Hi I’m new to the forum but just feel strongly about wanting to let others know about this test and my out come. I was diagnosed in November 13 with 5 cm breast Tumour and it was in the nodes after surgery I was offered to take part in the oncotype Dx trial, this trial determines if my kind of cancer will respond just as well to hormone and rads and by pass the chemo, I agreed, had all my nodes removed and waited. Two weeks later I was told the cancer was in one node only and I would see my onc and a oncotype DX trial rep. Before this meeting I researched the trial and what the TEST was all about and found the test to be very good but the trial total random( e.g 100 people get on the trial 50 never get tested and of the rest some get the full test others get a proportion ) this felt too random for me so I asked about opting out of the trial and paying for the test, I was immediately blocked, told it would be very expensive, told by my onco every one in the trial gets the same test and so on, ( I am aware about the thread on oncotypeDX on this forum but I write for those who don’t yet know about it, especially those in wales) any way I was allowed to pay for the test, signed the forms , my samples were taken to a lab in California and I had the results back within 10 days, my onc stated that she and the other oncologist at velindra cancer centre Wales are very exited about the results as they never get to see the read outs of the results, my scores based on post menopausal 3 to5 cm tumore in 1 to 3 nodes ER positive PR positive and HER2 negative with an overall score of 18, bottom line is I would not benefit from chemo and will have the same results from tablets and radiotherapy. I have not yet parted with any money, the test, yes it is expensive, £ 2,500 but if I pay in one lump I get 5percent off or I can pay in installments, I had my CT scan and tattoos yesterday and start radio therapy on the 7 April. If I hadn’t of been offered the trial and the pushed to pay for it I would be starting chemo. I just want to let others know about this option, take care all.
Hello Loony1
Thank you for your post and welcome to the BCC forums.
As well as the support you will receive on the forums we also have a helpline where you can talk to a member of staff should you wish too. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.
Best wishes
June, moderator
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.
Hi Loony
I have just completed my radiotherapy at Velindre. Are you seeing Annabel? She was lovely to me and very helpful.
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.
Hello
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.
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.
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.
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.
Thanks for that skinnyminx! One less thing to worry about! X