Oncotype DX test to be available on NHS for newly diagnosed patients

[hopefulholly]

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

[La-La]

It is because of the urgency of treatment. Need to prevent spread. The Oncotype tests require more biopsies that are sent off to US for testing.
It is considered more urgent to get you going with surgery/chemo when you have positive lyphs and/or your cancer is HER2 positive.

The delay getting biopies to us for gene testing adds potentially weeks to the start of your treatment.
(PS: my 3cm G3 Her2+ lump has shrunk 1cm already only 2 weeks after first chemo! I am now a big fan of chemo!!)

[hopefulholly]

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).

[hopefulholly]

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.

[Butterfly318]

Thanks for the reply, thats really helpful.

Take Care  Gilly x

[Butterfly123]

The adult care team can e contacted through your local council

[Butterfly123]

Hi there. I rang the adult social care team at the suggestion of a Mac nurse. It was also suggested I contact four rivers, part of Age Uk. You're meant to be over 50 but they said it was ok. I was offered for some one to come in 2/3 times a day to help with meals and four rivers send someone to help with light housework tasks

[Butterfly318]

Butterfly123

What did your social package cover and do you know who the referal went to?

Gilly x

[La-La]

I didn't qualify (HER2) 😞 Sorry, can't help.

[Na123]

I was told by my surgeon that the sample would be sent for oncotype as it has been approved 1st April, op was 3rd April,
Now told that the funding is not yet finalised, therefore have to wait, have others found the same
I come in the indeterminate group for chemo. Mentally I've decided that I will not need chemo, will start the roller coaster all over again

[La-La]

Who do I ask about that Gilly?

[Butterfly123]

Hi Lala. I read your post and wanted to let you know that I was offered a Social care package if I went ahead with chemo.

[Butterfly318]

Hi there Egret

Hope your treatment is progressing well.

Take Care  Gilly x

[La-La]

Boo!
I can't have this as one of my lumps is HER2... which means I have to have chemo before my (bilateral) mastectomy

Boooo!

[La-La]

I am stage 2 grade 3 one side, grade two the other, and no visible signs in lymphs.. I shall be having first appt with my oncologist (plan originally was to have 6 cycles chemo over next 5 mths, bilateral mastectomy, no radiation(cos I'm opting for bilateral mastectomy)
Herceptin for 12 mths
Tamoxifen 10 years

If there is a safe option to avoid chemo I'd like that... am single mum/sole income to an11 year old boy, so all the side effects of chemo really daunting. Will be a tough time for us both (on the pmus side he'll have to learn to pull his weight... but I dot want my 11 year old becoming my carer after each cycle!

It is good to be informed so we can at least ask the relevant questions.
Appreciate the input. xxx

[daisyj1]

I have just seen my oncologist to discuss whether to have chemo for my 9mm grade 3 tumour Er+ and asked if I could have the test .He told me it was no good for me as I had one positive lymph node .Also there was no funding for the test although it had been Nice approved.

[Egret]

Hi Butterfly, the EndoPredict test shows high risk and I am starting chemo next Friday. I am glad that I was offered the test because I now know for certain that I need chemo! Take care too x

[Butterfly318]

Dear Egret.

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      

[Egret]

Hi Butterfly! Thank you for your reply and just to let you know: I was offered a different test to the Oncotype DX. My oncologist was brilliant. On my first visit, she offered immediately to have my cells sent to Germany for the EndoPredict test. I think I met the criteria for the test by being grade 3, ER+, my tumour was 2.6 cm, no spread to lymph node, and I think I am stage II. I was also offered a CT and bone scan (I am so grateful for that too) and they came back clear. I am waiting for the EndoPredict results. My understanding is that Encotype DX is US-based; while the newer EndoPredict is mainly available in Germany and Switzerland and therefore European-based. NICE opted for the Oncotype DX, but after reading about both Oncotype DX and EndoPredict, I was very pleased that my oncologist proposed the latter. I would have been happy with either to tell you the truth! EndoPredict can help determine when chemotherapy might be vital or when it might be unnecessary. So here I am, apologising, because my fears were unfounded. The NHS delivers and our doctors are indeed first class.

[MrsGoggins]

Hi Gilly

Thank you for your kind wishes.

Katie

x

[MrsGoggins]

Hi Molliana

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.

Katie x

[Molliana]

7% I guess. What I meant Is it added another 7 women out of 100 will be alive after ten years.

[Butterfly318]

Katie

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   

[Butterfly318]

Molliana

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

[MrsGoggins]

Hi all

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

Katie

[Molliana]

I think when my snb came back positive tho the rest are clear, and the oncologist said because of my age she just decided I was definitely having it. It added 7% to my outcomes.

[Butterfly318]

Molliana

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

[MrsGoggins]

Hi

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.

Katie x

[Butterfly318]

Dear Egret

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

[Molliana]

My oncologist had offered me the oncotype dx test right until the point when she decided that I was definitely having chemo. When chemo was undecided she said she was going send my lump off to America and the results would take about three weeks to come back.

[Egret]

Hi! I heard that in the US the Oncotype test is performed using the biopsy cells if they fall within certain criteria. This would cut waiting time a lot and also help clinicians and patients make an informed decision regarding the costly and dreaded chemotherapy. I am afraid that the NHS and NICE are lagging behind the US by ten years. Oncotype DX? Available from 1st April? Really?!!!!!! Can anyone tell me HOW I can get it? No? Why not? Surely automatic Oncotype DX testing with the biopsy cells is cheaper than imposing chemo on everyone deemed "borderline". I heard that Oncotype DX costs about £2,650 privately. How much does a course of chemo costs? £££££? With Oncotype DX, no more missing vital life saving clues and refusing chemo to women who are at high risk but the current NHS tests might not pick it up. Oncotype DX would give you, me, your mum, your wife, you girlfriend, your daughter, your friend some CONTROL. Please help! If you read this, inquire with clinicians and anyone you think might help: we need to make our voice heard. Ask: Who can get this test? How can a BC patient get it? What is the protocol? Is there a protocol? [For example "Apple" would not announce that they have a new product available from the 1st April - with empty shelves, no date for delivery, and some information on line only!] Could a UK campaign be launched? I got most of my info from American sites, which speaks for itself. If I am wrong, it would be a pleasure to apologise.

[June_BCC]

Hello Carmen42

Welcome to the forums.

As well as the forums we also have a support helpline where the staff can offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes,

June moderator

[Carmen42]

Hi,

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.

[JETS]

I heard this and think it's brilliant - my prob is oncology apt next week - do you think I am too early to be included on nhs?

[Nicole_BCC]

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 .

Kind Regards

Nicole Talbot