Oncotype DX Test

I’ve just been offered a Oncotype DX test. I’m hoping it will make my decision to have chemo or not, easier .
I’d resigned myself to chemo before my appointment. So was surprised to be told I was borderline. My cancer was grade 3 not 2, but my nodes were clear. Has anyone regretted not having Chemo, please?
Denise

Were you offered it on the NHS?  I’m having my first oncology appt tomorrow & my cancer was stage 3 with clear nodes, so in a similar position to yourself.  I’ll be interested to see replies to your post.

Hi, I got my results from my WLE and SNB last Friday, the day after NICE commissioned the Oncotype test here in the UK. As I am grade 2, tumour size just under 1cm, margins all clear, no lymph involvement and HER-ve I would probably not be given chemo apart from the fact I am only 43, that would be in my surgeons view the only reason for the onc to even suggest it as an option. However, they were all very excited as apparently this makes me the ideal candidate for the Oncotype test so they were requesting it for me. That is if the company who do it will do it for free as our trust still haven’t commissioned it as yet . Apparently it looks at your cells from the tumor and can give an indication of whether it looks likely to reccur in the future if you don’t have chemo. Personally I think this is brilliant, as being borderline part of me was a bit concerned that if i didn’t have chemo what if it came back, this will give a much more personal, clinical view and if it comes back as chemo not necessary I will feel much happier than them just saying no going on their instinct. So hoping the test will be approved for me and should find out the results in a week or so then if no chemo can get on with radiotherapy soon after.
Interesting to see how this test takes off over here really, it is expensive at around £2000 a go but as my BCN reckons the cost of chemo is around £30,000 it should actually save the NhS a lot of money and more importantly, save a lot of ladies aving to have chemo when it may not be necessary…
Let me know how you other ladies get on, be interesting to hear.
Take care for now, love xxx

Had my oncologist appt late afternoon today. As I knew I’m slap bang in the middle of a decision for chemo. Oncologist won’t recommend they only offer options. I had to make a decision so I’ve opted for the oncotype dx test to be done in USA which will give me the risk factor of recurrence. It will test the 21 genes in my tumour & only if I’m high risk will I have chemo. It is expensive, £2600, but to have chemo unnecessarily is not an option I’m willing to undergo & if I rejected chemo out of hand I’d be thinking ‘what if’. Test takes 14 days & I’ve been booked in for chemo & radiotherapy to start 2 weeks on Monday & whichever I don’t need will be cancelled. So I will be starting treatment in 2 weeks. I did say to him that they ‘hadn’t thrown it away then’. He said they have to keep it a long time & in 100yrs they can reconstruct me from my DNA :smileyvery-happy:

 

NICE approved this oncotype dx test for the NHS last week, but it is too late for me.  It will take the Trusts some time to individually approve the test.  He was given 25 & a further 8 free tests by the company who does them but he’s used those up.

Morning Ladies. 

 

This is my first time on this site,  I have looked at other sites but find some of the American ones people using ‘initials that i dont understand’.  I am aware of the NICE approval for Oncotype DX but my understanding is this will only be used following their strict criteria.  But it will indeed be interesting to see how this evolves in the UK. Can somebody clarify for me what WLE and SNB are please. 

 

Many Thanks.

 

Gilly    

Hi Gilly and welcome to the BCC forums

In addition to the support and information you will find here our helpliners are on hand with practical and emotional support on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

I am posting a couple of links which you may find helpful, one is to the ‘Treatments’  section of the BCC site where you will also find further support ideas such as our ‘Live chat’  and the other is to a list of abbreviations commonly used which may be useful:

breastcancercare.org.uk/treatment?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=treatment

breastcancercare.org.uk/breast-cancer-information/glossary#2

Take care

Lucy BCC

Wow, doesn’t sound as straightforward as I was lead to believe last week. To be honest, I don’t even know if my test will go ahead, think it was dependant upon whether the company would do it for free as obviously the trust won’t pay. They are having an MDT next Fri and it will be discussed there so I guess I will find out after that, not actually seen my onc yet but she popped her head in when I was getting my results last week and said she would get the ball rolling for radiotherapy while we were waiting for the Onco test to be done, or not as the case may be! But not hears anything about dates yet?? Tho is only 2 weeks since my surgery so would that be classed still as early days? My WLE and SNB scars are healing nicely but my breast is still really bruised and tender, suppose that takes a while does it?
Hate all of the waiting and questions of “what ifs??” this cancer brings with it.
Anyway, looks like if mine goes ahead we should all be getting the results around the same time in the next couple of weeks so will be interesting to see what they are for us all.
Take care for now , xxx

Thanks Claireglen, was wondering if there was some time scale, they just told I’d get a letter! Hopefully the meeting next Fri ill have more of an idea as to start date…Have a good weekend all,.xx

Hi girls, have any of you had your results back yet? I have just had a call from my consultant to say the CCG are not going to pay for mine and we don’t know where to go from here. I am so angry, why has it been comissioned in the UK if no one is prepeared to pay for it??? If it had never been offered as an option then I maybe wouldn’t be any the wiser but the fact I was means that now I don’t want to just be left thinking “what if” if I don’t have chemo and i’ll always be wondering if it will come back whereas if I had the test it would be slightly more reassuring or determine whether I need chemo or not. After both my mum and sister having gone through it all and then mum’s spreading to her bones I know there is no guarantee with chemo but just want to know that I have been given all the right options and treatments available…

Hello Lilginge

 

There is a similar test done at Royal Marsden. Not sure if is yet available to all patients, but worth checking with your consultant.  

 

Good luck,

Mahsa 

 

royalmarsden.nhs.uk/news-events/news/pages/20130702.aspx

Hi

 

I too am hoping to have the oncotype test. I was diagnosed with bilateral breast cancer in April , Invasive grade 1 mixed lobular and ductal cancer 3.3cm in the left breast and DCIS intermediate grade 4cm in the right breast. Have had 4 WLE to clear the DCIS and was told yesterday that all surgery is now complete and that I am to be referred on to the oncologist.

 

According to the surgeon I have a 4 -5% survival benefit with chemo (adjuvent online). However I am interested in the distant recurrance rate and that is why I want to have the oncotype. I have tried to research the benefit of chemo in my case and from what I have found it is not clear. Some criteria regard the size of tumour as most important therefore a 3.3cm tumour puts me at higher risk of recurrence despite the grade but others suggest that chemo is not that benefical in grade one or lobular tumours!

 

I have to wait a further 2/3 weeks before seeing the oncologist. However I have been told that I will need to also have bilateral radiotherapy and ten years of tamoxifen as I am 8/8 oestrogen positive. The whole thing is so confusing and the worst bit is making the decision about chemotherapy. I was hoping that following the new guidelines that the oncotype test would now be available free of charge for all those patients that are borderline.

 

Sharon

 

 

 

Hi, I’m new to the forum and I can really relate to how Denise was feeling a couple of weeks ago. I’ve had a total mastectomy/LD flap and I am ER positive but node -ve, with a small grade 3 tumour. I am worried about being ‘over-treated’ and do not want to have chemo if I don’t need it. I mentioned the oncotype dx to my surgeon and she initially thought I would have to pay, but then found out that our hospital is funding the test. I am now waiting for the results. My chemo is booked in for end of November, in case I’m high risk.Really hoping I have a good result!

Paid the bill.  The phone number for paying by credit card connected to Switzerland.  They offered we could pay in instalments & because we said we would pay in one lump gave us 10% discount.  Just thought I’d report this.