High oncotype score


I was diagnosed in June and recently had surgery. I had a 3.5cm tumour, ER and PR+, HER2-, grade 2 / 3 with 2 positive lymph nodes. 

This morning I found out my oncotype result is 39 - this seems so high! I’m struggling to find other posts on the forum where people have had a similarly high result. 

I know this means I’ll have chemo, which I’m sort of prepared for, but I wasn’t prepared for a score that seems so unusually high. Has anyone else had such a high oncotype score?

I’m in a vaguely similar situation…ER+, grade 2, one positive lymph node. Being post menauposal I thought a high Oncotype DX score would be unlikely, but, lo and behold, it is 41 (That’s the score on the original biopsy before staring taking Leztrozole for 5 months before surgery). Like yourself, it is a real surprise to me, and questions abund? Is it one gene or many that are related to the high score? Will chemo be effective after 8 months on Leztrozole, as it slows down the cancer growth?  What will chemo do that Leztrozole is not already doing? But looking at the literature, with that score it looks like chemo will be worthwhile in diminishing the risk of recurrence in the long term. Yet it’s only after talking to the oncologist that I will really be able to make a choice. In the meantime I have a mixture of feelings: impatience (I thought I was getting towards the end of that breast cancer story) and gratitude, because if the Oncotype DX had not been ordered for me I’d be in the dark with regards to my risk of recurrence, and while local recurrence does not frighten me, it’s a different story with distant recurrence.

Yeah there are plenty of people with that high of a score. 21.6% of people had scores higher than 25 which is defined as high risk. It’s scary I know but you need to remember oncotype is not for telling you whether your cancer will come back. It’s to tell you whether you benefit from chemotherapy. Shoot sometimes intermediate scores benefit. I had an intermediate score and chemo was recommended for me. Anyway, a higher score simply means a higher benefit from chemo and that you should do it. That’s it. It doesn’t mean your cancer will come back. 



I was never told my oncotype score, if it was ever done.  My score would have topped the scale! The evidence simply pointed to chemotherapy and radiotherapy being essential, as well as hormone therapy for 10 years, so I can’t help you on the score question. What I did want to say is that these are only statistical models. Each breast cancer diagnosis is unique and statistics don’t allow for that. We are all different, we are not statistics! If you are given a score of 38, that means the chances of it NOT recurring are actually 62. That sounds a bit better. But you don’t know where you fit in, or will ever fit in, and this is something you learn to accept and live with.

My breast care nurse put it very clearly to me: you can put yourself in the ‘It’s going to come back” camp and live a life of anxiety. You can put yourself in the ‘It’s not going to come back’ camp and be content but maybe overlook serious warning signs one day. Or you can jump from camp to camp as the need arises and just enjoy camping and, more important, enjoy life (just accepting that it might come back, but why worry about it till you have to, when it may never happen?). Compare it to crossing the road or driving. We all know we can be hit by a bus at any time but how many of us live a life of anxiety because of that possibility? Very few, I suspect. 

These are early days for you and, I will confess, some of the hardest times because there is so much uncertainty, so much waiting and, for most, so much fear. With the value of hindsight, I can safely say it WILL get easier and you WILL be able to move on without the constant fear. Chemotherapy is manageable and essential if you want greater peace of mind.

I hope your treatment goes well. You might consider joining the chemotherapy starter group (there’s one for each new month) and enjoy the mutual support you get. Take care,

Jan x

Mine is practically the same hoe did you get on