Has anyone else faced unexpected Oncotype results for early-stage breast cancer?

Second opinion is always a good thing. What was your oncotype number? The suggestion may be based on the Ki-67 or mitotic rate of the cells. Also if you are younger than 50 it’s usually recommended. I’m sorry this all sucks for all of us.

Thanks for the reply. My Onco score is 30, post menopausal.

I am waiting for my oncotype score to come in. Hoping mine isn't high enough to need chemo cause I didn't tolerate chemo well at all. Dr's decided to end it early last time. This is my 2nd fight against breast cancer in less than a year. I am also postmenopausal. I have to start radiation in 4-6 weeks. Waiting to finish expanders first

I was in the same situation and declined chemo, but did radiation.

I am ‘young’ 78 years old. I had a small 7 mm tumor, no lymph node involvement and clear margins. Also, my KI67 was 4, based on my biopsy report ; Therefore, it was quite a shock that my oncotype was 30. Chemo was recommended but my oncologist said she wouldn’t know how to advise me even if I was her mother. I turned down chemo and afte my surgeon agreed with my decision . I had a lumpectomy, 16 radiation sessions and I’m now on letrozole . Chemo would’ve only made a 6% difference. I now have a 12% risk of distant recurrence .

Yes, my oncotype was 21 went on chemo and radiation. All of that being said nine years later got metastatic breast cancer in the bone now on Ibrance for four years. Not working so well now

So sorry to hear this Janice!

So sorry to hear this Janice.

So sorry Janice. We do all we can, and it can still return! My onco type was 56!!! I had chemo, radiation and on anastrozole… on the 7 year plan. But these aches and pains are getting to me.. I’m only 63, but feel A LOT older. But grateful to still be alive and be with my 6 grandchildren.

Kristi My Onco score was 24 I was borderline for chemo, first doctor recommended Exemestane. Second doctor Ki67 score 37 so recommended chemo. Got a second opinion and due to high Ki67 score - recommended chemo. I did chemo, it was manageable. I would wait see what your Ki67 score is before making a decision. I was stage 2B no nodes ER/PR her- I hope this helps

Thank you for sharing Katherine

I had similar pathology in Oct. of 2022. .8 mm tumor found during routine mammogram. They initially said so small probably just lumpectomy and radiation as they always do that with a lumpectomy. After surgery because of an oncotype score of 31, I was told distant risk of metastasis in 9 years was 20% which he felt was way too high. I was so distraught! Other pathology was ER + over 90%, PR 10%, Her 2 negative, micropapillary no lymph node and no vascular involvement and less then 1 cm. Grade 2, KI-67 of 19%. I believe official staging was TNM Staging: pT1b, (sn)N0, MX Stage at Diagnosis: IA. My oncologist highly recommended 4 rounds of doxatacel/ cyclophos. chemo and after that 16 rounds of radiation and letrozole for 6 to 10 years. I did as suggested and actually tolerated everything pretty well which I am certain you would as well. I was told lowered my reoccurance risk from 20% to between 5 to 10% which is a 50% reduction. Well worth it in my opinion. Obviously chemo is no joke and I did lose all my hair but with new medications I don't think I even has any nausea. Only significant side effect I remember is fatigue and hair loss. I was 57 yrs old at diagnosis and very active so hoping for a long disease free life which I am praying for for all of you! I did have a question about the other test you said gave you a 9 % future risk as a oncotype of 30 would been a 19% risk? I am curious if this is a new test as I don't think I had that done. Who knew until we had to know that there was so much to know about cancer. I thought stage 1 was stage 1 and had no idea all this other stuff came into play. Best wishes. Happy to answer any specific questions you may have about the treatment I had.

We have some similarities Kelly H. My tumor was 7mm, grade 2,pT1c, two nodes negative. Stage 1a. IDC /Micropapillary with associated DCIS. Oncotype was 2. No chemo. Took exemestane for 5 years. Been off 1 1/2 years now. Breast index score was 2.4% so AI’s said take for 5 years not 10. Joint pain disappeared within a couple of months after discontinuing. Still have hot flashes to this day. Meds for them seem to give you more side effects so going without. Tried acupuncture but no luck. I guess mine are the stubborn type!!🥲. There IS life after all this though. Other than the mental crap you go thru with this bully, i have no complaints!Hang in there everyone! 🏖️

Thankfully I have never had to deal with hot flashes, joint pain occasionally which is much better if I stay active which is the last thing you feel like doing. I had a full hysterectomy at 38 really an oophorectomy where they took everything, ovaries gone,no replacement hormones , no family history but cancer doesn't care. Mine is highly Estrogen positive so go figure!!?? Glad it sounds like you are doing so well and didn't have to do Chemo!! It sounds so vain but losing my hair was really hard on me. Best wishes to you!

I had very similar Oncotype results as you did. My oncotype score was 29. I was Stage 1 HR+ HER- 8 mm tumor with no lymph node involvement. I insisted on getting another genomic test(Mammaprint) which came back low risk of recurrence. My doctor took my case to the tumor board and all six doctors said no chemo. I also solicited 3 other dr opinions and all said no chemo as well. I did not do chemo in the end. Subsequently the RSCLIN model was released and the model considers Oncotype score, size of tumor, grade of tumor, planned hormonal treatment and your age. My results showed 95% of people are not expected to have a recurrence, 5% of patients expected to have a recurrence and of that 3% of patients are expected to have a benefit of chemo. Many doctors don’t order the Oncotype when your tumor size is less than 1cm which is what was originally studied.

When did that RSCLIN model come out? My Dr's and surgeon all thought no chemo until that dumb oncotype score came out and that was it. Changed my whole world. They didn't give me an option or any other genomic tests except the one to make sure I didn't carry the BRCA gene for my girls. Wonder what else we have in common and if my risk would be similar to yours.Seems like same size tumor, no node involvement, grade 2, I am 59 and taking letrozole. Because of oncotype score they said 20% chance of distant metastasis in 9 years?

I think the RSCLIN model came out late 2020 or early 2021. I total understand when you say it changed your world…I felt exactly the same way. It was a gut wrenching decision for me even with an additional genomic tests because originally my dr said I needed to take chemo too after the Oncotype. I will never know if I made the right decision or not regarding chemo. My cancer was found in March 2020, so almost 5 years ago. I still worry about a recurrence every day. I pushed for the Mammaprint because the Oncotype was an outlier and totally unexpected. Then the drs reversed their recommendation and as I said, I still got more independent opinions as well. I was so happy when my Dr ran the RSCLIN model and perhaps your doctor can do the same. It literally takes one minute to do. I was stage 1, Grade 1, 8mm, HR+ HER2- with a KI67 of 1%. I just noticed you indicate Stage 1 DCIS. I had Stage 1 IDC and I also had DCIS considered intermediate. Years ago, Oncotype didnt have a test for DCIS. My DCIS was not tested via Oncotype. My IDC was. I have read that low progesterone scores can impact Oncotype scores. My progesterone was 50% and my estrogen was >95%. Lastly, I take Anastrozole and based on the breast cancer index test, my dr wants me to stay on for 2 more years. My other oncologist said no the benefit doesnt outway the risk. So I am at another decision point since it will be 5 years in a couple of months for me and I need to make the decision on whether to stay on Anastrozole for another 2 years or not.

No I didn't not have any DCIS, just IDC. Mine was Stage 1, Grade 2 and my Ki67 was 19% which maybe explains my Dr's insistence on Chemo. I was diagnosed in Oct of 2022 and I never was offered any of the other models of risk? I know my Estrogen was over 95% and Progesterone I believe was 25%. It's so much info and very overwhelming. All we can do is have confidence in our decisions and our Dr's ability, and for me a strong faith in God promises. Wishing you peace and continued good health!

I was diagnosed in December, 2023. Surgery in January, 2024. Age 74. I was node negative but my oncotype score was 31. I had 4 rounds of chemo spaced 3 weeks apart beginning Feb. 14, 2024. I was very depressed and frightened about the chemo. I must say that it wasn’t as bad as I feared. Infusion day was not bad at all. I just sat there and read for 3 hours. I felt fine that day and the next. (I went out to lunch.). On Friday after my infusion on Wed I got the Neulasta shot. The achiness began by Friday evening and lasted through about Monday or Tuesday. After that I felt pretty normal until the next infusion. The chemo definitely afffected my appetite, and I was pretty fatigued by the 4th treatment. 2 weeks after chemo, I had 20 rounds of radiation. By the end of summer, the fatigue was much better and I was feeling much more normal. It was definitely worth it to reduce the chance of recurrence.

My onco score was 33 stage 1 grade 3, they suggested chemo I refused it. I did radiation.Now i'm on astrolozole 5 years

I had the same prognosis as you, but since my oncotype score was 18, I was not given chemotherapy but did 16 radiation sessions and am now taking 2.5 MG of letrozole for 5 years. The only problem I had and still have after the surgery was that my SEROMA had to be drained 4 times. it is now almost 4 months after surgery and the seroma has filled up again. It does not hurt, but it is hard and annoying.

I also had a fairly large seroma after surgery. Painful at first. Never had it drained as Dr. Said it would just come back. He did send me for lymph massage that really helped. I believe is gone or so small I don't notice it. I had surgery. 4 rounds of chemo and 16 rounds of radiation. I also take letrozole.

Unexpected Oncotype results can definitely feel overwhelming, especially when they differ from what was initially expected. Many others in this community have shared similar experiences of surprising test results that changed their treatment path. Getting a second opinion is always a reasonable option when facing important treatment decisions - it can provide additional clarity and peace of mind as you move forward.