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Oncotype DX test to be available on NHS for newly diagnosed patients

35 REPLIES 35
Agarside
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

To add, I had it.
I was er+ with no lymph involvement, tumour G3.
My score came back as 29. I had in my head, anything over 25 I would have the chemo.
A
Agarside
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

The oncotype test is not used for hormone therapy, it is used to give an idea if chemotherapy will be of benefit. It is for er+ tumours and based on a number of genetic markers which give an individual result.
0-19 chemotherapy would not be of benefit
31 and above, chemotherapy would be of benefit.
Inbetween... grey area.
Hth
A
Bella99
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Has anyone got experience of the Oncotype DX test being used to see whether hormone treatment is necessary?  I had low grade oestrogen breast cancer with no spread to lymph nodes.  I have had mastectomy and reconstruction.  I really stuggle with the letrozole and have a low score for reaccurance under NHS predict.  But it is a bit decision to walk away from hormone treatment.  Anyone else been offered Oncotype DX around necessity/value of hormone treatment?

gillyb
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

I have... and the results have just cone back at 30... chemo is recommended over a score of 25...I am researching tokay amndmnd oozing for reasons not to have it. It took approx 3 or 4 weeks for Results! I found an NHS site called predict u put your results and it predicto survival over 5 and 10 years
Regards gillyx
emmastives
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

I like the idea of planning for all possible score results. Good idea agarside.
emmastives
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi welshlady. I had a mastectomy and diep reconstruction six weeks ago. I am waiting for oncologist appointment. Originally surgeon spoke of radiotherapy and hormone therapy but since pathology report there has been a lot of possible chemotherapy. I know at the last team meeting they spoke about me and mentioned the oncto test?. It is quite hard waiting for the appointment with the oncologist as i know it will be another wait to get test results. My tumour was 2.7mm but "multifocal a grade 2. No lymph nodes involved. I am recovering well from mastectomy and am so glad all the cancer has gone. Hope you get some results soon as i know its hard waiting.
welshlady66
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Amanda still waiting on appointment from oncologist it was 4 weeks ago today that I had my last appointment with the surgeon I have got my mind around that I might need chemo its just the waiting x

Agarside
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

So sorry to hear Welshlady, it is always the waiting around.....

I found that reading the research and having a plan in place for each potential "score" helped me in with the waiting, could that help?

Amanda

x

welshlady66
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

That is what I was thinking Agarside but my surgeon said if it was low chance of it coming back then it would most probably be radio therapy and hormone therapy only if it came back medium risk then that would be a decision for me and the oncologist if it were high then it would be chemo , had an appointment at breast clinic on tuesday saw the surgeon and he said nothing about the results and its been over three weeks the breast nurse rung the oncologist to see why I havent had an appointment and they said they hadnt been told if the test had come back so im getting really anxious to what is happening 

 

Agarside
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Welshlady, I am thinking that as you are node positive you will be looking at chemo regardless of oncotyping....
Take care
X
welshlady66
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi I am waiting for the results of oncotype they told me it takes around 10-14 days to come back from America My cancer is IDC grade 2 had lump removed 2.5cm clear margins and two sentinal lymph nodes removed both were positive with quite a bit of tumor in it the second with less was told had to have clearance of level 1 and 2 lymph nodes which were clear but the decided to do the test to see if it would be advisable for me to have chemo so now awaiting results feeling really nervous as so far everything seems to have been against me my lymph nodes looked normal on scan but two were effected they thought it was slow growing but then put me grade 2 stage 3 now have fluid building up but have an infection and on high doses of antibiotic if no change by monday got to go back and have more antibiotics 1000mg four times a day making me feel sick, cant drain the fluid as dont want to make the infection worse, hopefully everyone is having more luck than myself but im still smiling and keeping positive.

Agarside
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi WS,

 

I had this test, it took about 3 weeks to get the test results back.

It basically goes as follows:

0-18 no benefit to having chemotherapy.

31 + Benefits to having chemotherapy

 

19-30 - Grey area, gut instinct and Oncologists experience.  Mine came back as 29, so now 4 cycles in to FEC-T.  I did ask if I needed full 6 cycles as evidence in U.S for some only have 4 cycles.  

 

Good luck and hope for a low score!

Amanda

x

Wandestrong
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi,

 

I had a WLE and SNB at the end of March and lymph nodes and margins were clear. I was diagnosed at Grade 3 and stage 2a and now having the Oncotype test to determine the benefits of Chemo for me, did anyone else have this test? I'm wondering how long it takes to have results?

GreenBeans
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi all, I've just had the results of my Endopredict test come back high and thus have now been told I will need to have chemo... previously my oncologist was erring towards not recommending it for me so I am very happy that I had the test and can be sure chemo is the right decision for me. I had a lumpectomy in early Feb with sentinel nodes removed (micronet found in one). I'm nervous about the chemo but surrounded by lots of wonderful friends and family who are helping me through it, so one step at a time. Very glad to hear that these type of test will soon be offered on the NHS as I found it so helpful.

Agarside
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

I had my results from WLE and Lymph nodes and have been offered this if er/her test comes back +

 

Just been reading and looks interesting

A

x

Joan58
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Lisaad

I was just the same as you. I had a lumpectomy and sentinel node biopsy which showed an 11mm lump which was removed with clear margins and no node involvement. I too have private health care and as a precaution, and because I am ER+ and there was a possibility of also being Her+, my oncologist ordered the oncotypeDX testing. Again my results took 3 weeks to come back but boy am I glad that I was able to have the test.  My results showed a very high score of 78 which meant that my treatment was changed from radiotherapy and hormone tablets to FEC-T 6 sessions. I have just (yesterday) had my third FEC and will commence weekly sessions of 'T' in 21 days. My oncologist has decided to lower the dose of the T and spread it out over more frequent sessions to be able to let my body tolerate it better. However on speaking with the chemo nurses yesterday they said that this regime has been very encouraging and people having this regime have had much less side effects. Hair starts to return on T and generally you do not feel nauseous. Apparently the main problems are with tiredness and neuropathy but spread out over 12 weeks this is much more minimal. How happy and reassured do I feel!!

We can do this and we are on our way to a brighter future with lots more happy memories to make 🙂 Lets kick ass xx

 

lisad
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Catchpole I was offered as a first option to have an Endropredict testing done (this was done under private inasurance and not the NHS) http://myriadgenetics.eu/products/endopredict/ as my oncologist was sure that I would not need need Chemo just radiation.

 

However, after waiting 3 weeks the resultts came back higher than expected hence the need to have chemo which I have just completed my 2nd one.

 

The thing is if I had not had the test done and just radiation would I have exposed myself to the chance of it coming back at a later date?

 

There are so many things to try and cope with all at one time and make maybe sometimes rushed descisions.Woman Sad It's a horrible journey but we will come through it all Heart

Erica37
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Nicole,I requested the Oncotype DX test at my hospital I attend ,and was told it is not currently available . Yet,I am reading on this forum that some hospitals already offer it. Are we all in a post code lottery ? What can I do? With kind regards.
catchpole
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

I think all this thinking has affected my spelling sorry, thats what comes of typing with just the lamp on,. im due for my eye test  but at moment have other things to think about june

catchpole
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

HI Bambam, Im in simiar posittion to you but i started as stage 2 but stage 3 only cause of one thng my surgeon said, in every other way 2, and clear lymph nodes and lumpdectomy ,and they took all nodes anyway ,so im borderline too, Im 67 though but young for my age and with no other health problems.  i live alone and side effects of chemo scare me rigid,  im seeing oncologist on wednesday,onviously prepared to have rads and tablets, ive been like you trying to decide but at moment feel i just dont want to destroy ,my immune system,and dont want chemo.  If ny lymph nodes had been affected would have been different of course,  One of my friends keeps trying to persuade me and giving me horror stories of it coming back. if i dont have chemo ,which i really dont need, My risk if dont was little higher than yours,but not much and jve given up HRT which i was on for years. so that will lower my risk,.  How did you come to final decision, its probably the hardest one having to make own decision, i was so convinced my nodes would be affected, i didnt consider i might have to make decision myself.june  

Carmen42
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Sorbet,
Thanks for thinking of me 🙂
The PICC line was fine, no problems at all.
Center Parcs was fab because my cycle last Monday was postponed as they wanted me to have a heart trace done. I'm booked in for cycle 2 tomorrow after meeting with the oncologist so will have to see what they say regarding my heart!

Hope everything is well with you xx
sorbet
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Carmen

Hope you had a lovely time at Centre Parcs with your family and you didn't suffer too much with SE. Hope PICC went in ok and makes things easier for the chemo. Take care, thinking of you , you can do it!

Love

Sorbet

sorbet
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Bambam

I am so pleased you have had your meeting with your understanding oncologist and you have made decision now and can move on with next aspects of treatment. I agree its great to have decided and wonderful to have the support of your family. Hope radio goes ok and you find tamoxifen ok (if that's the one you'll have) . I have been taking it since Jan 1st and seem fine just hot flushes in night so feel possitive.

Take care

Love Sorbet

Carmen42
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Congratulations Bambam, I think you've made a good decision. Happy that you can avoid chemo!

Take care xx
Bambam53
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Carmen and Sorbet. Thank you so much for your comments and sharing your experiences and decisions. It is always good to hear from other women in similar situations and know that I am not alone. I had my oncology appointment yesterday and i was very nervous to the build up, feeling sick and not being able to eat. I was very lucky as my oncologist went through the adjuvant online, and the extra benefit of having chemo, which was only 2% for me. Already at 92% 10 year positive prognosis. He did not push me towards chemo, so for me it was an easy decision to make. I really felt it wasn't worth the possible extra benefit of 2% for all the awful side effects. He didn't even think it was worth having the Oncotype DX test. As you say everyone is different, but I feel very happy with the decision I have made and feel as if a huge weight has been lifted from my shoulders. I will go for 19 sessions of radiotherapy plus obviously the tablets for 5 years. I have 3 children (1 of which is still dependent on me) who are luckily old enough to chat things through with me, and they all support my decision, and of course my husband. It will be beneficial to all when the Oncotype DX is available from 1st April and will help all women in a similar position make a more confident decision, which can only be a good thing. I wish you all well with your treatment and recovery. This forum is a life line. xx
Carmen42
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Yay more free stuff!!! Thanks for the tip 🙂
sorbet
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Oh that's great re PICC , so glad I had one a great help and made a huge difference.

 

One tip if you want it (I struggled with cling film for many weeks!) you can get special sleeves to cover it to make showering/bathing much easier . Once someone on this lovely forum told me I just rang GP and they sorted prescription straight to pharmacy. Brain failing me think they called Limbo. You have probably heard of  but I hadnt realised you could get on prescription (assuming you now have your free prescrition card) then you can get for free as I certainly didnt want to buy one.

 

Have a great time.

Love

Sorbet

Carmen42
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

🙂
Got a shopping list ready for hubby to get while I'm getting a PICC line put in on Friday. No probs with food this cycle, in fact my appetite has been huge!

Enjoy half term with your little ones, have lots of fun.

Carmen xx
sorbet
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Carmen

That sounds like a great idea re Centre Parks (never been but heard good) also great if hubby can have fun with boys and you can rest! I don't know what food like there so maybe take some things you like, I don't know how you are doing with eating etc so hope you are fine (I found harder as cycles progressed).

 

Anyhow take care and hope next one ok, take one day at a time and plan something fun for your birthday and Summer.

Love

Sorbet

 

Carmen42
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Thanks for your lovely supportive message 🙂

It must have felt great being finished for Xmas. My birthday is in June, so I'm very happy I'll have finished chemo by then and of course should be fighting fit for August school hols!

I'm feeling quite positive about next chemo, we go to Center Parcs straight afterwards... if nothing else at least the boys and hubby will have fun at half term, while I fester in the lodge!!! 😉
sorbet
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Carmen

Thanks for your sweet post, I reckon that despite down side of summer hols it meant had finsihed just before xmas which was good!

My thoughts are with you at the moment, you can do it though ! Hope next rounds ok and if can be of any help let me know, hope you are on monthly thread and get lots of support. Hope you have family and friends to help you with boys .

Take care 

Love

Sorbet

Carmen42
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Sorbet,
I feel for you having to go through chemo during the school summer hols... I find the weekends tiring enough with my 2 boys around!
Glad you got through it ok.

Love Carmen x
sorbet
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Bambam,

I do appreciate and echo your feelings . I had Mastectomy 6th June as found 2 lumps grade 3 , ER+ and PR+ and only tiny micromat in lymph nodes so I was borderline chemo and in July when met with oncologist was told an ideal candidate for ONcotype DX but told he'd just heard it wouldn't be available on NHS. It is a very hard decision, partic as also young (41) like Carmen . Again it was personal choice and very tough decision but several firends (also in medical profession) recommended asking oncologist if I was his wife or daughter what he would do and although I had pretty much already decided to go for it he helped as said would do so. I also wanted to delay it further as starting early August mid school hols with 2 primary school ages kids didn't seem a good idea but was told not to . Hence I started 2 months after surgery. I am now out the other side and although yes it is tough, I won't kid you,  it is do able (and obviously different for everyone) and my feeling now is that I have given myself and family the best chance I can poss have to avoid re occurance. I don't know if any of this will help you as it is a personal decision and the BN nurses etc will support you either way but I wouldn't delay and wait for test as it seems gov keep changing mind on this.

Lots of love in what ever you decide, thinking of you. Take care and do remember there is so much amazing support on this site which certainly got me through it so if you go for it do join monthly thread of those going through at same time.

Love Sorbet

Carmen42
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

Hi Bambam,
I had the oncotype-dx test as my hospital fund it already. I am also IDC grade 3, 17mm ER+, PR+, lymph nodes clear. My test came back as high risk of recurrence so chemo recommended.
Without the test I would have chosen to do chemo anyway. Oncologist said it's down to my personal choice but surgeon and BCN said with grade 3 tumour and my young age (42) they would strongly advise chemo. Also, my hospital advise is to start chemo within 6 weeks of surgery. If I were you I would not wait but make a decision on the facts you already have.

I have had one chemo so far and yes it's tough but it's different for everyone and right now I feel ok about going for my next cycle.

Good luck with your decision, it's not an easy one to make.

Carmen x
Bambam53
Member

Re: Oncotype DX test to be available on NHS for newly diagnosed patients

I am delighted that the Oncotype DX type is going to be available on the NHS. I have my Oncologist Appointment this Tuesday 10Feb. I don't think it is going to be available free until 1st April so I am gutted about that. The current cost is £2,500, which is such a lot of money. I had a lumpectomy on 6 January. IDC Grade 3, lymph node negative, Er+. So i am borderline chemo. Does anyone know what the risks would be in delaying the start of treatment, whether that is chemo or radiotherapy, for 3 months after surgery? I have been told it is a minimum of 2 months anyway, so does another month make a difference? I have been reading alot of posts regarding chemo, and it just sounds so debilitating, it is going to be a tough decision.
Nicole_BCC
Member

Oncotype DX test to be available on NHS for newly diagnosed patients

 

Dr Emma Pennery responds to the announcement that a new test called Oncotype DX, which can predict how beneficial chemotherapy will be for some patients, will be available on the NHS. This infomation may be useful to those who are having to make decisions about chemotherapy.

 

If you would like to see the full statement, Please click here .

 

Best Wishes

 

Nicole Talbot