Hi, I have been an avid reader of these forums since I was diagnosed with breast cancer in October 2024 but this is my first post.
I am 51, I had a 7mm IDC, grade 2, ER+ HER2 negative, within a 5cm DCIS area. There was LVI and the sentinel node was found to be positive post mastectomy (6mm). The following axillary clearance found no other positive nodes. My oncotype DX came back with a score of 18 and 7% recurrence rate within 5 years without chemo. The chemo benefit would be 2.6%.
I will not need radiotherapy but my oncologist told me I will need chemo because I am premenstrual (just) and I would have avoided it only if the oncotype score had been very low (<11). She said that for scores higher than that the oncotype dx numbers are not confirmed by big enough studies for premenstrual women with positive nodes.
The oncologist said I will need ‘at least’ the first 4 rounds of the dense dose AC-T or EC-T (she says they are equally effective) but I ‘should’ not need the T part.
I just about got my head around the fact that I need chemo but I do not like this uncertainty over whether the T part is recommended or not. I doubt that at the end of 4 AC/EC cycles I would want to volunteer for 4 more cycles if the the first part is enough?
I have asked for a second opinion but there is a bit of a wait and not sure it is worth waiting.
I would like to know if any of you had similar experiences with an undefined number of chemo cycles and a decision left there for you to take later.
Has anyone done dense dose AC/EC without T?
Thank you!
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Did they use the PREDICT Tool as part of their explanation to you?
This Tool provides clinicians with the statistics for reoccurrence percentages based on the type of cancer - size - grade etc and how the various combinations of treatment (e.g. surgery, chemo, radio ) effect the reoccurrence likelihood.
Ask next time if they could step you through how they reached their decision and if they could show you how their choices in relation to the statistics. The good news is treatment is becoming more and more personalised - there is likely a very good reason based on data of thousands of patients before you which means their choices are best suited and right just for you.
But - it’s your health and it’s your right to understand this so you can set your mindset up for success to best support yourself through treatment.
I’m sure they will take you through their decision process if you ask - frame it as helping you set yourself up mentally to best work through the treatment.
Wishing you the very best.
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Hi Strollingby, no they did not mention the Predict tool. I have heard about it in this forum though. The one I found (v3) does not recommend chemo for me.
The oncologist explained that I was borderline but she recommended it because of the lymph involvement, the LVI, the oncotype score being not too low and especially me being pre-menopausal.
I was convinced by what she said and how she explained it. I am just confused about her recommendation that I should do AC and then it is up to me whether I do the -T part. It sounded like a bit of an ad-hoc solution, ie “let’s do chemo but just one part and once you are at it you might as well do the second part if you want to”.
I have read other people being asked to make choices so maybe it is quite common. It was ok for me to decide which type of breast reconstruction to have but I find it odd to have to decide how much chemo to have.
I will go for a second opinion for piece of mind. Thank you for your reply and your suggestions!
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