Thanks for the info La La, it makes sense now but I still don't know if 1 positive node will result in chemo, I just have to be patient and wait to see my oncologist. That's fantastic news about your tumour shrinking. Best wishes x
Hi, daisyj1- just came across this post and wondering why a positive lymph node is a reason for not having the test (mine is 11mm grade 2 with 1 lymph node).
Just 2 days ago my BCN advised that the Oncotype DX test was trialled on the NHS and as that trial is now over, it's only available if paid for privately at a cost of £2k plus. I'd be grateful if this could be clarified as I appear to be one of those in the grey area when it comes to chemo so might benefit from the test.
Thanks for the reply, thats really helpful.
Take Care Gilly x
What did your social package cover and do you know who the referal went to?
Hi there Egret
Hope your treatment is progressing well.
Take Care Gilly x
Really glad your fears were unfounded and that you were offered scan and CT. 2.6cm no lymph node involvement as you say is stage ll and interesting that you were offered EndoPredict. I wish it was widely available as it is much less costly than Oncotype and offering similar crucial information. Sadly where i had my treatment it is not offered and my tumour was 6.5cm so Chemo / rads / surgery. Everything available please..... I'm sorry if i sound like an advocate for the NHS but i am so glad that people are being spared chemo when it isn't really vital. I am 2 years on from Chemo and in reality still struggling with the aftermath of it, Peripheral Neuropathy, muscle waste etc. It is tough stuff but still i am grateful i had it....
Good Luck with your treatment. Take Care Gilly x
Thank you for your kind wishes.
Yes 7% is a significant number and my onc said that if it had been over 5% he would have steered me in the direction of Chemo....
I wish you all the best with your treatment.
Good news that you had a joint meeting and the opportunity to make the decision that is right for you.
Good luck with the rest of your treatment. Take Care Gilly x
Sounds like a fair plan. 7% is a lot. I had Chemo before surgery to try to shrink a 6.5cm tumour FECT 100. After surgery it turned out to be 4.2cm and in only 1/23 lymph nodes. I had axilary node clearance so no going back. It does sometimes feel like overtreating but i am two years on from end Chemo, back at work, living life to the full and just awaiting first grandchild. On Tamoxifen but changing to Letrozole later this year.
Good luck with the rest of your treatment. Take Care x
I have just spent the afternoon with my surgeon and oncologist. My surgeon so kindly made an appt with the oncologist following his consultation today rather than wait until 24 April. My OH and I were afforded as much time as we needed to debate and discuss options including Oncotype DX. I was presented with Adjuvant! and PREDICT outcome stats to support discussion and aid decisions. It would appear that in my case I fell within a 2 - 5 % improved outcome if I took chemo. We thoroughly contemplated Oncotype DX and oncologist said he would 'fight my case' for funding as PCT are not supporting it yet locally if that was what I wanted. However, due to my own unique physical health issues - heart attack and acute cholecystitis two years ago which both will have possibly compromised my ability to cope with chemo I have made the decision not to have chemo. I feel such a sense of relief to make a decision of my own as the last two years have been made up of decisions foisted upon me based on pure survival. Now I am on a pathway of radiotherapy and hormone therapy starting next week with an end date in sight.....
I do so hope I have got it right.
Warm wishes to all
Do you know why your consultant changed to definate Chemo rather than sending for the OncotypeDX.
I think changes are more managable when they offer good rationale.
Take Care x
I am due to receive my results and recommendations for next step of my journey following bilateral therapeutic mammoplasty and SNB today. I know that I have a Grade 3 cancer which is Hormone Receptive and that nodes were clear. I have already been told that I fall into the category where chemo is considered but until surgery they would not commit either way. I do so hope that if there are any decisions to be made on my part that the Oncotype DX Test is offered as I am certain this is the way forward to spare patients unecessary life upheaval and to save the NHS scarce resources in time and money in delivering chemo that might not benefit in the long term. We shall see.
Oncotype DX has been available for a little while and Consultants have been able to send samples from the UK, Funding has been a bit of a lottery but as you say £2500 / £2600 privately but actually it is only a few people that will benefit. Depending on a number of factors size stage grade etc people are recommended treatment in line with NICE guidelines.
All meds / testng / treatment has to go through rigorous testing in the UK not to mention the ethical / moral committee. Sometimes USA report having drugs that we don't have but then they stop usng them ??? They weren't tested sufficiently in the first place.... Do you know that Tamoxifen was produced / tested in Manchester before the rest of the world benefited from it.
OncotypeDX is only available on the NHS becuase there has been much lobbying / petition signing etc already. I work in the NHS and have been treated in the NHS, I know it is not a perfect system. The reality is that there will never be enough money in the NHS because as treatments advance we expect more and there is only 2% from the NI of working people goes into the NHS purse.
The Oncotype DX wasn't devised / produced in the UK and as such it is unlikely that the UK will get any funding to monitor long term outcomes of anybody who has received the test and decided on treatment based on the results.
Your own consultant will look at all factors and just a few people will meet the criteria, this test can advise / influence decision making but ultimately it would be the patients own decision and it is only an indicator of low medium or high risk of recurrance rather than designed to pick up vital life saving clues.
Take Care x
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I had this test as my consultant is very enthusiastic about the benefits it provides for an individual patient.
Oncology had said that my pathology results meant that I was borderline for whether the benefits of chemotherapy would outweigh the risks/side effects and gave me the choice of whether to have chemo or not. The oncotype-dx result came back with a high risk of recurrence so I agreed to have chemotherapy. In addition the test showed my cancer as HER2+ whereas the hospital pathology had shown it as negative, the hospital are retesting to verify which is correct.
I am glad I had the test because even though it didn't change my decision on chemo, it reassures me that having chemo has a real benefit to me.
Dr Emma Pennery responds to the announcement that a new test called Oncotype DX, which can predict how beneficial chemotherapy will be for some patients, will be available on the NHS. This infomation may be useful to those who are having to make decisions about chemotherapy.
If you would like to see the full statement, Please click here .