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Paying for the oncotypeDX test at velindra hospital

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Re: Paying for the oncotypeDX test

Hi! Everyone,
I am in New York State and found this forum in my panic trying to read everything i could about breast cancer. I had a partial mastectomy June 4 th and 2 sentinel nodes removed that were negative thank God. I have 19 rad treatments to go. Chemo was not recommended for me as my oncotype dx score was 20 and my 1.3 cm tumor Stage 1A. I'm told the test is covered by my Medicare and HMO supplement private insurance plan and that it costs @$2200.00. There is a big, big research study expected to publish early next year called Tailor Rx(sp?) about tx recommendations for pts whose score is 18-31 which my oncologist referred to as the intermediate range. I had a $200 copay for my 9 hr day of surgery and pay $35 for each Dr. visit. Under my plan lab work is fully covered. My copay for each radiation treatment is $60 and they are wonderful about payment plans if a pt needs one. Hope everyone feels better soonest,
Sue
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Re: Paying for the oncotypeDX test

🙂 I thought exactly the same. Had they thrown it away as my HER+ results took ages coming from Newcastle as opposed to my local hospital & then waiting for appts etc. My onc said they never throw them away they are frozen somewhere. Must have loads of bits of people 🙂 They shave bits off it & expect they've sent the remains back.
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Re: Paying for the oncotypeDX test

Gosh you've had it bad. I only needed the one op for clear margins. I had a friend who had chemo at the same age as yourself & it is the one regret she has not having a family - same age as me now mid 50s. So think you're making right decision. My onc also said 'I don't recommend anything'. Not helpful as they're the experts but don't think they want to be sued. The cost was expected at £2.5K but I think it was £2400 something & they gave a bit of discount but don't know what the instalments would be. You could always phone/email them to find out. Private company so very helpful and pleasant.
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Re: Paying for the oncotypeDX test at velindra hospital

Thanks for that skinnyminx! One less thing to worry about! X
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Re: Paying for the oncotypeDX test

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).  

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Re: Paying for the oncotypeDX test

I also meant to add - its not too late for me is it, as my first operation was back in May, would they still have my "tumour"?!!- which i presume is what they test on? Goodness knows how long they keep things for! :S
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Re: Paying for the oncotypeDX test

Thank you so much for your reply, really helpful. I fulfil all of the criteria you mention, and so was feeling very angry and frustrated when my onc told the BCN it was for post-men women only - absolute nonsense.
I feel like i have nearly decided what i am going to do - and i think i will decline chemo, i came in at 4.4%. He said between 1-3 he'd tell me dont bother, 5+ i definitely need to do it. So having that results and him telling me i need to decide completely threw me, i was expecting him to tell me i had to have it, and then of course whether i agreed with that was another matter. I just wanted him to give me an opinion, which he wont.
I do have the nagging thing as the back of my mind with the "what if i dont have it.."
I've been through the mill so far with this evil cancer, nothing has gone right, had to have 3 ops to get clear margins, which i finally got (quite possibly the best news i have ever had told to me), haven't recovered well from the last operation and frankly the prospect of chemo is all too much right now. I am 36 and having chemo would posibly ruin my chances of having a family, not to mention all the other things that come along with it.
I hope you dont mind my asking, but how much exactly was the test and what were the instalments options (had you chosed to go down this route)
Great news that you have been given the all clear 🙂
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Re: Paying for the oncotypeDX test

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.

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Re: Paying for the oncotypeDX test at velindra hospital

Hi,

 

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!

 

Thanks

 

N

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Re: Paying for the oncotypeDX test at velindra hospital

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.

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Re: Paying for the oncotypeDX test at velindra hospital

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.

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Re: Paying for the oncotypeDX test at velindra hospital

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.

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Re: Paying for the oncotypeDX test at velindra hospital

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.

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Re: Paying for the oncotypeDX test at velindra hospital

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.

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Re: Paying for the oncotypeDX test at velindra hospital

Hi Loony

I have just completed my radiotherapy at Velindre. Are you seeing Annabel? She was lovely to me and very helpful.
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Re: Paying for the oncotypeDX test at velindra hospital

Here is the link to the BCC page about Oncotype DX test.
https://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/oncotype-dx
Also, the NHS Choices link.
http://www.nhs.uk/news/2013/09September/Pages/Gene-breast-test-could-avoid-need-for-chemo.aspx

Penny, I haven't been able to find anything that states specifically the test is available on NHS. Only 'should be' available free of charge on NHS for a certain type of early stage breast cancer where there is an intermediate risk.
M x
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Re: Paying for the oncotypeDX test at velindra hospital

Yes but my onc was not aware that it could be paid for, thought all people on the trial got the full test and had never seen the results charts or new how they were worked out. She did not know that the £2.500 cost could be paid in instalments and that they give indepth details of each individual's cancer . I just want to let as many as possible know about this before they have chemo that they may not need or benefit from. Is there a front page on the site that this could be viewed by more, thanks Looney 1
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Re: Paying for the oncotypeDX test at velindra hospital

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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Re: Paying for the oncotypeDX test at velindra hospital

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

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Paying for the oncotypeDX test at velindra hospital

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.