3 more sleeps until I hope to hear from the hospital following their group meeting and receipt of the full histology report. It’s funny (and boy have I had to find a funny bone or two through this journey) that once again I’m waiting for results or news. I keep running through the last meeting with my consultant where he started the conversation with ‘I don’t believe you need any more surgery, at this time’ and went to to discuss considering mastectomies ?!? Millie and I exchanged confused expressions and listened intently to him then telling us that they had found this ickle DCIS (albeit low grade) and outlined what the course of action would be/have been, if they had found it on its own merit rather than as an aside to my phyllodes tumour. It wasn’t until we got home and researched further what a DCIS was and how it is treated (and whoopi-do there is information on this on normal C websites!) that the conversation and the necessity to discuss mastectomies fell into place. I was however assured by his comment that he believes I don’t need any further surgery at the moment. The very thought of going through it all again fills me with dread – I’ve done it twice and want to get off this fair ride!
But as ridiculous as it sounds, whilst I’m hanging on to the positives (that they believe they have the entire phyllodes tumour and got a clear margin), there’s that nagging in my mind about the DCIS, if they got it all and what this really means. You see if they had found that on its own, MOST people would have surgery to remove it and a clear margin to ensure that it didn’t turn nasty. However my thinking is that I’ve had enough and am going to be closely monitored over the next couple of years so that IF it should turn nasty they will know about it before it takes hold… but is that just me trying to avoid more surgery. Is that what they will recommend when they get the full histology report back and the professionals have seen all the medical info? I don’t know.
There’s also the question of to radiate or not to radiate. As I said earlier there are two schools of thought as to if radiation therapy will reduce the risk of recurrence of a phyllodes tumour. For obvious reasons I want to reduce the risk of recurrence by as much as possible however there are risks to having radiationtherapy in itself. Would radiationtherapy assist with nuking the DCIS also or might it irritate it, if its not been totally removed? My mind’s a-whirling when I should be celebrating that they say they’ve got the phyllodes tumour, but I can’t quite yet, or not all the time.
I also know, sensibly, that my team at the hospital will give me the best possible advice on more surgery or future surgery and that when I have my appointment with the radiation oncologist they will also be able to advise on the risks involved so that I can weigh it up but I can’t help but wonder when it will all be over…