Hi. I had a single mastectomy on 26th November. When I saw my consultant for the results he said that the recommendation for next treatment would be chemotherapy. I had my first appointment with the oncologist today and he said that chemotherapy may not be necessary. He told me about the Oncotype DX test which would indicate if the cancer would respond to chemotherapy or not. However, he also said that there wasn’t extensive testing on this in younger women (I’m 37yo). The results are scored between 0 - 100. If the score is low there may be no benefit to having chemotherapy. If it is high then chemotherapy is recommended.
I am so confused now and don’t really know what to do. I had just started to get my head around having chemo. The oncologist has said that I can have the test done and see what the results are or just go straight in for chemotherapy.
My concern is that if I don’t have chemo any rogue cancer or pre cancerous cells may not be ‘mopped up’. But then if I have chemo and it isn’t of any benefit, I am putting myself through a lot for nothing.
Has anyone had this test? How did you make the decision?
Hi, I had the oncotype test done because I was node positive and a few years ago they would have just done chemo straight away. The test showed that chemo would do more harm from side effects than good so I was reassured it was ok to skip chemo. Like you, I found it very hard to get my head round so much new info at once and I was concerned about stray cells. My oncologist reassured me that the radiotherapy would cleanse the local area and the hormone therapy would be a whole body treatment to see off stray cells. It’s a creepy feeling that there might be bad cells still there but I find I have to go through the logic a few times to rationalise it all - it really helped ringing up my Macmillan nurse to talk me through it more slowly. I would ask your oncologist to explain what are the clinical factors that make them think you could avoid chemo and what other treatments would be offered instead or as well as. If you get a low or high oncotype score then it is a strong guide to whether chemo is needed. You could also ask your oncologist what is the cut off point for deciding whether or not to do chemo if the score is middling and are they factoring in your specific age group. I’ve heard some people say that knowing their oncotype score helped them get through chemo because they knew it was making a difference. It takes about 2 weeks for the results to come back, sometimes a little longer. Hope you can find some support to help you make the decision that’s right for you individually. Do try the helpline too
Hi there. I had the Oncotype DX test after I was diagnosed. And I’m glad I did. My initial biopsy showed my cancer was ER positive receptor however the Oncotype test uncovered I was also her 2 positive therefore my oncologist was able to ensure I also received hercepton - my test came back that I was high risk of reaccurance - so I had chemotherapy, radiotherapy, 18 hercepton and tamoxifen. My so glad they offered me the test as my initial treatment was to be an lumpectomy and radiotherapy. I highly recommend it x
I’ve just come across an old message from you regarding the Oncotype test. I am waiting for the results of the test at the moment and I was curious to find out if you had the test and if so, what were your results and did you have chemo? I was particularly interested because you’re only 37 and I presume premenopausal and as you mentioned I’ve heard it’s not so accurate in premenopausal women?