Looking for a little info! I met for the first time with my oncologist today to discuss treatment and he gave me my statistics for chemo/not chemo etc and so on off the database they use to predict that kind of thing! However, he said because I am only 25 and an anomaly that he couldn’t really be accurate as they weren’t enough examples in the database like me! He recommended that I pay privately for a report from a company in California which will assess my tumour samples and enable me to make a more informed decision. He also recommended this because one of my lumps was HER2 borderline negative and apparently this report will tell me for sure so we know whether herceptin is an option. Apparently it will then give me an opportunity to decide if the risks of chemo outweigh the benefits! I have gone ahead with thus as I’m an info person! Just wondered if anyone has come across this? What were the results? Did it help etc and so on! I’m sure the NHS will supply it eventually but apparently it’s very new…!!!
It’s amazing to think that the test is standard in the US and they base the chemo on the test results, and they assess the recurrence risk as well. The oncotype dx have a good website for further information. Good luck!
I wouldn’t be so sure that the NHS will be offering this test - I was offered it if I was willing to pay for it - 4,000 (yes, four thousand dollars).
Sarah x
For me-being an anomoly because of my age-I did not think twice about going ahead with the test despite the cost-I’m fortunate to have my critical illness payout for exactly things like this! My onc said he wouldn’t tell patients about it normally as not fair to those who cannot afford it or who think they are getting a second rate nhs service when actually, if they meet the “stereotype bc average” (who knows?!?!) then the database gives accurate results so oncotype DX is not as necessary! So I doubt NHS will offer it for a long while but it’s nice having the option there for me and others in the younger age range! X
I was being treated as an insurance funded private patient here, but BUPA (presumably the others are the same) won’t pay for it, and at that price it’s not surprising. That’s why health insurance is so expensive in the US. I would like to know more about what factors the Oncotype DX software includes, since a computer programme is only as good as the info that went into it. For instance I don’t believe that it takes account of Ki-67 test results (see the other thread I’ve posted under this same section on that subject) so one could be paying a high price for something which isn’t necessarily up to date with the latest thinking in oncology circles. Could be a lot cheaper (i.e. free) to ask for a 2nd opinion, which is what I did when I didn’t have confidence in what my onc was saying. And I was glad I did that.
Sarah x
4000 is an awful lot of money Emma92 - I hope you’ve not had to pay that much yourself. It’s great that that sort of test is available, but it’s so expensive isnt it! Good luck with your test results, n with the decision it’ll help you to make! Luv xxx
I have been reading the breastcare.org forums where the US ladies usually post their Oncotpye DX score. It seems even with a low score recurrence still happens. It just shows again how unpredictable this disease is! X
I remember asking about this test and my oncologist saying that the only proper studies that had been done about its accuracy had been among post-menopausal women and therefore Oncotype DX wouldn’t be much use to me. That was a couple of years ago though so other studies may have been completed. I know exactly what you mean about wanting/needing information before making a decision I’d say a second opinion might be useful when you have the results in. My oncologist specialises in younger women - do send me a private message if there’s any way I can help.
It’s worth knowing that Oncotype DX themselves advise limitations on when their test is suitable for use. They state the following on their Oncotype DX website:
You may be a candidate for the Oncotype DX test if:
You have recently been diagnosed with breast cancer, and you and your doctor are making treatment decisions regarding chemotherapy.
You have been diagnosed with stage I or II invasive breast cancer.
Your breast cancer is estrogen-receptor-positive (ER+).
You do not have lymph node involvement (this is known as lymph-node-negative breast cancer).
Post-menopausal women recently diagnosed with node-positive, hormone-receptor-positive breast cancer may also be appropriate candidates for the Oncotype DX test.
Coming in to this a bit late perhaps.
I was offered this by my oncologist (SE England) when we were discussing whether or not I should have chemo. It would have cost 4000 as mentioned above. He said it was only worth my while if I was uncertain and needed extra help to decide.
I had read about it before, and knew it was the result of study of post menopausal women with oestrogen responsive tumours. As ER negative, and sure I wanted to have chemo, it became a non issue.
I have had moments since of wondering if it would have been helpful but I didn’t really want to know I had a higher chance of recurrence, being Triple Negative is enough negativity to deal with.
On the other hand for Emma 92, being so young, maybe all the information you can get could be helpful. But as others have said a second opinion from someone somewhere with experience of more younger patients could help even more.
Good Luck, please come back and tell us more is you use Oncotype!
Hi all! By way of update-they had to recut my sample as wasn’t enough to send to America so there has been a slight delay! I am seeing my onc on Weds following multiple scans, ecgs etc and so on so hopefully should have everything in one place at one time to make informed decision! Have already commenced chemo paperwork. For me, the report isn’t so much about deciding if to have chemo but to find out if my HER2 borderline negative tumour (I had two-one definitely neg) is actually positive as this will obv affect treatment and my onc explained further clarification not available on NHS! Will keep you updated! Meeting chemo nurses tomorrow and looking at chemo suite-dreading it but am sure it will help!!!
I asked about this test but was advised as post menopausal there was no advantage to me. It was expensive and so not yet provided on NHS. It is possible it will be on the NHS in time. I was also advised this was mainly of benefit for young people and the future of it was to decide on chemo or which targeted therapies would help.
Hi Hatty
Sounds to me like you were given bum info there, the Oncotype test resulted from studies on post-meno ER positive women. More likely the cost that is making them say no - or lack of knowledge about it.
Sarah
Hi there Emma,
I had the Oncotype DX test and the result came back with a score of 8 so my oncologist agreed that chemo would do me more harm than good and I did not have it. I did not pay for the test, but was prepared to and I was very luckily given the money by a friend of mine; instead I had a tantrum with my oncologist when we first met. He was of the opinion that chemo was a foregone conclusion and that I had no choice. But after listening to my rant he agreed to meet with me the week after when I’d calmed down a bit! In the meantime, he had contacted another oncologist who was running a trial of the Oncotype DX test in another part of Bristol and referred me to him. Everything went well from then on and I am glad I didn’t have chemo and do not feel that I have compromised my chance of survival as a result.
In the US all women are given this test but I think the trials in the UK (I’m sure there are many) were being limited to those with the following diagnosis: stage/grade 2; node negative; no mets; ER/PR+; pre-menopausal; will agree to hormone therapy (tamoxifen). I nearly fitted the protocol as I was peri-menopausal at the time - subsequent testing showed I was actually menopausal so I had to agree to Aromatase Inhibitors instead of Tamoxifen. My cancer was invasive lobular cancer but most peeps have ductal; I’m not sure if the OncoDX is only offered within the trial to those with invasive cancer as opposed to the in-situ kind.
By referring me to a different clinic in Bristol my Onco lost his funding (postcode lottery thing) and it may be that this is the reason why more women are denied the possibility of a DX test. My new Onco was finding it hard to attract enough volunteers and thanked me warmly for coming forward! Little did he know I would have bitten his hand off!!
I have definitely learned that if you don’t ask, you don’t get; being charming will get you a long way but behaving like an out of control 2 year old can get you a bit further sometimes.
Good luck with it all.
Hi all
I’m hoping Some of you are still reading/checking these forums (a year later).
I have been asked if I was interested in joining a trial currently in play called OPTIMA which is oncotype dx testing as you have described above. I have jumped at the opportunity and interested to hear from anyone else that has been invited. My location is Exeter.
Sooz x
Hi all, I was diagnosed in Jan 2013 with IDC grade 3 ER/PR+ HER2-. I was 39 at dx. I absolutely didn’t want to have chemo so I had the Oncotype DX test and it came back with a very high score - 44 (high starts at 30). This gave me a 30% chance of recurrence and also indicated that the cancer cells would respond well to chemo. I was totally expecting a low score. Apparently 50% of people with early onset ER+ bc with no node involvement get a low score and are thereby advised against having chemo. With those odds I was fully expecting to get a low score. Anyway, I’m due to have my 3rd FEC on Friday and will be glad once it’s over.
I am post menopausal and was diagnosed in Feb 2013 with Grade 3 IDC, no nodes, ER+. I was borderline for Chemo. I asked for a Ki-67 test to be done on the removed tumour. This was free - some hospitals might carry out the test automatically. Mine did not but they carreid out the test quite willingly. The Ki-67 level was 30 - 40% which the Oncologist described as somewhat elevated. Ki-67 is an antibody marker to a tumour antigen and might be an inditcation of survival. Ki-67 is one of the 21 genes that are tested in the Oncotype DC test. My oncologist said that she felt it qutie likely that, if I spent the £2500 on Oncotype, the results would come back borderline for chemo, as did the NHS Adjuvant test and the Ki-67 test, so that it would not help with my decision. (I decided against chemo).