WARNING VERY LONG POST
Hi everyone,
I’ve been lurking in the background since August and without you all knowing your posts have really helped me along the way.
I received a diagnosis of grade 2 invasive lobular bc on 20th August and it’s been a whirlwind ever since. All of the major decisions have been taken out of my control, for example, I had decided on a lumpectomy (I was originally given a choice) but when I attended an appointment with my consultant I was informed that the decision was taken out of my hands and I had to have a mastectomy due to the location and size of the tumour (they initially thought it was 4 to 4.5cm in size with no evidence of cancer in the lymph nodes). Fast forward 6 weeks and I’ve had my mastectomy, which went very well, and I’m sitting in my consultant’s office again receiving my pathology. Turns out the tumour was in fact 6.5cm and 1 of the 3 lymph nodes removed was cancerous. I was blindsided yet again when my consultant said I would benefit from chemo (we were told I wouldn’t need chemo) due to the size, the lymph node & my age (I’m 43). I’ve had a couple of weeks to process this & I made a plan to help me through my treatment and to feel in control.
I had my initial consultation with my oncologist yesterday and she advised my husband and I (my husband had been at every appointment & ‘blindside’ moment) of the Onco trial. I understand the point of the trial & it makes complete sense ‘why have chemo if you don’t have to?’ but I am so confused and leaning towards the side of chemo. This is the first time my husband and I haven’t been on the same page during this whole process. He understands it is ultimately my decision but he has told me that whilst he will support my decision to have chemo anyway he doesn’t agree with it. I don’t have to make that decision yet but at the moment I feel very much in ‘limbo land’ like I did when I was waiting for my diagnosis.
I felt very pressured at my appointment yesterday and my oncologist noticed so asked my husband to leave to make sure I was happy to go on the trial. I have agreed, reluctantly, but they’ve booked my first chemo session too so that it coincides with the results of the onco test, I don’t even know if I’m eligible yet but looking at what I’ve learned on line I will be. My oncologist also said there is a good chance that the result will come back that I’ll need chemo so this is a moot point.
I have been so positive throughout this whole process that today I just feel I’ve dropped into the depths of despair.
my question is, has anyone had experience of the Oncotype trial? Sorry for such a long post, this is the first time I’ve been able to express myself properly I think.
xx
