Hi Eb! Considering you were hormone positive with a negative HER2 result, yes you should get an oncotype test. Chances are you won’t need chemo since it’s a grade 2 but I’ve seen plenty of grade 2’s come back with scores high enough to recommend it so it’s better to be safe than sorry.
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I didn’t have an Oncotype test and my situation sounds fairly similar to yours. I had a 14mm IDC with integral DCIS, which came out together, Er+ 8/8 Pr+ 6/8 HER2-. It was Grade 1 though. Clear margins, no lymph involvement, no LVI. I was 66 at the time. I was told upon enquiry as to why I hadn’t had an Oncotype or any other similar test, that, in their experience, I was unlikely to get a recurrence and chemo was not appropriate ( which I was delighted about). So it doesn’t seem that everyone gets tested in the UK, I’m guessing because of cost to the NHS. I don’t know how easy it would be to insist upon having the test but, if it is going to make a difference to your ongoing mental health, I would definitely try.
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Thanks for replying. I am actually under private as we have insurance through my husband’s work. I am wondering if this is why they haven’t mentioned it yet. Everything has happened very quickly so perhaps they will only discuss oncotype when I see the oncologist. It maybe I will have to transfer over to the NHS for it. I am definitely going to ask at my next appointment.
Now I am slightly worried that they won’t be able to do it. I am also wondering whether chemo is more likely for me because I have read the thresholds are much lower if you are under 50.
Yes, I was aware when replying that I am older than you and, when I was diagnosed, I was 12 years past menopause so a different ballpark. I was really just trying to point out that we don’t all get genomic testing on the NHS but as you’re a private patient, I would have thought you could insist upon it. I seem to remember that Oncotype testing costs around £3000 so either your insurers or you yourself could pay for it to get the peace of mind you understandably need.
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I understood that grade 1 doesn’t get oncotype. Grade 3 does have oncotype as well as some grade 2 depending on size.
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Since you are under 50 with a grade 2, you need an oncotype. Whether you can get it or not is another story but it is the protocol for a best care scenario. And the thresholds are different for us. I had a grade 3 but if I had been over 50 chemo wouldn’t have been recommended with my score. But since I was below 50, chemo was recommended despite my clear margins, negative lymph nodes and no LVI. I went ahead and did it and am glad. It wasn’t easy but I got through it and made a complete recovery.
Thanks for the reply. I am a bit concerned that it hasn’t been mentioned to me and the consultant just seemed certain would be radiotherapy’ and hormone therapy. I am going to ask at my next appointment. I also don’t really want to pay £3000. I am under private because we have insurance through my husband’s work - hopefully they will still cover the cost. At what point in the process did they organise the oncotype as I am also a little worried about further delays to treatment and did you have the radiotherapy’ or chemotherapy first. Chemotherapy makes me feel so nervous but if it’s recommended I will do it . Di you have children mine are nearly 6 and 8. My youngest has just been diagnosed as autistic . I got his diagnosis confirmed for days after mine- I don’t think I have ever felt so overwhelmed . His autism is quite subtle but I feel like it’s going to be such a tough road ahead over the next few months especially if I have to go through chemo.
Hi
I was offered the onco test this week when I received my axillary clearance results. I’m 58 and was asked would I except chemo if the score is that I would benefit from it, they wouldn’t have gone ahead if I said I wouldn’t have chemo, mine is being sent to California and I believe it’s about 5,000 dollars if you Google it. I had a 1.6mm grade 2 with 2/8 lymph nodes affected.
It wasn’t mentioned to me until this week and I was told I sit in the middle group of not sure if chemo is beneficial .
Waiting 3 weeks for these results so next appointment 17th january.
Waiting waiting waiting
Jackie xx
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Thanks this is useful to know.
I’m in the US and standard of care here is the oncotype test. My private insurance did pay for it so I would think your’s would too since it’s such an accepted part of information gathering. They sent my tumor off for testing after surgery. It took two weeks for it to get back to me. And of course you’re worried about chemo. I was, too. But the chemo I did was T/C and it was four session three weeks apart. The first two I didn’t really feel all that affected. My side effects started with the third round and by the time I hit the fourth I was ready to be done. But I was so it was okay! A month afterwards I started recovering and did it fully. My kids were both home but teenagers so that was helpful. You will probably need some help with your kids being young but more along the lines of housework. Chances are high you won’t be flat on your back or really even sick. Just fatigued and weak. Anyway again, this is all if you need chemo and you probably won’t. But they shouldn’t assume that with a grade 2 and being younger than 50. I’ve seen some grade 2’s come back with wicked high oncotype scores and if chemo works for you, you need to have it, and that’s exactly what oncotype determines.
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Wow Jackie
You’ve had your results quickly I think, compared to me. Your experience is similar to what I am expecting.
Fingers crossed for good results xxx
No my results took five weeks
Xx
The waiting is the worst!
Xxx
@eb13 In terms of when OncoTypeDX is offered in the UK if you are being treated under the NHS it would be driven based on MDT discussions which follow the NICE guidelines here on when and who to offer it to. From what I understand the NHS eligibility criteria isn’t quite as simple as anyone who has a early stage ER/PR+ HER- & stage & grade BC profile etc… They seem to use the PREDICT+NPI scores to establish if there is a intermediate / higher risk of recurrence (as well as taking into account if the patient would be willing to have Chemotherapy in the event the ODX score did ultimately suggest benefit) to make the decision on whether it makes sense to offer the the test. Their considerations are two-fold, giving necessary/unnecessary chemo & the NHS cost associated with that treatment (very high compared to an ODX test) which may be avoided via a ODX result.
I learn’t this first hand when I didn’t get answers to my own questions about ODX testing during treatment in the order / time I thought was logical to me. My BC profile was different to yours in that 1 node was positive. I ultimately switched to have oncology treatment under workplace health insurance primarily for better/more timely & clear communication than anything else.
My first oncology appointment was focused on explaining my PREDICT score and thereafter why a OncoTypeDX test was going to be done. I had the ODX result appointment back in ~2 weeks. When finally being discharged from NHS surgical care after two surgeries prior to that I learn’t that I would have been offered the OncoTypeDX test there too, but it was just too difficult to get information I needed in a clear and timely manner.
If you are under private health insurance as you say it will most certainly be one that should come up based on the BC tumour profile you’ve mentioned (there is definitely no need to transfer to NHS for it, as the criteria under the NHS is more stringent than under private health insurance). If it’s not mentioned when you meet your oncologist do add it as a point for discussion. Typically the surgeon should also mention this, but I expect it may also be one that has been left as a discussion to happen with your oncologist.
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So I was given this booklet explaining criteria for oncotype test. I am in ireland and this is free under our public health system. Hopefully you can avail of this for free, it does not seem reasonable to have to pay
If others are being offered for free…definitely worth bringing it up at next appointment. Good luck. Xx hopefully image attaches…
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Thank you so much for replying. This is so helpful. I just find myself feeling really overwhelmed with it all. It was useful to hear about your experience with chemo. I am going to speak to my consultant about the oncotye test at my next appt intent in Tuesday.
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Thank you. I definitely seem to fit this criteria.
Thanks for this information. I wonder if the surgeon might mention it at my appointment next week. I will definitely raise it.