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?
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
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?
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
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.
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!
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?
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.
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
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
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. It's a horrible journey but we will come through it all
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
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
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!
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.
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.
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.
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 .
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.
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 .