Hi everyone, I’m hoping to hear from anyone who has been in a similar situation and had to make a difficult decision about chemotherapy.
I’m 47 and was diagnosed with ER-positive, HER2-negative breast cancer. It hadn’t spread to my lymph nodes and I had a mastectomy 9 weeks ago.
I’ve now seen my oncologist and have been told I need to decide whether to have chemotherapy. My Oncotype DX score was 23, which puts me just below the point where my oncologist said she would definitely recommend chemo.
The figures I’ve been given are confusing me a little. If they calculate the benefit using just one of the tumours, chemotherapy would reduce my risk of recurrence by around 3.5% over 15 years. However, when the scores from all four tumours are taken into account, the potential benefit is around 5.5%.
The chemotherapy I’ve been offered is Cyclophosphamide and Docetaxel (TC), given as 4 sessions over 12 weeks. I’ll also be having hormone treatment for 10 years, which will reduce my risk of recurrence too.
One of my biggest concerns is that I have ulcerative colitis, so I’m particularly worried about how chemotherapy could affect my bowel and the potential for infections/sepsis.
My oncologist has been very good and has explained that because my score is 23, rather than 25+, she can’t say that the benefits definitely outweigh the risks. She hasn’t pushed me either way, which I completely understand, but it has left me with a really difficult decision.
I keep going backwards and forwards. Part of me thinks, “I’m only 47, I want to do absolutely everything possible to make sure it doesn’t come back.” But then I look at the relatively small additional benefit from chemotherapy and wonder whether it’s worth putting myself through the treatment and the potential complications, particularly with my colitis.
I’d really appreciate hearing from anyone who has had a similar Oncotype score, particularly around 20–25, and especially anyone who was ER+/HER2-, lymph-node negative and had a mastectomy.
Did you choose chemotherapy? How did you come to your decision, and looking back, are you happy with the choice you made? And if you had Cyclophosphamide and Docetaxel, how did you find it?
I know everyone is different and I’m not looking for anyone to tell me what I should do — I’d just really value hearing other people’s experiences because at the moment I honestly don’t know which way to turn. 
️
Hi EmmaJ
I don’t have the same cancer - mine is TNBC, where chemo is almost always recommended, and where there aren’t widely used tests like oncotype to assess recurrence risk. I really didn’t like the idea of chemo and found it a very difficult decision. I had a small tumour, clear margins, no lymph node involvement. Ultimately what swayed me was the feeling that I wouldn’t be able to forgive myself if I turned it down and then had problems. As it happened my cancer had spread to my liver but I didn’t know it at the time. I had the chemo.
I had 4 cycles of EC where 1 of the drugs is cyclophosphamide, and 4 of Paclitaxel, which is in the same class of drugs as docetaxol. It was ok. I don’t think anyone enjoys chemo but it’s unlikely you will get all the side effects in the leaflets or struggle all the time. I had some diarrhoea, tiredness / achiness, loss of sense of taste, and of course hair loss. But whilst I wanted a nap both days and had a few mornings when I struggled to get up, I got through life fairly normally.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
