Oncotype DX

Hi. It’s a difficult one. I had a score of 11 and I had 1/23 lymph nodes involved. I didn’t have chemo. They said the type of cancer 8/8 oestrogen grade 1 and my low score meant the benefit of chemo didn’t out weigh the risks. I also had LVI (lymph vessel invasion) which I suppose it went to my lymph and I had expected chemo. However all my tests scans etc are ok so they say they caught it in time and no need for chemo. I had a second opinion from a medical and a clinical oncologist and both said no chemo. We have to trust the experts I suppose xx 

Hi, indeed a difficult choice. I would have done anything to avoid chemo (currently going through it) and never really managed to resign myself to the idea, but I do think it’s for the best if it wipes out any lurking cancer cells. I had an oncotype score of 6 so didn’t have chemo (the surgeon said it was the lowest score she had ever seen!). No lymph node involvement. Two years later I had a local recurrence on the scar line from mastectomy. I was told it could just be down to a cell or two not getting removed despite the best of intentions. So now I’m having preventative chemo and obviously wish I had had it two years prior. But like I said, nothing in me would have wanted to do a that! Best of luck with everything. 

So sorry to hear that it returned. Did you have radiotherapy? Isn’t it weird that it took 2 years to come back. I really don’t understand cancer although I know a lot more than I did. Types/grade etc. Is it the same type of cancer as I know someone who had a different type come back. Good luck and I hope the chemo isn’t too bad for you xx

It’s such a complicated business isn’t it! I had no idea either before diagnosis. First time around I had two tumours I think both were ductal, ER+ HER2-, T2 no lymph nodes, grade 2. This time one T1 tumour mixed ductal lobular again ER+ HER2-, grade 3. Consultant said it seemed similar but had some slightly different characteristics. I didn’t have radiotherapy at the time as they said it wasn’t I indicated due to being HER2-. Upon reflection it might have got rid of the cells that came back... but best not to dwell on that! I will be having radiotherapy after chemo. Chemo is pretty tough I have to say! But halfway through so trying to just grit my teeth. I did get a second opinion on chemo with a private practice oncologist and he agreed I should have it and also that it wouldn’t have been indicated the first time around due to low oncotype score. NHS oncologist did mention that oncotype is more for long term recurrence risk, whatever that means. I changed oncologist as I really didn’t get on with her attitude. I do endlessly question what I’ve done wrong lifestyle wise to have the initial cancer and recurrence so have now cut out alcohol and chemical household products, but I feel we can just never know. And yes, we have to trust the doctors! 

Yes I think oncotype is for reoccurrence elsewhere later not in same area. I think alcohol caused mine. Drank too much wine for too long. I now drink zero wine/beer or green tea. Lol. However I do have a drink if a special occasion or going out but I am so aware of it now. I’m off for some winter sun (lol) in a week and will enjoy a relax after this crap year and a G and T. I too watch out with chemicals. I never use to wear rubber gloves but now they are part of my attire. I have decided new year new me. Xx

Hi,

Interesting topic, I too had low Oncotype score, so no Chemo but prior to the oncotype test it was recommended due to tumour size and lymph involvement.  I joined this site after all my treatment had ended but wished I'd known about it earlier as I've learnt so much from reading posts on here.  I'm quite sceptical about the Oncotype DX test, I didn't know at the time mine was sent that only a small amount of the tumour goes off to be tested, there can be admixed cancers in the same tissue, plus I've seen a few ladies reporting they have had a recurrence following a low score, hence my sceptical attitude to it. Obviously chemo brings its own risks. They only give radiotherapy to mastectomy ladies if they don't get clear margins, I had it due to this. Good you are getting it this time. All the best.

Hi. I had a mastectomy with clear margins but had radiotherapy. It seems different hospitals do different things but I think type of cancer grade and size makes them do different things. Mine was 13mm grade 1 but had 1 lymph involved. 
I found at least the Oncotype test was looking at my cancer rather than being an average person on the predict score. 

Hi,

I agree they do different things but, according to my Breast Consultant should all be doing the same and being guided by NICE Guidelines, that doesn't happen you only have to look at this site to realise there is a disparity across the Country.