I have recently had surgery for early stage breast cancer (grade 2 IDC, strongly ER and PR +, HEr2-, lymph node -ve). The plan is for radiotherapy and hormone therapy.
I don’t think that I am eligible for the oncotype test on the NHS because my NPI score is classed as low (3.2).
Has anyone had the test on the NHS with that kind of profile, and in particular whether anyone who is having NHS treatment has paid to have it done (can you do that without moving your care to private care)?
Thank you!
Hi Cloudy,
I had my Oncotype DX on private medical insurance but there are other things that are not covered by the insurance that I have paid for out of pocket. As I understand it you can pretty much have any test if you’re happy to pay for it (happy isn’t really the right word as it’s all so pricey!).
I think it’s always worth asking how much these things cost and then working out if it’s worth it. It’s likely that your oncologist also works privately so should be able to arrange the test for you if you are prepared to pay for it.
I can say that getting my Oncotype test results have left me feeling confident in my treatment plan.
I’m not sure if any of this is helpful but I think it’s always worth asking your Dr.
Rach x
Thank you Rach - I do feel as though it makes sense to have the test when it gives such individual results rather than just the clinical statistics, I will speak to the oncologist. x
Hi Cloudy
Did you decide to go for the test? I am in similar position to you with cancer type (IDC, same hormone profile) - they do think grade 1 but will be confirmed with my MRI results tomorrow and op in a couple of weeks. My grandma died of premenopausal breast cancer but they won’t consider me for genetic testing as only one relative…but, apart from my Mum who fingers crossed has been ok, there are no other women! Grandma an only child, Mum had a brother, I had a brother.
Thanks
x
Hello blue, yes I am paying for the test to be done privately. Maybe you could discuss with your surgeon/team whether you can have the test you want privately? Mine were very helpful when I asked about it. I hope it all works out well for you.
Thank you. Yes, I am going to press for it. Someone has mentioned the DUTCH test too?? I think the objective is to get the cancer out quickly and then we can always revisit bigger surgery later if gene testing justifies it. Scary putting your life if someone else’s hands but I do have a good feeling about the consultant and have confidence that she doesn’t mess about. Good luck with everything and hope we are both on the other side of this very soon 
Hello @cloudy
The discussion was while ago, but I am at same situation , just NPI 3.4. I don’t know yet if I had Oncotype test, but I’ll ask BCN today. So far after post operative appointments and after MDT RT and ET is mentioned. Also I am gonna meet oncologist next Tuesday.
Did you manage to get the test done via NHS or privately? I am thinking to pay myself for it, if it’s not ordered
Thank you
Hi @verap I’m paying privately for the test - it is just over £3,000 including VAT. In NHS Scotland there are different eligibility rules than in England and Wales - which is crazy! My NHS oncologist was able to organise it and I just get sent the bill. It takes around 2 weeks for results, I am anxiously awaiting news. They send tissue sample from biopsy or surgery to the US for testing. Best wishes. xx
@roxie1 Thank you for your reply!
I did not do it as after the meeting with oncologist he reassured me I don’t need that test as I am not in the grey line for chemo to be done or not( if I was there the test will be ordered for me ) and chemo was not considered for my case at all on MDT as chemo will be risk instead of benefits. As I will be paying myself he said that will be waste of money. I decided to listen to him. I am about to start RT and then Tamoxifen for 5 years.