I had stage 2, E+, 5mm, 1 lymph node out of 4 positive but it was contained. I was advised to have a mastectomy as mamogram showed 1.4mm lump but MRI showed 4mm and it turned out to be 5mm. I was given a 5 rating by Predict. I was told 6 and above they would have recommended chemo. I was given the choice as they could not definitely say I would benefit from chemo, or in fact, if I still had cancer. Onco DX was not mentioned and when I asked I was told it was not available for me. There are trials but I think Nice only fund node free if you are out of trials. Anyway, I paid and Friday got my results and chemo of no benefit! It has cost £3096 with 5% discount for payment in 30 days. My husband was diagnosed with bowel and liver cancer 3 days before my diagnosis. We were both symptom free, fit and active and both diagnosed through routine screening. He is on a fortnightly chemo cycle so I just could not imagine us both undergoing it simulaneously. For me it was money well spent but I know it is expensive and not within everyone's budget. My chemo would have cost £4500 and the NHS get a substantial discount on the cost. I look on it as my donation to the NHS which I appreciate but isn't always fair. Hope this helps but it is just my own experience.
Hi, Just picked up this thread whilst searching as I am also hoping to get tested on the NHS.
I have ILC, ER+, with 2 positive lymph nodes, and I understand that if you have under three nodes positive, that you can have the Oncotype DX test, my Predict score is to me marginal (8%), but doesn't take into account that ILC is much more resistant to chemo than IDC. So far my oncologist has not suggested Oncotype DX test but has suggested I go on the Optima trial, if anyone has any info I would be really grateful.
Looking at the NICE guidelines it looks as if the test should be available for anyone with under 3 positive lymph nodes - according to the appendices but I don't know if that means that it is or isn't available on the NHS or not.
Thank you in advance to anyone that can help.
Hope you are all doing ok out there.
Did you manage to get it? It is definitely available on the NHS. A sample of mine got sent off for oncotype dx automatically as I fitted into the “borderline” for chemo. It was sent off before I knew about it. I’ve not had results back yet
i have just had surgery. Tumour was 17mm, Grade III, sentinel node infected but others clear. Had level 2 clearance. ER positive, HER2 negative. Will definitely be having rediotherapy and hormone treatment (postmenapausal), chemo has been suggested. I have asked for an Oncotype DX test but have been told there is a cost of £3k or can take my chances and sign up for testing which would give me a 50% chance of have the test free but a 50% chance of automatically being given chemo. Has anyone else managed to get the NHS to cover the cost without having to sign up for the trial?
First of all, Google it now! An important research project has just confirmed its importance and that NHS will accept it. It will save a lot of money for the NHS in chemo , they said thousands of women will not need it now.
I had the Oncotype DX done 3 years ago. Here in France nobody had heard of it but I pushed on and had it done, managed to get under the wire for paying for it too. (pr I imagine. )
Though I was diagnosed as having a grade 3 tumor, be it very early and small and no nodes involved they said I should have chemo. The oncologist here had not heard of it (!) and was difficult about it, but my surgeon went along with it. The test came out very favourably and not at all to benefit from chemo. So I was off the hook.
3 years later and clear.
Sorry to hear about your mum. I hope she is recovering from her surgery. The test is available on the NHS as well as through private health care. Perhaps this is what the doctor is referring to. I had my test through the NHS and the results were that I did not require chemotherapy but my nodes were clear. The link will provide further information.
Best wishes to your mum x
Hello - my mum had surgery recently for breast cancer.
They removed some lymph nodes as I understand it. I thought she was going to have radiation but now the doctor recommends chemotherapy. He says that there is a test (Oncotype DX test) to find out if she needs it but says it will cost 3,000 pounds.
Has anyone had this test and if so, is it not covered by the NHS? That's quite a large expense.
Thanks so much for your help - greatly appreciated!