Hi - you shouldn't have any concerns about pathology samples being available for testing. I've been through genetic screening and samples of family members' tumours were still available for testing several years after removal (and in one case several years after the death of the family member).
I paid for the test which I think is worth every penny. You don't want to go through chemo if you don't have to & the benefit of chemo isn't great, about 3% benefit in my case. There are certain criteria you need to fulfill. Your tumour needs to have been invasive & oestrogen receptor positive (ER+), lymph node negative (LN−) and human epidermal growth factor receptor 2 negative (HER2−), early breast cancer. This is the company which does it: http://www.genomichealth.com/en-US/OncotypeDX.aspx#.U9PBvvldUpg
It is funding dependent on each NHS trust. They offer 'freebies' to oncologists. Ask your onc if they've any left or if they haven't had any ask them to ask. The hospital arrange everything & send your tumour to the US. Fairly quick results, under 2 wks in my case. They don't invoice you till a few weeks after & when we phoned up to pay (was in Switzerland finance dept) they offered us instalments but gave us discount when said we'd pay in one go (by credit card). My onc made me make my mind up beforehand as to what I would do with the outcome. He is a cancer survivor himself & didn't recommend chemo but did offer it. I decided I would only have chemo if my result came back in the 'high' (low, intermediate & high categories) risk of recurrance. It came back just into the intermediate. So I didn't have it. My mind was put at rest by this rather than wondering 'what if'. Reading on this forum someone else with a lower score than mine chose to have chemo. You need to make up your mind first & be happy with your decision. No good paying for the test & then going ahead with chemo anyway. I was diagnosed this time last yr. I had op & radiotherapy. My tumour was early but the most invasive & the most oestrogen +. As well as all the check ups I've just had my first mammogram & result is satisfactory (assume that means clear of cancer at mo). I have suffered from everything inc 2 lots of shingles after radiotherapy but I am a carer for my mother who has dementia so think this has troubled me more on top of radiotherapy. Would not have liked to have gone through chemo too. Hope this helps.
I'm hoping that someone can help.
I just had my first onc appt, at which he told me i was in a "grey area" for chemo, he wasn't telling me what to do (ie not telling i needed it but wasnt going ot say dont do it) and that it was my decision, gave me a week to think about it! I was not expecting this to be so unclear cut. Went home and read about this test. Called my BCN who said she would ask him about this, so she called me today and said he had told her that the test was only for post-menopausal women - which i know to be completely untrue. Also that the funding was not in place yet.
Now - on this thread there are women (and maybe i read it wrong) who have had the test on the NHS and paid privately
1. Is the test avilable on the NHS or not?? If yes is it area dependant?
2. If i want to pay for this myself how do i go about this? Who does the test? Does the hospital take care of all the arrangements?
3. I note one lady paid in installments, over what time period are these going to be?
4. How long does it take to get the results?
5. How could the consultant get this so wrong re who the test is suitable for!?
Any input is greatly appreciated!
I had the results of my private Oncotype DX test today. I do not need chemotherapy - what a fantastic relief!!!! I sincerely hope that it will be readily available on the NHS some time in the future, Compared to the all the associated costs of Chemotherapy etc., it MUST be cost effective.
Interesting thread. I was diagnosed nearly 5 years ago and had mx, chemo, rads, ongoing endocrine treatment. I didn't know about OncotypeDX at the time (not sure it was available then). Not sure I'd have opted for it as my case was pretty straightforward as regards chemo being a necessity and there's lots of cancer in my family so I wanted to cover all angles.
However, apart from the clinical aspects of this, Penny47 you make an excellent point about the financial impact of treatment. I reckon that having cancer has effectively cost me many thousands of pounds (mainly in lost earnings, but also travel costs for attending appointments etc etc.), it all adds up. OK, my husband has a good job and we have savings but the costs are real. I can't accurately attribute how much of the cost has been because of having chemo but, you are right £2,500 could be a drop in the ocean over the ensuing years.
I realise this must sound cold and calculating but the financial implication is an aspect of cancer treatment that doesn't always get recognised when people are, understandably, concentrating on coping with shock of diagnosis and with treatment.
Best wishes to everyone.
Hi Loony 1
Like you, I recently paid for the Oncotype DX test (well not actually paid for it as I am still waiting for the invoice as well as the results!) I have had a lumpectomy and I am Post-Menopausal, Stage 2, sentinel lymph node positive, ER positive.
I was originally going to go on the trial but when I discovered that only 50% of the women would be tested, I felt it was a little too "hit and miss" for me. I really, really do not want to have chemotherapy if I do not need it. I just hope the results will be here soon so I can get on with things. I had no symptoms at all (still do not have any) The cancer was picked up by a mammogram - I keep thinking "no symptoms, I wonder if the diagnosis was wrong?". Wishful thinking I know.
I am also at Velindre, Cardiff. Early days yet, so I cannot comment on their service/treatment.
Hope you are well and continue to recover.
I want to share my experience and understanding of oncotype dx . NICE approved funding for this 'test' in September 2013 I had wide local excision surgery in December 2013 and was found to meet the criteria to have the test and also have the test paid for by NHS. Lymph node clear, ER positive and post meniporsal. The test is based on a result system 1 through to 100. My results where at the lower end of the scale and was found not to need chemo and low risk of recurrence.
Hope this helps.
I was diagnosed in August & had WLE grade 3 invasive tumour lymph node clear ER+. I paid for the oncotypeDX test as although NICE had approved it for NHS use it will take a long time for each NHS trust to approve its use & work out all the finances as our hospital gets paid by GP trust for chemo so hospital aren't bothered about chemo cost etc., etc., so a lot of financial wrangling before it starts to be available on NHS. My onc very against chemo. It's a poison with very little benefit. I decided I would only have chemo if my result came back that I was high risk of recurrence. It came back just into the intermediate risk range so didn't have chemo. To me it was worth every penny. I finished rads end of Nov. That did feel like I was a bit of meat. Very impersonal & often male operatives. Rads works for up to 6 months. I'm still tender now. Also it hit my immune system so I got flu for 3 weeks over Christmas & New Year, then recently had another virus for 4 weeks. I've had blood tests & bone density tests so due this Wed for another onc appt to discuss hormone therapy. It's a long slog ladies. I don't get much confidence from my 3 monthly physical checks because they couldn't feel the lump originally after I went to my GP, only showed up on mammogram. I'll only be happy once I've had my first mammogram after a year.
Didn't I read somewhere that Oncotype DX was approved by NICE in October 2013? Does anyone know whether it's available on the NHS? I would have had it if it had been available. For me, the fiinancial disadvantages of chemo (if it were unecessary, which is wasn't in the end) were far more than the price tag of the test.
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