Anyone out there had this test? I went to see my Onc yesterday to be told I was HER2 Positive…Oestrogen Receptor Positive. After a lengthy discussion he advised me to have this test done to see if I could avoid the chemo. I have gone ahead with the test but it takes 10-14 days to get the results. Its cost us £2,500 because it isn’t recognised in the UK and the tests need to be done in Calafornia…
Hi Aramis
I’ve just had this test done, and yes, paid £2500 for it. Reason I decided it was worth it was I have bilateral stage 2 node negative ER+ on both sides, with a wee bit of multifocal thrown in. The ‘team’ recommended I have a bilateral mastectomy but I decided that other than the bilateral, my signs were good, so went for WLE’s with radiotherapy. Chemo wasn’t in the picture as far as docs were concerned, but then I kept reading, mostly in the States, that people with my symptoms were having chemo. Didn’t ‘want’ to have chemo but if it was going to prevent this ever coming back then I’d rather have it now. NHS wouldn’t touch it - I had to do this privately and even had to pick up samples from the hospital myself and deliver to private Onc. Its all a bit late in the day as I finished rads a couple of weeks back. Its not the ‘ideal’ test for bilateral but its all there is, and having my worst prognosis tumour results come back ‘low recurrence’ and low benefit of undergoing chemo has given me some reassurance that my decision may be an OK one. Now I need to have the other side tested but as this had better prognosis I’m less worried. If either had come back high I’d have been knocking on NHS onc door.
The process itself is pretty straightforward, onc fills in form and sends with samples to the US and you get your results back. I felt it was money well-spent, low = reassurance, high = chemo which you will benefit from. Intermediate score is a bummer as that leaves you pretty much in the same gray area.
I’m Her negative (or is it neutral) so I don’t know how it works with that. The website is good. Just PM me if you want any more info, I’ve got lots, researcher that I am.
Is your oncologist NHS - I felt that even though I had to pay for it, they could have at least ordered the test on my instruction, but heyho, there you go. Worried about implications or something.
Good luck
Sheila
Hi Aramis
I too asked for this test when my onc said I didn’t need chemo he told me they dont do this test in the UK & am shocked how much it costs privately although i trust my Onc with all that he told me it still plays on my mind & again is something I wish the UK did especially when your just told the stats & left to make a decision which I initially thought would happen to me.
Do keep us posted
Mekala x
Hi Aramis
I had this test in December 2010. My onc recommended I have it as he didn’t think I would benefit much from chemo as I was considered at low risk of recurrence and was leaving the decision to me.
I am 51, had a 4.9cm invasive lobular tumour with no node involvement. clear margins and highly hormone receptive. I had a mx with recon.
Although we have private medical insurance we were told that the insurance companies in this country didn’t pay for this test so we were prepared to pay for it ourselves but amazingly they did!
The cost of the test while expensive doesn’t cost as much as private chemo so it makes perfect sense for them to pay.
I had to wait 2 weeks for the result, which was quite a stressy wait but not as bad as all the previous waiting. The way I looked at it was if it came back with a low score then great and if it was a high score I would know that I would be going through chemo for a very good reason.
It came back as 22 which is low intermediate and my onc worked out that chemo would lower my risk of no recurrence by 1 maybe 2% and he felt that no chemo was the way to go
I am really glad I did it
Lots of luck x
I was offered this test when I first saw my onc last year, but I would have had to pay the £2,500 myself. Although I was a private patient (courtesy of my employer), I was told that BUPA won’t pay for the test.
I didn’t have the test and turned down chemo, but it would have been comforting to have had some extra reassurance that I was making the right decision, if indeed it was.
The Oncotype DX test is being evaluated by NICE to see whether it should be paid for by the NHS - presumably on the basis that the cost of it would be offset by not giving chemo to women who won’t benefit from it. Of course ignoring the personal cost to women who are currently having chemo when they didn’t need it.
Sarah x
I have private insurance too…which insurance company are you with? My Onc said the insurance companies won’t pay even though it saves them a fortune if you decide against chemo or should I say the test puts you in the lower risk group! Your results seem similar to mine although I had a wide local excision!
Thank You Queen of retail x
Hi Aramis
I’m with BUPA. My onc said the same thing, they won’t pay for it - perhaps I should have persued it with BUPA but I didn’t bother. I was fairly confident in my own mind that chemo would have been OTT in my case. Easy for the onc to say it’s manageable, I didn’t see him volunteering himself for it!
My surgery was effectively a WLE but with a cosmetic breast lift included at the same time so the result was better looking than it would othewise have been - it was quite a large lump they removed.
Sarah x
I can’t honestly believe the NHS prefer to waste money on doing chemo on people that are not going to benefit from it!!! But, obviously they do… I am in BUPA and I joined years ago thinking I was covered for everything … sadly not the case even BUPA prefer to put patients through the unnecessary chemotherapy than opt to pay for a test that could possibly save tens of thousands! I despair… Eh ho! my husbands on the phone to BUPA at this moment thrashing it out with them! Lets see if they will pay for the chemo if not the test! With my look probably neither!
Hi again Aramis
Our insurance is Simply Health
You need your onco to write to them…mine told a bit of a white lie and said that I would be having chemo if the test wasn’t done ( I hadn’t actually decided)
They stipulate that if my result came back with a low score and I still went ahead with chemo then they wouldn’t pay…fair enough!
I think the problem with the test is that it really isn’t for everyone, you already have to be considered low risk of recurrence. Obviously it is no guarantee but nothing is!
x
Me again
PS
It took a while but I believe that most med insurance companies in the States now pay for it realising that where appropriate it actually saves them money
x
From my understanding the test is only valid for a certain group, stage I or II, node negative, estrogen positive cancers. I think in the UK most of these would not be recommended chemo, unless there are other contributing factors. I am in this case, but am also bilateral and multifocal, and was still not recommended chemo by NHS. It can’t be a cost thing because I was recommended bilateral mastectomy with reconstruction which must cost big bucks so its not fair to say the decisions are based on cost.
There is a current study just started in the UK, Wales maybe??, that is looking at the utility of the test in this country. We might as well accept we are always going to be a good few years behind the US. My NHS oncologist did say that it was probably only a matter of time until this test, or similar, is adopted in this country.
I think there’s a thread on here somewhere with people who are on the trial.
S
From Googling around the subject I found that what Sheil said appears to be the case - NICE is reviewing whether Oncotype Dx should be available on the NHS. I couldn’t find out when they are supposed to decide.
Sarah x
Think it will be quite some time before the NHS adopt it, if ever. The RCT has just started this year and its normally years down the line before any results translate into guidelines. So I’d say if anyone wants this now just accept that its not a cheap option. I did feel it was really an ‘optional’ thing. I look at it as just another level of analysis. I was in that grey middle area and this test pushes me a bit towards no chemo benefit rather than yes chemo benefit. The funding system here is never going to be the same as the US, which in some ways is a good thing. I’d hate to be living in a county where the care I’ve had on the NHS would only happen if you had good insurance. But then again its probably a bit hypocritical of me to go for a private test.