Once I had made my decision and the oncologist had agreed with me, my BCN said that she had only had one lady with affected nodes decide against chemo - everyone else had chemo. She wouldn't tell me this before because she didn't want to influence my decision.
All the current published research I could find for the Oncotype Dx test seems to have been done with ladies who have no affected nodes - the research for ladies with 3 or less affected nodes seems to be still ongoing at the moment, but they may well come to the same conclusion? My percentage benefit from chemo was 2.7% so under 3% they don't usually recommend it. However thats 1 woman in every 37 so the odds told me to go for chemo. Others may disagree, but we're all different and in different situations, that was my particular choice.
The 3 cycles of FEC have been OK - I had some vomiting with the first cycle but this is unusual and they certainly sorted out extra medication for the next 2 cycles and they were both OK. The main symptom I've had is fatigue. This gets better as the days go on and by each third week I've felt OK again and had a 'normal' week. I start the T part of chemo next week, so it's back to square one again because it's a different drug with different SE and I don't know how I will react again.
I agree that's it's just awful and I also never thought that I would be on this road. However I'm half way through the chemo now and I just take each day as it comes - every day is one day nearer to the end of treatment.
If you decide to have chemo (or if it's decided for you) you will be OK and you will get through it. We're all in this together.
It's not an easy decision to make, and waiting for the score to come back seems endless, but it does give you time to think, and it needs to be the right decision for you and one you can live with.
Wishing you good luck and let us know how you get on x
Many thanks for your reply and please don't apologise in not replying - us ladies have enough to do without this blasted disease adding to our day!!! It's really kind of you to share your story.
I am in complete agreeance with you on the chemo thing - I am terrified almost of not having chemo with 2 nodes affected as I feel like you that it is already moving.
My consultant has said that the group who meet up to discuss individual cases have all said chemo for me so when I get my results he said we can discuss my fears and concerns (I can also speak to an oncologist). My decision may be taken out of my hands of course if result is high.
I hope your chemo is going ok - I said to my BCN last week - there's never a nice bit with any of this is there?! It is just awful it really is, I never thought I would be on this road in life.
Sending hugs and strength to you xxxx
Sorry for the delay in replying but I've only just seen your post.
I'm almost exactly the same as you and I had the Oncotype Dx Test.
I had an 18mm grade 2 tumour with 1 out of 15 nodes affected (3mm), oestrogen positive, progesterone positive, HER2 negative.
My consultant asked if I wanted to be included in the OPTIMA trial but I asked for the Oncotype Dx test. However I was told that as I had 1 affected node I would have to fund this myself, which I greed to.
My score came back as 10, which is in the low score area. My consultant therefore said no chemo. However I had done quite a lot of research in the meantime. In the OPTIMA trail, which is a blind trial, half the ladies would receive chemo, and the other half would have a test similar to the Oncotype Dx test and depending on the results of the test would either have chemo or not. Therfore, 3/4 ladies in the trial were likely to have chemo. My thinking was if my consultant was happy for me to have chemo as part of the trial then I had doubt in my mind about not having chemo. I discussed it with him and asked him to ask his colleagues what they thought. He asked each of them independently and they all gave the same answer which was this - whilst they wouldn't recommend chemo with that score, neither would they refuse it if the patient wanted it.
In the end I felt I couldn't take the risk due to the one affected lymph node because I felt the cancer was already on the move. Therefore I opted for chemo and have had 3 cycles of FEC-T so far with 3 still to go.
It's really about what decision you can live with and it's such a presonal decision. I have my family around me and they supported whatever decision I made. I just couldn't sleep for worrying until I made my decision and, once I had decided, I felt as though a weight had been lifted off my shoulders.
But that's me and you must do what's right for you. Sorry for rambling on but good luck with your decision and I hope this helps x