I have posted about a the Oncotype Test before but I would really like to hear about other people’s experiences as I now have a decision to make. I am being seen privately and have Invasive ductal carcinoma (12mm) and a very tiny area of DCIS. It was grade 2, er+ (8) and pr+(7) .The area was removed and the sentinel node and LVI was negative. They also told me my Ki67 was 5.6%.
I met with my oncologist and asked about the Oncotype test and she said she wouldn’t recommend it unless I really wanted to do it. She said that my a tumour profile mean that they are not thinking about chemo.
I am being seen privately ( through my husband’s insurance with work) and I checked and the test would be covered. The oncologist said that the test would delay radiotherapy and me starting the hormone tablets. She also said that the result of the Oncotype test would be very unlikely to come back high but asked how I would feel if it came up with low intermediate result/ grey area -she added that they probably still wouldn’t recommend the chemo in that situation but would go with my decision.
I really want to hear from anyone with a similar profile and to know whether you had the Oncotype just get people’s views given your knowledge,/ experiences. It also probably relevant that I am 42 ( so relatively young)
Having replied to your previous posts I just wanted to say I’m happy to hear you had a good oncology consultation. I can understand her reasoning & recommendation with the pathology facts stated. The Ki67 (rate at which cells divide/grow) is on the low side (from what I recall a figure less than 5% is considered low & more than 30% considered high), but have heard that this is not always reported in all histopathology reports in the UK as its accuracy isn’t consistently agreed on.
Regarding the point she mentioned about the delay in starting hormone treatment and radiotherapy, I personally don’t believe that would be significant, as the oncotype score would be back within 3 weeks. But the decision to have/not have the test would need to be made soon in order for the next step to commence without unnecessary delay.
I think the key question I would be asking myself if I were presented with those facts is the one she has asked about whether I would accept chemo or not if the oncotype score was either intermediate or high. And also if I would regret not having the test to make an informed decision myself.
If on the other hand you are comfortable/confident with the explanation/recommendation given to you by your oncologist then you may decide against the need for having the test.
I was diagnosed at age 48; my tumour profile was different to yours so cannot really be compared. But what I can say is that I knew being analytically minded, I wanted all the information/data I could get a hold of to help me make informed decisions throughout my treatment journey. I also used pro’s and con’s lists to weigh what was more important to me. There were instances where there was no clear winner & I didn’t have all the information I needed, where I went with my gut / values.
I was in a similar position to you when it came to making the decision to have radiotherapy when my oncologist gave me facts and figures explaining he didn’t recommend it but would support me in whatever decision I made. I made the decision to have it with my own reasoning.
I hope you get the information you need to help decide.
Thanks so much for your reply. I know I am a bit like a broken record with this but it’s really tricky. The oncologist really
didn’t think the Oncotype was warranted.
I think a challenge would be if it came back in an intermediate area . I think the team still wouldn’t recommend chemo at that point but I would need to make the final decision which would be hard. I am indecisive at the best of times but this really hard.
I completely understand what you mean about having all the information.
I am going to let her know tomorrow what my decision is.
I can understand where you are coming from and that these decisions are really difficult.
Not sure if this helps, but just another individual perspective if I were in your position with that profile, I would request the oncotype test and gather your thoughts on what you would do if the score came back intermediate while you wait for the result. My reasoning for going for the test would be because its a grade 2 tumour. In my mind the ODX test will give you as close a sense of being certain about whether chemo would or wouldn’t be beneficial. That way I’d know for sure that I was making my choice in an informed manner.
Personally if the score was intermediate, I would think about if I wanted to throw the kitchen sink at it (the words my oncologist once used, when I was trying to make a decision) or whether I was confident not having chemo based on a combination of; 1. Intermediate ODX, 2. low Ki67 marker (as chemo works better on faster dividing tumour cells), 3. along with your oncology recommendation (risk vs. benefit) explanation.
Either of those choices would be perfectly reasonable. But ultimately a very personal decision.
What are your thoughts on the impact of delaying the further treatment
I don’t recall when your surgery was, but if it was within the last 4-6 weeks, I wouldn’t consider there would be a meaningful impact delay in starting endocrine treatment and radiotherapy by having the test.
I went through a similar swaying thought process at the time I was waiting to find out whether an Oncotype test would be done for me or not. I spoke to a pathologist (clinical lead for south east england) at length to understand the detail in my histopathology report, and she said that the timeframe for starting chemo (if required, and if not required then RT. RT is always after chemo if both are included in the adjuvant treatment plan) is within 90 days of surgery. And when I raised the question about whether it would be too late to start chemo/RT if I waited for the oncotype test with my oncologist she said it wasn’t but the important thing was to get the ball rolling by initiating the request to release the tissue block from the bank. So the process is smooth so long as decisions are made in a timely manner. The oncologist received my ODX result 2 weeks from my appointment with her to discuss initiating it.
Just FYI: After I received my oncotype test results, the process of scheduling RT was also smooth (for me I had to meet the clinical oncologist to discuss MDT rationale etc…), but not sure if this varies depending on where in the country you are being treated and how busy your designated RT centre is. Once the oncologist sends the request to the RT treatment centre they contact you advise that they are requesting authorisation from the insurer. For me I received my CT planning appointment within 1 week, and the week after that my 5 fractions of RT commenced.
Thanks for this response. I am going to speak again to the oncologist. A big part of me just wants to get going. I am not sure how common it is to get a high onco score with my profile.
Can I ask what made them recommend the Oncotype for you in the end.xx
Hi there
I just wanted to share my experience as my diagnosis was very similar to yours, my tumour was slightly bigger at 15mm and I did have LVI.
Like you I have had all my treatment privately. I pushed for an oncotype test and was very disappointed when my Onco score was intermediate and not low as we has been lead to expect.
My oncotype score still didn’t warrant chemo. My oncologist said chemo would be like “burning down your house to light your woodburner”. He did recommend that with my score and my very high ER (8/8) it would be useful to dial up the hormone therapy. So in addition to tamoxifen I am having ovarian suppression injections. I’m not going to lie to you, the side effects are hard and I sometimes wish I hadn’t had the oncotype test and therefore could avoid the injections (zoladex) but I am glad to know I am doing all I can to minimise my recurrence risk. I am the same age as you and have young kids.
Based on my own experience I don’t think the oncotype test should delay you starting radiotherapy? Mine was scheduled while I was waiting for my results.
I hold on to something my oncologist said “even with this intermediate score, the most likely outcome is that your cancer never returns”.
xx
Thank you so much for your message. Can I ask were you also grade 2. I think I am going to go ahead with the Oncotype. The Zoladex injections sound tough but as you say it’s good to know you are doing everything you can.
For me the test was recommended because my final tumour profile was in a group where benefit vs. risk of chemo wasn’t clear-cut. I was mentally prepared for chemo based on clinical conversations & info I had gathered while waiting for my oncology appointment, then the score came back low with no chemo benefit. My mind was like a yo-yo where initially I was in the no chemo group, then in the possibly be prepared for chemo, and finally ended up being in no chemo group again.
If you are wondering what the ODX report reflects it actually includes more data than just a score which helps if you are someone who wants to understand more and the oncologist can explain. I personally think it can help an oncologist tailor treatment better even if it is intermediate e.g. where in the intermediate spectrum does it fall, how strongly ER/PR positive the tumour is are all reflected in the report.
Thanks for all of this information. I hate waiting for something else but it’s good to know that you found it useful. From what I understand I am strongly er and pr but maybe the Oncotype will show something else.
Hi 
! Greetings from over the English Channel!
I had a right breast mastectomy 3 years ago, similar to your pathology: G2 IDA, 5cm, ER8, PR6, HER2 2+ SISH negative, sentinel clear. Before the operation both hormones were 8 and 8, afterwards the pathology said 8 and 6. They made a separate test for the HERS-2 as it was not clear, but thankfully it was negative.
Diameter: estimated at just over 5cm, with small satellite nodule at 2 o’clock.
Because my Ki67 result showed that my tumour had been reproducing at a very fast 40% (normal is 15%). They asked me if I wanted the MammaPrint (not sure if it’s the same test as yours) and I came as high risk, so they recommended chemotherapy, which they had tried to avoid before the test.
As your tumour was smaller and reproducing slowly, maybe that is why the don’t recommend it, but if it’s covered by the insurance I would do it as it will give you peace of mind.
Take it one step at a time, listen to your body and guts, be as healthy as possible, do things you enjoy and enjoy the present moment. I wish you all the best. 
Thanks so much for all your replies
I am now going ahead with oncotype. There was a small issue with insurance but that has been sorted out. I do wish they had done it earlier in the process as I am now ready for the next stage of treatment but have to wait for the results. I won’t like I am nervous d about what the recurrence score will be and if I will need chemo. But I am pretty much anxious about all of it. I have gone back to work while I wait for the next stage of treatment and that is helping me to keep my mind busy.x
It doesn’t hurt to buckle up, I can’t find the post now, but last year I read on here of someone who had low grade small tumour, no node involvement, her Oncotype test can back a positive high. This test is a guidance, the consultants go by research, and there are always exceptions to rule, and that exception could be you, so go for it. x
Hi there…i have grade 2, er+ her2- and had a surgery mid-Nov. 4 weeks after surgery, at the multidisciplinary team meeting they suggested OncotypeDX test, as i were borderline apparently and just about to get 50. I was a bit unsure as i thought i would be going into radiotherapy right away but they said it would help to understand whether chemo would be beneficial. It was a stressful time as i had to wait in addition to the xmas break. The score came back low so i will have my first meeting with the obcolgist early Feb.
All of this discussion made me wonder if I had gone over the 3 months period from post surgery, for a couple of weeks or so, before I could start both hormone and radiotherapy, would that be a big problem?
I also have to travel beforehand abroad for a family emergency. Sorry to be adding more questions and concerns to the mix…
All my best to you all…xx
Let’s hope not, I had my first surgery in October but unfortunately found in lymph nodes so second surgery in November, just had onco score yesterday and not having chemo, now waiting for oncology appointment before radiotherapy & tablets, we asked yesterday if all this waiting was an issue but they said no as the cancer has been removed
Wishing you well
My BCN said that radiotherapy should be fine if it is just slightly delayed. She explained that some women have issues with surgery which means it is significantly delayed.
I am still waiting for my Oncotype results. How long did people find they take?
I have gone back to work while I wait for the next stage of treatment . I share the deputy role at a school but I am part time. It’s been a good distraction but I still have moments where I am just gripped with anxiety. I really want the result of the test back.
Mine took 3 weeks for me to be told what they were. Think they were back in 2 but then mdt have to meet in my area before I was told the result.
Xx
Thanks for replying so quickly. I think I might still have a bit of a wait going by this. I am rubbish at waiting.
Hi eb13. My oncotype result took 8 weeks to come back (no reason given) and the waiting period was nerve shredding. My score was 34 so chemo was added into the mix. I pray that your score is low and you avoid chemo altogether. Good luck!