision that is right for YOU. Your oncologist will be (should be) more than happy to discuss this with you. Keep us posted.

The early TAILORx study, which was looking at whether women in the 1-10 range could safely skip chemo, is here: https://www.breastcancer.org/research-news/oncotyp...

The most recent TAILORx study looked at the 11-25 Intermediates (middle-of-intermediate) and that study is found here: https://www.breastcancer.org/research-news/oncotyp...

NotBrokenJustBent

I was classified as 1A 5 years ago but because I was relatively young at 54 and grade 3 I was borderline chemo with an Oncotype of 20. Ultimately after much discussion I was encouraged to do it. I did but now in hindsight I should not have? Fast forward....I just got a BCI test to see if I would benefit from over 5 years of blockers. The test results shows that for the first 5 years I had a 20.7% risk of distal recurrence but now after five years it has decreased to 11.3%. The 11.3% was consistent w the oncotype but the risk of 20.7% recurrence was alarming but hopefully I am past that danger zone. My thoughts,... perhaps the chemo helped after all to protect me for those first 5 years? If so I am glad I did it.

Cindymb

I'm curious if any of you girls had received both the ki-67 percentage and the Oncotype and how they compared?

Thanks, Cindy

DebAL

Hi Cindy, my ki 67 was 24% on path and oncotype. ER was 100%, PR 3% on path ( pr considered positive) oncotype ER was like 8.5 % ( I expected to be higher based off the 100%) PR was 5.4 which is considered negative which I missed positive by 0.1. By what others have posted oncotype seems to bring down the score compared to the path. I really don't know which one trumps the other or if it really matters..unless of course oncotype changes things to triple negative then treatment options would change.

Cindymb

Thanks DebAl,

I go for my Oncologist appointment the day after tomorrow. Im going to ask about Oncotype test but my ki67 was high. Did you receive chemo because of your score, pre-menopausel or both?

DebAL

hi cindy, my score and I'm post-menopausal. You can ask for the oncotype or mammaprint test. The more info you have should help in decision making.

PatsyKB

Cindymb, please keep us posted. The decision-making process is sometimes daunting and we're all here to support you. You can read my story above - I was on the cusp of chemo/no chemo and it wasn't easy making the decision. But DebAL is right (as she so often is!) - the more information you have, the better. I polled my MO (who didn't give me a straight "you should/shouldn't" but did give me all the info/data I needed), my RO (who did give me her opinion) and I also called a local MO here in Sedona who is in the same practice as my MO in Phoenix and who gave me a straight-out answer. In addition, I talked with my primary care physician who defers to my cancer docs but who is always candid with me. And, of course, I came here and went online as well do to lots of research.

Ultimately, I had to go with what felt right in the long term as well as in the short term. AND I recommitted myself to my dedication to plant-based eating (95%) and exercise in order to minimize risks.

You'll feel so much more at ease when you have your plan - that's what everyone told me and they were right.

Murfy

Hi Cindymb: I noticed we have the same genotype! As you can see below, my Ki67 was 55% (high). My MO and 2 'second' opinions were leaning towards hormone treatment only until I received an Oncotype RS of 52. All three then strongly recommended chemo. Didn't want to do it, but glad I did now.

Cindymb

Well the MO ordered my Oncotype test today. I was surprised as my ki-67 was 51%. It takes up to 2 weeks for the results so more waiting..... I have a 50% chance of not needing chemo, trying to stay optomistic.

Thanks girls, 🤗